forgetful but not forgotten: assessment and aspects of treatment...

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Forgetful but not forgotten:assessment and aspects oftreatment of people with dementiaby a specialist old age psychiatryservice

Royal College of PsychiatristsLondonDue for review: 2006

Council Report CR119April 2005

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Contents

Members of the Working Group 4About this report 5Working Group methodology 6Executive summary 91. Diagnostic assessment and investigation 232. Principles of treatment of people with dementia 293. Working with people with dementia in primary care 334. Working with people with dementia and their carers 405. Capacity, legal, financial and risk issues in people with dementia 536. Treatment of cognitive symptoms in people with dementia 617. Treatment of non-cognitive symptoms in people with dementia 678. Non-pharmacological approaches to treating people with dementia 71Appendix: Position statement by the Faculty of the Psychiatry of Old Age

on the use of neuroleptic (antipsychotic) agents in treating olderpeople with dementia 78

References 85

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Members of the Working Group

Dr R. G. Jones (chair)Dr S. BenbowDr R. BullockProfessor A. BurnsDr T. Dening Department of Health (observer)Professor D. JolleyProfessor I. McKeithAmy McPherson Section of Old Age Psychiatry, Nottingham University

(research assistant)

The above group members (from the College’s Faculty of the Psychiatry of OldAge, unless otherwise indicated) initiated the project and led the Consensuson Diagnostic Assessment and Investigation. The remainder of the documentwas produced by the full Working Group, which included the followingmembers:

Clive Evers Alzheimer’s SocietyDr S. Iliffe Reader in Primary Care and general practitioner

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About this report

This report describes good practice in old age psychiatry services working withpeople with dementia and their carers. It began with a focus on diagnosticassessment but has been expanded to look at wider aspects and issues withtreatment. Particular attention is focused on working with primary care and onworking with carers. Against the background of the National Service Frameworkfor Older People, with expected major improvements in services and its plansfor local protocols with primary care on dealing better with problems for peoplewith dementia, the Royal College of Psychiatriasts felt it was important to produceguidance.

The report represents a consensus statement from an Expert Working Groupof the Faculty of the Psychiatry of Old Age. It has been extensively grounded inthe identifiable evidence base and other guidance work where evidence is limited.It has been endorsed by the Faculty of the Psychiatry of Old Age and by theCollege Council.

The College has produced a report on Services for Younger People with Alzheimer’sDisease and Other Dementias (Royal College of Psychiatrists, 2000) and thereforeour report explicitly does not further cover this area – although it thoroughlyendorses such a focus and a need for such service development. Similarly, theCollege strongly advocates joint and interagency working, particularly with socialservices, but these areas are not more fully addressed here.

The report has been produced in collaboration with the Alzheimer’s Society,and with primary care representation, for whose help we are most grateful.

Rob JonesChair, Faculty Working Group

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Working Group methodology

Since the publication of the original Council Report CR49 (Royal College ofPsychiatrists, 1995), the Royal College of Psychiatrists has published EBB Evidence-base briefing: Dementia (Palmer, 1999), to the production of which considerabletime and support were contributed by one of the Working Group members(R.B.) and also by Martin Orrell. The Working Group has extensively used theapproach (and much of the content) of this earlier College work. The approachhas been to rely on synthesised evidence and systematic summaries of publishedevidence. Thus, the searching has stopped at the considerable body of secondarysources. It has not included searches for primary research studies in a systematicway.

Search strategy

The sources searched for information are detailed in Table 1. In certain chaptersspecific sources have been extensively used, for example in the discussions ofthe treatment of cognitive and non-cognitive symptoms.

Searches used the following key words: DEMENTIA, ALZHEIMER’S,GUIDELINES, CONSENSUS, ASSESSMENT, INVESTIGATION, DIAGNOSIS,ELDERLY, MANAGEMENT, PRIMARY CARE, CAPACITY, LEGAL, FINANCIAL,RISK, RISK ASSESSMENT and CARERS.

Strength of the evidence

The grading scale used by the Working Group was the same as that used in theearlier Royal College of Psychiatrists publication (Palmer, 1999), which was itselfbased on that used by the Royal College of General Practitioners. It is summarisedas follows:

*** Based on at least one well-designed randomised controlled trial andrecommended with substantial clinical confidence.

** Based on well-designed cohort or case–control studies and recommendedwith moderate clinical confidence.

* Based on uncontrolled studies, consensus and/or extrapolated from theresearch. May be recommended in certain clinical situations.

– No clearly identified strength of evidence for this specific statement.

Different organisations may produce varying definitions and grades for thestrength of the evidence on which statements they make are based. The grading

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Evidence Source From To

All types Oxamweb at the Centre for Evidence-Based All May 2002Mental Health

Web of Science All May 2002Trent Research Information Access Gateway

(TRIAGE) All May 2002Organising Medical Networked Information

(OMNI) All May 2002

Guideline Agency for Health Care Policy Research All May 2002Scottish Intercollegiate Guidelines Network All May 2002American Psychiatric Association All May 2002Royal College of Psychiatrists library

and CD-ROM: ClinPsyc 1988 May 2002Medline 1991 May 2002In-house collection All May 2002RCPsych Research Unit’s Guidelines Bibliography All May 2002Guideline database All May 2002

Systematic Cochrane Library, including the Database ofreviews Abstracts of Reviews of Effectiveness All 1st qtr 2002

National Health Service Centre for Reviews andDissemination (CRD) publications, e.g. EffectiveHealth Care bulletins and Effectiveness Matters All May 2002

Health Health Technology Assessment Database (at CRD) All May 2002Technology Development and Evaluation Committee reportsAssessments (Committee stood down March 2000) All March 2000

Economic National Economic Evaluationevaluations Database (at CRD) All May 2002

Outcomes UK Clearing House on Health Outcomes All

Critically American College of Physicians 1991 May 2002appraised Evidence-Based Medicine 1995 May 2002research Evidence-Based Mental Health Jan 1998 May 2002summaries Evidence-Based Nursing Jan 1998 May 2002

Evidence-Based Practice Patient-Oriented Evidence that Matters All May 2002

Bandolier All May 2002

Critically Aggressive Research Intelligence Facility All May 2002appraised Critically Appraised Topic Bank All May 2002research National Preferred Medicinessummaries Centre Inc (PreMec) All May 2002

Other Standing Medical Advisory Committee All May 2002Joseph Rowntree Foundation All May 2002Department of Health: Circulars on the Internet All May 2002

Relevant voluntary sector organisations All May 2002

Table 1 Sources searched by the Working Group for this report

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scale above can be used to provide an equivalence for these differing systems(detailed originally in the EBB).

Overwhelmingly the evidence base found, for good practice issues, was of thecategory ‘*’, but these category symbols have only been logged for diagnosticassessment and investigation aspects (Chapter 1).

Primary sources

The remit and funding of the Working Group did not allow searching for primarysources de novo, but the primary sources cited in the secondary sources wereassembled. The expert Working Group membership was therefore able to considerthese and, in particular, consider whether there were additional or better primarysources known to them that could usefully strengthen the evidence.

Opinion from a wider expert group

In its work the Working Group also sought the opinions of the Faculty ExecutiveCommittee Members and of the then Professors of Old Age Psychiatry in theCollege as to how Council Report CR49 (Royal College of Psychiatrists, 1995)might need modification. These views were collated and considered by theWorking Group, which then attempted to incorporate them in its general approachand in any consensus for any specific less certain area.

Areas of practice lacking an evidence base and/or attracting conflicting views

The Working Group identified areas where an evidence base was lacking (orlimited) but where it seemed important that some statement on the range ofacceptable practice be made. With some of these areas it was evident that therewere conflicting views, and in these situations the Group sought to deriveconsensus statements that seemed to be both a reasonable representation of expertview and appropriate to recommend for service practice.

Consensus meetings

In addition to considerable electronic, postal and telephone discussion of theareas of agreement arising from the evidence, the Working Group met for threeday-long meetings in 2001–2002, in order to finalise its consensus work. Particularexperts or expert groups led the process of producing the evidence-basedconsensus for each topic.

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Executive summary

Diagnostic assessment and investigation

Recommendations

The clinical diagnosis of dementia should be based on a standardised systemsuch as ICD–10 or DSM–IV. Attempts should be made to specify underlyingcauses such as Alzheimer’s disease, vascular dementia, dementia with Lewybodies, frontal lobe dementia and normal-pressure hydrocephalus.

Context of the specialist serviceThere should be ready access to a local specialist service which is comprehensive,effective, firmly rooted in the locale and its resources, and which works closelywith local social services, voluntary agencies and with local primary andsecondary health services. Other specialists, particularly geriatric medicine andneurology, may also contribute to the assessment of dementia. The focus is onhelp and support, with family and carers, to retain as much independence for theperson as possible.

The specialist service should deal with all aspects, stages and varieties ofpsychiatric disorder arising in old age, especially with all stages of dementia,including continuing care for people with severe dementia.

Consideration should be given to the needs of different ethnic communities.There should be established easy referral and collaboration between the old

age psychiatry and geriatric medical services.

Specialist service teamThe assessing specialist team should include access to professionals from all thenecessary specialties who are experienced in treating older people, especiallystaff working in community psychiatric nursing, occupational therapy,physiotherapy, clinical psychology, social work and speech therapy.

After initial assessment, the options of further assessment at home, in an out-patient clinic, at a specialist day assessment facility (usually a day hospital) oron an acute assessment ward (usually only necessary when serious behaviouraldisturbance or risk features are present) must be available.

Assessment should be supervised by the consultant old age psychiatrist. Bestpractice is for new cases to be seen by the consultant or a senior doctor of theteam.

Referral and service practiceFor those at home, referral should normally be through (or with the support of)the general practitioner. Easy, early and informative referral should be encouraged.The service should offer urgent (same day) response when necessary. Milder

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cases may be seen in out-patient or memory clinics, with a longer time scaleaccepted, but otherwise (especially with cases requiring home assessment) 2–3weeks is a reasonable upper limit to be agreed.

Good communication with all involved is essential, including with patientsand carers, and including clarification about when the assessment is to be expected.Written communication with the referring doctor is generally provided within aweek of initial assessment, although more urgent telephone/fax communicationmay be necessary.

Clinical assessmentHome assessment should be offered routinely – although the service may decidethat a clinic-based assessment is appropriate with early presentations.

A family/carer (collateral) history should be sought in the assessment of allcases, clarifying the problems and the context, including financial and legalaspects.

An expert mental state assessment must be undertaken to elaborate deficits ofcognitive function, and possible delirium or depressive illness. Use of astandardised assessment of cognitive function, such as the Mini-Mental StateExamination (MMSE), is recommended.

A recent physical examination, looking for aetiological or aggravating factors,with particular attention to neurological examination, is essential for assessment.Other aggravating factors, such as depression compounding dementia, physicalillness in the carer, remediable difficulties in the carer–patient relationship orother social, family or psychological stresses, should be considered.

Services should assess systematically for functional impairment, behaviouralproblems and risk. Other relevant aspects, such as financial capacity and drivingsafety, should be considered.

Clinical investigationThere is now reasonable evidence and consensus about investigations that wouldbe useful with a person with suspected dementia. The following covers bothpossible causes of the dementia syndrome and beneficial general healthassessment of a person with dementia from whatever cause. It will not bepracticable in every case to perform all desirable tests.

The following blood tests are advisable:

• full blood count• erythrocyte sedimentation rate (ESR) or C-reactive protein• vitamin B12

• folate• thyroid function tests• urea and electrolytes• calcium• liver function tests• glucose.

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Blood tests for syphilis, serum lipids and HIV are optional.Simple urinalysis should be performed. An electrocardiogram (ECG) or chest

X-ray should be performed if indicated by significant cardiovascular or respiratorysystem features; consideration should be given to the need for a baseline ECGwhen antidementia drugs are to be used.

Computed tomography and other investigationsAge should not be a bar to receiving a computed tomographic (CT) brain scan,which should be performed with patients in whom it is clearly indicated by thesigns and symptoms of the illness. In milder cases, arguably a scan will discoversome potentially reversible pathologic change. Clear indications for priority forCT scanning include atypical presentation or rapid unexplained deterioration;unexplained focal neurological signs or symptoms; history of recent head injury(before onset); urinary incontinence; or gait ataxia early in the illness.

‘Structural imaging by CT is less costly and faster than magnetic resonance imaging (MRI). Inmost cases, CT is adequate to rule out space-occupying lesions, large strokes, severe atrophy orintracranial haematoma’ (Doraiswamy et al, 1998).

The value of MRI, single photon emission computed tomography (SPECT) orpositron emission tomography remains to be established, but it is clear that bothMRI and SPECT can provide valuable additional information.

Genetic testing is undertaken in certain specialist centres but is not currentlyrecommended for routine assessment.

Electroencephalography may be useful in differential diagnosis, forCreutzfeldt–Jakob disease and frontal lobe dementia.

Further investigation will be indicated in some cases.

Service development

Services should keep under review emerging knowledge on vascular dementiaand on more recently highlighted forms of dementia (including Creutzfeldt–Jakob disease), especially Lewy body dementia.

Services should consider how to collaborate with primary care and others toaddress rising demand to assess early mild cognitive impairment, perhapsthrough developing a memory clinic.

Principles of treatment of people with dementia

Recommendations

People with dementia should have fair access to assessment, care and treatmenton the basis of need, irrespective of age, gender, social or cultural background.

Care for people with dementia should be truly person-centred, taking intoaccount the personal and social context as well as the biological.

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Although there is little substantive evidence for any form of primary prevention,many general health measures will contribute to maintaining the health of peoplewith established dementia.

Training in all aspects of dementia, and in its care and treatment, is hugelyimportant; it should be made as effective as possible and should form part of awider strategy of dementia care quality improvement.

Services for people with dementia should be integrated, properly plannedand adequately resourced.

A patient’s assessment should embrace the identified contextual difficulties,as well as the intrapsychic, historical, interpersonal and societal aspects of thecare situation. The assessment should focus on the patient’s perspective, but allperspectives need to be understood for effective care planning.

Working with people with dementia in primary care

Recommendations – referral guidelines

In the light of the evidence the College recommends that referral to the specialistservice is appropriate when there is:

• complexity or uncertainty about the diagnosis after initial assessment andfollow-up;

• a request by the patient or the family for another opinion;• the presence of significant depression and/or psychosis, especially if

there is no response to treatment, or acute distress in the patient;• treatment problems or the need to consider the new specific medications

for Alzheimer’s disease;• difficulty in patient management due to challenging or risky behaviour,

multiple problems or concerns about possible abuse; or• the need for specialist opinion on issues such as financial capacity,

driving or similar medico-legal areas.

Finally, all people with suspected dementia should have access to a locality-based specialist service for accurate diagnosis.

Recommendations on care issues

Following review of the evidence, and supporting the centrality of the generalpractitioner and team in the care of the older person with dementia at home, andin the support of any carer, the College recommends the following considerations.

Identification• Case finding is recommended rather than population screening.• It is important for the practice to re-assess a person who comes to it anew

with an established dementia diagnosis.• The status of mild cognitive impairment is uncertain at this stage: a

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history of impairment of function is more useful than a simple complaintof subjective memory impairment.

• A carer/collateral history is essential because of the memory problems.• It is important to consider the possibility of treatable depressive illness

(and this may also coexist with a dementia syndrome).• Practitioners should be aware that dementia may be complicated by

psychotic phenomena or may coexist with pre-existing psychiatric disorder.• It is useful to use a standardised cognitive function test to identify (and

possibly to monitor) cognitive impairment. Use of the MMSE is nowsuggested by the National Institute for Clinical Excellence (2001) formonitoring therapy with antidementia drugs, and the six-item CognitiveImpairment Test has been recommended.

Examination and investigation in primary carePhysical history aimed at detecting possible reversible causes or comorbid illhealth is important. It is also important to look for complicating physical illness,especially with behaviour disturbance.

Full blood count, ESR, biochemistry, thyroid function and simple urinalysisare recommended.

DepressionIt is important to look for the possibility of treatable depression mimicking orcompounding dementia, and this may be suggested by a past history, familyhistory or recent negative life events. In such circumstances a trial ofantidepressant treatment should be considered.

Lewy body dementiaIt is important to consider the possibility of dementia with Lewy bodies becauseof the possible therapeutic implications. It is important to avoid using neuroleptic(antipsychotic) drugs in such patients, and to consider the need for specialistreferral.

Managing behavioural disorders in patients with dementiaPhysical causes or acute change in physical problems should always be excludedas an underlying cause for behavioural disorder.

Consideration should be given to non-drug interventions before drug therapyis embarked upon.

The ‘psychological environment’ of the care setting and the attitudes of carersmay be influential in behaviour problems. As far as possible such causes shouldbe treated before considering neuroleptic medication.

Routine use of neuroleptics (or other tranquillisers) to control behaviour indementia should be avoided.

For crisis situations short-term use of neuroleptics (antipsychotics) may bejustified, but these drugs should only be considered when there are serious

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problems, such as psychotic symptoms, serious emotional distress or dangerousbehaviour.

There is no clear evidence that one neuroleptic is superior to another, althoughthe side-effects vary.

‘Start low and go slow’, aiming normally for short-term treatment with regularreviews.

All involved with the care of the patient should be aware of potential side-effects. The routine use of anti-Parkinsonian medication is not indicated.

Neuroleptics should be avoided in patients with dementia with Lewy bodies.

Antidementia drug therapiesDrug therapy should be given in accordance with present National Institute forClinical Excellence (NICE) guidance, which means on the recommendation of anappropriate specialist.

Attention to good control of blood pressure and risk factors for cerebrovasculardisease is beneficial. At present no other treatment has a clearly establishedplace in vascular dementia.

The benefits of specialist referral to consider the usefulness of emergingtreatments should be kept in mind.

FallsPeople with dementia are prone to falls, and to falling again once having fallen,and the risks may be compounded by the unwanted effects of medication. Fallsare more common in those people with dementia who are more physically capable.

Consider referral to an appropriate specialist team if such problems are serious.

Working with carersThere should be special sensitivity to the effects that caring for a person withdementia may have on a caregiver. This is likely to be more related to behaviour,relationship or psychological factors.

Depressive illness is common in such carers, and its treatment should beconsidered.

Carers value acknowledgement of their role, attention to their distress andreceiving information on dementia.

Referral to a carers group and/or a voluntary/self-help group should beoffered (in particular to the Alzheimer’s Society).

Referral for a full carer’s assessment of need from social services, which maylead to respite services and supportive day care or other services, should be offered.

Treatment of sleep problemsPhysical health or environmental factors should be considered. Short-termhypnotic treatment may be necessary with severe persistent insomnia. With suchmedication, the danger of promoting falls or promoting incontinence should beconsidered.

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General follow-up, monitoring and assessmentGeneral practice should remain involved with the management of the personwith dementia and any carer.

Regular review of progress and the appropriateness of management is essential.Review of physical health, and of remediable or potentially remediable problems,is essential.

The general practitioner can have an important role in the monitoring ofantidementia treatments within a shared care protocol, but this may requiresupportive training.

Shared careAll patients referred for specialist assessment potentially may be referred backfor general practice management.

An agreement to share care or monitoring may be justified by the complexityof the problems or management. Appropriate transfer of information is crucial togetting this right.

Regular updates of shared care protocols are essential for the maintenance ofappropriate care of people with dementia.

Psychotic features, behavioural problems, evident difficulty in managing risksor concerns about abuse may particularly justify such shared care.

The NICE guidelines suggest partnership with general practice in managingantidementia drugs.

Working with people with dementia and their carers

Recommendations

Comprehensive assessment of the needs of people with dementia should includeassessment of the needs of their carers.

It is important for service providers not to assume a level of need; rather theyshould work together with the carer and the person with dementia to assesswhat needs are perceived to exist.

It should not be assumed that it is impossible to involve people with dementiain assessments of need; on the contrary, attempts should be made to involve them.

Carers of people with dementia should be provided with full informationabout dementia, its prognosis, treatments, support and services by all agenciesthey are in contact with. This information should be relevant to their needs, becommunicated sensitively and be timely.

Carers can benefit from education programmes, which should be more widelyavailable through statutory and voluntary agencies.

Advocacy services should be available for people with dementia and theircarers, and such services should be aware of possible differences between theinterests of patients and carers.

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Befriending schemes for people with dementia may have benefits for boththe person with dementia and the carers. A randomised trial would be valuableand should be undertaken.

Clinicians should be aware that imparting information to people withdementia and their carers undoubtedly includes elements of counselling.

Clinicians should consider that although psychotherapeutic approaches topeople with dementia may have benefits for both patients and their carers, themost effective use of such resources has not been shown empirically.

Caregiver counselling and support programmes should be researched to seeif they are effective in the UK.

Support groups are a useful adjunct to other services and are a valuablesource of social support to carers, which clinicians should consider.

Despite the lack of evidence from randomised controlled trials for itseffectiveness, respite care should be viewed as an important source of supportto carers of people with dementia.

A range of respite options need to be available, including home care (sittingservices), day care and short-stay respite care.

People with dementia should only be admitted to acute medical wards ifthey have a physical illness requiring such treatment.

There should be a range of alternatives to hospital admission, with servicesable to respond to out-of-hours social needs and emergency situations.

Standards of care in general hospitals must be appropriate for the needs ofpeople with dementia, and staff looking after patients with dementia must becompetent to assess their needs and provide proper person-centred care.

All those working with people with dementia, and their carers, may need toprovide supportive and palliative care as death approaches, and they musttherefore have the competence to do so.

Carers of people with dementia require information about long-term care atan early stage, including details of homes available locally, the process forseeking a placement and information about the likely financial and otherconsequences.

Carers of people with dementia often require ongoing support from servicesafter a person with dementia has moved into long-term care, as there are oftenpractical problems and emotional issues (including feelings of bereavementand guilt) to address.

Carers of people with dementia should be routinely involved in serviceplanning and evaluation. This requires the provision of adequate resources,including transport, for the purpose.

People with dementia should be informed of their diagnosis wheneverpossible. This requires careful explanation using appropriate terms, and time,both when the information is being imparted and subsequently, for reflectionand to answer questions that arise. Information about prognosis needs toimparted with similar care and sensitivity.

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The views of people with dementia regarding the care and services offered tothem should be routinely sought. People with dementia have a valuable part toplay in the design and evaluation of services.

With regard to treatment, the views of people with dementia should be soughtwherever possible. In all cases, the possibility that their perspective might differfrom that of their carers should be borne in mind, although it is also vital toconsider the carers’ views when making treatment decisions.

Training in dementia and its care is needed at many levels, but to be successfulit must be integrated with a general approach to improving quality

Coverage accorded to dementia in health care curricula should be in proportionto its health, social and economic importance.

Capacity, legal, financial and risk issues in dementia

Recommendations for good practice with capacity, legal and financial issues

Points to consider:

• Whether the patient has the capacity to consent to treatment:• if there is capacity, the patient’s wishes must be respected, unless

there is a serious mental health problem for which the use of anorder under the Mental Health Act would be appropriate;

• if there is incapacity, it is good practice to seek the support of thenext of kin/carer for giving treatment for serious physical illnessin the patient’s best interest, as appropriate;

• if a patient is incapable and in need of treatment for mentaldisorder, consideration should be given to the use of compulsionunder mental health legislation.

• Whether financial incapacity issues arise and there is a need to advise thepatient/carer about them.

• Whether there is a need for an enduring power of attorney or the Court ofProtection.

• Whether the Public Trust Office should be approached to authorise asuitable person to manage finances on behalf of an incapable patient withless than £5000.

• Whether an arrangement with a social security office for a person to dealwith these payments on behalf of an incapable patient (Appointeeship) isneeded.

• Whether Agency (collecting pension on behalf of the individual) is needed.• Whether there is the possibility that testamentary capacity might be

impaired, with a consequent need for advice.• Whether Guardianship (under the Mental Health Act 1983 in England and

Wales) could usefully legitimise necessary access to the patient’s home toprovide supportive care.

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• In the UK, patients who drive and are diagnosed with dementia must beinformed of the diagnosis by the specialist and of the necessity for themto report this diagnosis to the Driver and Vehicle Licensing Authority(DVLA). Clinicians should keep themselves updated with respect to theDVLA standards. Other measures may be necessary.

• When a firearms licence (e.g. for a shotgun) is held, consideration shouldbe given to whether capacity issues or mental ill health (and consequentsafety/dangerousness) issues arise which may necessitate a report by thedoctor to licensing authorities as a result of serious public safetyconcerns.

• Resuscitation – the specialist needs to consider the appropriateness ofcardiopulmonary resuscitation for in-patients with dementia and whetherthe patient is capable of taking part appropriately in discussion of this;involvement of the carer also is essential, all the more so if incapacity ispresent.

• Advance directives should be given appropriate consideration and maywell have full legal validity in all the circumstances.

A contentious area is the covert administration of medication to incapablepatients who resist it when it is given openly (incapacitated patients who do notcomply). Treloar et al (2000) found that staff in most long-term care settings resortto this at times, mixing medication in food or drink. They argued that suchactions, although a last resort, are ethically legitimate in exceptionalcircumstances. Common law has to be invoked when the Mental Health Act doesnot apply. They argue that it is important to balance ease of access to goodclinical care against restrictions that aim to prevent abuse.

‘If medication is given covertly, then it should be discussed between the doctor, nurse, pharmacistand relative or advocate, and recorded, so that legal redress is possible. The opportunity forlegal redress is, of course, a key element of the UK Human Rights Act 1998’ (Treloar et al/Jones,2001).

Although there is no consensus in this area yet, it is important that theconsultant addresses the issues and does not simply collude with unexamined,unregulated and poor practice. For nurses the UKCC has issued guidance(UKCC, 2001). Similar considerations arise with what may amount to de factodetention.

Recommendations

• People with dementia should be involved in all decisions affecting theircare and assisted to make whatever decisions they can for themselves.

• Staff who become aware of potential risks should share that informationwith others involved in the person’s care.

• Concerns about risk and actions taken or recommended to minimise riskshould be documented.

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Recommendations

Risk should always be considered during assessment of the patient anddocumented in a standard way (perhaps using a simple instrument). Theresponsibility to record this rests with the initial assessor and subsequently thecare manager. It is useful for such records to show whether risks were identified:

• as part of the assessment• as the care situation subsequently changed• at a later agreed review.

Treatment of cognitive symptoms in people with dementia

Practice guidance recommendations

The prescription of a cholinesterase inhibitor should be considered as onecomponent of the management of Alzheimer’s disease.

No particular set of diagnostic criteria was proposed by NICE. One of thestandard operationalised schemes, such as ICD–10 (World Health Organization,1992), DSM–IV (American Psychiatric Association, 1994) or the National Instituteof Neurological and Communicative Disorders and Stroke and Alzheimer’sDisease and Related Disorders Association (NINCDS–ADRDA) criteria, shouldbe adopted for consistent use within a given service.

The importance of accurate baseline assessment is emphasised since it is againstthis that subsequent judgements about response will be made. Details of theprecise tests to be used were not given in NICE guidance and thus may varyaccording to local practice. The MMSE, which will be performed at baseline,should suffice as a cognitive outcome measure. Other more detailed tests maybe added if desired.

The NICE absolute requirement for an MMSE score greater than 12 at baselineis likely to mean difficult clinical decisions in patients with scores at or belowthis threshold. Due allowance should be made in patients with specific difficultiesleading to inability to cope with the MMSE, such as serious dysphasia.

The views of the patient, carer and clinician should be recorded separately incase notes and a consensus view about global change documented as the basisfor management decisions.

Since it may take 3–4 months to achieve a maintenance dose with somecholinesterase inhibitors, the NICE guidance would suggest that the first follow-up assessment visit might be 6–8 months after baseline. It is suggested that, inpractice, more regular contact will be required for dose titration and side-effectmonitoring. A visit from the community psychiatric nurse and/or telephonecontact may be useful.

If patients show clinically significant deterioration following cholinesteraseinhibitor withdrawal which was instigated solely on the grounds of theirMMSE score having fallen below 12, reinstatement of medication should beconsidered.

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It may be appropriate for clinicians to treat patients with Lewy body dementiaor mixed vascular/Alzheimer’s disease with cholinesterase inhibitors,particularly in patients with behavioural symptoms or global disturbance whichhave proved refractory to other interventions. Such treatment is outside of thelicensed indication. There is no evidence to support the use of cholinesteraseinhibitor in frontal lobe or pure vascular dementia.

There is insufficient evidence to support the use of any medications otherthan cholinesterase inhibitors for treating the cognitive symptoms of dementia.Some patients with dementia may benefit from Gingko biloba extract but sufficientevidence-based efficacy data are lacking. Vitamin E (1000 IU twice daily) maybe considered in an attempt to slow progression of Alzheimer’s disease but itsuse for this purpose has not been licensed. Non-steroidal anti-inflammatorydrugs and oestrogens have not been shown to have symptomatic effects oncognition in Alzheimer’s disease and should not be prescribed for the treatmentof dementia.

Psychosocial interventions and particularly cognitively oriented treatmentmay be helpful to some patients and carers, but do have potential to precipitateor worsen depression, anxiety or frustration. In the absence of clear evidence ofefficacy, such treatment programmes should be considered in the light of thepatient’s cognitive capacity and level of tolerance, and possible adverse effectsof the treatment must be monitored.

Treatment of non-cognitive symptoms in people with dementia

Recommendations with behavioural and psychological symptoms

Thorough assessment to establish the cause of the symptoms is the first essential.Neuroleptic (antipsychotic) agents are appropriate to treat agitation or psychosisin people with dementia where other approaches have failed (Doody et al, 2001).The following recommendations from Howard et al (2001) are supported:

• Non-pharmacological management should always be the treatment offirst choice, examining the antecedents of the behaviour, the behavioursthemselves and the consequences.

• Staff education in homes, carer education and behaviour managementtechniques have all had some success in alleviating agitation andaggression, and should be considered.

• Consider that there is a lack of evidence from controlled trials to supportusing benzodiazepines.

• The use of neuroleptics (antipsychotics) should only follow fullconsideration of the risks as well as benefits.

• Consider that older people are especially sensitive to the common side-effects of antipsychotics.

• Consider that there may be accelerated cognitive decline in Alzheimer’sdisease associated with neuroleptic (antipsychotic) use.

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• Consider that neuroleptic sensitivity can occur particularly in patientswith Lewy body dementia.

• Consider that the evidence shows a modest level of efficacy forneuroleptic (antipsychotic) drugs.

• Consider that there is no demonstrated difference in efficacy, but atypicalagents seem better tolerated.

• Start at the lowest prescribable dosage and carefully monitor for side-effects.• Only continue medication if there is evidence of efficacy.• Review the need for continuing treatment every 3 months.• Consider that for patients in whom neuroleptics (antipsychotics) are

ineffective or not tolerated, carbamazepine or trazodone may beefficacious.

• Consider that if agitation is severe or treatment-resistant, specialistreferral is merited.

Recommendations for the treatment of depression

We support the recommendation of Doody et al (2001) that depression in patientswith dementia may be treated with a selected tricyclic antidepressant, monoamine-oxidase type B inhibitor or selective serotonin reuptake inhibitor, with the side-effect profile guiding the choice of drug.

Non-pharmacological approaches in people with dementia

Recommendations

The recommendations of the American Academy of Neurology (Doody et al,2001) are supported, namely:

• Educational programmes should be offered to families caring for peoplewith dementia, to reduce the burden of care and to postpone institutionaladmission.

• Staff in nursing and residential homes should receive education aboutdementia, aiming to minimise the use of antipsychotic pharmacotherapy.

• Consider the use of behaviour modification, scheduled toileting andprompted voiding to improve urinary continence.

• Functional independence should be improved through the use of gradedassistance, practice and positive reinforcement in activities of daily living.

Further, in relation to non-pharmacological approaches, we recommend thefollowing:

• The various specific and non-specific therapies should continue to bedeveloped and refined, and their place in the spectrum of care beclarified. Components of these approaches should be available within allservices.

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• There is a particular need to increase the availability of training for staffand carers in techniques for coping with memory impairment, and thisneed might best be met by incorporation in the routine activity ofmemory clinics.

• Services should also consider the need for training for staff and carers incoping better with the non-cognitive aspects of dementia.

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1. Diagnostic assessment and investigation

Specialist old age psychiatry services began in the UK during the 1960s. Withspeciality recognition in 1988, they are now in place in almost every healthauthority. Although different styles and models of service have developed,guidance from government and the Royal Colleges has encouraged broadly similarlevels and patterns of provision, with roots in mental health and a consistentrecord of working well with other health and social care agencies for older people.

Services for older people with dementia (and other mental health problems)were addressed by the Audit Commission’s report Forget Me Not (AuditCommission, 2000). Guidelines from the National Institute for Clinical Excellenceencourage responsible prescribing of cholinesterase inhibitors for Alzheimer’sdisease, driving improvement in and equity of access to specialist services. Futuredevelopment and quality improvement will be influenced by the National HealthService (NHS) Plan, particularly through involving users and carers more. TheNational Service Framework for Older People (Department of Health, 2001),alongside that for mental illness (Department of Health, 1999a), was intended toidentify specific standards and milestones for their achievement.

This summary by the Working Group covers both areas shown to be backedby significant evidence/consensus documents (**) and others that the WorkingGroup has simply agreed in consensus as good practice (*).

Recommendations

• The clinical diagnosis of dementia should be based on a standardisedsystem such as ICD–10 (or DSM–IV).

• Attempts should be made to specify underlying causes such asAlzheimer’s disease, vascular dementia, dementia with Lewy bodies,frontal lobe dementia and normal pressure hydrocephalus.

Context of the specialist service*

There should be ready access to a local specialist service which is comprehensive,effective, firmly rooted in the locale and its resources, and which works closelywith local social services, voluntary agencies and with local primary and

This summary by the Working Group covers areas shown to be backed bysignificant evidence/consensus documents (**) and others that the

Working Group has simply agreed in consensus as good practice (*)

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secondary health services. Other specialists, particularly in geriatric medicineand neurology, may also contribute to the assessment of dementia. The focus ison help and support, with family and carers, to retain as much independence aspossible for the person with dementia (Royal College of Psychiatrists, 1995;Palmer, 1999).

The specialist service should deal with all aspects, stages and varieties ofpsychiatric disorder arising in old age, especially all stages of dementia, includingcontinuing care for people with severe dementia (Royal College of Psychiatrists,1995; Royal College of Psychiatrists & Royal College of Physicians, 1998; NewZealand Guidelines Group, 1997; Palmer, 1999).

Consideration should be given to the needs of different ethnic communities.(Royal College of Psychiatrists, 1995; Royal College of Psychiatrists & RoyalCollege of Physicians, 1998; New Zealand Guidelines Group, 1997; Palmer, 1999;Department of Health, 2000, 2001).

There should be established, easy referral and collaboration between the oldage psychiatry and geriatric medical services (Royal College of Psychiatrists,1995; Royal College of Psychiatrists & Royal College of Physicians, 1998; NewZealand Guidelines Group, 1997; Palmer, 1999).

Specialist service team**

The assessing specialist team should include access to professionals from all thenecessary specialties who are experienced in treating older people, especiallystaff working in community psychiatric nursing, occupational therapy,physiotherapy, clinical psychology, social work and speech therapy* (no evidence– consensus good practice; Royal College of Psychiatrists, 1995; Palmer, 1999).

After initial assessment, the options of further assessment at home, in an out-patient clinic, at a specialist day assessment facility (usually a day hospital) oron an acute assessment ward (usually only necessary when serious behaviouraldisturbance or risk features are present) must be available*, ** (Clarfield, 1991;American Academy of Neurology, 1994; Small et al, 1997; Frank, 1998; Pattersonet al, 1999; Working Party consensus).

Assessment should be supervised by the consultant old age psychiatrist. Bestpractice is for new cases to be seen by the consultant or a senior doctor of theteam** (American Academy of Neurology, 1994; Agency for Health Care Policyand Research, 1996; American Psychiatric Association, 1997; Centre for HealthServices Research, 1998; Working Party consensus).

Referral and service practice*

For those at home, referral should normally be through (or with the support of)the general practitioner. Easy, early and informative referral should beencouraged.

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The service should offer urgent (same day) response when necessary. Peoplewith milder disorders may be seen in out-patient or memory clinics, with alonger time scale accepted, but otherwise (especially in cases requiring homeassessment) 2–3 weeks is a reasonable upper limit to be agreed.

Good communication with all involved is essential, including with patientsand carers, and including clarification about when the assessment is to be expected.Written communication with the referring doctor is generally provided within aweek of initial assessment, although more urgent telephone/fax communicationmay be necessary.

Clinical assessment**

Home assessment should be offered routinely – although the service may decidethat a clinic-based assessment is appropriate with early presentations*, ** (Melzeret al, 1994; Agency for Health Care Policy and Research, 1996; American PsychiatricAssociation, 1997; Centre for Health Services Research, 1998; Audit Commission,2000; Working Party consensus).

A family/carer (collateral) history should be sought in the assessment of allcases, clarifying the problems and the context, including financial and legalaspects*, ** (O’Connor et al, 1989; Agency for Health Care Policy and Research,1996; Jorm et al, 1996; Centre for Health Services Research, 1998; Patterson et al,1999; Working Party consensus).

An expert mental state assessment must be undertaken to elaborate deficits ofcognitive function, and possible delirium or depressive illness. Use of astandardised assessment of cognitive function such as the Mini-Mental StateExamination (MMSE; Folstein et al, 1975) is recommended*, ** (Uhlmann & Larson,1991; Rouleau et al, 1992; Crum et al, 1993; American Academy of Neurology,1994; Melzer et al, 1994; Agency for Health Care Policy and Research, 1996;American Psychiatric Association, 1997; Small et al, 1997; Esteban-Santillan et al,1998; Fillit & Cummings, 1999; Patterson et al, 1999; Working Party consensus).

A recent physical examination, looking for aetiological or aggravating factors,with particular attention to neurological examination, is essential for assessment*,

** (Melzer et al, 1994; Agency for Health Care Policy and Research, 1996; AmericanPsychiatric Association, 1997; Centre for Health Services Research, 1998; Pattersonet al, 1999; Working Party consensus).

Other aggravating factors, such as depression compounding dementia, physicalillness in the carer, remediable difficulties in the carer–patient relationship orother social, family or psychological stresses, should be considered*, ** (Melzer etal, 1994; Agency for Health Care Policy and Research, 1996; American PsychiatricAssociation, 1997; Small et al, 1997; Patterson et al, 1999; Audit Commission, 2000;Working Party consensus).

Services should assess systematically for functional impairment, behaviouralproblems and risk*, ** (Agency for Health Care Policy and Research, 1996;

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American Psychiatric Association, 1997; Small et al, 1997; Patterson et al, 1999;Audit Commission, 2000; Working Party consensus). Other relevant aspects, suchas financial capacity and driving safety, should be considered.

Clinical investigation**

There is now reasonable evidence and consensus about investigations that wouldbe useful in the case of a person with suspected dementia. The following coversboth possible causes of the dementia syndrome and beneficial general healthassessment of a person with dementia from whatever cause. It will not bepracticable in every case to perform all desirable tests.

Blood tests

The following blood tests are advisable:

• Full blood count*, ** (Clarfield, 1991; American Academy of Neurology,1994; American Psychiatric Association, 1997; Centre for Health ServicesResearch, 1998; Doraiswamy et al, 1998; Frank, 1998; Fillit & Cummings,1999; Foster et al, 1999; Patterson et al, 1999; Working Party consensus).

• Erythrocyte sedimentation rate (ESR)*, ** (American Academy ofNeurology, 1994; American Psychiatric Association, 1997; Centre forHealth Services Research; Doraiswamy et al, 1998; Fillit & Cummings,1999; Foster et al, 1999; Patterson et al, 1999; Working Party consensus)or C-reactive protein (CRP)*, ** (American Academy of Neurology, 1994;Small et al, 1997; Patterson et al, 1999; Working Party consensus).

• Vitamin B12 *, ** (American Academy of Neurology, 1994; American

Psychiatric Association, 1997; Small et al, 1997; Centre for HealthServices Research, 1998; Doraiswamy et al, 1998; Fillit & Cummings,1999; Foster et al, 1999; Patterson et al, 1999; Working Party consensus).

• Folate*, ** (American Academy of Neurology, 1994; AmericanPsychiatric Association, 1997; Small et al, 1997; Centre for HealthServices Research, 1998; Doraiswamy et al, 1998; Fillit & Cummings,1999; Foster et al, 1999; Patterson et al, 1999; Working Party consensus).

• Thyroid function tests*, ** (Clarfield, 1991; American Academy ofNeurology, 1994; American Psychiatric Association, 1997; Small et al,1997; Centre for Health Services Research, 1998; Doraiswamy et al, 1998;Frank, 1998; Fillit & Cummings, 1999; Foster et al, 1999; Patterson et al,1999)

• Urea and electrolytes*, ** (Clarfield, 1991; American Academy ofNeurology, 1994; American Psychiatric Association, 1997; Small et al,1997; Centre for Health Services Research, 1998; Doraiswamy et al, 1998;Frank, 1998; Fillit & Cummings, 1999; Foster et al, 1999; Patterson et al,1999; Working Party consensus).

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• Calcium*, ** (Clarfield, 1991; American Academy of Neurology, 1994;American Psychiatric Association, 1997; Small et al, 1997; Centre forHealth Services Research, 1998; Doraiswamy et al, 1998; Frank, 1998; Fillit& Cummings, 1999; Foster et al, 1999; Patterson et al, 1999; Working Partyconsensus).

• Liver function tests*, ** (American Academy of Neurology, 1994; Small etal, 1997; Patterson et al, 1999; Working Party consensus).

• Glucose*, ** (Clarfield, 1991; American Academy of Neurology, 1994;American Psychiatric Association, 1997; Small et al, 1997; Centre forHealth Services Research & Department of Primary Care, 1998;Doraiswamy et al, 1998; Frank, 1998; Fillit & Cummings, 1999; Foster et al,1999; Patterson et al, 1999; Working Party consensus).

Blood tests for syphilis*, ** (American Academy of Neurology, 1994; Small etal, 1997; Patterson et al, 1999; Working Party consensus), serum lipids and HIVare optional.

Urinalysis

Simple urinalysis*, ** (American Academy of Neurology, 1994; Small et al, 1997;Patterson et al, 1999; Working Party consensus) should be performed.

Electrocardiogram, chest X-ray

Electrocardiography and chest X-ray*, ** (Melzer et al, 1994; Agency for HealthCare Policy and Research, 1996; American Psychiatric Association, 1997; Small etal, 1997; Centre for Health Services Research, 1998; Patterson et al, 1999; WorkingParty consensus) should be performed if indicated by significant cardiovascularor respiratory system features; consideration should be given to the need for abaseline electrocardiogram when antidementia drugs are to be used (Cummings,2000; Royal College of Psychiatrists, 2004).

Brain imaging

Computed tomography (CT) scans*, ** (Clarfield, 1991; Chui & Zhang, 1997;Doraiswamy et al, 1998; Freter et al, 1998; Fillit & Cummings, 1999; Foster et al,1999; Patterson et al, 1999; Working Party consensus) should be performed withpatients in whom it is clearly indicated by the signs and symptoms of the illness.Age should not be a bar. In an ideal world, every patient with suspected dementiashould receive a CT scan. In milder cases, arguably this will discover somepotentially reversible pathologic changes. Clear indications for priority for CTscanning include atypical presentation or rapid unexplained deterioration;unexplained focal neurological signs or symptoms; history of recent head injury(before onset); or urinary incontinence or gait ataxia early in the illness (Waldemaret al, 2000; Knopman et al, 2001).

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‘Structural imaging by CT is less costly and faster than MRI. In most cases, CT is adequate torule out space occupying lesions, large strokes, severe atrophy or intracranial haematoma’(Doraiswamy et al, 1998)*, **

The value of magnetic resonance imaging (MRI), single photon emissioncomputed tomography (SPECT) or positron emission tomography remains to beestablished, but it is clear that MRI and SPECT can both provide valuableadditional information (Waldemar et al, 2000; Knopman et al, 2001).

Genetic testing

Genetic testing is undertaken in certain specialist centres but is not currentlyrecommended for routine assessment.*

EEG

Electroencephalography may be useful in differential diagnosis (for Creutzfeldt–Jakob disease and frontal lobe dementia)*, ** (Waldemar et al, 2000; Knopman etal, 2001).

Further investigation will be indicated in some cases*, ** (Waldemar et al, 2000;Knopman et al, 2001).

Service development*

Services should keep under review emerging knowledge on vascular dementiaand on more recently highlighted forms of dementia (including Creutzfeldt–Jakob disease), especially Lewy body dementia* (McKeith et al, 1999; Ballard etal, 2000).

Services should consider how to collaborate with primary care and others toaddress rising demand to assess early mild cognitive impairment (Petersen et al,1999; Ritchie & Touchon, 2000), perhaps through developing a memory clinic.*

These approaches and the evidence quoted to support them are furtherstrengthened by the reviews of the Scottish Intercollegiate Guidelines Network(1998) and of the American Academy of Neurology (Doody et al, 2001; Knopmanet al, 2001).

Other important literature considered

Other literature considered includes Beck & Shue (1994), Chui & Zhang (1997),Cohen (1994), Department of Health (2000), Duncan & Siegal (1998), Freter et al(1998), Geldmacher & Whitehouse (1996), Hodkinson (1972), Lord Chancellor’sDepartment (1999), Medical Research Council Cognitive Function and AgeingStudy (1998), Millan & Committee Report (2000), Pattie & Gilleard (1975), Rouleauet al (1992), Scottish Executive (1999), Trickey et al (1998) and Uhlmann & Larson(1991).

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2. Principles of treatment of people with dementia

This section sets out certain general themes that can be regarded as principlesunderlying the assessment, care and treatment of people with dementia, and theprovision of support to their carers.

Equity and avoiding ageism

The term ‘ageism’ covers a range of unfavourable attitudes towards older people.There is also age discrimination, through which people are excluded, for examplefrom treatments or services, solely by virtue of their age. This form ofdiscrimination is not illegal in the UK, in contrast to discrimination on the groundsof gender, race or disability. However, in England and Wales the National ServiceFramework for Older People (Department of Health, 2001) aims to root out agediscrimination, with services to be provided on the grounds of clinical or socialneed, irrespective of age.

It is also of paramount importance that people with dementia have fair accessto services, irrespective of other factors. Particular attention needs to be paid toensuring access by people from ethnic minority groups.

Person-centred care

Someone with dementia is an individual person with a personal history and asocial and cultural context, all of which should be recognised and valued(Kitwood, 1997). The National Service Framework sets out the following advicefor person-centred care for older people, all of which is very apt for dementia(Department of Health, 2001):

• listen to older people;• respect dignity and privacy;• recognise individual differences and specific needs, including cultural

and religious differences;• enable older people to make informed choices, involving them in all

decisions about their needs and care;• provide coordinated and integrated service responses;• involve and support carers whenever necessary.

Health promotion

A detailed account of health promotion and the possible impact of preventivemeasures on the incidence of dementia is beyond the scope of this report.However, it is likely that measures to improve general health in populations,

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and among older people in particular, have an effect on the occurrence andcourse of illnesses that cause dementia. The most obvious example iscardiovascular disease and the rates of vascular dementia. It is likely that generalhealth measures, such as better diet, smoking cessation and moderation in alcoholconsumption, can be significant measures in the prevention of dementia, althoughat present evidence for any primary preventive effects is scanty.

Health promotion among people who have developed dementia is alsoimportant (see Chapter 3). People with dementia should receive careful attentionto their general health. Those who retain capacity should be encouraged toparticipate in health screening programmes such as mammography. Rationalprescribing and regular review of medication can do much to prevent newproblems arising from drug side-effects and interactions.

Training

The training implications of working with people with dementia and their carersare discussed in more detail in the relevant section, but all the sections of thisguidance indicate a need for more training in various areas, from primary carethrough general hospital services to specialist dementia services, not to mentionstaff working in social care, and also for carers and users of services. There is aneed for training to be of the right quality; and, to be effective, it needs to becoupled with an overall strategy aimed at improving the quality of dementiacare.

Services

Various aspects of the services required for the assessment, diagnosis, treatmentand care of people with dementia, and the provision of support to their carers,are discussed throughout this report. Although there is current optimism aboutnew treatments, the vast bulk of the monetary cost of dementia is spent on formsof supportive care, including informal care (Lowin et al, 2001). Thus, the way inwhich services are organised and delivered will have a major impact upon thenature and quality of care received by people with dementia and their carers.Local services for people with dementia need to be adequately resourced andwell organised, with a clearly agreed multi-agency local strategy for servicedevelopment and clear protocols for referrals and management. This includesspecialist multidisciplinary teams as set out in the National Service Frameworkfor Older People (Department of Health, 2001).

Comprehensive assessment

Assessment should encompass the overall care situation and particularly shouldinclude the following aspects.

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Context

Paramount in the picture should be the context and perspective of the patient,rather than the views of the assessor, of other care workers or of the family. Importantconsiderations include whether the person lives alone or with a spouse, how closeis the nearest support and the safety of the dwelling situation. Other key factorsare the coping and attributional styles of any carers, and their mental health.

Difficulties

It is important to assess the deficits the patient exhibits and the consequentdifficulties created. These will be evident from physical examination, frompsychiatric examination and from cognitive, functional and behavioural assessment.

Intrapsychic factors

The service should evaluate the responses of patients to their situation – bothadaptive and maladaptive. Inappropriate refusal of help may have reasons thatcan be understood and worked with.

Effects of the past

Part of the assessment should be a detailed history, as this can reveal past eventsthat affect the current care situation and how it has developed. Past ways ofresponding may be repeated, and family dynamics need to be understood.

Interpersonal factors

Assessments should clarify how patients get on with those around them. Maritaland other premorbid relationships may determine the limits to possible care athome, as may, for instance, gaps in age between patients and paid carers, both athome and in residential care.

Societal considerations

Assessment should be sensitive to the local reaction to the situation, as the values,possible ageism and capacity to help in the neighbouring community may determineresponses, and how risk is interpreted. Again, however, actions must be in thepatients’ best interests, rather than primarily in the interests of those around them.

Recommendations

• People with dementia should have fair access to assessment, care andtreatment on the basis of need, irrespective of age, gender and social orcultural background.

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• Care for people with dementia should be truly person-centred, takinginto account the personal and social context as well as biological factors.

• Although there is little substantive evidence for any form of primaryprevention, many general health measures will contribute to maintainingthe health of people with established dementia.

• Training in all aspects of dementia, and in its care and treatment, ishugely important; it should be made as effective as possible and shouldform part of a wider strategy of dementia care quality improvement.

• Services for people with dementia should be integrated, properlyplanned and adequately resourced.

• A patient’s assessment should embrace the identified contextualdifficulties, as well as the intrapsychic, historical, interpersonal andsocietal aspects of the care situation.

• The assessment should focus on the patient’s perspective, but allperspectives need to be understood for effective care planning.

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3. Working with people with dementia in primarycare

Referral

The evidence base for referral guidelines is limited and there is no evidencefrom randomised controlled trials. The following is the best-supportedformulation; it is adapted from the Canadian Consensus Conference on Dementiarecommendations (Patterson et al, 1999) but also incorporates suggestions fromother references (listed below).

Guideline

People with suspected dementia will usually be assessed by their generalpractitioner and much of the management of their dementia will also be throughprimary care services. However, in some cases, referral to specialist medicalservices will be appropriate. Some of these circumstances are:


• request by the patient or the family for another opinion;• the presence of significant depression, especially if there is no response to

treatment, or acute distress in the patient;• treatment problems, or failure with new specific medications for

Alzheimer’s disease, or difficulties in patient management due to (forexample) challenging or risky behaviour;

• where caregiver support and/or respite care is needed;• where there is a need to involve other health care professionals, voluntary

agencies or other specialist services;• when genetic counselling is indicated;• when research studies into diagnosis or treatment are being carried out

(Grade B Level 3 in Patterson et al, 1999).

This also incorporates suggestions from the Agency for Health Care Policyand Research (1996), Alzheimer’s Disease Society (1995), Clarfield (1991), Haines& Katona (1992), Palmer (1999) and US Department of Veterans Affairs & UniversityHealth System Consortium (1997). (Other supportive references for this guidelineare listed below, but no strength of evidence ratings are given in this document.)However, this guideline uses language and describes some circumstances thatare applicable in North American (and perhaps New Zealand) practice and areless appropriate for the UK setting. Thus, the first two sentences of the guidelinewould be better phrased for the UK, especially from a primary care perspective(Iliffe & Drennan, 2001), as:

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‘The clinical suspicion that an individual has some form of dementia is likely to arise first inconsultations with the general practitioner, although family members or friends may havebegun to think about this possibility beforehand. Subsequent care is provided in different waysin different places, depending on the interest and skills of general practitioners, the existence ofsupportive voluntary organisations, the availability of community psychiatric nurses and theresources and organisation of social care.’

Similarly, the appropriate circumstances for referral would differ slightly inthe UK, thus:

• National Institute for Clinical Excellence (NICE) guidance is that allpatients with an early diagnosis of Alzheimer’s disease should be seen byspecialists to initiate cholinesterase inhibitor treatment;

• caregiver support and/or respite care would be seen as a social careresponsibility as much as a medical one;

• involvement of other health care professionals, social services orvoluntary agencies should occur in all cases where this is appropriateand should not depend on or require referral to specialist services.

In 2001 the National Service Framework for Older People (Department ofHealth, 2001) for England and Wales stated that referral to the specialist mentalhealth service should be considered for those with suspected dementia:

• if diagnosis is uncertain;• if certain behavioural and psychological symptoms are present, for

example aggressive behaviour;• if there are safety concerns, for example if an older person is wandering;• for risk assessment, for example if an older person is thought to be at risk

of abuse or self-harm;• if there is a need for specialist assessment of dementia, for example

testamentary capacity or driving;• for consideration of treatment of antidementia drugs in accordance with

local protocols;• if the older person has complex or multiple problems, for example, where

an older person needs specialist methods of communication owing tosensory impairments;

• where there is dual diagnosis, for example, possible dementia andlearning disability or dementia and other severe mental disorders(Department of Health, 2001).

An evidence base for this statement is not given, but mostly these points seemconsistent with the formulation adapted from Patterson et al (1999).

Recommendations

In the light of the evidence, the College recommends that referral to thespecialist service is appropriate when any of the following six circumstancesobtain:

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• a request by the patient or the family for another opinion;• the presence of significant depression and/or psychosis, especially if

there is no response to treatment, or acute distress in the patient;• treatment problems or the need to consider the new specific medications

for Alzheimer's disease;• difficulty in patient management due to challenging or risky behaviour,

multiple problems or concerns about possible abuse;• there is a need for specialist opinion on issues such as financial capacity,

driving or similar medico-legal areas.

Finally, all people with suspected dementia should have access to a locality-based specialist service for accurate diagnosis.

Care issues

With current secondary sources some guidance exists on:

• general clinical management• management of psychosis and agitation• management of sleep problems• physical screening of a person with dementia• general follow-up, monitoring and assessment• medication• service provision: primary care• management of behavioural disturbances• treatments• management of depression in patients with dementia• behavioural disorders• falls• antidementia drug therapies.

None of this provides randomised controlled trial or evidence-based guidancespecifically tested in or arising from the primary care setting, as opposed toexpert opinion, and it is not specific either to joint working between primarycare and specialist services.

An important aspect is that there is currently no system for documentingcarers in general practice information systems, which are completely patient-focused. Information technology systems need to be adapted to enable suchcarer issues to be addressed.

Recommendations

These guidelines lean heavily on others, especially the North of England evidence-based guideline development project (Centre for Health Services Research, 1998),

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the New Zealand Guidelines (New Zealand Guidelines Group, 1997) and theScottish Intercollegiate Guidelines Network (1998), to which gratefulacknowledgement is given.

Following review of the evidence, and supporting the centrality of the generalpractitioner and team in the care of the older person with dementia at home andin the support of any carer, the College recommends the following considerations(based as noted on the evidence or consensus cited).

IdentificationCase finding is recommended rather than population screening (Iliffe et al, 1994,2002; Brayne et al, 1995; Tobiansky et al, 1995; Centre for Health Services Research,1998).

It is important for the practice to re-assess a person who comes to it anew withan established dementia diagnosis (Working Group consensus).

The status of mild cognitive impairment (Ritchie & Touchon, 2000) is uncertainat this stage: a history of impairment of function is more useful than a simplecomplaint of subjective memory impairment (American Psychiatric Association,1987; Agency for Health Care and Policy Research, 1996; Graham et al, 1996;Centre for Health Services Research, 1998; Larson et al, 1998; Medical ResearchCouncil Cognitive Function and Aging Study, 1998; Patterson et al, 1999).

A carer/collateral history is essential because of the memory problems(O’Connor et al, 1989; McGlone et al, 1990; Koss et al, 1993; Patterson et al, 1999).

It is important to consider the possibility of treatable depressive illness (andthis may also coexist with a dementia syndrome) (Burns et al, 1990b; AmericanPsychiatric Association, 1997; Small et al, 1997; Centre for Health Services Research,1998; Scottish Intercollegiate Guidelines Network, 1998; Patterson et al, 1999;Waldemar et al, 2000).

Practitioners should be aware that dementia may be complicated by psychoticphenomena or may coexist with pre-existing psychiatric disorder (Ciompi, 1985;Cummings et al, 1987; Rubin et al, 1988; Burns et al, 1990a,b; Campbell, 1997).

It is useful to apply a standardised cognitive function test to identify (andpossibly to monitor) cognitive impairment (Koss et al, 1993; Bowers et al, 1990;O’Connor et al, 1993; Centre for Health Services Research, 1998). The Mini-MentalState Examination (MMSE; Folstein et al, 1975) is now suggested by the NationalInstitute for Clinical Excellence (2001) as a suitable test for the monitoring ofantidementia drugs, and the six-item Cognitive Impairment Test (Brooke &Bullock, 1999) has been recommended.

Examination and investigation in primary carePhysical history aimed at detecting possible reversible causes or comorbid illhealth is important. It is also important to look for complicating physical illness,especially with behaviour disturbance (Bayer et al, 1987; Siu, 1991; Centre forHealth Services Research, 1998; Doraiswamy et al, 1998; Fillit & Cummings, 1999;Patterson et al, 1999; Waldemar et al, 2000).

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Full blood count, ESR, biochemistry, thyroid function and simple urinalysishave been recommended (Bayer et al, 1987; Siu, 1991; Centre for Health ServicesResearch, 1998; Doraiswamy et al, 1998; Fillit & Cummings, 1999; Patterson et al,1999; Waldemar et al, 2000).

DepressionIt is important to look for the possibility of treatable depression mimicking orcompounding dementia, and this may be further suggested by a history of thiscondition, a family history or recent negative life events (Burns et al, 1990c;American Psychiatric Association, 1997; Small et al, 1997; Centre for Health ServicesResearch, 1998; Scottish Intercollegiate Guidelines Network, 1998; Patterson et al,1999; Waldemar et al, 2000).

In such circumstances a trial of antidepressant treatment should be considered(Small et al, 1997; Centre for Health Services Research, 1998; Doody et al, 2001).

Lewy body dementiaIt is important to consider the possibility of dementia with Lewy bodies becauseof the possible therapeutic implications (Knopman et al, 2001).

It is important to avoid using neuroleptic drugs in such patients (and considerthe need for specialist referral: McKeith et al, 1992).

Managing behavioural disorders in patients with dementiaPhysical causes or acute change in physical problems should always be excludedas an underlying cause for behavioural disorder (Beck & Shue, 1994; Nilsson etal, 1998; Patterson et al, 1999).

Consideration should be given to non-drug interventions before drug optionsare embarked upon (Allen-Burge et al, 1999; Proctor et al, 1999; Terri et al, 2000;Howard et al, 2001).

The ‘psychological environment’ of the care setting and the attitudes of carersmay be influential in behaviour problems (Kitwood & Bredin, 1992; Allen-Burgeet al, 1999). As far as possible, such causes should be treated before consideringneuroleptic prescription (Kitwood & Bredin, 1992; Allen-Burge et al, 1999; Proctoret al, 1999; Terri et al, 2000; Howard et al, 2001).

Routine use of neuroleptics (or other tranquillisers) to control behaviour indementia should be avoided (McKeith et al, 1992; McGrath & Jackson, 1996;McShane et al, 1997; Howard et al, 2001).

For crisis situations short-term use of neuroleptics (antipsychotics) may bejustified but these drugs should only be considered when there are seriousproblems, such as psychotic symptoms, serious emotional distress or dangerousbehaviour (Centre for Health Services Research, 1998; Ballard & O’Brien, 1999;Doody et al, 2001; Howard et al, 2001).

There is no clear evidence that one neuroleptic is superior to another, althoughthe side-effects vary (De Deyn et al, 1999; Katz et al, 1999; Street et al, 2000).

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‘Start low and go slow’, aiming normally for short-term treatment with regularreviews (Howard et al, 2001).

All those involved with the care of the patient should be aware of potential side-effects (Centre for Health Services Research, 1998). The routine use of anti-parkinsonian medication is not indicated (Centre for Health Services Research, 1998).

Neuroleptics should be avoided in patients with dementia with Lewy bodies(McKeith et al, 1992).

Antidementia drug therapiesAntidementia drugs should be given in accordance with present NICE guidance(National Institute for Clinical Excellence, 2001), which means on therecommendation of an appropriate specialist.

Attention to good control of blood pressure and risk factors for cerebrovasculardisease is beneficial (Antiplatelet Trialists’ Collaboration, 1994; Centre for HealthServices Research, 1998). At present no other treatment has a clearly establishedplace in vascular dementia (Doody et al, 2001).

The benefits of specialist referral to consider the usefulness of emergingtreatments should be kept in mind (Department of Health, 2001).

FallsPeople with dementia are prone to falls, and to falling again once having fallen,and the risks may be compounded by the unwanted effects of medication (Meltonet al, 1994; Asada et al, 1996; Nuffield Institute for Health & NHS Centre forReviews and Dissemination, 1996). Falls are more common in people withdementia who are more physically capable.

Consider referral to an appropriate specialist team if such problems are serious(Department of Health, 2001).

Working with carersThere should be special sensitivity to the effects that caring for a person withdementia may have on a caregiver (Parks & Pilisuk, 1991; Stephens et al, 1991;Vitaliano et al, 1991; Russo & Vitaliano, 1995; Centre for Health Services Research,1998). This is likely to be more related to behaviour, relationship or psychologicalfactors (Parks & Pilisuk, 1991; Stephens et al, 1991; Vitaliano et al, 1991; Russo &Vitaliano, 1995; Centre for Health Services Research, 1998; Murray et al, 1999, 2001).

Depressive illness is common in such carers and treatment should beconsidered (Livingston et al, 1996).

Carers value acknowledgement of their role, attention to their distress andreceiving information on dementia (New Zealand Guidelines Group, 1997; Murrayet al, 1999, 2001; Waldemar et al, 2000; Nolan & Keady, 2001).

Referral to a carers group and/or a voluntary/self-help group should beoffered, especially to the Alzheimer’s Society (Coyne, 1991; New ZealandGuidelines Group, 1997; Melzer et al, 1999).

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Referral for a full carer’s assessment of need from social services, which maylead to respite services and supportive day care or other services, should beoffered (Department of Health, 1989, 1999b).

Treatment of sleep problemsPhysical health or environmental factors should be considered (Victor & Howse,1999; British Medical Association & Royal Pharmaceutical Society of Great Britain,2001).

Short-term hypnotic treatment may be necessary in cases of severe persistentinsomnia (British Medical Association & Royal Pharmaceutical Society of GreatBritain 2001). With such medication the dangers of promoting falls or promotingincontinence should be considered (Melton et al, 1994; Asada et al, 1996; NuffieldInstitute of Health & NHS Centre for Reviews and Dissemination, 1996).

General follow-up, monitoring and assessmentGeneral practice should remain involved with the management of the personwith dementia and any carer (Department of Health, 2001).

Regular review of progress and the appropriateness of management is essential(Centre for Health Services Research, 1998).

Review of physical health, and of remediable or potentially remediableproblems, is essential (Siu, 1991; Doraiswamy et al, 1998; Fillit & Cummings,1999; Patterson et al, 1999; Waldemar et al, 2000; Doody et al, 2001).

The general practitioner can have an important role in the monitoring ofantidementia treatments within a shared care protocol, but this may requiresupportive training (Department of Health, 2001).

Shared careAll patients referred for specialist assessment potentially may be referred backfor general practice management (Working Group consensus).

An agreement to share care or monitoring may be justified by the complexityof the problems or management (Working Group consensus). Appropriate transferof information is crucial to the success of shared care (Working Group consensus).

Regular updates of shared care protocols are essential for the maintenance ofappropriate care of people with dementia (Working Group consensus).

Psychotic features, behavioural problems, evident difficulty managing risksor concerns about abuse may particularly justify such shared care (WorkingGroup consensus).

National Institute for Clinical Excellence guidelines suggest partnership withgeneral practice in managing antidementia drugs (Department of Health, 2001;National Institute for Clinical Excellence, 2001).

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4. Working with people with dementia and theircarers

There are 6 million carers in the UK. Nine out of ten look after a close relative;58% are women; and they are most likely to be aged 45–64 years. Half of allcarers look after someone over 75 years old (Department of Health, 1999b). Thereare an estimated 400 000 carers for people with dementia in the UK.

Having a co-resident carer reduces the risk of entering residential or nursinghome care by 20 times (Murray et al, 2001).

Carers are not a homogeneous group. There are differences associated withthe relationship to the person with dementia, whether the carer is co-resident,differences between male and female carers, and in the caring roles andexpectations within different ethnic groups (Briggs & Askham, 1999).

Morbidity and stress among carers

There is an extensive literature on carer stress, burden and morbidity, and on thefactors associated with it (Donaldson et al, 1997; Schneider et al, 1999). Carers’psychological well-being is a key factor in admission into nursing or residentialcare (Levin et al, 1994).

Behaviour problems are consistently identified as having a major impact oncaregiver well-being and on the risk of admission to residential or nursing homecare (for example, Levin, 1997). This is shown in longitudinal as well as cross-sectional studies (Donaldson et al, 1997; Schneider et al, 1999; Murray et al, 2001).

Caring for people with dementia is associated with higher levels of stress anddepression than caring for other conditions (Livingston et al, 1996), and there areboth a significant financial impact and high levels of unmet need (Philp et al,1995). However, it is also important to look at the capabilities of carers, thesatisfactions that they experience and how they cope in practice (Nolan & Keady,2001). Reported areas of satisfaction include a feeling of job satisfaction, continuedreciprocity and mutual affection, companionship, and the fulfilment of a sense ofduty (Murray et al, 1999).

Existing guidance

The literature on carers is uneven. There are numerous studies of carer stress,but fewer publications on interventions, of which even fewer are reports ofrandomised trials. Systematic reviews of interventions for carers do not reportpositive findings (Thompson & Spilsbury, 2001), but this may be due to thesmall sample numbers and heterogeneity of trials.

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Existing guidelines recommend that carers should have their own assessments,and that information, education, training and support be provided to them. Forexample:

‘Assessment of caregivers’ distress and needs, and administration of intervention programmesfor caregivers, should be an integral part of the management of patients with dementia’(Waldemar et al, 2000).

‘Carers should have specific information and counselling for emotional problems throughoutthe illness’ (Department of Health, 1999b).

‘Carers need services that are timely, appropriate and individually planned’ (Audit Commission,2000).

‘Training programmes for family carers should be available throughout the country, resourcedby [health authorities]. Appropriate funding for the Alzheimer’s Society’s administration of itsnational awareness and information programmes should also be made available’ (New ZealandGuidelines Group, 1997).

This section also considers the increasingly important area of working withpeople with dementia, in particular the question of diagnosis, and also userperspectives on services. Existing guidelines generally support the idea ofdisclosing the diagnosis to the person with dementia, for example:

‘Although each case should be considered individually, in general the diagnosis of a dementingcondition should be disclosed to the patient and family. This process should include adiscussion of prognosis, diagnostic uncertainty, advance planning, treatment options, supportgroups and future plans. Exceptions to disclosing prognosis to the patient could be severedementia where understanding of the diagnosis is unlikely, phobia about the diagnosis orsevere depression’ (Patterson et al, 1999).

Assessment of carers

What is a carer? Several definitions are available, and there is overlap with otherterms, such as ‘caregiver’. A useful definition is ‘a family member (or friend),helping someone on a regular (usually daily) basis with tasks necessary forindependent living’ (Zarit & Edwards, 1996). Traditionally, the emphasis hasbeen on the performance of tasks, but this is changing with earlier diagnosis, asthe person newly diagnosed may still be functionally independent. In suchcircumstances, a family member or friend who provides a supporting role shouldalso be regarded as a carer, with a right to consideration of their needs as affectedby the diagnosis of dementia.

Assessment of carers is essentially about assessing their needs. There aredifficulties in defining ‘need’, which involve problems of judgement. Perceivedneeds are not objective and may be subjectively influenced by the value systemof the person or system defining the needs (Cheah et al, 1998). A distinction canbe made between ‘need’ and ‘demand’ (Stevens & Gabbay, 1991): ‘need’ relatesto intervention, through which people benefit, but ‘demand’ is what people askfor. It can be wrong to assume that need equates with a professional’s assessment,which could be related to the service’s perspective. Full assessment of needshould cover factors such as the nature and course of the disease, the ability to

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carry out activities of daily life, and the carer’s situation – and, thereby, giveinformation as to what type of service provision is required, e.g. preventive,rehabilitative or supportive.

The needs of carers interact with the particular setting. A carer’s needs may bein conflict with those of the person with dementia; the needs of a person withdementia living alone may challenge the services that can be provided by thecare sector; the needs of people with dementia in residential care, and theircarers, will differ from those of similar people residing in the community.

Involving carers and people with dementia in assessing needs

Ten key components of services for people with dementia and their carers havebeen identified by Enid Levin (Levin, 1997). These elements can be seen as thedesirable end-points of individualised needs assessments. They are:

• early identification of dementia• integrated medico-social assessment• active medical treatment• timely referral• information, advice and counselling• continuing back-up and review• regular help with household and personal care tasks• regular breaks from caring• regular financial support• permanent residential care (when necessary).

Involving carers and people with dementia in an assessment of their needs isembodied in community care legislation (National Health Service and CommunityCare Act 1990): ‘Those needing services and those caring for people who needservices should have a greater individual say in how they live and the servicesthey need to help them do so’ (Department of Health, 1989). Giving equal weightto the perceptions of both user and service provider has the practical benefit ofallowing differences to be discussed (Slade, 1994).

Measurements, scales and assessments of need

Needs assessment is a process that can occur in stages, starting with an initialscreening, progressing to more detailed enquiry, including more confidentdiagnosis, and resulting in a care plan, and continuing ‘monitoring’ in care plandelivery. Various forms of assessment have been developed, ranging fromcomprehensive assessment schedules (see, for example, guidance on the singleassessment process; Department of Health, 2002) to more specific measurementsof particular areas of functioning.

A comprehensive collection of assessment scales for old age psychiatrists hasbeen compiled by Burns et al (1999). It includes scales for depression and other

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psychiatric symptoms, neuropsychological tests, activities of daily living, globalassessments/quality of life, physical health and ‘caregiver assessments’. Twelvescales for caregiver assessment are included. Psychological distress is most oftenmeasured using the General Health Questionnaire (GHQ; Goldberg & Williams,1988). Lists of the number of problems exist, and other scales cover activity anddifficulties in more detail. The gold standard remains the Problem Checklist andStrain Scale (Gilleard, 1984). However, even this substantial work is not completeand omits some quite specific scales such as the Behavioural and InstrumentalStressors in Dementia (Keady & Nolan, 1996). There are also scales that emphasise‘carers as experts’, including such aspects as carer satisfaction and how carerscope successfully (Nolan & Keady, 2001).

Key points

• Assessment of need is a complex area with particular problems arisingfrom different definitions of and perspectives on needs.

• Carers can face many difficulties when their ‘needs’ are assessed byservice providers (e.g. not having enough information about servicesavailable in order to make an informed decision).

Recommendations

• Comprehensive assessment of the needs of people with dementia shouldinclude assessment of the needs of their carers.

• It is important for service providers not to assume a level of need; rather,they should work together with the carer and person with dementia toassess what needs are perceived to exist.

• It should not be assumed that it is impossible to involve people withdementia in assessments of need; on the contrary, attempts should bemade to involve them.

Interventions

InformationResearch in this area has emerged only since the 1990s, even though information-giving has long been a function of statutory and non-statutory agencies. Thosecaring for people with dementia often perceive that their needs forcommunication and information are not met adequately (Twigg & Atkin, 1990;Coyne, 1991; Kohner, 1992; Keady & Nolan, 1995; Mudge, 1995). The need forinformation is ongoing (Keady & Nolan, 1995). Keady & Nolan suggest thatcarers fall into two groups as far as information needs are concerned: thosewho want ‘everything and anything on dementia as soon as possible’ and thosewho want ‘just a little at first, I’m not sure how much I want to know’ (Keady &Nolan, 1995).

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For this report no specific study concerning the impact of providing carerswith information was identified, but some studies have described the outcomeof establishing information services for carers and families affected by dementia.An American study (Coyne, 1991) examined information and referral usage,showing that most requests from carers of people with dementia were for in-home service information, followed by requests for information and educationabout dementia. Satisfaction with the information given was rated highly bycarers.

An evidence-based review from the Royal College of Psychiatrists (Palmer,1999) makes the following recommendations on providing information for patientsand carers:

• Health professionals should be aware that depressive illness is commonin carers of people with dementia and is influenced by behaviouralproblems, and higher care (needs), in the service user.

• Physicians should inform the patient and their family about the probablediagnosis of Alzheimer’s disease. This disclosure should ordinarily occurin a joint meeting and should allow time for questions and discussion.With disclosure comes responsibility to direct the patient and family toresources, and to agree on a care plan. The utility of information fromgenetic testing has yet to be tested.

Recommendations

Carers of people with dementia should be provided with full information aboutdementia, its prognosis, treatments, support and services by all the agenciesthey are in contact with. This information should be relevant to their needs, becommunicated sensitively and be timely.

Carer education

Several published studies, including randomised controlled trials, indicate thebenefits of education and training programmes for carers of people with dementia.Carer training programmes can improve adjusted rates of survival at home, withfewer deaths, and delay in institutionalisation of people with dementia (Brodaty& Peters, 1991; Brodaty et al, 1997). Haupt et al (2000) demonstrated thatpsychoeducative group intervention with carers of people with dementia can behelpful to the patients themselves.

Additionally, there are reports of extensive carer education programmes beingdelivered with significant levels of satisfaction by voluntary groups. At theAlzheimer’s Society Symposium in 2000 at Nottingham University, Grahamreported on a 3-year programme that has delivered dementia education to over800 carers in Northern Ireland (Alzheimer’s Society, 2000); Bruce & Gallagher(Alzheimer’s Society, 2000) outlined a collaborative education programme

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between the University of Bradford and the Bradford branch of the Alzheimer’sSociety; and Stevenson (Alzheimer’s Society, 2000), from Alzheimer’s Scotland –Action on Dementia, described a similar programme for Scotland, which hasbeen in place since 1993.

Recommendations

Carers can benefit from education programmes, which should be more widelyavailable through statutory and voluntary agencies.

Advocacy

The role of advocacy for those who are unable to put forward their views isincreasingly being addressed within health service research. Advocacy has beendescribed as ‘making the case for someone or for a group of people or helpingthem to defend their rights or promote their interests’ (Killeen, 1996).

Advocacy is differentiated from other forms of support, such as befriendingservices, mediation services, advice work and counselling, in that it involvesdevelopment of relationships with regard to rights and representation.

The problems of having carers of people with dementia act as their advocateshas been documented and the issue of appointing an independent advocateraised (Cohen, 1994; Evans, 1994; Killeen, 1996). Other reports highlight the needfor people with dementia to have access to an advocate (Wertheimer, 1993;Askham, 1997).

Recommendations

Advocacy services should be available for people with dementia and their carers,and those providing such services should be aware of possible differences betweenthe interests of patients and carers.

Befriending

Another recent development is the introduction of befriending schemes for peoplewith dementia. Some brief reports are available, but there is no comprehensiveevaluation. One study (British Psychological Society Special Interest Group forthe Elderly, 1998) evaluated a 12-month pilot befriending scheme. The objectiveof the scheme was to improve the quality of life of a sample of older adults withdementia through participation, social contact and friendship with specially trainedbefrienders. The study produced some evidence that the scheme had improvedthe clients’ quality of life and had eased the strain on carers.

Another scheme (Nicholson, 2001) included 103 people with dementia whowere referred to the project. Benefits were identified for: people with dementiaby providing stimulation and maintaining social and intellectual skills; for

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families and carers by reducing carer isolation and giving them some free time;and for volunteer befrienders by giving training and enhancing communicationand caring skills.

Recommendations

Befriending schemes for people with dementia may have benefits for peoplewith dementia and their carers. A randomised trial would be valuable and shouldbe undertaken.

Counselling

There is little research that addresses and evaluates the effectiveness of counsellingeither for people with dementia or their carers. This may be because it is difficultin practice to define and systematise the terminology associated with counselling.Counselling carers and people with dementia takes many forms, but its mainfunction appears to be to provide emotional support to the carer.

Counselling strategies as a means of intervention have been examined withcarers (Toseland & Rossitter, 1989; Keizer & Feins, 1991; Mittelman et al, 1996).The American study by Mittelman et al (1996) found that a programme ofcounselling and support could

‘substantially increase the time spouse–caregivers are able to care for people with [Alzheimer’sdisease], patients at home particularly, during the early to middle stages of dementia whennursing home placement is generally least appropriate’.

It has now been acknowledged that people with dementia can be receptive topsychotherapeutic techniques, and a growing body of research has identifiedpossible areas in which counselling may be beneficial (Hausman, 1992; Greene &Ingram, 1993; Cheston, 1998). Such therapeutic techniques have included the useof counselling skills to encourage expressions of grief, sadness and other feelings(Stokes & Goudie, 1990; Mills & Coleman, 1994). Being able to express suchfeelings can be cathartic and the stories that people with dementia are able to tellcan act as a means of ‘emotion-focused exploration’ (Cheston, 1998).

Recommendations

• Clinicians should be aware that imparting information to people withdementia and their carers undoubtedly includes elements ofcounselling.

• Clinicians should consider that although psychotherapeutic approachesto people with dementia may have benefits for both patients and theircarers, the most effective use of such resources has not been shownempirically.

• Caregiver counselling and support programmes should be researched tosee if they are effective in the UK.

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Support groups

Support groups can be defined in any setting in which a number of carers cometogether to meet in a planned way, usually for 1–2 h at a time, with a professionalor lay person as leader. They may be run on either a time-limited or an ongoingbasis. The intention is that participants may learn together and gain mutually bysharing their experiences. In educational sessions, information is shared by meansof talks and discussions as well as the provision of written material. Supportgroups may be organised by voluntary agencies or statutory services.

In general, carers express satisfaction with support groups. These groups seemto be better at providing social support than relieving psychological symptoms.Although carers’ depression and psychological symptoms may be reduced, there islittle evidence that the subjective burden of care is diminished (Melzer et al, 1999).

Recommendations

Support groups are a useful adjunct to other services and are a valuable sourceof social support to carers, which clinicians should consider.

Respite care

Respite care has been defined in various ways, but most definitions tend toagree that it is a means of ‘providing temporary opportunities for caregivers tobe away from the patient in order to reduce caregiver stress and to delay orprevent nursing home admission’ (Monahan, 1993).

There is no single type of respite to suit the needs of all carers of peoplesuffering from dementia. The issue is more about what is the optimum mix ofservices to meet both the wide range of needs of carers and those cared for, aswell as to respond to changing needs over time (Mountain, 1995). Respite carefacilities fall broadly into three categories: short residential placements, day careand home care. The nature of delivery may be planned, offered on a crisis basisor offered on demand of the carer.

The effectiveness of respite care in providing a break and relievingoverburdened carers has been increasingly investigated over the past decade,and various schemes have been set up to try to evaluate the most appropriatemethod of delivery. However, carers’ views about the role of respite care varyand need to be incorporated when considering the type of care offered. Thus,some studies have looked at carers’ use of and satisfaction with respite careprovision; others have examined carers’ use of time when receiving a respiteservice. Some new forms of respite care have been evaluated, including nightcare (Watkins & Redfern, 1997) and video respite (Lund & Hill, 1995) – the latterconsists of individually tailored videotapes, which can be played as necessary.

The views of carers suggest that respite provision needs to be accessible,responsive to their needs and provide good-quality care (Briggs & Askham, 1999).

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Despite strong clinical impressions that respite care is helpful to many familycaregivers and helps bridge the gap between community and residential care,the results of controlled trials have been generally inconclusive, failing to provideclear confirmation of its effectiveness in terms of direct benefits to patients, reliefof carer burden or delay in institutional admission (Melzer et al, 1999). However,it may be possible to justify the continuance of providing respite care merely onthe basis that

‘caregivers show discriminating judgement in deciding whether to use such services and theusual principles of consumer demand can probably be counted on to regulate the extent towhich it is used and paid for by those who need it’ (Lawton et al, 1998).

Recommendations

• Despite the lack of evidence from randomised controlled trials for itseffectiveness, respite care should be viewed as an important source ofsupport for carers of people with dementia.

• A range of respite options need to be available, including home care(sitting services), day care and short-stay respite care.

Acute hospital admission

The high rates both of clinical dementia and of milder cognitive impairmentfound among elderly patients on acute medical and surgical wards call forrecognition and action by hospital trusts. Old people admitted from long-termcare homes are in particular need of skilful diagnosis and of patient, understandingcare. Departments of geriatric medicine (clinical geratology, health care of theelderly) can play a crucial part in raising clinical standards, including betterrecognition of delirium and confusional states. For example, Standard 4 of theNational Service Framework (Department of Health, 2001) relates to care in generalhospitals, including mention of patients’ mental health needs.

Acute beds are often ‘blocked’ by care-dependent elderly patients awaitingnursing home placement. For resolution of this problem, medical and social careplanning must be coordinated for defined area populations and greater emphasisplaced on provision of long-term care within the area boundaries.

In the terminal stages of dementia, the patient’s family may understandablywish not to let him or her be subjected to any further acute hospital treatment,and in this situation hospice-style care aimed at relieving pain, reducing distressand improving the quality of remaining life may represent a better alternative(Melzer et al, 1999).

Recommendations

• People with dementia should only be admitted to acute hospital wards ifthey have a physical illness requiring such treatment.

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• There should be a range of alternatives to hospital admission, with servicesable to respond to out-of-hours social needs and emergency situations.

• Standards of care in general hospitals must be appropriate for the needs ofpeople with dementia, and staff looking after patients with dementia mustbe competent to assess their needs and provide proper person- centred care.

Palliative and hospice care for people with dementia

At present the availability of hospice-style care for people with dementia islimited in the UK. Some research has addressed the palliative care needs ofadults with pre-existing severe mental health problems who developed life-threatening illness and required palliative care, but only a few of those adultshad dementia (Addington-Hall, 2000). General practitioners have a crucial rolefor people with dementia living in the community; they can be the bridge betweenpalliative care and mental health services, as well as the key provider of palliativecare to people with dementia, either living at home or in residential or nursinghomes.

Hospices and specialist palliative care services are in limited supply andoften lack the expert skills in the behavioural and psychiatric management ofpatients with dementia. They are not therefore an alternative to appropriate carein nursing homes, continuing care wards or to supported care at home from oldage psychiatry services and others. Instead, their major role will be to work withhealth and social work professionals currently providing care for people withdementia, to support them during the terminal phase and continuing intobereavement (if appropriate), and to educate them in the palliative care approachand help them implement it in their care setting.

Recent policy stresses the importance of supportive and palliative care,particularly in relation to dignity at the end of life (Department of Health, 2001).

Recommendations

All those working with people with dementia and their carers may need toprovide supportive and palliative care, as the patient’s death approaches, andthey must therefore have the competence to do so.

Long-term care

Long-term care should seek to maintain people’s independence and promoteinterventions that enable them to exert maximum control over their own lives(Alzheimer’s Society, 2000).

The organisation, provision and financing of long-term care continue to be thesubject of heated debate in the UK and the availability of such care varies widely.Access is further complicated by the introduction of the National Health Service(NHS) ‘free nursing care’ – and by its different availability in the devolved

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administrations. The components of long-term care should include NHScontinuing care, residential and nursing home care.

Carers need to be given good information about the options for long-term carein their area, yet an Audit Commission survey reported that fewer than half ofthe carers surveyed said that they knew of a residential or nursing home providinggood-quality care, or how to explore the possibility of a place for their relative(Audit Commission, 2000).

Recommendations

• Carers of people with dementia require information about long-term careat an early stage, including details of homes available locally, the processfor seeking a placement, and information about the likely financial andother consequences.

• Carers of people with dementia often require ongoing support fromservices after a person with dementia has moved into long-term care, asthere are often practical problems and emotional issues (includingfeelings of bereavement and guilt) to address.

Carers and service development

Carer involvement in dementia care services can be of several kinds, at differentlevels of the health and social care system (Dening & Lawton, 1998; Killeen,2001). These include carer organisations such as the Alzheimer’s Society, carerinput into policy and commissioning, involvement in planning new services andinvolvement in existing services.

The form of the input may vary, including public meetings and consultationexercises, surveys, carers panels or research studies with individual interviews. Toensure that such participation is genuine and effective requires attention to detail,for example with regard to timing of meetings, transport and payment of expenses.

Recommendations

Carers of people with dementia should be routinely involved in service planningand evaluation. This requires the provision of adequate resources, includingtransport, for the purpose.

Working with people with dementia

Imparting the diagnosis

In general, there is a consensus towards an obligation to inform people of theirdiagnosis (Pinner, 2000; McKeith & Fairbairn, 2001). This becomes moreimperative when drug treatments are being considered and consent is needed.There may be circumstances in which this is less desirable or is resisted, although

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evidence from empirical studies is lacking. Imparting a diagnosis requires timefor the recipient to assimilate information and ask questions. Most people withdementia appear to prefer to be informed of their diagnosis, across a wide rangeof dementia severity, although those who are also depressed may find thediagnosis particularly distressing (Jha et al, 2001).

There is a discrepancy between what people with dementia appear to wantand the views of general practitioners, around half of whom did not think thediagnosis of dementia was worth actively pursuing (Audit Commission, 2000).

Carers may have different perspectives and wish to protect people with dementiafrom the knowledge of their condition. Maguire et al (1996) found that 71% ofcarers (of patients attending a memory clinic) would wish to be told of their owndiagnosis, but only 17% wanted the person with dementia to be informed.

Recommendations

People with dementia should be informed of their diagnosis whenever possible.This requires careful explanation using appropriate terms, and time, both whenthe information is being imparted and subsequently, for reflection and to answerquestions that arise. Information about prognosis needs to imparted with similarcare and sensitivity.

User involvement in care and treatment

Subsequent to the work of Tom Kitwood, several accounts have emphasised theimportance of obtaining views from people with dementia (e.g. Goldsmith, 1996).Examples of obtaining user views to influence service developments are givenby Bamford & Bruce (2000) and Cox (2001). Stalker et al (1999) examined similaritiesand differences in a comparison of user involvement in learning disabilitiesservices. Different approaches may be needed to obtain views from people withdifferent degrees of impairment (Killeen, 2001).

There are discrepancies between the views of users and carers in relation totreatment choices in chronic conditions such as dementia. Carers often rate theperson with dementia’s quality of life as lower than they think that person wouldhave wished, especially if the carers are themselves depressed (Karlawish et al,2001). Carers often choose a lower intensity of treatment for those they care forthan do the patients themselves (O’Neill, 1997), so it is vital to be careful whentaking decisions on behalf of people with dementia, and to take a broad view ofthe whole situation.

Recommendations

• The views of people with dementia regarding the care and servicesoffered to them should be routinely sought. People with dementia have avaluable part to play in the design and evaluation of services.

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• With regard to treatment, the views of people with dementia should besought wherever possible. In all cases, the possibility that theirperspective may differ from that of their carers should be borne in mind,although it is also vital to consider the carers’ views when makingtreatment decisions.

Training implications

The purpose of training is to assess and meet the needs of people with dementiaand those of their carers. Training across a wide range of settings is relevant tothe care of older people and people with dementia – for example, care assistantsin residential homes; medical and other health care students; and specialistworkers, including psychiatrists, in mental health teams. In general, increasedattention should be paid to dementia and related topics, such as ageing, intraining curricula. This should be in proportion to the growing importance ofdementia as a health and social care issue, with its consequent massive economicimpact.

However, the evidence base for simply providing ‘training’ is both patchy andat times equivocal. Evaluating the direct effects of training initiatives upon thecare of people with dementia can be difficult; and results are not always positive,and can even be negative (Lintern et al, 2000). There is more to raising standardsthan simply providing training packages – also needed are good managementstructures, positive support and an overall commitment to improving quality(Cox et al, 1998; Alzheimer’s Society, 2001; Cox, 2001).

Furthermore, carers and people with dementia have an important part to playin shaping the training that is provided (Killeen, 2001). Initiatives that drawdirectly upon the experiences of people with dementia and their carers are to bewelcomed, as their impact can be powerful in raising awareness and conveyingthe most important messages.

Recommendations

• Training in dementia and its care is needed at many levels, but to besuccessful it must be integrated with a general approach to improvingquality.

• Coverage accorded to dementia in health care curricula should be inproportion to its health, social and economic importance.

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5. Capacity, legal, financial and risk issuesin people with dementia

Capacity, legal and financial issues

The legal jurisdictions making up the UK and Ireland differ and and are likely todo so even more in the future. For example, the Adults with Incapacity (Scotland)Act 2000 is now in force (Scottish Executive, 1999, 2000), whereas there is noequivalent legislation as yet in England and Wales (Law Commission, 1995).This statement attempts to consider the principles of good practice rather thanthe specifics in each jurisdiction. Where any specific legal detail is quoted, as anexample, this relates to the law of England and Wales.

There is no evidence from randomised controlled trials published in Englishon the usefulness of services giving or not giving guidance on capacity, legaland financial matters. There is significant evidence that carers benefit from aneducational intervention (Brodaty & Peters, 1991; Brodaty et al, 1997), and itseems sensible that such an intervention should include advice about these areas,as appropriate. There is significant evidence that carers would like services toaddress such areas (Twigg & Atkin, 1990; Coyne, 1991; Kohner, 1992; Keady &Nolan, 1995; Mudge, 1995; Nolan & Keady, 2001). This section therefore addressesthe areas that it is thought patients and carers would find helpful and which itwould seem good practice to cover.

Although this section is concerned with legal and financial issues, it is importantto keep in mind the ethical perspective. The four major medical ethical principles(Beauchamp & Childress, 1989; Bloch & Chodoff, 1991) are autonomy, beneficence,non-maleficence and equity (or justice). The ethical task of the good doctor is tofind the right balance for the patient between frequently competing themes, usingthese principles (Gillon, 1995; Jones, 2001). Additionally, the interests of carersand other societal implications have to be considered (with a similar ethicalbalance), although the doctor’s prime ethical relationship has always been withthe patient (Evans, 1987; Jones, 1987). Conflicts may arise, for example betweenthe need (and legal obligation) to protect the public from an impaired personwith dementia who is a danger when driving, and the ethical obligation topreserve medical confidentiality (Driver and Vehicle Licensing Authority, 1999).

Achieving a proper ethical balance can be particularly taxing in people withdementia. Further discussion and guidance is available (Gillon, 1994; Shah &Dickenson, 1999; Hughes, 2000; Jones, 2001) and the British Medical Associationperiodically produces useful works broadly addressing such areas (British MedicalAssociation & Law Society, 1995; British Medical Association, 2001). Cliniciansshould ensure they have sufficient familiarity with the ethical concepts, howthese concepts might be applied, and familiarity with how to balance the

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competing principles (or the ability, as necessary, to seek helpful discussionwith appropriate colleagues, ethicists or local ethics committees).

Legal areas relate to these considerations, but otherwise, with people withdementia, tend to be dominated by the concepts of capacity, best interests,promoting the exercise of autonomy despite incapacity, and the use of compulsionunder mental health legislation.

Only the briefest account of these aspects is given here, and, in difficult cases,recourse should be had to the more detailed reference sources noted.

Capacity

Responsibility for assessing capacity lies with the treating doctor. The LawCommission (1993) proposals have elaborated on the earlier common-law test ofcapacity: understanding in broad terms what is proposed to be done and why.Accepting this, the Lord Chancellor (Lord Chancellor’s Department, 1999)proposed that incapacity exists when a person is ‘unable by reason of mentaldisability to make a decision on the matter in question; or unable to communicatea decision on that matter because…unconscious…or for any other reasons.’Further, a person is ‘unable to make a decision by reason of mental disability’ ifthe disability is such that the person is ‘unable to understand or retain theinformation relevant to the decision’ at the time when the decision is to be made,for example in relation to health or welfare matters, or ‘unable to make a decisionbased on that information’ (Lord Chancellor’s Department, 1999).

The common-law test for capacity to consent to treatment, as paraphrased byMichael Gunn (Gunn, 1994), included specific reference, regarding the necessaryinformation, to the individual ‘believing it’. This is incorporated into the presentMental Health Act Code of Practice (for England and Wales) (Department ofHealth & Welsh Office, 1999).

Under the Lord Chancellor’s proposals (Lord Chancellor’s Department, 1999),the individual must actually have the ability to make a decision. Similarly, toprove incapacity, an inability to make the decision in question must be proved.There ‘will be a statutory presumption against lack of capacity’. Great effortsshould be made to communicate appropriately with such individuals.

‘Mental disability’ will mean ‘any disability or disorder of the mind or brain,whether permanent or temporary, which results in an impairment or disturbanceof mental functioning’ (Lord Chancellor’s Department, 1999): it should be thereason for the incapacity mentioned above, although inability to communicatecould be through unconsciousness, ‘or for any other reason’ (Lord Chancellor’sDepartment, 1999).

Best interestsThe Lord Chancellor (Lord Chancellor’s Department, 1999) in making proposalsfor an Incapacity Act, and following on from the Law Commission works, hascodified the various best interest factors to be considered. They include the following:

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• The ascertainable past and present wishes of the person concerned, andthe factors that person would consider if able to do so;

• The need to permit and encourage the person to participate, or improvehis or her ability to participate, as fully as possible, in anything done for,and any decisions affecting, him or her;

• The views of other people whom it is appropriate and practicable toconsult about the person’s wishes and feelings, and what would be in hisor her best interests;

• Whether the purposes for which any action or decision is required can beas effectively achieved in a manner less restrictive on the person’sfreedom of action (Lord Chancellor’s Department, 1999).

Promoting the exercise of autonomy despite incapacity

In England and Wales legal mechanisms only relate to control of property andaffairs through an enduring power of attorney (Public Trust Office, 1996).However, an advance directive (‘living will’, advance refusal of treatment, etc.) isheld to have legal validity and should be respected in so far as it is properlyexecuted and applies in all the circumstances: see Re C (1994). Doctors shouldrespect these mechanisms but cannot be forced to commit illegal acts such aseuthanasia.

The Lord Chancellor’s original proposals (Lord Chancellor’s Department, 1999),if enacted, would introduce a continuing power of attorney, which would operatein a similar manner to an enduring power of attorney, but would additionallyrequire a doctor’s certificate to attest that capacity was present when it wasexecuted. This continuing power of attorney would be able to cover all health,personal welfare and financial matters. Similarly, a reformed Court of Protectionwould be able to rule on or appoint managers to act on such issues, acting in thepatient’s best interests; this is seen to address the need to respect what is thoughtthe person’s wishes would have been if the person were capable. Similarly, aGeneral Authority to Act Reasonably will enable carers and professionals to actin an incapable person’s best interest (as outlined above), although it will notallow the use of force.

Until any such legislation in England appears, the present Court of Protection,Public Trust Office, Appointeeship and Agency arrangements (Law Commission,1995) remain operative.

Other jurisdictions vary but address the same principles, and in Scotland thisbroad approach has been enacted with the Adults with Incapacity (Scotland) Act2000.

Compulsion under mental health law

It is important to be clear that mental health law can be used with people withdementia, because it is a mental disorder. It should be used, when applicable, if

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the patient is resisting necessary assessment, treatment or care, or if the mentaldisorder involves significant risk to the individual’s health or safety or that ofother persons.

Outwith mental health law in England, the National Assistance Act, Section 47remains available but is little used (Muir Gray, 1991).

Recommendations for good practicePoints to consider:

• Whether the patient has the capacity to consent to treatment:• if there is capacity, the patient’s wishes must be respected, unless

there is a serious mental health problem for which the use of theMental Health Act would be appropriate;

• if there is incapacity, it is good practice to seek the support of thenext of kin and/or carer for giving treatment for serious physicalillness in the patient’s best interest, as appropriate;

• if a patient is incapable and in need of treatment for mentaldisorder, consideration should be given to the use of compulsionunder Mental Health Legislation.

• Whether financial incapacity issues arise and there is a need to advise thepatient and/or carer about them:• whether there is a need for an enduring power of attorney or the

Court of Protection;• whether the Public Trust Office should be approached to

authorise a suitable person to manage finances on behalf of anincapable patient with less than £5000;

• whether an arrangement is needed with a social security office fora person to deal with these payments on behalf of an incapablepatient (Appointeeship);

• whether Agency (collecting pension on behalf of the individual) isneeded.

• The possibility that testamentary capacity may be impaired, with aconsequent need for advice.

• Whether guardianship (under the Mental Health Act 1983 in England andWales) could usefully legitimise necessary access to the patient’s home toprovide supportive care.

• Driving – in the UK, patients who drive and are diagnosed with dementiamust be informed of the diagnosis by the specialist and of the necessity forthem to report this diagnosis to the Driver and Vehicle Licensing Authority(DVLA). Clinicians should keep themselves updated with respect to theDVLA standards. Other measures may be necessary (see below).

• When a firearms licence (e.g. for a shotgun) is held, consideration shouldbe given to whether capacity issues or mental ill-health (and consequent

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safety/dangerousness) issues arise, which may necessitate a report by thedoctor to licensing authorities as a result of serious public safety concerns.

• Resuscitation – the specialist needs to consider the appropriateness ofcardiopulmonary resuscitation for in-patients with dementia, andwhether the patient is capable of taking part appropriately in discussionof this; involvement of the carer also is essential, all the more so ifincapacity is present.

• Advance directives should be given appropriate consideration, and maywell have full legal validity in all the circumstances.

A contentious area is the covert administration of medication to incapablepatients who resist it when it is given openly (incapacitated patients who do notcomply). Treloar et al (2000) found that staff in most long-term care settings resortto this at times, mixing medication in food or drink. These authors argued thatsuch actions, although a last resort, are ethically legitimate in exceptionalcircumstances. Common law has to be invoked when the provisions of the MentalHealth Act do not apply. Treloar et al argue that it is important to balance ease ofaccess to good clinical care against restrictions which aim to prevent abuse:

‘If medication is given covertly, then it should be discussed between the doctor, nurse, pharmacistand relative or advocate, and recorded, so that legal redress is possible. The opportunity forlegal redress is, of course, a key element of the UK Human Rights Act 1998’ (Treloar et al, 2001).

Although there is no consensus in this area yet, it is important that theresponsible consultant addresses the issues and does not simply collude withunexamined, unregulated and poor practice. For nurses, the UK Central Councilhas issued guidance (UKCC, 2001). Similar considerations arise with what mayamount to de facto detention.

Risk issues

Autonomy and risk

Assessment of risk in relation to a person with dementia is part of the coreclinical assessment by members of the multidisciplinary team and is best regardedas a continuous clinical process rather than a one-off assessment. People withdementia are likely to have diminished ability to manage their affairs as theillness progresses, and those around them may become concerned about variousrisks. There are many tools for risk assessment in general psychiatry but they areoften oriented towards danger to others and potential self-harm; they are notappropriate for assessing risk in people with dementia for whom many otherrisks may enter the picture, including wandering, neglect, fire risk andvulnerability to exploitation. Consideration of risk in people with dementia mustbe balanced against their right, within their capacity to choose, to lead the lifestyleof their choice, as far as they are able to. People with dementia must be helped tomake decisions for themselves as far as they can, for as long as they are able to,and this should be reflected in care plans.

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Recommendations• People with dementia should be involved in all decisions affecting their

care and assisted to make whatever decisions they can for themselves.• Staff who become aware of potential risks should share that information

with others involved in the person’s care.• Concerns about risk and actions taken or recommended to minimise risk

should be documented.

Risk

It is important to recognise that the assessment and prediction of risk is not anexact science. Dementia involves potential reduction or loss of the person’scapacity to look after his or her own affairs. Such reduction or loss of judgementand insight often mean that new elements of risk enter into the picture – elementsthat mean different things to those involved in the care package. The assessmentof the perceived risk, and its place in the overall care situation, is an aspect thatruns throughout the assessment process, and is a central tenet in developing acare programme with which everybody involved in the care can agree.

The many published tools for risk assessment in general psychiatry are chieflyoriented towards forensic issues, such as dangerousness and self-harm, andattempts to eradicate such behaviours. For people with dementia, more often therisk concerns incapacity, and the potential for abuse and neglect. The task is toidentify and understand the risk, and to place it in context. Although attemptsshould be made to minimise risk, the principle must remain that people withdementia, in so far as they retain capacity, retain the right to choose how theylead their lives; and care plans should assist them to do this rather than limittheir activity. This approach does not always sit well with family and othercarers, but, at all times, the patient’s best interests must remain the focus;otherwise services can attempt to treat too many conflicting needs.

Currently no published risk assessment tool has been evaluated and validatedfor exclusive use in older people.

Risk screeningMany short screening tests are used by different services – often based on theprinciples expressed here. No validated scale is available. Some make use of ascoring system, others do not. Any recording method or instrument used shouldcover four principal areas: neglect, abuse, deliberate self-harm and aggression(violence to others).

Recommendations• Risk should always be considered during assessment of the patient and

documented in a standard way (perhaps using a simple instrument).• The responsibility to record this rests with the initial assessor and

subsequently the care manager.

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• It is useful for such records to show whether risks were identified:• as part of the assessment• as the care situation subsequently changed• at a later agreed review.

Risk management

Risk management, like risk assessment, is not an exact science. There is noevidence base to give definite guidance on appropriate procedures,documentation and strategies, and good clinical practice is the mainstay. Themanagement of risk should be a continuous process, as usually needs changeover time, and any procedures or documentation should reflect this.

In the absence of a suitable evidence base the Working Group adopted thefollowing discussion as the basis for good practice. Individual situations andspecific services might require more specific responses.

Regular review of risk should occur, for example at care management meetingsor when circumstances alter. Staff who identify potentially serious risks areresponsible for sharing that information with the multidisciplinary team, in orderto share their concerns and to help collectively to determine what action isappropriate to reduce and manage such risk. A more thorough assessment ofrisk may be needed if there is greater concern, and this could document identifiedproblems in more detail, including factors that might seem likely to make theproblems worse and what might reduce them. When there is significant concernit can be helpful for all key providers of care, together with the patient andfamily, to formulate what is the level of risk, ensuring thereby that this is explicit,understood and consequently acceptable to all, or at least to the majority.Documenting such a process should greatly help avoid misunderstandings, buta review time is important, to retest the assumptions made. Consequentinterventions would be allocated to named individuals, with a specified timescale and a mechanism for reporting back at a set review.

Useful information sources for carers

The Alzheimer’s Society publishes a number of fact sheets which address manyof these areas most usefully. They are well worth bringing to the attention ofcarers and sufferers. The most relevant include the following:

• Financial and Legal Tips (2003), which covers Agency, Appointeeship,enduring power of attorney, the Court of Protection and the Public TrustOffice, wills, guardianship and where to go for help;

• Driving and Dementia (January 2000);• Welfare Benefits (2001);• Council Tax (1996);• Care on a General Hospital Ward (2000), which mentions consideration of

resuscitation issues.

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They are available online from the Alzheimer’s Society (http://www.alzheimers.org.uk).

General Medical Council guidance on driving and dementia

The General Medical Council’s position on breach of confidentiality, andobligations under law, suggests that the doctor should take direct action to informthe DVLA if it is believed that there is a serious risk to the public and thatdriving is continuing despite advice to the contrary (Driver and Vehicle LicensingAuthority, 2001). It seems prudent to ensure that there is a documentary recordto show that advice of an appropriate nature has been given to an older persondiagnosed with dementia: this should cover driving and legal obligations toinform the DVLA. This is important in relation to subsequent legal action, suchas from a fellow road user accidentally injured by a driver with dementia.

The 1999 version of the DVLA’s guidance emphasised explicitly that the ‘DVLAmust be notified as soon as a diagnosis [of dementia] is made’ (Driver andVehicle Licensing Authority, 1999). The same document advises that when apatient cannot be persuaded to stop driving, or when the doctor is given or findsevidence that a patient is continuing to drive contrary to advice, the doctorshould disclose relevant medical information immediately, in confidence, to theMedical Adviser at the DVLA. Before taking this action, the doctor should informthe patient of the decision to do so. Once the DVLA has been informed, thedoctor should also write to the patient to confirm that disclosure has been made.Guidance also suggests that every reasonable effort to deter patients from drivingshould be made, and that this may include telling their next of kin of the situation.This guidance quotes stipulations directly from the clear GMC guidelines: theserefer to driving licence holders having ‘a condition which may, now or in thefuture, affect their safety as a driver’.

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6. Treatment of cognitive symptoms in peoplewith dementia

Pharmacological treatment of cognitive symptoms in dementia has become possiblesince cholinesterase inhibitors were licensed for use in the UK for the symptomatictreatment of mild to moderate Alzheimer’s disease. The National Institute for ClinicalExcellence reported upon the use of these drugs in clinical practice in January 2001and their guidance forms the basis for this report (National Institute for ClinicalExcellence, 2001). Preliminary data are available about the efficacy of cholinesteraseinhibitors in non-Alzheimer’s dementia, and reference is also made to this. Otherclasses of medication have also been proposed as effective in the treatment of thecognitive symptoms of dementia, either in improving symptoms or delaying diseaseprogression. Limited epidemiological data or results of randomised controlledtrials are available to support these claims, which have been made for non-steroidalanti-inflammatory drugs (NSAIDs), vitamin E and Ginkgo biloba extract.

Since the overwhelming majority of evidence about efficacy of treatments hasbeen established in Alzheimer’s disease rather than in other dementias, it shouldbe assumed that the recommendations below apply to patients with Alzheimer’sdisease unless otherwise specified.

Cholinesterase inhibitors

Donepezil, rivastigmine and galantamine have all been shown in placebo-controlled randomised trials to improve cognition above baseline values,(I)

although treatment has generally been assessed over periods of 6 months or lessand the effect size is modest. There is no evidence that the three available drugsdiffer significantly in degree of efficacy or side-effects.(III)

Clinicians should be fully familiar with details of the NICE guidance firstissued in January 2001 (National Institute for Clinical Excellence, 2001).

General recommendation

The prescription of a cholinesterase inhibitor should be considered as onecomponent of the management of Alzheimer’s disease.

Selected aspects of NICE guidance and the College view

The recommendations below represent the College view on selected aspects ofthe NICE guidance (which are also quoted, with the appropriate paragraphnumbers), and should be read in conjunction with the source document which isfreely available online (National Institute for Clinical Excellence, 2001).

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NICE guidance

‘Diagnosis that the form of dementia is [Alzheimer’s disease] must be made in a specialistclinic according to standard diagnostic criteria’ (NICE: 1.1.1).

‘Only specialists (including old age psychiatrists, neurologists, and care of the elderly physicians)should initiate treatment’ (NICE: 1.1.4).

RecommendationNo particular set of diagnostic criteria was proposed by NICE. One of the standardoperationalised schemes, such as ICD–10, DSM–IV or NINCDS–ADRDA criteriashould be adopted for consistent use within a given service.

NICE guidance

’Tests of cognitive, global and behavioural functioning and of activities of daily living, shouldbe made before the drug is prescribed’ (NICE: 1.1.2).

RecommendationThe importance of accurate baseline assessment is emphasised, since it is againstthis that subsequent judgements about response will be made. Details of theprecise tests to be used were not given in the NICE guidance and thus may varyaccording to local practice. The MMSE, which will be performed at baseline,should suffice as a cognitive outcome measure. Other more detailed tests maybe added if desired.

NICE guidance

‘The three drugs donepezil, rivastigmine and galantamine should be made available [for people]whose MMSE score is above 12 points’ (NICE: 1.1)

RecommendationThe NICE absolute requirement for an MMSE score over 12 at baseline islikely to mean difficult clinical decisions in patients with scores at or belowthis threshold. Due allowance should be made in patients unable to completethe MMSE because of dysphasia or having a first language other thanEnglish.

NICE guidance

‘Carers’ views of the patient’s condition at baseline and follow-up should be sought’ (NICE:1.1.3, 1.1.4).

RecommendationThe views of the patient, carer and clinician should be recorded separately incase notes and a consensus view about global change documented as the basisfor management decisions.

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NICE guidance

‘A further assessment should be made, usually two to four months after reachingmaintenance dose of the drug. Following this assessment the drug should be continuedonly where there has been an improvement or no deterioration in MMSE score, togetherwith evidence of global improvement on the basis of behavioural and/or functionalassessment’ (NICE: 1.1.5).

RecommendationSince it may take 3–4 months to achieve a maintenance dosage with somecholinesterase inhibitors, the guidance suggests that the first follow-up assessmentvisit might be 6–8 months after baseline assessment. The Working Group considersthat, in practice, more regular contact will be required for dose titration and side-effect monitoring. Visits by a community psychiatric nurse and/or telephonecontact might be useful.

NICE guidance

‘Patients who continue on the drug should be reviewed by MMSE score and global, functionaland behavioural assessment every 6 months. The drug should normally only be continuedwhile their MMSE score remains above 12 points and their global, functional and behaviouralcondition remains at a level where the drug is considered to be having a worthwhile effect.When the MMSE falls below 12 points, patients should not normally be prescribed [acholinesterase inhibitor]’ (NICE: 1.1.6).

This is likely to be a problematic area. The latter guidance is based upon a lackof evidence about efficacy of cholinesterase inhibitors in severe dementia ratherthan upon actual evidence of such a lack of efficacy. Trials in severe dementiaare in progress.

This guidance is based upon information in two evidence-based reviews ofthe diagnosis and management of dementia (Waldemar et al, 2000; Doody etal, 2001), supplemented by the UK NICE Appraisal Technology Report No.19 (National Institute for Clinical Excellence, 2001), the report of the WessexInstitute for Health Research and Development (2000), and a Web of Sciencereview of papers published since January 2001, using keywords includingDEMENTIA, ALZHEIMER’S DISEASE and TREATMENT. Evidence has beencoded as being provided by:

(I) well-designed randomised controlled trials, meta-analyses orsystematic review;

(II) well-designed case–control or cohort studies;(III) uncontrolled studies or consensus statements.

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RecommendationIf patients show clinically significant deterioration following cholinesteraseinhibitor withdrawal that was initiated solely on the grounds of their MMSEscore having fallen below 12, reinstatement of medication should be considered.

NICE guidance

‘The benefits of [cholinesterase inhibitors] for patients with other forms of dementia…have notbeen assessed in this [NICE] guidance’ (NICE: 1.2).

One placebo-controlled randomised trial (McKeith et al, 2001) with rivastigmine(I)

and several published case reports(III) suggest efficacy of cholinesterase inhibitorsin dementia with Lewy bodies with benefits in cognition and behaviour of agreater magnitude than seen in Alzheimer’s disease. A placebo-controlledrandomised trial of galantamine, only published in abstract form (Erkinjuntti etal, 2001), reported cognitive improvement in patients with a diagnosis of mixedvascular and Alzheimer dementia.(I) Patients with pure vascular dementia showedlimited treatment response. No trial or systematic case report of cholinesteraseinhibitor treatment of frontal lobe dementia has been published, but expert opinionis that these drugs generally are not beneficial and may cause increased agitationand behavioural disturbance.(III)

RecommendationThe Working Group suggests that clinicians may choose to treat patients withdementia with Lewy bodies or with mixed vascular and Alzheimer’s dementiawith cholinesterase inhibitors, particularly patients who have behaviouralsymptoms or global disturbance that have proved refractory to other interventions.Such treatment will be outside the licensed indication. There is no evidence tosupport the use of cholinesterase inhibitors in frontal lobe or pure vasculardementia.

Other pharmacological treatments

The use of non-steroidal anti-inflammatory drugs has been associated inepidemiological studies with a reduced incidence of dementia.(II) The postulatedmode of effect is a suppression of inflammatory responses. A placebo-controlledrandomised trial with the anti-inflammatory hydoxychloroquine (Van Gool et al,2001) did not, however, show any cognitive benefits in patients with establishedAlzheimer’s disease.(I) A large epidemiological study (‘t Veld et al, 2001) suggestedthat NSAIDs do have a protective effect against Alzheimer’s disease but notagainst vascular dementia.(II) This effect is dose-dependent and manifest only ifmedication has been taken over a long period (>2 years). There appears, therefore,to be no evidence to support the use of NSAIDs in the symptomatic treatment ofcognitive symptoms in Alzheimer's disease, particularly since this class of drugshas the potential to cause significant adverse effects.

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One placebo-controlled randomised trial showed modest cognitiveimprovements with Ginkgo biloba extract, which is an over-the-counter preparationwidely used by older people and people with dementia in the UK. A mixeddementia population was tested and outcome measures fell short of thoseexpected (a psychometric measure plus clinician’s global impression).(II)

Vitamin E was shown to delay the progression of moderately severeAlzheimer's disease to an end-point of severe disability in a placebo-controlledrandomised trial (Sano et al, 1997). No improvement in cognition was, however,observed.(I) Similar outcomes were observed for the type B monoamine-oxidaseinhibitor selegiline within the same trial.

Epidemiological studies suggest that oestrogens might have a therapeuticeffect in Alzheimer's disease,(II) but although there are case reports of cognitiveimprovements following oestrogen administration,(III) there are negative findingsfrom two placebo-controlled randomised trials.(I)

Other potential treatments for dementia, including vaccine therapy, ampakinesand beta-secretase inhibitors, remain at an early stage of development and areavailable only within approved clinical trials in specialist centres.

Recommendation

There is insufficient evidence to support the use of any medications other thancholinesterase inhibitors for treating the cognitive symptoms of dementia. Somepatients with dementia may benefit from Gingko biloba extract but sufficientevidence-based efficacy data are lacking. Vitamin E (1000 IU twice daily) may beconsidered in an attempt to slow progression of Alzheimer's disease but its usefor this purpose has not been licensed. Non-steroidal anti-inflammatory drugsand oestrogens have not been shown to have symptomatic effects on cognition inAlzheimer's disease and should not be prescribed for the treatment of dementia.

Non-pharmacological treatment of cognition in dementia

Non-pharmacological treatment of dementia forms the major part ofmultidisciplinary case management and the effects of such interventions shouldbe considered. Psychosocial interventions specifically directed towards cognitioninclude reality orientation treatment, reminiscence therapy and validation therapy.The Cochrane Library holds updated systematic reviews on each of these, andconcludes that:

‘[there is] some evidence that reality orientation treatment has benefits on cognition for dementiasufferers. It is unclear how far the benefits of [this therapy] extend after the end of treatment, butit appears that a continued programme may be needed to sustain potential benefits’(II) (Spectoret al, 2001b).

No firm conclusion could be reached regarding the effectiveness ofreminiscence or validation therapy.(II)

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Recommendation

Psychosocial interventions and particularly cognitive-oriented treatment may behelpful to some patients and carers, but do have potential to precipitate orworsen depression, anxiety or frustration. In the absence of clear evidence ofefficacy, treatment programmes must be designed in the light of the cognitivecapacity and level of tolerance of the patient, and possible adverse effects of thetreatment must be monitored.

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7. Treatment of non-cognitive symptoms in peoplewith dementia

In addition to the cognitive symptoms and problems with activities of dailyliving that result from dementia, a range of psychiatric symptoms and behaviouraldisturbances are a consistent expression of the syndrome. The most common anddistressing features are agitation, psychosis (e.g. delusions, hallucinations andmisidentifications), depression, apathy, wandering and pacing, sexualdisinhibition, aggression, sleep disturbance and eating disorders. A number ofnames have been given to this cluster of symptoms, including ‘non-cognitivefeatures’ (Burns et al, 1990a–d), ‘neuropsychiatric features’ (Cummings et al, 1994)and ‘behavioural and psychological symptoms of dementia’ (Finkel & Burns,2000). These features are important because they cause particular distress topatients, place burden on carers, are associated with more rapid cognitive declineand promote institutionalisation of patients.

This guideline is based on a number of publications that have addressed thissubject: Doody et al (2001), Howard et al (2001), Alexopoulos et al (1998), ScottishIntercollegiate Guidelines Network (1998) and Finkel & Burns (2000). The guidelineincludes mention of carer interventions for people with dementia.

Pharmacological interventions

Management of behavioural disturbances

Probably the most common clinical situation is where a clinician is asked to seea person suffering from dementia who has become agitated and/or aggressive.A thorough assessment of the patient’s physical health, mental state and theenvironment is essential. It is important to rule out a physical cause for theaggression (such as a urinary tract or chest infection, or other physical illness)and to investigate whether there is any clear precipitant in the environment. It isalso important to review the medication that the person is taking, to check if it –or a combination of drugs – might be the precipitant of agitation. Pain can alsobe a potent precipitant of agitation and aggression. Non-pharmacologicalmanagement should always be the treatment of first choice, examining theantecedents of the behaviour, the behaviours themselves, and the consequences (ABC).Staff education in homes, carer education and behaviour management techniqueshave all had some success in alleviating agitation and aggression.

If pharmacological intervention is considered appropriate (where non-pharmacological treatments have failed, and where the disturbance is acute, severeand/or life-threatening), Howard et al (2001) have noted the following points:

• a lack of evidence from controlled trials to support using benzodiazepines;

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• using antipsychotics should only follow full consideration of risks as wellas benefits;

• older people are especially sensitive to the common side-effects ofantipsychotics;

• there may be accelerated cognitive decline in Alzheimer’s diseaseassociated with antipsychotic use;

• neuroleptic sensitivity particularly occurs in patients with dementia withLewy bodies;

• there is good evidence of a modest level of efficacy for antipsychoticdrugs.

• there is no demonstrated difference in efficacy, but atypical agentsseemed to have ‘a better side-effect profile’;

• start at the lowest dosage and carefully monitor for side-effects;• only continue medication if there is evidence of efficacy;• review the need for continuing treatment every 3 months;• for patients in whom antipsychotics are ineffective or not tolerated,

carbamazepine or trazodone may be efficacious;• if agitation is severe or treatment-resistant, specialist referral is

appropriate.

Agitation and aggression sometimes coexist with psychosis. Most studiesconcentrate on patients with agitation, but where psychosis is also present,antipsychotics are of benefit.

Three studies have demonstrated the efficacy of risperidone in the treatmentof behavioural problems, agitation and aggression in people with dementia. Acomparison of risperidone and haloperidol showed that risperidone achievedthe same degree of reduction in agitation, with fewer side-effects. Olanzapinedoes reduce agitation and psychosis in patients with dementia. Selegiline (L-deprenyl) has not shown any consistent benefits over placebo. Carbamazepineand sodium valproate have shown benefits in the treatment of agitation associatedwith dementia. The anticholinesterase drugs are effective at reducing a numberof psychiatric symptoms and behavioural disturbances in patients with dementiawith Lewy bodies (McKeith et al, 2000), and are shown to delay the onset of theemergence of behavioural disturbances, as well as a reduction in extant behavioursin people with Alzheimer’s disease.

Management of depression

Several studies have examined the treatment of depression in people withAlzheimer’s disease. Comparisons of newer drugs with tricyclic antidepressantsare difficult because there tends to be a larger number of withdrawals due toside-effects among those taking the older drugs. There has been demonstratedbenefit of clomipramine, moclobemide, fluoxetine, citalopram, fluvoxamine andparoxetine in patients with Alzheimer’s disease and superadded depression.

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Considerable work has been devoted to the usefulness of non-pharmacologicalinterventions with the behavioural and psychological symptoms in dementia,and this is examined in Chapter 8.

Summary

In relation to pharmacotherapy in patients with dementia, Doody et al (2001)concluded that:

• antipsychotic therapy is appropriate in patients with dementia whereenvironmental changes are not successful in improving agitation orpsychosis;

• atypical antipsychotics may prove to be better tolerated than typical agents;• for patients with depression, consider prescribing a selected tricyclic

antidepressant, monoamine-oxidase type B inhibitor or selectiveserotonin reuptake inhibitor, with the side-effect profile guiding thechoice of drug.

Recommendations for the treatment of behavioural and psychological symptoms

In the light of this evidence review, the Working Group makes the followingrecommendations:

• Proper and thorough assessment to establish the aetiology of theproblems is the first essential.

• Neuroleptic (antipsychotic) agents are appropriate to treat agitation orpsychosis in people with dementia where other approaches have failed.

The following recommendations from Howard et al (2001) are supported:

• Non-pharmacological management should always be the treatment offirst choice, examining the antecedents of the behaviour, the behavioursthemselves and the consequences.

• Staff education in homes, carer education and behaviour managementtechniques have all had some success in alleviating agitation andaggression, and should be considered.

• Consider that there is a lack of evidence from controlled trials to supportusing benzodiazepines.

• The use of neuroleptics (antipsychotics) should only follow fullconsideration of risks as well as benefits.

• Consider that older people are especially sensitive to the common side-effects of antipsychotics.

• Consider that there may be accelerated cognitive decline in Alzheimer’sdisease associated with neuroleptic (antipsychotic) use.

• Consider that neuroleptic sensitivity can particularly occur in patientswith Lewy body dementia.

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• Consider that the evidence shows a modest level of efficacy forneuroleptic (antipsychotic) drugs.

• Consider that there is no demonstrated difference in efficacy.• Start at the lowest prescribable dosage and carefully monitor for side-

effects.• Only continue medication if there is evidence of efficacy.• Review the need for continuing treatment every 3 months.• Consider that for patients in whom neuroleptics (antipsychotics) are

ineffective or not tolerated, carbamazepine or trazodone may beefficacious.

• Consider that if agitation is severe or treatment-resistant, specialistreferral is merited.

Recommendations for the treatment of depression

We support the recommendation of Doody et al (2001) that depression in patientswith dementia may be treated with a selected tricyclic antidepressant, monoamine-oxidase type B inhibitor or selective serotonin reuptake inhibitor, with the side-effect profile guiding the choice of drug.

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8. Non-pharmacological approaches to treatingpeople with dementia

It is only comparatively recently that effective pharmacological therapies havebecome available for the treatment of cognitive impairment in dementia. Evennow, it is only in Alzheimer’s disease and, perhaps, dementia with Lewy bodiesthat cholinesterase inhibitors appear effective (McKeith et al, 2000; NationalInstitute for Clinical Excellence, 2000). Pharmacological treatments are alsoprescribed for some non-cognitive symptoms occurring in patients with dementia,and may be helpful (Rosequist et al, 2000). Nevertheless, non-pharmacologicalapproaches have been, and remain, the major resource available to helpindividuals with dementia and those caring for them. It is possible to classifysuch approaches as either designed to reduce the likelihood of developingdementia (preventive) or designed to limit progress of – or reduce – complicationsonce the condition has become evident (ameliorative).

Preventive approaches encompass genetic counselling, which should only beundertaken by an expert in the field (Lovestone, 1999). Such specialist clinicalgenetics services, able to facilitate the education of health care professionals, aswell as to support affected individuals and families, may be best organised on aregional basis. Hardship, poverty, and adverse life events and circumstances areassociated with poor health, including poor mental health, and with reduced lifeexpectancy (Whalley, 1998). These aspects probably affect the experience andexpression of dementia. Heavy smoking is associated with the development ofdementia in later life, perhaps mediated through cardiovascular or cerebrovasculardisorder, and smoking may have direct effects on cerebral function (Ott et al,1995). Excessive alcohol consumption over a period of years is associated with anumber of organic brain syndromes, including dementia (Lishman, 1990). Peoplewith a high vitamin C intake have a reduced prevalence of dementia. Highintake levels of vitamins C and E, and high serum levels of folic acid and vitaminB12, are associated with lower plasma total homocysteine levels, and with alower prevalence of dementia (Pitchumoni & Doraiswamy, 1998; Vatassery, 1998).High intake and high serum levels of thiamin are also associated with a lowerprevalence of dementia (Mimori et al, 1996). Trauma to the head – whether singularand massive, or repetitive as in boxing – is associated with a risk of progressivedementia (Lishman, 1978). People with diabetes may suffer neuronal damage orloss as a consequence of either hyperglycaemic or hypoglycaemic episodes(Liebson et al, 1997). Continued use of long-acting sedatives and tranquillisers isa particular risk (Department of Health, 2001).

All this means that significant gains may be expected from the maintenanceof good physical health throughout life, including into late life, aiming for themaintenance of good cerebral function, and from ensuring regular reviews of

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the drug regimens of older people, particularly where the drugs affect brainfunction.

Apart from the non-drug aspects of these preventive approaches, and apartfrom the drug treatment (ameliorative) approaches established for those sufferingfrom dementia, certain non-specific and specific non-pharmacological(ameliorative) approaches have been applied and evaluated to some extent. Theseinclude specific therapies, such as:

• reminiscence therapy• validation therapy• reality orientation• exercise therapy• pet therapy• music therapy• psychological techniques to cope with memory impairment or related

symptoms.

Significant work (Alexopoulos et al, 1998; Burns et al, 1990a–d; Cummings et al,1994; Scottish Intercollegiate Guidelines Network, 1998; Finkel & Burns, 2000;McKeith et al, 2000; Doody et al, 2001; Howard et al, 2001) has looked at the use ofnon-pharmacological interventions for the behavioural and psychologicalsymptoms of dementia, and this merits further review.

Interventions for behavioural and psychological symptoms

Caregiver interventions

Several studies have compared the effects of an educational intervention for carers,compared with no treatment. Although there is no effect on severity of disease orcognitive function, these short-term interventions have been of proven benefit indecreasing burden and strain on carers and delayed admission of patients toinstitutional care (Brodaty & Gresham, 1989; Chiverton & Caine, 1989). The beneficialeffects on carer morale and patients have been demonstrated by providinginformation to carers in nursing and residential homes (Ray et al, 1993).

Other non-pharmacological approaches

Various specific interventions have been used to try to improve functionalperformance in people with dementia, and practice and positive reinforcementhave been shown to improve activities of daily living (Sixsmith et al, 1993).Scheduled toileting reduces urinary incontinence (Ouslander & Schnelle, 1993),and the benefits of memory training, manual and/or creative activities, improvingsensory motor function and self-management therapy have all been found to beof benefit compared with traditional approaches (Bach et al, 1995). Realityorientation, re-motivation, sensory stimulation, reminiscence and exercise haveall shown benefit in improving activities of daily living.

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Music therapy (using the patient’s own choice) has reduced agitation, aggressionand mood disturbances (Clark et al, 1998). One-to-one social interaction orvideotapes of family members have reduced verbal outbursts, and there arepreliminary studies suggesting that audiotapes of familiar voices can improvemood, aggression and agitation (Woods & Ashley, 1995). Bright light therapy canreduce behavioural disturbances (Koss & Gilmore, 1998).

In relation to non-pharmacological interventions, our consensus supports Doodyet al (2001), who recommended that consideration should be given to the following:

• short-term programmes to educate carers about Alzheimer’s disease, toimprove carer satisfaction;

• longer-term education and support services to carers, to prolong time toinstitutional placement;

• education of the staff of long-term care facilities about Alzheimer’sdisease, to reduce the unnecessary use of neuroleptic medication;

• behaviour modification, scheduled toileting and prompted voidingshould be helpful in reducing urinary incontinence;

• functional independence should be improved through the use of gradedassistance, practice and positive reinforcement in activities of daily living;

• simulated sounds of nature, reduced lighting levels and music have beenreported to improve eating behaviours in people with dementia, andintensive multimodal group training has been reported to improve activitiesof daily living, but there is no conclusive study supporting these approaches;

• people with dementia have been reported to show less problembehaviours with the following interventions: music (especially duringmeals and bathing) and walking or other forms of light exercise;

• there is suggestive evidence only that some patients may benefit fromapproaches such as simulated presence therapy (using videotapes oraudiotapes of family members), massage, programmes of comprehensivepsychosocial care, pet-facilitated therapy, the issuing of commands at thepatient’s comprehension level, bright light, white noise and cognitiveremediation;

• aspects of the care environment – definitive studies are lacking but someevidence suggests the following environments are worth considering forpatients with dementia:

• specialist care units within a continuing care facility• avoiding a traditional nursing home appearance and instead

using home-like physical settings with small groups of patients• if hospitalising, using only short, planned admissions of 1–3 weeks• providing access to exterior space, making internal corridors

more like natural home settings and similarly improving thebathing environment;

• interventions for carers: the following interventions may benefit carers ofpersons with dementia, and may delay permanent institutionalisation:

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• comprehensive training to carers of a psychoeducational nature,and support groups

• further benefits to patients and carers may be obtained throughusing computer networks to provide education and support tocarers, television support programmes, and the provision of daycare for patients and other respite services.

However, in conclusion, of all the recommendations suggested by Doody et al(2001), only the following achieved the recommendation of ‘standard’ (i.e. achievesa high degree of clinical certainty from well-designed randomised controlled trials,or overwhelming evidence from well-designed observational studies with controls):

• behaviour modification, scheduled toileting and prompted voiding toreduce urinary incontinence.

It is worth devoting further consideration to some of the specific therapies thathave been described.

Specific therapies

Reminiscence therapy

Reminiscence therapy is a loosely defined range of therapeutic activities involvingrecall of events in a person’s life, either alone, with another person or in a group.Although this therapy is often enjoyed by participants, a Cochrane Review (Spectoret al, 2001a) found it impossible to be sure how and when it should be used, whatbenefits are to be expected and how it compares with other psychologicalapproaches in dementia.

Validation therapy

Attributed to Naomi Feil and developed in the 1960s, validation therapy seeksto restore the patient’s self-worth, minimise withdrawal, promote interaction andcommunication, reduce stress, release retained skills and ability, facilitate progresswith unfinished life tasks and maintain independent living. The Cochrane Review(Neal & Briggs, 2001) of this technique found descriptions of benefits, but findingsfrom participant observers reflect improvements not seen by non-participantobservers. As with validation therapy, the Cochrane reviewers suspected thatbenefits might derive from involvement in structured activities and additionalattention rather than specific attributes of the particular therapy.

Reality orientation

Reality orientation has been widely supported for work with people withdementia. This technique derives from earlier initiatives to rehabilitate warveterans. It presents orientation information – time, place, person, etc. – in a

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structured classroom style, and aims to help individuals gain and retain a betterunderstanding of their circumstances, and thereby benefit in terms of self-controland self-esteem.

The Cochrane Review (Spector et al, 2001b) found clear benefits in the shortrun, with measurable gains in cognition and behaviour. Improvements havebeen demonstrated to continue for at least a month. The Cochrane reviewersrecommended that reality orientation techniques be included in the widerdementia care programme for individuals, and that initial sessions beconsolidated, and reinforced, by continuous ongoing programmes.

Psychological techniques

Approaches to coping with failing memory have been developed and found tobe effective. With mild impairment, techniques used may include internalapproaches or external techniques.

Internal approaches are used by the individuals themselves. These rely onusing retained cognition to retrace steps to discover where things were last cogentand then move forwards, attempting to avoid false traces and discover the requiredpathway (Pelmanism). Techniques include focusing attention on important aspectsof activities, adding meaning to events or activities by associations, and reducingthe volume of materials to be remembered. Mnemonic techniques may be helpfulbut require considerable retained capacity for new learning, internal motivationand the provision of training. The gains seem specific to the topics addressedand included in the training programme.

External techniques provide cues and nudges to retained internal abilities,such as a notepad, diary, instructions, newspaper, radio, television, clock,calendar, things in the right place, dosette box and telephone codes. To thesemay be added cue calls (by telephone or by visiting), and novel electroniccompensatory devices, epitomised in the ‘smart house’ concept.

As impairment becomes greater, dependence on external techniques organisedand operated by others becomes greater. Maintaining a routine, minimising changeand contact with people who know the patient well – or come to do so – are thebasics. Carers are increasingly required to become flexible ‘prostheses’, identifyingwhat can no longer be done, anticipating the need and providing the necessarysupporting action, to avoid frustration and distress. It is at this stage that realityorientation may have significant benefit.

In the later stages, with advanced impairment, dependence upon others is almostabsolute. Often these are professional carers if transfer to a nursing home or hospitalhas become necessary. Features of the environment have a profound impact andissues of design for people with advanced dementia are being explored (Judd,1997). The availability of natural light and views of or contact with the outsideworld are important; they tell of the time of day and time of year.

Colours of decorations, and the nature, style and arrangement of furnishings,may add to or minimise distraction and confusion. Floor coverings and designs

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upon the floor may be influential and some are being subjected to evaluation.Labelling of doors, equipment and people seems important. Words may be toodifficult, and uniforms or diagrams may convey stronger, simpler messages moreeffectively.

Safety devices to identify movement into hazardous areas, or away fromsafe supervision, have advantages as complements to personal monitoring,which may be exhausting to the monitor and can be irritating and perceivedas intrusive by those monitored. Increasingly, new technology is used inpreference to locked doors, although these may still be necessary in somecircumstances.

Perhaps the strongest safety device in institutional settings is the inclusion offamilies and other visitors into the life of this special world. Well-trained staffwith proper attitudes encourage this, but it does require some appropriatelydesignated physical space and facility to operate optimally.

A Cochrane review of cognitive rehabilitation did develop to the protocolstage (Clare et al, 2001) as did reviews of aromatherapy (Thorgrimson et al, 2001)and snoezelen (Chung et al, 2001). A previously available Cochrane review ofmusic therapy was withdrawn, but a number of papers have been supportive ofits effectiveness (Clarke et al, 1998).

Forbes’ review of studies of strategies for managing behavioural symptoms indementia (Forbes, 1998) concluded that planned walking, pet therapy, an attention-focusing programme, functional skills training and music all showed benefits inreducing aggression, wandering and disruptive behaviour, while encouragingbetter self-care and more social interactions.

Godkin & Onyskiw (1999) reviewed articles which concluded that educationof staff and withdrawal of restraint devices from long-term care facilities werebeneficial to residents and staff.

Opie et al (1999) provided a systematic review of studies of psychosocialinterventions in people with dementia (1989–1998) and concluded that many ofthese interventions had been shown to be useful. These included concealingexits, provision of activity programmes, supervised walking, music (best tailoredto the known preferences of individuals), involvement of families, and extrabright light (for those who wander in the evenings). Education of professionaland informal carers and involvement of family recur as useful approaches.

In the light of the available evidence, the Working Group supported thefollowing recommendations.

Recommendations

The recommendations of the American Academy of Neurology (Doody et al,2001) are supported, namely:

• Family caregivers of people with dementia should be offered educationalprogrammes to improve satisfaction and to postpone institutionaladmission.

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• Staff in nursing and residential homes should receive education aboutdementia, aiming to minimise the use of antipsychotic pharmacotherapy.

• Consider the use of behaviour modification, scheduled toileting andprompted voiding to improve urinary continence.

• Functional independence should be improved through the use of gradedassistance, practice and positive reinforcement in activities of daily living.

Further, in relation to non-pharmacological approaches, we recommend thefollowing:

• The various specific and non-specific therapies should continue to bedeveloped and refined, and their place in the spectrum of care beclarified. Components of these approaches should be available within allservices.

• There is a particular need to increase the availability of training for staffand carers in techniques for coping with memory impairment, and thisneed might best be met by incorporation in the routine activity ofmemory clinics.

• Services should also consider the need for training for staff and carers incoping better with the non-cognitive aspects of dementia.

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Appendix : Position statement by the Facultyof the Psychiatry of Old Age on the use of neuroleptic(antipsychotic) agents in treating older people withdementia

Concern has been expressed that neuroleptic drugs may be used inappropriatelyin people with dementia. The Faculty of the Psychiatry of Old Age of the RoyalCollege of Psychiatrist believes it is important that:

• such medication is used when it seems likely to be beneficial to the patient;• that the use of such medication be regularly reviewed;• that the use of such medication on a pro re nata basis should be

minimised and regularly reviewed;• that advice be available for clinicians treating people with dementia

outwith specialist service settings or not currently receiving the supportof such specialist services.

This statement largely comprises relevant extracts on the topic drawn togetherfrom Council Report CR119, Forgetful But Not Forgotten, including strategies toavoid or minimise the use of neuroleptic medication. The statement begins withguidance on working in primary care with behaviour disorders experienced bypeople with dementia, including the use of neuroleptics. It goes on to review themanagement of behavioural and psychological symptoms in people withdementia, followed by guidance for practice by a specialist service. The statementin itself constitutes the Faculty Consensus Statement (which on this topic was ledby Professor Alistair Burns) and was approved by Council in 2002.

Advice on relevant aspects of working with people with dementia in primarycare

This guidance leans heavily on that of others, especially the North of Englandevidence-based guidelines development project (Centre for Health ServicesResearch, 1998), the New Zealand Guidelines Group (1997) and the work of theScottish Intercollegiate Guidelines Network (1998), to which gratefulacknowledgement is given.

Managing behavioural disorders in patients with dementia

• Physical causes or acute change in physical problems, particularlypossible pain, should always be excluded as an underlying cause forbehavioural disorder (Beck & Shue, 1994; Nilsson et al, 1998; Patterson etal, 1999).

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• Consideration should be given to non-drug interventions before drugoptions are embarked upon (Allen-Burge et al, 1999; Proctor et al, 1999;Terri et al, 2000; Howard et al, 2001).

• The ‘psychological environment’ of the care setting and the attitudes ofcarers may be influential in behaviour problems (Kitwood & Bredin,1992; Allen-Burge et al, 1999).

• As far as possible such causes should be treated before consideringneuroleptic medication (Kitwood & Bredin, 1992; Allen-Burge et al, 1999;Proctor et al, 1999; Terri et al, 2000; Howard et al, 2001).

• Routine use of neuroleptics or other tranquillisers to control behaviour indementia should be avoided (McKeith et al, 1992; McGrath & Jackson,1996; McShane et al, 1997; Thacker & Jones, 1997; Howard et al, 2001).

• For crisis situations short-term use of neuroleptics (antipsychotics) maybe justified but they should only be considered when there are seriousproblems, such as psychotic symptoms, severe emotional distress ordangerous behaviour (Centre for Health Services Research, 1998; Ballard& O’Brien, 1999; Doody et al, 2001; Howard et al, 2001).

• There is no clear evidence that one neuroleptic is superior to another, butatypical agents seem to be better tolerated (De Deyn et al, 1999; Katz et al,1999; Street et al, 2000).

• ‘Start low and go slow’, aiming normally for short-term treatment withregular reviews (Howard et al, 2001).

• All involved with the care of the patient should be aware of potentialside-effects (Centre for Health Services Research, 1998). The routine use ofanti-Parkinsonian medication is not indicated (Centre for Health ServicesResearch, 1998).

• Neuroleptics should be avoided in patients with dementia with Lewybodies (McKeith et al, 1992).

Lewy body dementia

• It is important to consider the possibility of dementia with Lewy bodiesbecause of possible therapeutic implications (McKeith et al, 2000).

• It is important to avoid using neuroleptic drugs in such patients,accepting that making this diagnosis may be difficult, and, therefore, toconsider the need for specialist referral (McKeith et al, 1992).

Consensus statement on the management of behavioural and psychologicalsymptoms in people with dementia

In addition to the cognitive symptoms and problems with activities of dailyliving that result from dementia, a range of psychiatric symptoms and behaviouraldisturbances are a consistent expression of the syndrome. The most common anddistressing features are agitation, psychosis (e.g. delusions, hallucinations and

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misidentifications), depression, apathy, wandering and pacing, sexualdisinhibition, aggression, sleep disturbance and eating disorders. A number ofnames have been given to this cluster of symptoms, including non-cognitivefeatures (Burns et al, 1990a–d), neuropsychiatric features (Cummings, 1994) andbehavioural and psychological symptoms of dementia (Finket & Burns, 2000).These features are important because they cause particular distress to patients,place burden on carers, are associated with more rapid cognitive decline andpromote institutionalisation of patients.

This guideline is based on a number of recent publications that have addressedthis area (Alexopoulos et al, 1998; Scottish Intercollegiate Guidelines Network,1998; Finkel & Burns, 2000; Doody et al, 2001; Howard et al, 2001; Knopman et al,2001). The guideline includes mention of carer interventions for people withdementia.

Non-pharmacological interventions

Caregiver interventionsSeveral studies have compared the effects of an educational intervention forcarers, compared with no treatment. Although there is no effect on severity ofdisease or cognitive function, these short-term interventions have been of provenbenefit in decreasing burden and strain on carers, and delaying admission ofpatients to institutional care. Beneficial effects on carer morale and patients havebeen demonstrated through providing information to carers in nursing andresidential homes. Intuitively, providing general psychological support to informaland formal carers seems likely to be helpful.

Other non-pharmacological approachesSpecific interventions have been used to improve functional performance inpeople with dementia, and practice and positive reinforcement have been shownto improve activities of daily living. Scheduled toileting reduces urinaryincontinence, and the benefits of memory training, manual and creative activities,improving sensory motor function and self-management therapy have all beenfound to be of benefit compared with traditional approaches. Reality orientation,re-motivation sensory stimulation reminiscence and exercise have all shown benefitin improving activities of daily living.

Music therapy (using the patient’s own choice) has reduced agitation, aggressionand mood disturbances (Clark et al, 1998). One-to-one social interaction orvideotapes of family members have reduced verbal outbursts, and there arepreliminary studies suggesting that audiotapes of familiar voices can improvemood, aggression and agitation (Woods & Ashley, 1995). Bright light therapy canreduce behavioural disturbances (Koss & Gilmore, 1998).

In relation to non-pharmacological interventions, our consensus supportsDoody et al (2001), who recommended that consideration should be given to thefollowing:

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• short-term programmes to educate carers about Alzheimer’s disease, toimprove carer satisfaction;

• longer-term education and support services to carers, to prolong time toinstitutional placement;

• education of the staff of long-term care facilities about Alzheimer’sdisease, to reduce the unnecessary use of neuroleptic medication;

• behaviour modification, scheduled toileting and prompted voidingshould be helpful in reducing urinary incontinence.

• functional independence should be improved through the use of gradedassistance, practice and positive reinforcement in activities of daily living;

• simulated sounds of nature, reduced lighting levels and music have beenreported to improve eating behaviours in people with dementia, andintensive multimodal group training has been reported to improveactivities of daily living, but there is no conclusive study supportingthese approaches;

• people with dementia have been reported to show less problembehaviours with the following interventions: music (especially duringmeals and bathing), walking, or other forms of light exercise;

• there is suggestive evidence only that some patients may benefit fromapproaches such as simulated presence therapy (using videotapes oraudiotapes of family members), massage, programmes of comprehensivepsychosocial care, pet-facilitated therapy, the issuing of commands at thepatient’s comprehension level, bright light, white noise and cognitiveremediation;

• aspects of the care environment – definitive studies are lacking but someevidence suggests the following environments are worth considering forpatients with dementia:

• specialist care units within a continuing care facility• avoiding a traditional nursing home appearance and instead

using home-like physical settings with small groups of patients• if hospitalising, using only short, planned admissions of 1–3

weeks• providing access to exterior space, making internal corridors

more like natural home settings and similarly improving thebathing environment;

• interventions for carers: the following interventions may benefit carers ofpersons with dementia, and may delay permanent institutionalisation:

• comprehensive training to carers of a psychoeducational nature,and support groups

• further benefits to patients and carers may be obtained throughusing computer networks to provide education and support tocarers, television support programmes, and the provision of daycare for patients and other respite services.

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However, in conclusion, of all the recommendations suggested by Doody et al(2001), only the following achieved the recommendation of ‘standard’ (i.e. achievesa high degree of clinical certainty from well-designed randomised controlled trials,or overwhelming evidence from well-designed observational studies with controls):

• behaviour modification, scheduled toileting and prompted voiding toreduce urinary incontinence.

Additionally, it seems appropriate to recommend:

• that the various specific and non-specific therapies continue to bedeveloped and refined and their place in the spectrum of care be clarified(components of these approaches should be available within all services);

• there is a particular need to increase the availability of training for staffand carers in techniques for coping with memory impairment, and thisneed might best be met by incorporation in the routine activity ofmemory clinics;

• services should also consider the need for training for staff and carers incoping better with the non-cognitive aspects of dementia.

Pharmacological interventions

Management of behavioural disturbancesProbably the most common clinical situation is one in which a clinician is asked tosee a person suffering from dementia who has become agitated and/or aggressive.A thorough assessment of the patient’s physical health, mental state and theenvironment is essential. It is important to rule out any physical cause for theaggression (such as a urinary tract or chest infection, or other physical illness) andto investigate whether there is any clear precipitant in the environment. It is alsoimportant to review the medication that the person is taking, to check if it – or acombination of drugs – may be the cause of the agitation. Pain can also be a potentprecipitant of agitation and aggression. Non-pharmacological management shouldalways be the approach considered first, where appropriate, examining theantecedents of the behaviour, the behaviours themselves and the consequences(ABC). Staff education in homes, carer education and behaviour managementtechniques have all had some success in alleviating agitation and aggression.

If pharmacological intervention is considered appropriate (where non-pharmacological treatments have failed, and where the disturbance is acute, severeand/or life-threatening), Howard et al (2001) have noted the following points:

• a lack of evidence from controlled trials to support using benzodiazepines;• using antipsychotics should only follow full consideration of risks as well

as benefits;• older people are especially sensitive to the common side-effects of

antipsychotics;• there may be accelerated cognitive decline in Alzheimer’s disease

associated with antipsychotic use;

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• neuroleptic sensitivity particularly occurs in patients with dementia withLewy bodies;

• there is good evidence of a modest level of efficacy for antipsychoticdrugs.

• there is no demonstrated difference in efficacy, but atypical agentsseemed to have ‘a better side-effect profile’;

• start at the lowest dosage and carefully monitor for side-effects;• only continue medication if there is evidence of efficacy;• review the need for continuing treatment every 3 months;• for patients in whom antipsychotics are ineffective or not tolerated,

carbamazepine or trazodone may be efficacious;• if agitation is severe or treatment-resistant, specialist referral is

appropriate.

Agitation and aggression sometimes coexist with psychosis. Most studiesconcentrate on patients with agitation, but where psychosis is also presentantipsychotics are of benefit.

Three studies have demonstrated the efficacy of risperidone in the treatmentof behavioural problems, agitation and aggression in people with dementia. Acomparison of risperidone and haloperidol showed that risperidone achievedthe same degree of reduction in agitation, with fewer side-effects. Olanzapinedoes reduce agitation and psychosis in patients with dementia. Selegiline (L-deprenyl) has not shown any consistent benefit over placebo. Carbamazepineand sodium valproate have shown benefits in the treatment of agitation associatedwith dementia. Cholinesterase inhibiting drugs are effective at reducing a numberof psychiatric symptoms and behavioural disturbances in patients with dementiawith Lewy bodies (McKeith et al, 2000) and are shown to delay the onset of theemergence of behavioural disturbances, as well as a reduction in extant behavioursin people with Alzheimer’s disease.

Management of depression

Several studies have examined the treatment of depression in people withAlzheimer’s disease. Comparison of newer drugs with tricyclics is problematicbecause there tends to be a greater rate of patient withdrawal due to side-effectsamong those taking the older drugs. There has been demonstrated benefit ofclomipramine, moclobemide, fluoxetine, citalopram, fluvoxamine and paroxetinein patients with Alzheimer’s disease and superadded depression.

Recommendations

The first recommendation must be for proper and thorough assessment toestablish the aetiology of the problems. In relation to pharmacotherapy in patientswith dementia, we support the recommendations of Doody et al (2001) that:

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• antipsychotic therapy is appropriate in patients with dementia whereenvironmental changes are not successful in improving agitation orpsychosis;

• atypical antipsychotics may prove to be better tolerated than typicalagents;

• for patients with depression, consider prescribing a selected tricyclicantidepressant, monoamine-oxidase type B inhibitor or selectiveserotonin reuptake inhibitor, with the side-effect profile guiding thechoice of drug.

Additionally, our consensus work indicates that:

• multiple neuroleptic use is a practice to be avoided;• familiarity with chlorpromazine equivalents is good practice.

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