the creative arts therapies in the treatment of neuro

Aldridge, D (2001) The creative arts therapies in the treatment of neuro-degenerative illness.Music Therapy Today (online), November, available at www.musictherapyworld.info

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The creative arts therapies in the treatment ofneuro-degenerative illness

David Aldridge

Neuro-degenerative diseases are,and will remain, an enormous publichealth problem. Interventions thatcould delay disease onset evenmodestly will have a major publichealth impact. These diseases aredisabling to the sufferers, there is aloss of normal motor functioning, achange in mood, and a gradual lossof cognitive abilities. Furthermore,we do not suffer alone, these losseshave an impact upon family andsocial life. While there are numerousprojects aimed at finding medicalrelief for suffering and the treatmentof disease, we are reminded thatthese problems are also illnesses.Behaviour is influenced. We arechallenged as a society that peoplewithin our midst are suffering and itis our responsibility within thedelivery of health care to meet thatchal lenge wi th appropr iateresponses. A major confrontation forthose offering treatment, as it is forthe patient, is that the problem itselfis degenerative; there is no cure.Furthermore, the problems facing

patients confront the deepest fearsof a consumer success orientedsociety. Decline, physical andmental, is not readily faced withincommunities that expect youthappearance, worldly success andphysical ability as the outer sign ofacceptable personhood (Aldridge2000b).

In 1997, the numbers of individualsin the United States with Alzheimer’sdisease was estimated 2.32 million(range: 1.09 to 4.58 million); of theseindividuals, 68% were female. Thenumbers of newly diagnosed casesthat can be expected over the next50 years were estimated from amodel that used age-specificincidence rates summarised fromseveral epidemiological studies andis projected that the prevalence willnearly quadruple in the next 50years, by which time approximately 1in 45 Americans will be afflicted withthe disease (Brookmeyer, Gray, andKawas 1998).


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The prevalence of dementia insubjects 65 years and older in NorthAmerica is approximately 6%-10%,with Alzheimer's disease (AD)accounting for two-thirds of thesecases (Hendrie 1998). If mildercases are included, the prevalencerates double. While a genetic basisfor Alzheimer's disease has beenidentified, the search for non-geneticrisk factors has been lessconclusive. Only age and familyhistory of dementia are consistentlyassociated with AD in all studies.

Dementia is an important source ofchronic disability leading to bothspiralling health care expenditureamong the elderly and a progressivedisturbance of life quality for thepatient and his or her family. In theUnited States of America the cost ofinstitutional care for patients withdementia is estimated at over $25billion a year . If 4% to 5% of theNorth American elderly populationsuffer from dementia then 1.25% ofthe total population are suffering withthe problems of severe dementia.Other estimates of the samepopulation suggest that 15% ofthose over the age of 65 will havemoderate to severe dementia withprojections to 45% by the age of 90years (Aldridge and Aldridge 1992;Aldridge and Brandt 1991). As theprevalence of dementia increasesdramatically with age, the elderlyrepresent the largest populationmanifesting dementia (Brotons,Koger, and PickettCooper 1997).With anticipated increases in the

population of the elderly in Europe *,then it is timely to find treatmentinitiatives in the Western world whichwill ameliorate the impact of thisproblem.

It is in a primary care setting wheredementia is recognised , and earlyrecognition is important for initiatingtreatment interventions before aperson becomes permanently orsemi-permanently institutionalisedand to minimise disability (Larson1998). The challenge that we face ishow to handle such a progressivedegenerating disability over time.

Parkinson’s disease is also acommon neuro-degenerative diseaseaffecting approximately 1% of theelderly population. The disease isdefined by motor abnormalities, thesigns of which are bradykinesia,rigidity and tremor when the body isat rest. The clinical picture is,however, much more complex, andpatients with Parkinson’s disease,like those with Alzheimer’s diseaseare prone to affective disturbances,anxiety syndromes and possiblypsychosis (Marsh 2000b).

Multiple Sclerosis is a progressivedisease result ing in motordisturbances, sensory disturbancesand changes in cognition. Althoughtreatments are continually being

* between 23% and 25% of the nationalpopulations aged over 65 by the year 2040Aldridge, D (1993a) Music and Alzheimer'sdisease--assessment and therapy: discussionpaper. Journal of the Royal Society o fMedicine 86, 2 , 93-5..


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sought, those available orientatethemselves to the relief of symptomsand palliation. As in the otherdisease we see a picture ofcognitive dysfunction and sometimesdementia (Mahler and Benson 1990).When combined with the severestpossible symptoms of ataxia orparalysis impairing nearly allvoluntary and functional movement,loss of speech, the inability toswallow, and extreme fatigue, theindividual can experience self doubt,anxiety, and reduced self esteem(Randall 1982).

Huntington's Disease is also achronic progressive hereditarydisease affecting the central nervoussystem. Here too we see largeinvoluntary movements andabnormality of those movementsaccompanied by gradual cognitivedeterioration. Emotional disorders,behav ioura l p rob lems andpersonality changes may beexperienced, leading to psychiatricsymptoms as we have seen in theother degenerative diseases(Folstein, Folstein, and McHugh1975; Morris 1991). Speech isincreasingly challenged as thedisease progresses. In terms ofcommunication and movement, then

initiation, spontaneity and rate ofspeech are influenced. However,insight may remain into the mostadvanced stages of the illness(Shoulson 1990) The average age ofonset is 36 - 45 years of age, and ,like the other degenerative diseaseappears to follow stages (Folstein1989). Studies examining theduration of the illness have yieldedwidely varying results, suggestingbetween ten to forty years durationafter onset (Harper 1991).

In all the above disease we see acommon core of progressivedeterioration; a loss of bodilyin tegr i t y , fa i l ing cogn i t i vecompetence and the demise ofemotional coherence. To this wemust add the potential for socialisolation that this deterioration brings,and isolation is the road to despair(Aldridge 1998) (see Figure 1). Anyadjuvant therapies that will addressthese factors will offer a significantpart of a modern treatment strategyfor the neuro-degenerative disease.The expressive arts therapies are tobe considered as a part of thisstrategy.


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LIFEEVENT

strategy ofmanagement

STABILITY

is distress reduced?

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II

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IV

distress continuesproblem maintained

SPECIALIST REFERRAL

CONTACTGENERAL PRACTITIONER

YES

NO

ATTEMPTEDSOLUTIONS


YES

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distress continuesproblem maintained


YES

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LIFE THREATENING EVENT

CHANGE

E S C A L A T I N G D I S T R E S S

D E - E S C A L AT I N G D I S T R E S S

ATTEMPTEDSOLUTIONS

E I T H E R

O R

Figure 1: Cycles of distress escalation and de-escalation

Clinical descriptions of dementia

The clinical syndrome of dementia ischaracterised by an acquired declineof cognitive function which isrepresented by memory andlanguage impairment. While theterm dementia itself is used widelythroughout the medical literature, andin common usage, to describecognitive impairment it is generallyapplied to two conditions: dementiaof the Alzheimer’s type (DAT) andmulti-infarct dementia.

The course of Alzheimer’s disease isone of progressive deterioration

associated with degenerativechanges in the brain. Suchdeterioration is presented in a clinicalpicture of episodic changes and apattern of particular cognitive failingswhich are variable (Drachman,O’Donnell, Lew et al. 1990). Mentalstatus testing is one of the primaryforms of assessing these cognitivefailings which include short and longterm memory changes, impairment ofabstract thinking and judgement;disorders of language (aphasia), anddifficulty in finding the names ofwords (anomia); the loss of ability tointerpret what is heard, said and felt(agnosia); and an inability to carryout motor activities, such as


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manipulating a pen or toothbrush,despite intact motor function(apraxia). When such clinical findingsare present then a probablediagnosis can be made, a moredefinite diagnosis depends upontissue diagnosis. Aldridge hassuggested that music therapyprovides a sensitive ecologicalmethod of assessment frodetermining cognitive abilities thatare residual when speech is beinglost and communicative abilitieswithin an ecological context thatmakes sense to the patient (Aldridge1993a; Aldridge and Aldridge 1992;Aldridge 1994; Aldridge and Brandt1991; Aldridge 1993b). Indeed, themusic therapy setting can beexperienced as less challenging thancognitive testing, and thereforeunconfounded by patient anxiety.

While dementia of the Alzheimer’stype begins after the age of 40, andis considered to be a disease of theelderly, the influence of age onprognosis is not as significant as theinitial degree of severity of theprob lem when recogn ised(Drachman et al. 1990). Diseaseseverity, as assessed by intellectualfunction, appears to be the mostconsistent predictor of thesubsequent course of the diseaseparticularly when accompanied by acombination of wandering and falling,and behavioural problems (Walsh,Welch, and Larson 1990). However,the rates of decline between subgroups of patients are variable and apatient’s rate of progression in 1 yearmay bear little relationship to futurerate of decline (Salmon, Thal, Butterset al. 1990). Some authors (Cooper,Mungas, and Weiler 1990) suggestthat an as yet unproven factor, other

than declining cognitive ability, mayalso play a part in the associatedabnormal behaviours of anger,agitation, personality change,wandering, insomnia and depressionwhich occur in later stages of thedisease.

A performed identity

There is a profound level ofunderstanding that lies beyond, orbefore, verbal communication.Underlying the concept of aperformed identity is the notion thatwe “do” who we are. We perform ourvery selves in the world as activities.This is as basic as our physiologyand provides the ground ofimmunology, a performance of theself to maintain its identity. Over andabove this, we have the performanceof a personality, not separate fromthe body, for which the body servesas an interface to the social world.We also perform that self amongstother performers, we have a socialworld in which we “do” our lives withothers. This is the social self that isrecognised and acknowledged by ourfriends, lovers and colleagues. Thisperformed identity is not solelydependent upon language but its iscomposed rather like a piece of jazz.We are improvised each day to meetthe contingencies of that day. Andimprovised with others, who mayprove to be the very contingenciesthat day has to offer!

We perform our identities and theyhave to have form for communicationto occur. Such form is like musicalform. Language provides the contentfor those per-form-ances. Thus weneed an authored identity to expressthe distress in a coherent way with


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others to generate intelligibleaccounts (Aldridge 2000b). We havea network of coherent symbols asperformed narratives. If languagefails then the opportunity for us toaccord our form, as selves, withothers, appears to fail.

Narratives are constructed andinterpreted. They lend meaning towhat happens in daily life. We allhave our biographies. What happensto our bodies is related to ouridentities as persons. Thesenarratives are not simply personalstories, but sagas negotiated in thecontexts of our intimate relationships.These understandings are alsoconstructed within a cultural contextthat lend legitimacy to thosenarratives. Thus meanings arenested within a hierarchy of contexts.The same process applies to thehistory of our bodies, to thebiography of our selves, to thenarratives used by clinicians, or tothe tales told by the elders of a tribe(Aldridge 2000).

The patient and his or her familyhave a story about the problems theyface. And this story has to be told. Itis in the telling that we understandwhat needs are. It is also in the thisact of telling that we have theopportunity to express ourselves.The expression of our needs is aperformative activity. A patient’snarrative about his illness does notalways point out the meaningdirectly, it demonstrates meaning byrecreating pattern in metaphoricalshape or form in the telling that isinterpreted within relationship.Symptoms in an illness narrative area symbolic communication as theyare told and confessed. Symptoms

are signs that have to both observedand interpreted in their performance.We know that many elderly peoplevisit their general practitionerexpressing pain and expect aphysical examination. Very few saydirectly that it is painful being lonelyand that they are rarely touched. In aculture where it is not allowed toexpress such emotional needs ofsuffering and touch directly, then thenarrative becomes a medical story ofpain. Suffering is embodied as pain.While we may temporarily relievepain with analgesics, our task is alsoto understand, and thereby relieve,suffering. In this way the ecology ofideas, that some call knowledge, isexplicated within the body as acorrespondence between mentalrepresentations and the materialworld. The setting in which weexpress ourselves will have aninfluence upon what we express. Anextension of this will be that we, ascaregivers, are open to theexpression of other narratives.Creative arts therapists then will beonly too aware of the possibilities ofsymbolic communication. We are thesetting that narratives may becreatively expressed.

The nature of communicationbreakdown, how it is signalled, how itis repaired, and the outcome of therepair process, appears to bedependent upon the stage of thedisease. What is unknown, however,is the nature of the longitudinalchanges in the resolution ofcommunication breakdown over theprogression of the disease. In theearly and middle stages of aprogressive disability, then it ispossible to achieve some success inr e s o l v i n g c o m m u n i c a t i o n


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breakdowns despite decliningcogn i t i ve , l i ngu i s t i c , andconversational abilities of thesufferer. We may need to considernot just the patient but the caregiverstoo in training programmes (Orange,VanGennep, Miller et al. 1998).

Meanings are linked to actions, andthose actions have consequencesthat are performed. What ourpatients think about the causes oftheir illnesses will influence what theydo in terms of treatment, which inturn will influence what they do in thefuture. As practitioners, we lendmeaning to the events that arerelated to us by our patients, weavingthem into the fabric of our treatmentstrategies. We must learn tounderstand each others language forexpressing and resolving distress,and act consequently. In a series ofstudies by Pennebaker (Dienstfrey1999; Pennebaker, Kiecolt-Glaser,and Glaser 1988), writing asdisclosure of distressing experiencesis seen to have health care benefits.These expressions are non-verbaland predicated upon bodilyexpressions, that can be seen inmovement; or vocal, that are sung;or visual, that are painted. In this waythe creative arts offer not onlycontexts for expression, but alsocontexts for resolution, congruent tothe mode in which the patientchooses to perform him, or her, self.

For the verbally inarticulate, this hasan important ramification as they areoffered understanding and thepotential for resolution of theirdistress. For the elderly suffering withdement ia , a l though verba lcommunication fails, we can offercontexts of expression and

understanding where gesture,movement and vocalisation makecommunicative sense.

For those struggling with verbalarticulation, the structuring ofnarratives offers a meaningfulcontext in which expression canoccur. Remembering a story offersan overarching framework that linksevents together. We will see laterthat when a piece of favourite musicis played then there is a cascade ofmemories from an initial prompting,even if we can’t remember the nameof the composer or lyricist. Asindividuals we are stories, we arecomposed and those compositionsremain.

Health as performance in apraxis aesthetic

Performed health is dependent upona variety of negotiated meanings,and how those meanings aretranscended. As human beings wecontinue to develop. Body and selfare narrative constructions, storiesthat are related to intimates atchosen moments. Meanings arelinked to actions, and those actionshave consequences that areperformed. The maintenance andpromotion of health, or becominghealthy, is an activity. As such it willbe expressed bodily, a praxisaesthetic. Thus we would expect tosee people not only having sets ofbeliefs about health but also actionsrelated to those beliefs. Some ofthese may be dietary, some involveexercise, some prayer or meditation,some medication and others artistic.

The social is incorporated, literally “inthe body”, and that incorporation is


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transcended through changes inconsciousness, which becomethemselves incarnate. Through thebody we have articulations ofdistress and health. While healthmay be concerned with the relief ofdistress, and can also be performedfor its own sake, sickness is aseparate phenomenon. It is possibleto have a disease but not bedistressed. Indeed, it is possible tobe dying and not be distressed. Yetfor those who are described as beingdemented, there is a schismbetween the social and the body.When communication fails, weliterally “fall out” with other people,we fall out of relationship. We loseou r consc iousness whenconnections fail and these areliterally organic in the context ofdementia and the implications arefar-reaching when our body falls outwith our self.

If we take my earlier metaphor ofcomposition, when bodily functionfails, then we are literally de-composed. Yet, as human beings weknow that despite our physicalfailings, something remains withinus. There is a self that responds.Despite all that medical science willhave to offer us regarding thedecomposition of the physical body,it is the composition of the self thatwe must address in our therapeuticendeavours. It is to the psychologicaland humanistic sciences that wemust direct our attention if we are togain the knowledge necessary thatwill aid us in working with those whocome to us for help.

The coherent body and thesubjective now

The body becomes an interface forthe expression of identity that ispersonal and social. In ametaphysical tradition, the humanbeing is considered as a self-contained consciousness, homoclausus; yet Smith (Smith 1999)argues for an alternative model,homo aperti, the idea that humanbeings gain identity throughparticipation in social groups. Myargument is that this identity isperformed. Both personal and socialare necessary. The interaction ofpersonal and social is circular, andthe difference between themconstructed. Bodies expressthemselves at the interface of thepersonal and the social. Using thebody communicates to others. Usingthe body achieves perception of theenvironment, and that includes thosewith whom we live. But theperformance of the body requires abiological system that is intact, asystem that remains coherent overtime. Memory is the coherence ofevents in time. When memory failsthen a sequence of events lose theircoherence. Not only that, if we fail torespond to events that demand areturn performance, we areperceived as unresponsive. And thecoherence of events is a rudimentarynarrative. Our perception of self isdependent upon coherence in time.

I have used in earlier books theconcept of human being as beinglike a piece of improvised music(Aldridge 1999; Aldridge 2000b). Forthe piece to work as music it has tomaintain coherence. We could justas well as taken a raga form where a


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theme is improvised to its limits, thetension lying in the variation and itsrelationship to the original theme. Toachieve coherence we have toengage in a form that exists in time.A piece of music achievescoherence in its maintenance ofform. Exactly so with our personalform in social life. If we lose time,then we lose our sense ofcoherence, and we lose ourcognitive abilities too. Just aschildren gain cognitive abilities withtheir increasing ability to hold eventstogether coherently in time, then wesee the reverse process in theperformance of the demented –demented being literally withoutmental form. This may occur as aperformance difficulty through theloss of connections. Within us, thereis still a self, with its continuing storythat has a developmental need. Howis that story then to be expressed?How does the narrative continuesuch that the saga is told to its end?To do this we need to reconnect. Aswe see in recovering coma patients,it is the connection of existingcapacities in a context of jointattention that leads to animprovement in consciousness(Aldridge 1990, Aldridge 1996). Withelderly patients that are demented,therapy must be directed toconnecting what intrinsic abilitiesremain. While these may not beverbal, there are other possibilities.

The body has perhaps beenneglected in communication studiesas we emphasise language, yet it isgesture that is pre-verbal andpromotes thought. Posture,movement and prosodics inrelationship provide the bases forcommunication. Through the

medium of an active performedbody, health is expressed andmaintained. Here is the bodily formthat guides communication and bywhich the other may be understoodand has an ambiguous content, it issocial. Language provides a specificcontent, it is cultural. We know thatsomeone is suffering by theirappearance, what the specific natureof that suffering is they need to tellus. We know someone is happy bywhat they do, what makes them sohappy, they need to tell us. Inaddition, by moving as if we werehappy, we may promote happiness.By moving as if we were sad, wemay promote sadness. Thus thebody, and a moved body at that, iscentral to a life amongst others.

Understanding each other

Our stories are our identities. Howwe relate them to each otherconstructively, so that we mutuallyunderstand each other, is the basisof communication. What we do, orpersuade others to do, as aconsequence of those communicatedstories is an exercise of power. Hownarratives are interpreted isimportant for understanding theensuing possibilities of treatment. If aperson is seen as being illegitimatein her demands for treatment thenshe may be seen as a social casenot needing medical help, and this iscritical at a time of stretched medicalresources. If a person is seen asbeing aggressive in his demands bythe way in which he expresseshimself then he may be sedatedrather than change the setting inwhich he finds himself. This processof problem resolut ion hasconsequences for the continuing


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narration of a patient biography thatbecomes dislocated from a healthypersonal biography. If we becomedislocated from our personalbiographies then we suffer. Either weare labelled as deviant and becomestigmatised, or we become isolated.

In the elderly that become demented,we see people dislocated from theirbiographies socially, by entering intocaring institutions, and personally.Memory fails, and with it self fails toachieve a performance in daily lifethat integrates varying faculties. Thevery “I” that is myself fails to performthe me that we all know. Thus theinterface that is self in performanceloses its narrative form. Fortunately,the fundamental basis ofcommunication on which thatperformance is based, our inherentmusicality, remains. In the followingchapters we will see how skilledpractitioners invoke what is still there.The “I” finds its me. All is not lost.There is hope and with that hopethen healing.

Creative arts approaches and thepromotion of identity

The maintenance of an intact identityis central therapeutic principle inworking with those suffering fromneuro-degenerat ive diseases(Aldridge 2000a; Harlan 1993)(Johnson, Lahey, and Shore 1992)(Magee 1999). At the same time, wealso see that coping with emotionsand finding a suitable form for theexpression is necessary and isfacilitated by the expressive artstherapies. Furthermore, we also findthat the arts therapies motivatesuffers to communicate and this itselfis a way out of what is often an

increasing isolation. Expressive artsoffer a challenging and stimulatingexperience within the capabilities ofthe sufferer (Harlan 1993).

Magee alerts us to working withindividuals who have advancedneurological disabilities (Magee1998). She writes that one of themany challenges for the therapist isthat of finding instruments which areappropriate to meet a diverse rangeof needs. Instruments, particularlythose that are safe for theuncontrolled nature of ataxic orchoreic movements and sensitive tothe very small, weak or fatiguedmovements (Magee 1999). In aprocess of “illness monitoring”,through the involvement in musictherapy, patients are aware ofcognitive, vocal and physicalchanges (Magee 1998). Throughplaying instruments within clinicalimprovisations, individuals monitoredtheir physical abilities to manipulateinstruments and control the soundsthey produced. Aldridge (Aldridgeand Aldridge 1992) also found asimilar situation when playing with afemale patient who became aware ofher failing capabilities as well as thebenefits of music playing.

It is , however, the maintenance ofability and in some case even thepromotion of potentials that is avaluable therapeutic resource forsuch patients despite a prevailingsense of loss. Music therapychallenges a stigmatised andchanged identity (Aldridge 2000a).Through actively playing, peoplehave the opportunity to experiencethemselves as both creative andbeautiful in the midst of deteriorationand a severely curtailed future.


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Research approaches to newtreatments

Brotons (Brotons 2000; Brotons et al.1997; Brotons and Pickettcooper1996) , and her colleagues (Koger,Chapin, and Brotons 1999), hasreviewed the literature relating to themusic therapy treatment ofdementia. Research outcomes werecategorized, coded, and summarizedto outline recommendations that maybe used in clinical practice as well asin future research. In general,music/music therapy is an effectiveintervention to maintain and improveactive involvement, social, emotionaland cognitive skills, and to decreasebehavior problems of individuals withdementias. What is lacking is aneffective clinical trial of musictherapy. Vink (Vink 2000), inHolland, is about to implement acontrolled clinical study of musictherapy for the relief of agitation inpatients suffering with dementia.Music therapy is seen as apotent ia l l y impor tant non-pharmacological approach in themanagement of agitation.

Until recently, psychotherapy andcounselling techniques had rarelybeen used with people withdementia. However, the change inemphasis within dementia caretowards a person-centred approach,and often non-pharmacologicalapproach, has meant that there is agrowing clinical interest in their use(Beck 1998; Bender and Cheston1997; Bonder 1994; Cheston 1998;Johnson et al. 1992; Richarz 1997).This has also meant an increase instudies using creative artstherapies(Bonder 1994; Harlan 1993;Johnson et al. 1992; Kamar 1997;

Mango 1992) and overviews ofmusic therapy as a treatmentapproach to Alzheimer's diseasehave already been written (Aldridgeand Brandt 1991; Brotons 2000;Brotons et al. 1997; Smeijsters1997).

Individuals with Alzheimer diseaseoften experience depression, anger,and other psychological symptoms.Various forms of psychotherapyhave been attempted with theseindividuals, including insight orientedtherapy and less verbal therapiessuch as music therapy and arttherapy . Although there are fewdata-based outcome studies thatsupport the effectiveness of theseinterventions, case studies anddescriptive information suggest thatthey can be helpful in alleviatingnegative emotions and minimisingproblematic behaviours.(Bonder1994)

Although there is a developingclinical literature on interventiontechniques drawn from all the mainpsychotherapeutic approaches, therehas been little research into theeffectiveness of this work and suchresearch as does exist often usesmethodologies that are inappropriatefor such an early stage of clinicaldevelopment. While some authors(Cheston 1998) argue that clinicalresearch should adopt case study ors ingle-case designs, someresearchers are also planning groupdesigns for evaluating new clinicaldevelopments. My argument is for abroad spectrum of research designsthat will satisfy differing needs but formusic therapy to be accepted withina framework of health care delivery


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then we will need to commitourselves to a series of clinical trials.

The patient and his caregivers

The absence of definitive treatmentsfor Alzheimer's disease and relateddementias, researchers in a varietyof disciplines are developingpsychosocial and behaviouralintervention strategies to helppatients and caregivers bettermanage and cope with thetroublesome symptoms common inthese conditions. These strategiesinclude cognitive interventions,functional performance interventions,envi ronmenta l in tervent ions,integration of self interventions, andpleasure-inducing interventions.Although more research is needed tofurther develop these strategies andestab l ish the i r best use,psychosocial and behaviouralinterventions hold great promise forimproving the quality of life and well-being of dementia patients and theirfamily caregivers (Beck 1998;Orange et al. 1998).

We know that people who aresuffering do not suffer alone(Aldridge 1998; Aldridge 1999).There is an increasing expectationthat the community will care for itselderly infirm, although thisexpectation is rarely met by financialresources that will support suchcare-giving placing the caregiversunder stress, while relieving acommunity budget in the short term.

Recent research on care-giver stressfocuses extensively on its predictorsand health consequences, especiallyfor family members of persons withdementia, Gwyther and Strulowitz

(Gwyther and Strulowitz 1998)suggest four areas of care-giverstress research: caregiver healthoutcomes, differential impacts ofsocial support, care giving for familymembers with dementia, andbalancing work and care-givingresponsibilities.

In a study by Harris (Harris 1998), in-depth interviews with 30 sonsactively involved in caring for aparent with dementia elicit theunderstanding of sons' caregivingexperiences. Common themes thatemerge from their narratives are asense of duty, acceptance of thesituation and having to take chargeas well as issues regarding loss, achange in relationships with otherbrothers and sisters, the reversal ofrole from based on having to takecharge and the necessity to developcoping strategies.

The psychological well-being ofcaregivers of demented elderlypeople was investigated (Pot, Deeg,and VanDyck 1997). Three groups ofcaregivers were distinguished: thoseproviding care for two years afterbaseline; those whose care-recipientdied within the first year afterbaseline, and those whose care-recipient was institutionalised withinthe first year. All groups ofcaregivers showed a great amount ofpsychological distress compared to ageneral population sample, with anoverall deterioration of psychologicalwell-being . As the elderly patientdeclined, and the caregiving at homecontinued, then psychologicaldistress increased. For caregiverswhose demented care-recipient haddied or was institutionalised in thefirst year after baseline then there


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was no deterioration. There is, then,a high level of psychological distressand deterioration in psychologicalwel l -be ing among in formalcaregivers of dementia patients andwe may have to reconsider thepersonal and social costs ofdemented older people live on theirown as long as possible if we are notable to release adequate resourcesto support the caregivers.

Part of this support will includesharing information and developingmethods of counselling appropriateto caregivers. Increasing publicawareness, coupled with the wideravailability of drug therapies forsome dementing conditions, meansthat carers are often informed of thediagnosis of dementia. However it isunclear how much sufferersthemselves are told about theirdiagnoses. In a study of howsufferers of dementia were givendiagnostic information of 71 carersrecruited through old age psychiatryservices in East Anglia, half of thesufferers had learned their diagnosis,more from their carers than theirdoctors (Heal and Husband 1998).The age of the sufferer was found tobe related to whether or not doctorstold them their diagnosis, whichsupports a suspicion that there is aprejudice regarding the elderly aboutwhat they can understand. Only 21%of carers were given an opportunityto discuss the issues involved andyounger carers were significantlymore likely to feel that such anopportunity would have been useful.Most of the carers who had informedthe sufferer said that the sufferer hadwanted to know, or needed ameaningful explanation for theirdifficulties, rather than giving more

practical legal or financial reasons.Carers who had not disclosed fearedthat diagnostic information mouldcause too much distress, or that thesufferers' cognitive impairments weretoo great an obstacle. The processof “informing” is a political act anddemands the sharing of knowledge.While this is indeed a specialistmedical task, the consequences ofthat task are explicated in a socialnexus. Caregivers need to beinformed that they can inform.

In the broadest sense of the term,knowledge as diagnosis is based notsolely upon physiology but upon thedeep needs of the patient andcarers. Neither knowledge excludesthe other, both can be reconciled.From such mutual knowledge, aprognosis can be made. Thediagnosis of a medical complaint isalso a statement about personalidentity and the stigma that may beattached to such an identity.Understandings are the loci of powerwhereby illness is explained andcontrolled. In the demand forcaregiver information, such loci areshifting from the educated healthprofessionals to increasingly better-educated caregivers as consumers.

Distress and the neuro-degenerative diseases

Clearly neuro-degenerative diseasescauses distress for the patient. Theloss of memory and theaccompanying loss of language,before the onset of motorimpairment, means that the dailylives of patients are disturbed.Communication, the fabric of socialcontact, is interrupted anddisordered. The threat of progressive


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deterioration and behaviouraldisturbance has ramifications notonly for the patient themselves, butalso their families who must takesome of the social responsibility forcare of the patient, and the emotionalburden of seeing a loved onebecoming confused and isolated.Furthermore, we see a massiveimpact on the way in which thepatient views his, or her future, asradically curtailed, confounded by anidentity that is severely impaired.

In patients suffering with Parkinson’sdisease, it is often the patient’sperception of the handicap thatinfluences their emotional state thanthe actual disability itself (Schrag,Jahanshahi, and Quinn 2001). Whilemotor problems are an importantfeature of these diseases, from apatient’s perspective it is “difficultiesin communication and maintainingindependence; feelings of anxiety,foreboding, and depression; loweredself-esteem; limitations in socialinteraction, and the loss ofaccustomed activities” that are justas debilitating (Brod, Mendelsohn,and Roberts 1998). Indeed, it ismastery of these varying problemsthat is considered to be important inimproving the quality of life ofsufferers (Koplas, Gans, Wisely et al.1999).

Emotional context and ability

As we saw in the above example, itis important to consider the internalworld of the sufferer. Bender andCheston (Bender and Cheston 1997)present a stage model of thesubjective world of dementiasufferers drawing on ideas from bothclinical and social psychology. The

first stage involves feelingsengendered by the process ofdementia and includes four discretestates of anxiety, depression, grief;and despair. The second stage of themodel concerns the behavioursprovoked by process of decline.Finally, a continuum of emotions isconsidered, where the ability of anindividual with dementia to engage inemotional behaviour depends uponthe extent of their cognitiveimpairment and the social context inwhich they are located. In anotherstudy (Vasterling, Seltzer, Carpenteret al. 1997) examines unawarenessof social interaction and emotionalcontrol competency. Impairedawareness of social interaction andemotional control deficits is positivelycorrelated with dementia severity.

As the disease progresses there is adegeneration of the ability tocomprehend and express emotionthat is linked with mental impairment(Benke, Bosch, and Andree 1998).The creative arts therapies havebased some of their interventions onthe possibility for promotingemotional expression and retainingexpressive abilities.

Emotional changes

A source of error in diagnosingAlzheimer’s disease is that it ismasked by other conditions. Principleamong these conditions is that ofdepression which itself can causecognitive and behavioural disorders.In addition it is estimated that 20% to30% of patients with Alzheimer’sdisease will have an accompanyingdepression (Kalayam and Shamoian1990) thereby compoundingdiagnostic problems further.


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We see the same picture emerging inother neuro-degenerative diseases.

At the very onset of Parkinson’sdisease, a group of patients were sodemoralized by the disease that theyrefused treatment, and anassociation between depression andParkinson’s disease is st i l lconsidered to be a part of the clinicalpicture. Apart from this emphasis ondepression, we also see an emergingpicture of anxiety syndromes beingrecogn ized in the neuro-degenerative disease (Kremer andStarkstein 2000). Marsh emphasisesthat while the focus has been ondepress ive symptoms andsyndromes in Parkinson’s disease,anxiety syndromes are increasinglybeing recognized as a commonproblem (Marsh 2000a).

Similarly, in multiple sclerosis, majordepression is considered to be animportant clinical problem thatdiminishes quality of life and whenuntreated, worsens (Mohr andGoodkin 1999). The prevalence ofdepression in multiple sclerosis isestimated to be between 36 percentto 50 percent in sufferers (Wang,Reimer, Metz et al. 2000). In Sullivanet. Al’s study, fifty two percent ofmultiple sclerosis patients reported adepressive episode before the onsetof the disease compared to 17% ofpatients suffering with low back pain(Sullivan, Weinshenker, Mikail et al.1995).

In all these disease profilesmentioned so far, we can see that anaffective disorder is significant in theway that patients lives are influencedand may also have an influence onthe way that treatment is effectively

delivered. Music therapy, with itsknown anxiolytic effect and itspotential for influencing mood, offersa potential for direct therapeuticintervention and as an adjuvanttherapy.

Depression

Depression is a common disorder inthe elderly (Forsell, Jorm, andWinblad 1998). The rate of treatmentof depression in the very elderly islow, exaggerated amongst dementiasufferers, and the course is chronicor relapsing in almost half of thecases. The interface betweendepression and dementia is complexand has been studied primarily inAlzheimer's disease (Aldridge 1993a)where depressive depression may bea risk factor for the expression ofAlzheimer's disease in later life(Raskind 1998). A contributory factorto this depression is the patients'perceptions of their own deficits,although these may be ill-founded(Tierney, Szalai, Snow et al. 1996).Emotional context is an importantfactor and this will be linked to theway in which the patient sees his orher current life situation and anunderstanding of what life holds inthe near-future.

Hope will be a major coping strategyfor achieving the best out of asituation. Depression will workagainst this. Conversely, hopecombats depression. Life aims canbe redefined and refocused. With theprogression of physical deteriorationthen the future becomes less definedin terms of the body and time, but inthe meaning attached to life events inrelationship with family and friends.Hope is a replacement for


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therapeutic nihilism enabling us tooffer constructive effort and soundexpectations.

Hearing impairment

If depression is a confounding factori n r e c o g n i s i n g c o g n i t i v edegenerat ion, then hear ingimpairment is another contributoryfactor. Central auditory testabnormalities may predict the onsetof clinical dementia or cognitivedecline. Hearing loss significantlylowered performance on the verbalparts of the Mini-Mental StateExamination, a standard test for thepresence of dementia (Gates, Cobb,Linn et al. 1996). Central auditorydysfunction precedes seni ledementia in a significant number ofcases and may be an early markerfor senile dementia. Gates et al.recommend that hearing tests shouldbe included in the evaluation ofpersons older than 60 years and inthose suspected of having cognitivedysfunction. If this is so then we mayhave to include this consideration indesigns of research studies of musictherapy as maybe the patientsthemselves are not actually hearingwhat is being played but respondingto social contact and gesture.

Gesture

Gesture is a part of language. Whenspontaneous communicative hand-arm gestures are evaluated in elderlypatients with probable Alzheimer'sdisease and compared to those ofhealthy controls, patients withAlzheimer's disease producedproportionately more referentiallyambiguous gestures, fewer gesturesreferring to metaphoric as opposed

to concrete contents, and fewerconceptually complex bimanualgestures. Impaired clarity whilegesturing correlated with severity oflinguistic impairment and disturbedproduc t ion o f pan tomimicmovements on a test of ideomotorlimb apraxia. (Glosser, Wiley, andBarnoski 1998). This ties into workthat we found with developmentally-children. When children developed abetter hand-eye coordination, andimproved gesturing, then they beganto score on cognitive subscale of theGriffith's test of child development.Gesturing is an important part ofmeta-communication, and it isgesturing that can be fostered by theexpressive and creative arts whenverbal language fails (Aldridge 1996).

In our study of developmentally-challenged children, where hearingdisability was ever present, it wasthe joint attention involved in makingmusic that brought about animprovement in listening thatappeared as an improvement inhearing. This listening feature ofactive music therapy is somethingthat needs to be further investigatedin its connection with gesture. Thecombination of the focusedawareness necessary for listening,and the companion visual modality ofgesture, aid coherent expressivecommunication. Indeed, it is taskorientated therapies that focusperception and action, thus enablingcompetence and are a step toregaining some integrity.

What happens

Most music therapists haveconcentrated on the pragmaticeffects of music therapy. As we will


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see, both practit ioners andresearchers alike are concerned withdemonstrating the benefits of musictherapy for dementia sufferers.However, how music therapyactually achieves its effects isrelatively un-researched althoughThaut and his colleagues have madesignificant investigations into the roleof rhythm in gait analysis (Thaut andMcIntosh 1999; Thaut, Mcintosh,Rice et al. 1996; Thaut, Miltner,Lange et al. 1999) and Pacchetti etal (Pacchetti, Mancini, Aglieri et al.2000) have made a study of activemusic therapy in Parkinson's diseaseas an integrative method for motorand emotional rehabilitation bringingabout an improvement in quality oflife. Grün (Grün, Dill-Schmölders,and Greulich 1999) and hiscolleagues too have studied theimpact of music therapy for therehabilitation of patients withParkinson’s disease.

Rhythm constitutes one of the moste s s e n t i a l s t r u c t u r a l a n dorganizational elements of music.When considering the effect of musicon human adaptation, the profoundeffect of rhythm on the motor systemstrongly suggests that the timestructure of music is the essentialelement relating music specifically tomotor behavior (Aldridge 1996). It isthe coupling of rhythm and motoraction that is central to active musicmaking and this is the feature ofseveral therapeutic interventions.Grün et al (Grün et al. 1999) foundthat patients with Parkinson’sdisease had difficulty in maintaininga stable musical tempo; a reducedability in freely forming rhythms; andthat in improvised playing there wasa monotony of speech tone and

emotional flatness reflecting theinflexibility of rhythmic form.Pacchetti hypothesizes that it isexternal rhythmic cues that stabilizethe internal formation of rhythm inthe patient (Pacchetti et al. 2000).

Structured time

My hypothesis is that music offers analternative form for structuring timethat fails in working memory. Just asdevelopmentally delayed childrenachieve a working memory thatenhances their cognitive ability, thenthe reverse process occurs indementia sufferers. The inability tomaintain, and freely form, rhythm isan expression of this deficit.

An 82 year old musician withAlzheimer's disease showed apreserved ability to play previouslylearned piano compositions frommemory while being unable toidentify the composer or titles ofeach work. He also showed apreserved ability to learn the newskill of mirror reading while beingunable to recall or recognise newinformation. Both anterograde andretrograde procedural memoryappeared to be spared inAlzheimer's disease (Crystal,Grober, and Masur 1989),

While several components ofworking memory may be affected notall aspects of the central executivemechanism are necessar i lyinfluenced (Collette, VanderLinden,Bechet et al. 1998). White andMurphy (White and Murphy 1998)suggest that tone perception remainsintact, but there is a progressivedecline in working memory forauditory nonverbal information with


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advancing Alzheimer's disease. Asimilar decline was also noted on atask assessing working memory foraud i to ry presented verba linformation. This ties in with what weknow about hearing impairment andagain encourages a test of hearingcapabilities before music therapy isused as a treatment modality.

Temporal coherence

In an earlier article, I argue thatmusic therapy is indicated becauseit offers an external sense oftemporal coherence that is failing inthe patient. Ellis (Ellis 1996) reportson the linguistic features andpatterns of coherence in thediscourse of mild and advancedAlzheimer's patients. As the diseaseprogresses, the discourse ofAlzheimer's patients becomes pre-grammatical in that it is vocabularydriven and reliant on meaning-basedfeatures of discourse rather thangrammatically based features.Temporal coherence fails. Knott,Patterson, and Hodges (Knott,Patterson, and Hodges 1997),considering the short-term memoryperformance of patients withsemantic dementia, suggesting thatimpaired semantic processingreduces the ''glue'' or ''binding'' thathelps to maintain a structuredsequence of phonemes in short-termmemory. I argue that this temporalcoherence, the metaphoric glue orbinding, is replaced by musical form.

Not loss of semantic memory

Several lines of evidence suggestthat in Alzheimer's disease there is aprogressive degradation of thehierarchical organization of semantic

memory. The structure of semanticmemory in Alzheimer's disease isprobably degraded but there is noevidence that this process isprogressive. Instead, progressiveworsening of verbal fluency inAlzheimer's disease seems toassociated with the deterioration ofmechanisms that govern initiation ofsearch for appropriate subcategories(Beatty, Testa, English et al. 1997).This pattern can be interpreted asreflecting significantly impairedprocedural routines in Alzheimer'sdisease, with relative sparing of thestructure of semantic memory(Chenery 1996).

No loss of source memory

A source memory task, usingeveryday objects in actionsperformed by either the participant orthe experimenter, was given toprobable Alzheimer's disease andelderly normal individuals (Brustromand Ober 1996). When the overallrecognition performance of the twogroups was made equivalent byincreasing the test delay intervals forthe control group, both groups ofparticipants showed similar patternsof correct and incorrect responses.For a given level of event memory,memory for the source of the eventsis comparable between elderlynormal and individuals withAlzheimer's disease.

Contextual cues

Two experiments examined whetherimpairments in recognition memoryin early stage Alzheimer's diseasewere due to deficits in encodingcontextual information. Normalelderly and patients diagnosed with


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mild stage Alzheimer's diseaselearned one of two tasks. In an initialexperiment, correct recognitionmemory required participants toremember not only what items theyhad experienced on a given trial butalso when they had experiencedthem. A second experiment requiredthat participants remembered onlywhat they had seen, not when theyhad seen it. Large recognitionmemory differences were foundbetween the Alzheimer's diseaseand the normal elderly groups in theexperiment where time tagging wascrucial for successful performance.In the second experiment where theonly requisite for successfulrecognition was remembering whatone had experienced; memory of thetemporal record was not necessaryfor successful performance. In thisinstance, recognition memory for theboth groups was identical. Memorydeficits found in early stageAlzheimer's disease may be partlydue to impaired processing ofcontextual cues that provide crucialinformation about when events occur(Rickert, Duke, Putzke et al. 1998).

Foster (1998) carried out a series ofstudies of background auditoryconditions that provided such acontext, and their influence uponautobiographical memory. While theuse of background music has noeffect on word-list recall in thenormal elderly, there is a constantbeneficial effect of music forautobiographical memory for patientswith Alzheimer's disease. This musicdid not have to be familiar to thesufferer, nor did it reduce anxiety.The effect of music is stronger incognitively impaired participants thuspromoting another reason for using

music-based interventions intreatment initiatives. Foster, likeAldridge (Aldridge 1993a), argues forthe use of music in assessmentprocedures.

As part of a programme of studiesinvestigating memory for everydaytasks, Rusted et al (1997) examinedthe potential of auditory and olfactorysensory cues to improve free recallof an action event (cooking anomelette) by individuals withdementia of the Alzheimer’s type.Both healthy elderly and volunteerswith Alzheimer's disease recalledmore of the individual actions whichcomprised the event when theylistened, prior to recall, to a tape ofsounds associated with the event.Olfactory cues which accompaniedauditory cues did not produceadditional benefits over auditorycues alone. The pattern of recallsuggests that the auditory cuesimproved recall of the whole event,and were not merely increasingrecall of the specific actionsassociated with the sound cues.Individuals with Alzheimer's diseasecontinue to encode experiencesusing a combination of senses, andthat they can subsequently use thissensory information to aid memory.These findings have practicalimplications for accessing residualmemory for a wide range oftherapeutic activities using thecreative arts that emphasise sensoryabilities.

Reminiscence

Persons with Alzheimer's diseaseexperience progressive memory andlanguage losses. When peoplesuffering with Alzheimer’s disease


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tell their own stories, then thosenarratives are less chronologicallyorganized, include repetitions, oftenomit salient events, and contain lessdetail in description than participantsin comparison group. In addition,most members of the Alzheimer'sdisease group sought assistancedur ing the narrat ive task.Nevertheless, these persons werewilling and able to complete theirnarrative assignment despitelimitations (Usita, Hyman, andHerman 1998) mirroring a situationin music therapy (Aldridge 1999).

In Mills’ study (Mills 1997) of eightdemented elderly people in apsychogeriatric day service setting,emotions associated with pastexperiences provided a strong cue torecall and formed a significantfeature of their accounts as well asproviding all informants withnarrative identity. This sense ofnarrative identity began to dissolveas their illness progressed andstories faded from memory. Theactive participation in story-tellingmay be a crucial feature ofmaintaining a social identity and isavailable to several forms oftherapeutic activity involving theexpressive arts therapies.

Silber (Silber and Hes 1995)investigated the value of song/poetrywriting with patients diagnosed withAlzheimer's disease.. A musictherapist facilitated the writingexercise by proposing the themes,choosing music, writing the patients'dictated text, suggesting the use ofmetaphors and/or analogies, anddeciding when the concludingsentence had to be written. Patientswrote songs based on descriptions

and images of seasons and thethemes of love and stages of life.Results suggest that, based on thepreservation of memory for tunesand melodies, patients were able towrite songs and poetry whenassisted by appropriate stimuli andprovided encouragement. Theactivity of songwriting not onlyprovides pleasure to the participantsbut also improves group cohesionand social interaction.

Magee has used songwritingextensively in her music therapypractice (Magee 1998; Magee 1999),as has C la re O’Callaghan(O'Callaghan 1999). Traditionallymusic offers a valid from ofemotional expression, and usingsongs allows people to find anappropriate social form for theexpression of strong emotions.Furthermore, some emotions need tobe expressed before they achieverecognition for what they are. It is inthe act of expressing that weunderstand ourselves and aresimilarly understood by others. Theexpressive arts then will play a vitalrole in stimulating emotionalexpression and achieving emotionalexpression. If this is so, then we cansee the important treatment for thosecondition where depression plays arole in the course of the disease, andparticularly where depression is seenas a confounding factor that worsensthe clinical picture.

Taking this argument further, wemay need to investigate thepossibilities that music therapy offersan appropriate from for emotionalexpression. This means that patientssuffering from intense labileemotions, or the severe agitation of


21

later stage dementias, can beoffered a non-pharmacologicaltherapy by which emotions can beregulated.

Coda

The creative arts therapies offer abroad potential for addressing theproblems encountered by patientssuffering with neuro-degenerativediseases.

Facilitating communication

Gesture is a part of language andpromotes thought. Posture,movement and prosodics provide thebases for communication. Themoved body is important forexpressing and articulating emotion.The creative arts therapies involvingmusic and dance are grounded inmovement.

Retaining identity and promotingmemory

For those struggling with to articulatethemselves, the structuring ofnarratives offers a meaningfulcontext in which expression canoccur. Remembering a story offersan overarching framework that linksevents together. When a piece offavourite music is played thenmemories are evoked.

Encouraging rhythmic movement

When bodily integrity begins to fail,then sufferers literally fall out of time.If this is, as speculated, because aninternal timekeeper fails to function,then an external source of timeappears to resynchron isemovements. What we do not know ishow long the benefits of such

rhythmic facilitation lasts. Certainlymusic and dance promote fluency inmovement and speech. What we doknow is that tasks are central to thewhole process of perception andaction, and for the ecology ofmovement then music therapyprovides a coherent sensory world oftime and space (Aldridge 1996).

Emotional expression and relief

Depression and anxiety areincreasingly being mentioned asmajor debilitating factors of neuro-degenerative diseases. Musictherapy is a known anxiolytic andalso improves mood. Furthermore,emotions can be expressed insatisfactory forms that need not bebrought into words. For the verballyinarticulate, and those challenged bylanguage when it is failing, otherexpressive forms are potentially ofgreat value for the sufferer and theircaregivers.

Quality of life

An improved communicative ability,coupled to a regained identity, wheresome movement is retained, or evenregained, and a possibility ofsatisfactory positive emotionalexpression will promote an improvedquality of life. If isolation is a majorcontributory component of emotionaldistress (Aldridge 1998; Aldridge2000b), then the creative artstherapies will offer methods by whichsufferers can experience theirrema in ing po ten t i a l s andcommunicate with others.


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