WordCount:3,839

Caringforpeoplewithdementia:Anart‐basedapproach

ShamaChaudhary

4thyearMedicalStudent

TheUniversityofManchester

1

Abstract

Dementia poses a huge and ever increasing disease burden to societies worldwide.

(1) It has been described as an epidemic and the problem is only likely to escalate

with an ageing global population.

This reports aims to explore ways to optimise dementia care and focuses on person-

centred methods including art based interventions. There is increasing evidence

base for use of psychosocial interventions in management of dementia. (2) It will

also look at the current art-based intervention in practice in South Australia and their

impact.

Dementia, a history

The word Dementia is derived from Latin de (out of), mens (mind) and ia (state). The

word dementia has historically been used to describe a mental derangement of

several types regardless of the age of the patient. The first association between

dementia and ageing on record was made by Aretaeusn of Cappadocia in second

century. He attributed dementia to normal mechanisms of ageing. The distinction

between normal ageing of the brain and late life neuro-pathologies was not quite

established until a breakthrough in understanding dementia came with English

physician Dr James Pichard proposing in 1837 that dementia was not part of the

normal ageing. Our understanding of dementia has come a long way since but there

are still many unanswered questions. (3)

Current understanding and classification of dementia

2

Dementia can be defined as “an acquired global impairment of intellect, reason and

personality without impairment of consciousness.”(4) Memory dysfunction and

emotional lability are usually prominent features.

Dementia is an umbrella term encompassing many heterogeneous syndromes.

There is an absence of consensus on a unifying mechanism for these conditions.(5)

A generally acceptable way of classifying dementia is based on whether it is

neurodegenerative or not. Most common causes of dementia are neurodegenerative

and include Alzheimer’s disease, dementia with Lewy bodies, frontotemporal

dementias, Parkinson’s disease dementia and Huntington’s disease. Non

neurodegenerative causes of dementia are given in the table below

Causes Examples

Cerebrovascular multi-infarct dementia, Binswanger's

disease

Drugs and toxins barbiturates, anticholinergic agents,

digoxin, alcohol, heavy metals

Infections Creutzfeldt-Jakob disease, HIV infection,

neurosyphilis

Metabolic disorders uraemia, hepatic failure, hypothyroidism,

hypoparathyroidism

Vitamin Deficiencies B1-Wernicke-Korsakoff syndrome, B2, B12

Intracranial space-occupying lesions neoplasms, chronic subdural haematoma

Paraneoplastic syndromes limbic encephalitis

Hydrocephalous

3

Alzheimer’s disease is the by far the most common cause of dementia in the

developed world followed by dementia with Lewy bodies, Vascular dementias and

frontotemporal dementias.

Dementia and society

Dementia has always been a significant social issue due to its behavioural and

cognitive manifestations. Mental disorders were recognised as illness in the western

world in fifteenth and sixteenth centuries. Before that people with dementia either

lived in alms houses or on streets when their families could no longer care for them.

From eighteenth century onwards, they were cared for by psychiatric hospitals. The

proportion of people with dementia in these establishments has continued to

increase ever since due to an ageing population as well as due to improved

diagnostic tools and general awareness. However, a significant proportion of people

with dementia are still looked after by their families.

Impact of dementia

Dementia has enormous impact on the person and people around them. Increasing

level of care is required which, when combined with the emotional aspect of the

disease can be devastating for loved ones and can lead to impaired state of

wellbeing not just for the patients but for their carers too. The factors important in

determining the impact of dementia include severity of disease, rate of progression,

the nature of relationship in pre morbid person with dementia and their carers as well

as availability of social, medical and financial support.

Dementia impacts every aspect of a person's life. It deprives them of their autonomy

so that they can't live independently or make judgements. Activities and hobbies that

4

they used to enjoy may not be possible due to a decline in memory and cognition.

The impact of dementia may cause further psychiatric problems such as depression

and psychosis. In later stages of the disease the motor system is often affected and

speech may be impaired or essentially ineffective rendering them unable to

communicate their wishes. All of the above have a significant bearing on the quality

of life of the person with dementia. Quality of life (henceforth referred to as QoL) is

defined by WHO in terms of physical and psychological wellbeing, level of

independence, social relationships, environments and spirituality, religion and

personal beliefs. Health related QoL (HRQoL) aims to measure the impact of a

disease on a person's QoL. HRQoL is at least partly subjective and can be

challenging to measure in people with dementia due to several factors including

impaired memory of experiences, language problems and lack of insight. For those

reasons, QoL for people with dementia is mainly measured by objective measures

such as degree of impairment, social interactions and quality of their surrounding

environment and care. Quality of care that people receive due to their dementia is

very important determinant of QoL due to obvious reasons; however, it has been

shown that some people with dementia were likely to be treated differently from

general population even for issues unrelated to dementia. Nygaard and Jarland

(2005) found that people with dementia in a care home were less likely to be given

pain relief than people who did not suffer from dementia. Another retrospective, post

mortem study in a hospital found that fewer medical interventions were attempted in

people who had dementia compared to those who did not have dementia. Other

issues associated with quality of care for dementia include the potential for abuse,

neglect and other harmful behaviours due to vulnerability of the person with

dementia.

5

The other important impact to consider is the impact on the caregiver. Due to the

nature of dementia and typical absence of insight on the patient's part, much of the

burden of the disease in dementia is shouldered by their carers. (6)

Family carers are usually spouses or adult children with no previous experience or

training. Caring for people with dementia requires very high investment of time,

money and emotions and often prevents carers from pursuing their own ambitions

and hobbies in life. This combined with ever increasing demands of care can be very

emotionally and physically draining.

Carers have been found to score much below the normal average on HRQoL scores.

(7) There is also evidence of higher than normal morbidity and mortality in

caregivers. (8)

Use of art based interventions in management of dementia

The use of art based interventions to improve quality of life and function in people

with dementia is a field of growing interest. There is evidence to support that

frequent participation in creative activities can abate cognitive decline(9) and reduce

the risk of developing dementia.(10)

Traditionally, modes of these interventions have included drawing, painting, singing,

poetry and music and there are demonstrable benefits of using all of those(11)(12).

There are also some programmes being developed aiming to deliver the above

interventions through new technology e.g. Tablets(13), however, the efficacy of

these remains to be seen.

The rationale for using these mainly sensory interventions is that the sensory

memory is preserved in dementia till late stages. George Sperling’s work on sensory

6

memory (14) demonstrated that it is a fast-decaying type of memory that is

independent of short term and long term memory types, however, it is strongly

associated with recall. For example a certain sight or smell can bring long-term

memories flooding back. These characteristics make it ideal for exploitation in

dealing with dementia memory loss. Not only does the patient get to enjoy a part of

their memory function that is preserved but it also helps improve the functions that

are compromised.

The long term memory type is usually most affected in dementia. A widely used

classification of long term memory is that by Anderson (15) who divided it into

declarative and procedural type.

The declarative or explicit memory requires conscious recall of information and

includes semantic memory i-e facts without context and episodic memory i-e facts

within time-and-place context.

The procedural or implicit memory on the other hand concerns information that does

not require conscious recall and includes skills such as riding a bike. Fortunately, this

type of memory is also preserved in dementia. This means that people with dementia

are able to enjoy activities such gardening, knitting and reading a book till late stages

of the disease.

My time at Alzheimer’s Australia in Adelaide

Recently, I had the chance to spend time with an organisation called Alzheimer’s

Australia at their South Australia branch in Adelaide. My main interest was to learn

about their art-based interventions in management of dementia. During the course of

this placement, I had the opportunity to learn about and observe a technique called

7

Montessori Method being used in order to improve quality of life and health

outcomes in patients with dementia.

Background of Montessori Technique

Dr Maria Montessori (1870-1952) was one of the first female physicians in Italy. Her

special interests were paediatrics and rehabilitation. During her internship in a

psychiatric clinic in Rome, she was assigned a group of children considered mentally

deficient and “unteachable”. She recognised that these children responded

favourably when they found an activity interesting in a supportive rather than

corrective environment. She devised a very successful methodology to teach these

children now known as the Montessori Method. It includes an education tailored to

an individual’s level of functioning and pace, an active role for everyone in the

classroom, “fail-safe” activities which contribute to the child’s sense of self-worth and

a variety in the ways of learning. Montessori philosophy and mission was to enable

individuals to be as independent as possible, to have a meaningful place in their

community, to possess high self-esteem and finally to have a chance to make

meaningful contributions to their community

Dr Cameron Camp (Director of research and development at Centre for Applied

Research in Dementia) recognised the potential for Montessori technique to be

adapted for dementia and has done extensive research in this field.

Along with devising many other activities, he also conceived specially adapted books

for people with dementia to bank on the fact that most of them still have their

procedural memory intact and can read and enjoy a good book.

8

These books have larger font with writing on one side of the page. They also ensure

that the sentences don’t run over to the next page. All this helps to combat the

confusion and minimises distraction to make reading more enjoyable. They are also

designed to be read in groups to add the social incentive to reading a book. An

example of such book is given below.

Montessori as adapted to Dementia care

In terms of dementia, Montessori technique focuses on the human need for sensory

and cognitive stimulation. Activities are designed to be engaging, provide stimulation

for the senses and promote a sense of independence and achievement in the

individual. The level of difficulty is adapted to individual’s capabilities. There is an

9

emphasis on "doing" as it helps the individual exercise control over their

environment. These activities have shown to decrease agitation and increase

engagement in people with dementia.(16,17)

A Montessori based care would start with an individual’s needs assessment. This is

done on a basic level with Maslow’s hierarchy of needs i-e physical needs (I-e pain,

hunger, physical, discomfort) must be dealt with before higher needs (the need for

intellectual stimulation, love, and self-esteem) are tended to.

The next step is assessing what the individual’s physical and mental capabilities are.

This includes taking into account any comorbidities such as arthritis as well as the

level of their cognitive decline.

With the above limitations in mind, the activities are tailored to individual’s past

profession and interests. For example, for someone who was a tailor, a fabric based

activity might be suitable. There are 4 types of activities used in Montessori Method:

activities of daily living, sensory, cognitive, and roles and routines. An activity may

incorporate one or more of these components. The aim is to encourage maximum

mental and physical mobility.

In addition to activities, environment plays a key role in maximising the physical and

social wellbeing of a person with dementia. It is important that the environment

provides intrigue and there are things to do at hand e.g. having reminiscing photo

books on tables. It is equally important that environment is familiar to them. This

might be achieved in residential care by personalising their rooms with their

belonging e.g. pictures, paintings and pieces of furniture from their home. Having the

room set up the same way they had at home might also be helpful. It is always

recommended to have lots of reassuring environmental cues to combat some of the

10

confusion and fear that dementia brings along. It might also help to have the

answers to their most frequent questions printed and displayed within their line of

vision.

The people in regular contact with a person with dementia e.g. family and carers

need to be mindful that verbal communication might not be possible in some cases

but that need not limit their social interaction with them. There are ways to engage

with them other than verbal communication e.g. offering to make their hair for them

or doing an activity together. Montessori activities should always be explained by

demonstration rather than verbal directions. “Validation” can be used to interact with

people with dementia to build a rapport and open a channel of communication. It

involves validating their concerns and fears. For example if a person with dementia

tells carer “I am waiting for my husband to come home before I have dinner.” It might

be useful to ask them a question about their husband rather than reminding them

that their husband had passed away a long time ago.

Application of Montessori Technique in residential care settings:

I had an opportunity to spend a day at two residential care units in North Eastern

Community Hospital in Adelaide where Montessori based activities are used for

residents by “life-style and leisure co-ordinators”.

The residents are invited to part-take in these activities from 10.30 till noon and 1.30

till 4pm every day. Activities include flower arranging, folding clothes, finding shells in

sand and matching and sorting objects based on colour and shapes.

11

A sorting activity based on

shapes. It aims to focus on

hand-eye co-ordination, as

well as repetitive

movement to preserve

function.

It was great to see people engaged in these activities. It was easy to see that they

were enjoying them. I found a lady, Brenda (not her real name) looking for sea shells

in the sand. “I loved going to the beach when I was little” she told me “My sister and I

would gather lots of seashells and play with them.” After having found all the shells,

she went on arrange them into a pattern.

12

On another table, a gentleman was busy slotting blocks in relevant shapes. The task

was made difficult due to severe arthritis in his hands. However, he was very

focused and determinedly continued with the painstaking fine movements while his

lunch waited near him.

Other people around the room chose from activities such as reading, reminiscing

photo books, flower arranging and handling babushkas dolls. One of the ladies

occupied herself with ironing and putting clothes on a line.

13

I left the hospital with an impression that these activities provide the residents with

much needed stimulation and sense of accomplishment as well as keeping them

14

physically and mentally active. It allows them to enjoy the present moment while

doing something meaningful with their time.

Apart from the obvious holistic benefit, there is some evidence (16) that these

interventions result in reduction in “responsive behaviours” in people with dementia.

Behaviours such as wandering, general restlessness, agitation, grabbing on people,

pacing, repetitive questioning and requests for help, trying to get to a different place

(exit seeking) and verbal issues ( e.g. screaming and swearing) are referred to as

responsive behaviours as they are thought to be caused by unmet needs coupled

with memory loss. Montessori postulated that “boredom and restlessness are

integrally related to problem behaviours”

Case Study

I met up with Thelma, an 87 year old lady with dementia at her house. She lives with

her daughter Cheryl and son-in-law and has lived with them for past three decades.

Thelma was diagnosed with dementia in 2009 which has been confirmed to be the

Lewy body type recently. Cheryl, who is a carer for her mother tried daily Montessori

activities with her a year ago and they were both very happy with the outcome.

Talking about her experience, Thelma recalls “Montessori activities pulled out of a

black hole I was in.” Cheryl feels that they have been a great use to her as a carer

too “I can gauge how mum is doing based on these activities on a daily basis”

Thelma had a baseline score of 16 on the Mini Mental State Exam (MMSE),

however, after 6 months of daily Montessori activities, her score went up to 24.

MMSE is a diagnostic scale used to help with the diagnoses of Dementia and is

scored out of 30. A score of below 23 is usually closely co-related to dementia.

15

Thelma and Cheryl still do these activities on a regular basis and were kind enough

to let me observe one of these sessions.

1VegetableBingo

16

Matching pictures to words

2

Reading together

Other art based interventions:

It can be argued that human beings are inherently creative. Regardless of any

background in art, we are all intrigued by colours, shapes and interfaces as well as

sounds. The processes of both learning and creation are associated with a sense of

reward, self-accomplishment and purpose in life. All this makes art based

interventions very favourable for people with dementia.

“Alzheimer’s Australia” run a programme called “give it a go” for people with

dementia and their carers. It provides them with a platform to meet up and

participate in various activities such as painting, poetry, tai chi, and dance etc.

17

One of the other interventions used is “Child representational therapy” It is defined

as “A validation/reminiscence and diversional intervention that provides people with

dementia an opportunity to interact with a ‘life-like’ baby doll in a manner that is

therapeutic to them. “

A life-like baby doll

The therapeutic value comes from the emotional expression to or about the baby

doll, a sense of purpose and comfort in looking after and holding the “baby” (Some

may perceive it as a real baby, others may not) and reminiscence about personal

child rearing experience.

The child representational therapy may be of use to people with who have social

withdrawal or “responsive” behaviour. It may work better with people who liked being

around children or had children themselves. It is also shown to have better

therapeutic value whereas the person with dementia perceives the doll to be a real

baby. In such cases, it is crucial for carers to mirror their behaviour and treat the

baby as they would a real baby.

18

It is very important to inform family and significant others about the therapy in detail

and gain their consent as some people may find it patronising and condescending for

dolls to be used for adults.

Conclusion

It has become clear in recent years that for optimum outcomes for a patient with

dementia, the care system would have to be focused on preserving a person’s

identity and “person-hood” (18)

Montessori and other art-based interventions tend to focus on the person within the

patient and provide people with a meaningful way of spending their time, doing

something they enjoy while at the same time preserving social, cognitive and

physical function.

There are lessons to be learned from this successful use of art for positive medical

outcomes and there is room for exploration of application of these techniques in

other areas of medicine too.

Thanks to international collaboration, some of the Montessori methods used by

Alzheimer Australia are now being adapted by Manchester Art Gallery and

Manchester Museum.

19

References

1. Wimo A, Winblad B, Jönsson L. The worldwide societal costs of dementia: Estimates for 2009. Alzheimers Dement. 2010 Mar;6(2):98–103.

2. Manthorpe J, Moniz-Cook E. Early Psychosocial Interventions in Dementia: Evidence-Based Practice. Jessica Kingsley Publishers; 2008.

3. Weiner MF, Lipton AM, editors. American Psychiatric Publishing Textbook of Alzheimer’s Disease and Other Dementias: The App Textbook of Geriatric Psychiatry Diagnostic Issues in Dementia. 1st ed. American Psychiatric Publishing, Inc.; 2009.

4. FMedSci JCEUMFrcpF, FRCPath SSCM. General and Systematic Pathology: with STUDENT CONSULT Access, 5e. 5th ed. Churchill Livingstone; 2009.

5. Kuljis RO. Toward a multi-dimensional formulation of the pathogenesis and pathophysiology of the Alzheimer dementia-like syndrome applicable to a variety of degenerative disorders and normal cognition. Med. Hypotheses. 2009 Sep;73(3):315–8.

6. Bruvik FK, Ulstein ID, Ranhoff AH, Engedal K. The effect of coping on the burden in family carers of persons with dementia. Aging Ment. Health. 2013 Apr 24;

7. Health-Related Quality of Life for Caregivers of Patients Wi... : Alzheimer Disease & Associated Disorders [Internet]. [cited 2013 Apr 28]. Available from: http://journals.lww.com/alzheimerjournal/Fulltext/2003/10000/Health_Related_Quality_of_Life_for_Caregivers_of.3.aspx

8. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin. Neurosci. 2009 Jun;11(2):217–28.

9. Wilson RS, Mendes De Leon CF, Barnes LL, Schneider JA, Bienias JL, Evans DA, et al. Participation in cognitively stimulating activities and risk of incident Alzheimer disease. Jama J. Am. Med. Assoc. 2002 Feb 13;287(6):742–8.

10. Verghese J, Lipton RB, Katz MJ, Hall CB, Derby CA, Kuslansky G, et al. Leisure activities and the risk of dementia in the elderly. N. Engl. J. Med. 2003 Jun 19;348(25):2508–16.

11. Raglio A, Bellelli G, Mazzola P, Bellandi D, Giovagnoli AR, Farina E, et al. Music, music therapy and dementia: A review of literature and the recommendations of the Italian Psychogeriatric Association. Maturitas. 2012 Aug;72(4):305–10.

12. Hong IS, Choi MJ. Songwriting oriented activities improve the cognitive functions of the aged with dementia. Arts Psychother. 2011 Sep;38(4):221–8.

13. Mihailidis A, Blunsden S, Boger J, Richards B, Zutis K, Young L, et al. Towards the development of a technology for art therapy and dementia: Definition of needs and design constraints. Arts Psychother. 2010 Sep;37(4):293–300.

20

14. Sperling G. A Model for Visual Memory Tasks. Hum. Factors J. Hum. Factors Ergon. Soc. 1963 Feb 1;5(1):19–31.

15. Anderson JR. Language, Memory and Thought. Routledge; 1976.

16. Van der Ploeg ES, Eppingstall B, Camp CJ, Runci SJ, Taffe J, O’Connor DW. A randomized crossover trial to study the effect of personalized, one-to-one interaction using Montessori-based activities on agitation, affect, and engagement in nursing home residents with Dementia. Int. Psychogeriatrics Ipa. 2013 Apr;25(4):565–75.

17. Ozdemir L, Akdemir N. Effects of multisensory stimulation on cognition, depression and anxiety levels of mildly-affected Alzheimer’s patients. J. Neurol. Sci. 2009 Aug 15;283(1-2):211–3.

18. Kitwood T, Bredin K. Towards a Theory of Dementia Care: Personhood and Well-being. Ageing Soc. 1992;12(03):269–87.