Alzheimers Research e-journal Issue 11 2012

7/30/2019 Alzheimers Research e-journal Issue 11 2012

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Social engagement to treat challenging behaviour in care homes

Which activities are most engaging for people with dementia living in care homes?Professor Clive Ballard

Breaking the stereotype: Recreational activity as therapy for disturbing behaviours indementia

Dr Linda Buettner

Psychosocial interventions for living well with dementia in care homesProfessor Esme Moniz-Cook

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December 2010Issue 11alzheimers.org.uk/research

Alzheimers Society scientific journal with lay versions of every article

Research e-journal


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EditorialProfessor Clive Ballard,Academic Editor

750,000 people in the UK have dementia,

nearly 250,000 of whom live in care homes.Older people with dementia have complexneeds, and frequently experience additionalmental health problems, disabilities, physicalillness and social problems. These issues arecompounded by widespread prescription ofpotentially harmful antipsychotic drugs.Dementia has a vast impact on health andsocial care services, and as such is a nationalpriority. There are critical issues to beaddressed, including the high level of unmet

need, the management of key mental healthproblems, the widespread overuse of sedativedrugs and the inconsistency in quality of carefor people with dementia living in care homes.

Care provision and related NHS support havenot progressed to address the complex needs ofthe increasing proportion of people withdementia in care facilities. However, the launchof the National Dementia Strategy (2009), aparallel Department of Health review of

antipsychotic drugs and the commitment todementia expressed by the current governmentare positive steps in addressing this issue. Thereis now an opportunity to move practice forwardon a national basis through better training ofhealth and care staff. This will be key inimproving the mental health and well-being ofpeople with dementia living in care homes andreducing the use of antipsychotic drugs.

Paul Burstow, the Minister for Care Services, has

publicly committed to reduce antipsychotic useby two thirds amongst people with dementia incare homes. It is imperative that this is part ofimproving the care for people with dementia,and not just a change in prescribing practice.

This edition of the journal provides reviews byProfessor Esme Moniz-Cook, Dr Linda Buettnerand myself. Prof. Moniz Cook provides anexcellent summary on non-pharmacologicalmanagement of behavioural symptoms

amongst people with dementia living in carehomes and the potential impact of person-centred care training in the context of twoongoing NIHR programme grants, one of which

(WHELD), the Society is involved in as a partner.My article reviews findings from Jiska Cohen-Mansfields group who lead the field in researchinto the potential value of different activities,and have developed a simplified approach to

promote personalised social interaction. LindaBuettner describes more innovative andpotentially exciting recreational approacheswhich have largely been undertaken in assistedliving environments but could be readilyadapted to care home settings.

This edition of the journal pulls together theavailable evidence to provide a picture ofcurrent knowledge and how this could beimplemented to improve the treatment and

care of people with dementia living in carehomes today. This will be key if a substantialreduction in the use of antipsychotics in thesesettings is to be achieved.

Each article in this e-journal is accompanied bya lay version which summarises the scientificversions without any technical language orneed for any previous scientific knowledge.

The lay versions are contributed by sciencewriter Caroline Bradley, to whom we are verygrateful for her expertise and hard work.

Quick-read summaries are also included toprovide the main points of each article.


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Alzheimers Society:Involving people inresearch

The research volunteer network is a team of180 carers, former carers and people withdementia who play an integral role in theresearch programme. Their duties include: setting our research priorities prioritising and commenting on grant

applications sitting on grant selection panels monitoring on-going projects funded by

Alzheimers Society

telling others about the results of research.We are currently recruiting volunteers for thenetwork. Anyone who is interested shouldcontact us at [email protected]

People with dementia and their carers make aunique and valuable contribution to our work.Their knowledge and passion ensures ourresearch funding is allocated to projects thataddress the real needs and concerns of peoplewith dementia and their carers.

We work with the scientificcommunity in partnership withpeople affected by dementia.

Alzheimers Society have pledged to increase our annual research spend to 5 million by 2014.In 2010 we funded over 2 million of new grants, and in 2011 we anticipate this will increaseto 2.5 million.

Scientists, clinicians and healthcare professionals can now apply for our research grants into thecause, cure, care and prevention of all types of dementia.

Project grantsApplications are invited from established researchers for support to projects over one to three years.Closing date: 25 February 2011

PhD studentshipsApplications are invited from prospective supervisors for three-year PhD projects.Closing date: 24 June 2011

Research and clinical fellowshipsApplications are invited from post-doctoral scientists who wish to develop their own research interestor medically qualified individuals who wish to study for a higher research degree with a view todeveloping a career involving clinical research. Applications are invited for a two or three-year period.Closing date: 29 October 2010

Dissemination grants.Applications are invited from health professionals or scientists who wish to disseminate a researchoutcome or an evidence-based health message beyond standard peer reviewed articles.Closing date: 30 November 2010

Full details are available at alzheimers.org.uk/researchOr contact us at [email protected]

Call for research proposals


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High quality approaches to providingmeaningful and enjoyable activities are a keypart of enabling people residing in care homesto live well with dementia (Department ofHealth, 2009). This is also an important part ofpreventing and treating behavioural psychiatricsymptoms associated with Alzheimers disease.We know from several Alzheimers Societyresearch studies using Dementia Care Mapping,ie the collection of feedback from service users,

that many care home environments are veryunstimulating for people with dementia. Forexample, in an evaluation of 17 care homesacross three regions of the country, peoplespent less than 13 per cent of the waking dayengaged in any meaningful activity (Ballard etal, 2001).

A subsequent study across 12 care homessuggested that people on average spent onlytwo minutes a day participating in meaningful

social interaction (Brooker, 2008). This clearlyhighlights that in many care home settings, thesocial needs of residents with dementia remainunmet. This sets up a negative socialenvironment in which people are bored andfrustrated, precipitating challengingbehavioural symptoms such as restlessness,irritability and aggression and frequentlyleading to the prescription of sedativeantipsychotic medication.

The benefits of participation in activites

Jiska Cohen-Mansfield and colleagues havebeen international leaders in emphasising andevaluating the benefits of simple activities andinteractions such as conversations, jointparticipation in games or physical activity, andpersonalised music. The group have conducteda couple of excellent randomised controlledtrials demonstrating that these interventionsare significantly more effective than usual care

in improving overall symptoms of agitation(Cohen-Mansfield et al, 2007), and the specificdistressing and troublesome symptom ofshouting (Cohen-Mansfield et al, 1997).

Relatively short periods of shared activity andsocial interaction achieved a 25 per centimprovement in behavioural symptoms. Theinterventions were based upon a standardisedframework, but personalised to the currentinterests, previous occupation and interests,cognitive and functional abilities, andsymptoms of the individual.

Although these approaches have been very

successful, they do rely upon a certain level ofunderstanding of the principles of person-centred care by the care staff and also relyupon a certain investment of time in planningand delivering the intervention. Theseapproaches are therefore likely to be mostsuccessful in care settings where person-centredcare training is already in place. Whilst this is animportant goal, it is also important to developapproaches that require less skill to implementand can be undertaken with less time

commitment from care staff.

Brief Psychosocial Therapy (BPST)

One approach to try and tackle this problem isto simplify the intervention. Brief PsychosocialTherapy (BPST), is a more structured methodfor implementing social interaction based uponthe same principles. A therapist works with amember of care staff in a residential or nursinghome to help them plan and implement a ten

minute a day social interaction programme.

The intervention uses a very simple set ofprinciples, based upon the Cohen-Mansfieldintervention. The therapist provides structuredhelp to plan the details of the intervention,provides further telephone contact to helprefine the intervention, and offers positivefeedback to reinforce the intervention. Thetherapy provides a regular social interaction tothe person with dementia, but also teaches the

care assistant skills to enable more positivecommunication. This provides a socialenvironment to facilitate the development of amore person-centred relationship between the

Which activities are most engaging for peoplewith dementia living in care homes?Clive Ballard, Professor of Old Age PsychiatryWolfson Centre for Age-Related Diseases, King's College London, Guy's Campus, London SE1 1ULCorrespondence: [email protected]


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care assistant and the person receiving thetherapy.

BPST was developed to use as a four-weekpsychological therapy in the CALM-AD trial,jointly supported by the Medical ResearchCouncil and Alzheimers Society. This trial was

predominantly designed to test whetherdonepezil (Aricept) was more beneficial thanplacebo in the treatment of clinically significantagitation in people with dementia (Howard etal, 2007). However, as a first stage, participantsreceived a four-week BPST intervention. Theintervention was successfully delivered to morethan 90 per cent of the 200 people eligible toreceive the therapy, and those individualsexperienced a significant improvement (6points or higher) on the Cohen-Mansfield

Agitation Inventory (Ballard et al, 2009). Asthere was no placebo intervention for this lead-in phase of the trial, it is difficult to knowwhether this was more effective than doingnothing or some other intervention. What itdoes show us however, is that if we follow therecommendations of most good practiceguidelines and implement a simplepsychological intervention for four weeks, it issafe, and overall people will experience asignificant benefit avoiding the need for drug

therapy. The study also demonstrated that itwas feasible to successfully deliver this simpleand practical psychological intervention in awide range of typical UK care home settings.

Engagement

Cohen-Mansfield and colleagues have taken adifferent and innovative approach. Theyassessed the degree to which people withdementia are engaged with different types of

activity and interaction (the ObservationalMeasure of Engagement, Cohen-Mansfield etal, 2010). This was measured by looking at acombination of the positive impact that theactivity had on the persons mood, and thelength of time which the person would continueto undertake the activity. Their goal was two-fold, firstly to provide an evidence base toenable the selection of the activities that areperceived most positively by people withdementia, and secondly to investigate whether

activities that do not involve such a high degreeof one-to-one input from carers can also beengaging.

One hundred and ninety-three residents withdementia living in seven Maryland nursinghomes participated in the study. Engagementwas assessed using the ObservationalMeasurement of Engagement with speciallydesigned software installed on a handheldcomputer. Ratings include: attention to the

stimulus during an engagement trial (four-pointscale: not attentive to very attentive); attitudeto the stimulus during an engagement trial(seven-point scale: very negative to verypositive) and duration (the amount of time thatthe participant was engaged with the stimulus).Stimulus presentation ended after 15 minutesor whenever the study participant was nolonger engaged with the stimulus.

Each participant was presented with 25

predetermined activities during a three-weekperiod (approximately four activities per day).Activities were categorised as:

live social stimuli, which included a real dog,real baby, and one-on-one socialising with aresearch assistant;

simulated social stimuli, which included alifelike (real) baby doll, childish-looking doll,plush animal, robotic animal, and a video;

a reading stimulus, which included a large-print magazine;

manipulative stimuli, which included asqueeze ball, tetherball, expanding sphere,activity pillow, building blocks, fabric book,wallet (males)/purse (females), and puzzle;

a music stimulus, which included listening tomusic;

artistic task-related stimuli, which includedflower arrangement and coloring withmarkers;

work-related stimuli, which included stampingenvelopes, folding towels, and an envelopesorting task;

and two different self-identity stimuli thatwere matched to each participant's pastidentity with respect to family, occupation,hobbies, or interests.

The results were interesting. The most engagingactivities were those involving socialinteraction, either one-to-one conversation, avisitor with a dog, or a visitor with a real baby.

Simulated social interaction, using videos or alifelike baby doll, or physical activities whichwere not facilitated by a carer were lesssuccessful. The other interesting finding


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pertained to work-like activities, such as foldingtowels, stamping envelopes and sortingjewellery. Although less positive than socialinteraction, these activities did confer a modestpositive effect, but more importantly theyengaged a substantial proportion of people forthe full 15 minutes of the intervention. This

probably reflects peoples attitudes to workmore generally, and potentially offerssignificant advantages compared to anindividual feeling unoccupied, isolated,distressed, bored or exhibiting symptoms ofagitation. It also has the advantage ofrequiring substantially less carer time toimplement the activity, although it doespotentially raise some ethical issues relating topseudo-work tasks.

Summary

Meeting the social needs of people withdementia is a high priority to help people livewell with dementia and to improve and reducethe emergence of behavioural symptoms suchas agitation, restlessness and aggression.Important recent work from Jiska Cohen-Mansfield and colleagues clearly demonstratesthat social interaction, either involvingconversation or visitors with a baby or pet, are

the most stimulating and engaging activitiesconferring a positive mood and engagingpeople for significant periods of time. This helpsconsiderably when we are planninginterventions to maximize the benefits ofactivities for people with dementia in carehome settings.

Approaches such as BPST have been developedand successfully implemented, to enable socialinteraction to be delivered as part of routine

care in a simple, structured and pragmatic way.Jiska Cohen-Mansfields work also suggeststhat work-like activities may provide anotheropportunity to engage people with dementiaand reduce feelings of isolation and distress,which should perhaps be considered as anaddition to, rather than as an alternative to,social interaction.

References

Ballard C, et al (2001). Quality of care in

private sector and NHS facilities for peoplewith dementia: cross sectional survey, BMJ323:426-7.

Ballard C, Brown R, Fossey J (2009). BriefPsycho-Social Therapy (BPST) for thetreatment of agitation in Alzheimers disease(The CALM-AD Trial), American Journal ofGeriatric Psychiatry 17(9):726-33.

Brooker D (2008). Development andevaluation of a multi-level activity-basedmodel of care, Alzheimers Society E-journalIssue 5.

Cohen-Mansfield J et al (2007).Nonpharmacological treatment of agitation:a controlled trial of systematic individualizedintervention, J Gerontol A Biol Sci Med Sci62:908-916.

Cohen-Mansfield J, Werner P (1997).Management of verbally disruptivebehaviors in nursing home residents, JGerontology Series A-Biological Sciences &Medical Sci 52:369-77.

Cohen-Mansfield J et al (2010). Can personswith dementia be engaged with stimuli?,American Journal of Geriatric Psychiatry 18(4):351-62.

Department of Health (2009). Living wellwith dementia: A National DementiaStrategy.

Howard RJ et al (2007). Donepezil for thetreatment of agitation in Alzheimersdisease, N Engl J Med 357:1382-1392.

Quick-read summary

People with dementia need meaningful andenjoyable activities to live well.

Meeting people with dementias social needscan also help to reduce agitation, restlessnessand aggression.

New research shows that social interactionsin care homes, are the most stimulating andengaging activities.

Brief Psychosocial Therapy (BPST) can enablesocial interaction to be delivered as part ofroutine care in a simple and structured way.

Work-like activities can engage people withdementia, but only alongside socialinteraction.


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Lay summary

Which activities are most engaging for people withdementia living in care homes?

People with dementia need meaningful andenjoyable activities to live well. This can also helpto reduce behavioural symptoms such as agitation,restlessness and aggression. Research has shownthat many care homes are not stimulating placesfor people with dementia.

Person-centred success

Professor Cohen-Mansfield and colleagues haveshown that simple activities such as conversation,personalised music or group participation in gamesare significantly more effective than care as usualin improving the symptoms of agitation.

Their approach requires care staff to have someunderstanding of the principles of person-centredcare, taking time to plan and deliver activities forthe residents. This is the ideal, but it is important todevelop approaches that require less skill and timeto put in place and make a difference.

Brief Psychosocial Therapy (BPST)

Results published in 2009 showed that a technique

called Brief Psychosocial Therapy (BPST) couldhave positive effects on levels of agitation forpeople with dementia (Ballard et al, 2009). Aregular care worker is supported to make a simple,practical change for a resident with dementia: aone-to-one social interaction, personalised music orremoving possible environmental triggers ofagitation.

In the trial, the care worker received support andguidance from a specialist for a total of two hours

over four weeks. BPST was assessed as part of alarger project (the CALM-AD trial). Most careassistants used social interaction and achieved asignificant reduction in levels of agitation.

Changing environmental triggers achieved similarresults, but was not chosen by enough careassistants to be properly assessed. Personalisedmusic was not found to have a significant effect.

The BPST interventions were not tested against a

placebo, but the results show potential fordeveloping simple and practical interventions in awide range of typical UK care home settings.

Getting engaged

Professor Cohen-Mansfield and colleagues havebeen busy developing a new concept to improveunderstanding of the best way to meet the needsof people with dementia.

They carried out research in the US to assess howengaged people with dementia were withdifferent types of activity and interaction (Cohen-Mansfield et al, 2010). This measure was made upof the positive impact an activity had on a personsmood and how long the person with dementiawould continue with the activity.

Stimulating stuff

Almost 200 nursing home residents with dementiatook part in the research to assess different typesof stimulating activities. Overall, 25 differentactivities were divided into eight categories:

live social stimuli (a real dog, a real baby andone-to-one chatting)

simulated social stimuli (dolls, soft toys andvideo)

reading stimulus (large print magazine)

manipulative stimulus (a squeeze ball, activitypillow, building blocks, fabric book etc)

listening to music

artistic tasks (flower-arranging, colouring)

work-like stimulus (stamping envelopes, sortingtowels etc)

self-identified stimulus (related to an individualspast hobbies or interests).

The results showed that the live socialstimuli (those involving social interaction) werethe most engaging. Simulated social interactions orphysical activities were less successful.

Interestingly, work-like activities, although lessengaging than social interactions, generallymaintained peoples attention. This type of activitydoes not need a lot of carers time and could helpprevent people with dementia from becomingagitated due to feelings of isolation or boredom.

However, the idea of offering people withdementia pseudo-work tasks could raise someethical issues.


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The management of disturbing behaviour inolder adults with dementia is a common,difficult problem that represents one of themajor challenges for care providers worldwide.Although the behavioural signs and symptomsof dementia may be similar from person toperson, there are a variety of causes and waysthese behaviours can be treated.

What is agitation?

Agitation has been defined by Dr. Cohen-Mansfield (1989) as inappropriate verbal,vocal, or motor activity that is sociallyinappropriate and impacts on quality of life. Akey word in this definition is activity. It links thedefinitions of agitation and recreation in anoperative way. During a chosen recreationalactivity a deliberate attempt is made atpleasure producing experiences. Agitation,

conversely, is often the result of being isolatedor in a situation that is not desirable. Thus, theappeal of appropriate recreational activity toreduce agitation in individuals with dementiastems from a basic human need to remainactive and to derive satisfaction from usinginnate abilities in a pleasurable way.

Why worry about apathy?

Another behaviour seen in dementia that is

especially troubling to family care providers isapathy. Apathy is defined as the loss ofmotivation not attributable to cognitiveimpairment, emotional distress, or a reducedlevel of consciousness (Marin et al, 1991).People with dementia with apathy require moremanagement and support, given their relianceon others to schedule their activities andinitiate tasks. In studies, apathy wasconsistently associated with more severefunctional impairments, more severe cognitive

deficits, higher levels of burden and distress incaregivers, along with increased resourceutilisation. However, people with apathy can beremotivated with meaningful recreationalopportunities (Buettner et al, 2006).

Can people with dementia exhibit bothapathy and agitation?

Our own research examined apathy andagitation in older adults with dementia(Buettner, and Fitzsimmons, 2006). In ananalysis of data from two recreational therapyintervention projects, we explored behavioursoccurring in 141 older adults living in the

community, assisted living, and nursing homesettings. The occurrence of apathetic andagitated behaviours was monitored throughoutthe day for a five day period. The resultssuggest that in all stages and settings, acombination of apathy and agitation is themost common phenomenon (around 60 percent), and that the predominant behaviouractually fluctuates during the day. Our goal forboth types of problem behaviours was tointervene with an appropriate pleasurable

activity to engage the individual. We found theuse of individualised recreational interventionsproduced a highly sensitive approach to theoverall needs of individuals with dementia.

Individualising recreation

To provide individualised recreation weevaluate level of functioning using the GlobalDeterioration Scale (Reisberg et al, 1982) andscreen for recreational interests with the

Farrington Leisure Interest Survey (Buettnerand Martin, 1995). In our research, mostindividuals with dementia were successfullyable to provide information about things theylike to do. Based on this information and thetime of day the individual is either bored orrestless, we offered an engaging recreationalactivity. Recreational activities were adaptedfor the functional level of the participant asneeded. If an individual loved gardening in thepast but could not safely garden at ground

level, we might provide flower pots or a raisedbed garden instead. The idea of maintainingthe essence of the recreational activity is veryimportant.

Breaking the stereotype: Recreational activity astherapy for disturbing behaviours in dementia

Linda L. Buettner, Professor of Recreational Therapy and GerontologyUniversity of North Carolina at Greensboro, Greensboro, North Carolina, 27412, USA

Correspondence: [email protected]


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Types of recreation

There are two major types of recreationalactivities in nursing homes. The first type istherapeutic activities, which have the intent ofattaining behavioural or functional goals withthe individual. These are usually led by a

therapist or an activity professional. The secondtype are home-like or everyday activities. Theseare based on the individuals daily routines andprovide normalised structure, entertainmentand diversion. These can be self-guided orguided by volunteers, families or staff. Bothtypes of recreational activities are needed tomaintain a high quality of life for individualswith memory loss (Voelkl and Parks, 2007).

Suggested therapeutic activities to try

We found that the following interventions wereextremely well-received and had a significantpositive impact on behaviour.

Simple pleasures

One easy to implement activity programme fornursing home residents and their families iscalled simple pleasures (Buettner, 1999). Theoriginal research project designed and testedinexpensive handmade recreational items. Theitems can be made by volunteers and offered toindividuals during family visits, or as arecreational diversion at any time needed.Some of the items are designed for comforting,others for alerting, and all are designed toengage individuals with significant cognitive

impairments. Each item has a straightforwardhow to make it and how to use it handoutavailable online (www.health.state.ny.us/diseases/conditions/dementia/edge/interventions/simple/index.htm).

Animal assisted therapyAnimal assisted therapy (AAT) has a powerfulcalming and alerting effect on individuals thatlove animals. Having pets and caring aboutanimals in the past should be part of therecreational interest assessment. AAT has beenintroduced into long-term care and adult day

care settings to reduce agitation, apathy, andproblem behaviours with highly significantoutcomes (Richeson, 2003 and Martindale,2008). Purposeful activities are graduallyintroduced during the therapy sessions,including playing with a dog, feeding, brushing,talking to the dog and handler, and reminiscingabout past pets. Research shows the effectsinclude decreased agitation compared tocontrols, increased positive effect, anddecreased passive behaviours. The Delta

Societys Pet Partners is an example of an AATprogramme (www.deltasociety.org).

RelaxationRelaxation programmes have the potential toreduce symptoms of anxiety, and agitation inolder adults with dementia. In one study, wecompared the immediate physiological effects(heart rate, peripheral skin temperature, andblood volume pressure) of three differentrelaxation programs on individuals with

moderate dementia (Buettner andFitzsimmons, 2007). The participants wererandomly assigned to guided imagery, chair taichi, or progressive muscle relaxationprogrammes at a restless time of day. For themajority of participants the relaxation sessionssignificantly reduced heart rate and anxietylevels within five minutes of the sessioninitiation.

Wheelchair biking

Several studies have reported significantbenefits of wheelchair biking on people withdementia (Fitzsimmons, 2000; Buettner andFitzsimmons, 2002; Fitzsimmons and Buettner,2002). This therapeutic activity offers a thrillingopportunity for individuals with dementia, bycombining a small group psychosocialcomponent with individual rides on a Duet Bike.(http://www.uncg.edu/rth/wheelchairbiking.html). Although theinvestment to obtain this specialised bike is a

consideration, many nursing homes have hadsuccessful fundraising events to purchase bikes.Small group discussion focuses on pastexperiences with biking and reporting back

Wheelchair biking(image courtesy of Professor Linda L. Buettner)


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about the new ride experiences. The ride mightonly last minutes, but the effects on depressionand behaviour were highly significant. Thisspecialised piece of therapy equipment enablesthe frail older person to experience the ride,doing a lifelong recreational activity out-of-doors, and talking to others about the exciting

experience. The impact of daily rides and groupexperiences is immediate and we found apowerful and lasting impact after two weeks ofdaily treatment.

Summary

It appears the benefits of structuredtherapeutic recreation and diversional activitieson behaviour and mood are many. Eachindividual with memory loss has a unique set of

needs, interests, and skills that must beconsidered when designing an active lifestylefree of sedating medications and restraints.This type of therapeutic programming is hardwork and requires help from families, staff, andadministrators. It also requires carefulinterdisciplinary planning and solidcommunication amongst care providers. Therewards, however, are well worth the effort.

References

Buettner, L. (1999) Simple Pleasures: A multi-level sensory motor intervention for the

nursing home, Am J Alzheimers Dis OtherDemen 14(1):41-52.

Buettner, L. and Fitzsimmons, S. (2002) AD-Venture: wheelchair biking for treatment ofdepression, American Journal of Alzheimersdisease,17(2):121-127

Buettner, L., Fitzsimmons, S. and Atav, S.(2006) Predicting outcomes: therapeuticrecreation for behaviours in dementia,

Therapeutic Recreation Journal. Arlington:First Quarter 40(1):33

Buettner, L. and Fitzsimmons, S. (2006)Agitation and apathy in dementia: a newparadigm for treatment, Journal ofGerontological Nursing. Thorofare 32(7):15

Buettner, L. and Fitzsimmons, S. (2007)Relaxation and dementia: An ideal programfor reducing anxiety, Activities DirectorsQuarterly, Spring:41-45.

Buettner L, Martin S (1995) Therapeutic

Recreation in the Nursing Home. StateCollege, PA: Venture Publishing Inc..

Cohen-Mansfield, J., Marx, M. and Rosenthal,A. (1989) A Description of Agitation in aNursing Home, J Gerontol 44(3):M77-M84.

Fitzsimmons, S. (2000) Easy Rider Wheelchairbiking: A Nursing-Recreation Therapy clinicaltrial for the treatment of depression. Mastersthesis. Decker School of Nursing, BinghamtonUniversity, Binghamton, NY.

Fitzsimmons, S. and Buettner, L. (2002)Evidence-Based Protocol: Wheelchair Bikingfor Depression. University of Iowa Geron.Nursing Interventions Research CenterResearch Dissemination Core. Grant #P30NR03979, NINR.

Marin RS, Biedrzycki RC, Firinciogullari S(1991) Reliability and validity of the ApathyEvaluation Scale. Psychiatry Res 38:143-62.

Martindale, B (2008) Effect of animalassisted therapy on engagement of rural

nursing home residents, Fall:45-53. Reisberg B, Ferris SH, de Leon MJ, and Crook

T, (1982), Global Deterioration Scale,American Journal of Psychiatry 139:1136-1139

Richeson, N. (2003) Effects of animal-assistedtherapy on agitated behaviours and socialinteractions of older adults with dementia,Am J Alzheimers Dis Other Demen 18(6):353-358.

Voelkl, J. and Parks, A. (2007), The Core and

Balance Model of Activities: A new approachto fostering elders meaningful activityengagement, Activities Directors Quarterly,Spring:27-35.

Quick-read summary

Structured recreational activities can have apositive effect on the behaviour and mood ofpeople with dementia.

Needs, interests, and skills need to beconsidered when designing recreationactivities.

This requires commitment from families andcare home staff, interdisciplinary planning,and communication amongst care providers.

The rewards are well worth the effort formany people.


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Choosing the right activities to help changepeoples behaviour

Agitated behaviour can cause difficulties whenpeople are being cared for in a group. As well asdisturbing others, agitation can also be distressingto the person with dementia and the people whocare for them. Agitation can be triggered byfeelings of isolation or situations that a persondoes not want to be in.

Recreational activities can provide people with achance to feel pleasure, and can thus help toreduce agitation. They can also be helpful for

people with dementia who become apathetic andwait for others to do things for them, despite stillhaving the abilities to do things for themselves.

Agitation and apathy are common

A research project (Buettner and Fitzsimmons,2006) observed and recorded the types ofbehaviour of people with dementia. Theresearchers found that a combination of apathyand agitation were the most commonly recorded

behaviours. The predominant behaviourfluctuated during the course of the day.

Monitoring behaviour patterns is important sothat activities can be offered at the times at whichthe person tends to become bored or restless.

Making it personal

It is important to ensure that any activity offeredto people with dementia is appropriate for them.

Professor Linda L. Buettner recommends assessingpeoples levels of cognitive decline using a formalscale such as the Global Deterioration Scale(Reisberg et al, 1982). She has also developed aLeisure Interest Survey (Buettner and Martin,1995) to identify what leisure activities are ofinterest to people with dementia.

When recreational activities are offered to peoplewith dementia they should be adapted to theirabilities. For example, activities such as gardening

can be made more accessible by using raised bedsor window boxes.

There are generally two types of recreationalactivity in nursing homes and both are needed tomaintain a high quality of life for people withdementia:

therapeutic usually led by a therapist/specialist and aimed at helping to improvepeoples behaviour or abilities

everyday or home-like activities part of thedaily routine, they are designed to providestructure, entertainment or diversion.

Professor Buettner has found the followingtherapeutic activities to be both popular and to

have a positive impact on peoples behaviour:

Simple pleasuresThis involves inexpensive handmade recreationalitems, designed for use by people with dementia.Some of the items can provide comfort; some arediverting or stimulating. Examples include a simpleball-rolling game and an apron with differentpockets containing 'treasures' of varying shapesand sizes.

Animal-assisted therapyAn opportunity to stroke or handle a pet can have apowerful calming or stimulating effect onindividuals who like animals. Purposeful activitiessuch as providing care for the pet can be graduallyintroduced, as can reminiscing about past pets.Research shows the effects include decreasedagitation and reduced apathy.

RelaxationRelaxation sessions can include activities such as

chair-based tai chi, guiding someone to imaginerelaxing things, or progressively tensing andrelaxing muscles. Research has shown theseactivities can be effective in calming and relaxingparticipants. For most participants, the relaxationsessions reduced heart rate and anxiety levelswithin five minutes of the start of the session.

Wheelchair bikingThe Duet Bike combines a wheelchair and a bikeso that people with dementia can experience thefun of a bicycle ride. Research has shown thatwheelchair biking can provide significant andlasting benefits, helping to reduce depression andbehavioural problems.

Lay summary

Recreational activity as therapy for people with dementiawho are agitated or apathetic


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Psychosocial interventions for living well withdementia in care homesEsme Moniz-Cook, Hon. Professor of Clinical Psychology and AgingThe Institute of Rehabilitation, 215 Anlaby Road, Kingston upon Hull, HU3 2PGCorrespondence: [email protected]

In the UK about 250,000 people with dementialive in care homes. Many have complex needswhich, if unmet, will continue to hamper thevision of the National Dementia Strategy (NDS)and its goal to enable people to live well withdementia (Department of Health, 2009).

Behavioural and psychological symptoms indementia (BPSD) and challenging behaviour

Neuropsychiatric symptoms (also known asBPSD) are common, with at least two thirds ofpeople experiencing these symptoms at somepoint during the progression of dementia. BPSDincludes anxiety, depressive mood,hallucinations, delusions, aggression,wandering, agitation, restlessness, and apathy(Finkel et al, 1997).

Pharmacological management has focused onantipsychotics, even though from the total of

180,000 people with dementia who are treated,only 20 per cent will derive some benefit(Bannerjee, 2009) and there is emergingevidence of detrimental outcomes (Ballard et al,2009a). One reason for the widespread use ofantipsychotic drugs is the relationship betweenBPSD and distress or burden (Black andAlmeida, 2004), yet only about a third ofpeople with dementia are distressed bysymptoms (Ballard et al, 1996). There is widevariability in distress amongst care staff

exposed to the same behaviour by the sameperson and poor agreement amongst seniorstaff about which of their residents present withchallenging behaviour (Bird and Moniz-Cook,2008). Emotional responses to behaviour arefrequently determined not by the behaviour,but by staff or organisational factors in carehomes (Moniz-Cook et al, 2000).

Psychological paradigms frame BPSD within aninterpersonal context involving the experiences

of both people with dementia and caregivers inthe environment. The reference termchallenging behaviour is defined as amanifestation of distress or suffering for the

person with dementia, or of distress in thecarer (Bird and Moniz-Cook, 2008). Thisconceptualisation allows for the growing bodyof research suggesting that care staff factors,such as their own anxiety, can influence reportsof problematic behaviour in people living incare homes (Moniz-Cook et al, 2000). Helpingcaregivers understand why such symptomsarise can alter their perceptions and associatedchallenges in supporting the person with

dementia (Moniz-Cook et al, 2008a).

The paradigm shift from a syndrome of BPSDtowards understanding behaviour within theinterpersonal context is demonstrated in theNational Insititute of Clinical Excellence (NICE) Social Care Institute of Excellence (SCIE)guideline where behaviour problems aredescribed as behaviours that challenge (NICE-SCIE, 2006).

Outcome measurement in care homes

Consensus on what instruments should be usedto measure outcome in clinical studies has onlyrecently received attention. TheNeuropsychiatric Inventory (NPI) and theCohen Mansfield Agitation Inventory (CMAI)are the most widely used in care home studies(Moniz-Cook et al, 2008b; Cohen-Mansfield etal, 1989).

The NPI (Cummings et al, 1994) was developedto assess psychopathology in dementia (ieBPSD). It uses caregiver reports of thefrequency and severity of 12 symptoms. It alsoevaluates caregiver distress for each item andprovides a total symptom score, a totalcaregiver distress score and scores for the 12symptom domains. However, simply adding upsymptoms of differing aetiologies is notclinically meaningful. Flexibility in data analysisusing this instrument has therefore been

recommended, including drawing on factoranalytic studies to define four sub-syndromes:hyperactivity, psychosis, affective problems andapathy (Robert et al, 2007). The 29 item CMAI


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(Cohen-Mansfield et al, 1989) uses caregiverreports to rate the frequency of items butseverity and caregiver coping is not considered.It has four sub-types: verbally non-aggressive,verbally aggressive, physically non-aggressiveand physically aggressive.

Non-pharmacological researchers conclude thatthe behaviour, and why it is seen aschallenging, are a product of multiple causality,idiosyncratic to the individual case (Bird andMoniz-Cook, 2008). This is an importantconsideration in the design of psychosocialintervention research and has implications forthe choice of rating scale used to measureoutcome.

The choice of primary outcome measure is not

straightforward. The NPI and the CMAI do notreflect the paradigm shift from BPSD tochallenging behaviour, since neither providesvalid ratings of management or coping abilityin caregivers. The 25 item ChallengingBehaviour Scale (CBS) (Moniz-Cook et al, 2001)was developed from staff reports of residentsbehaviour challenges. It uses staff report torate frequency and perceived managementdifficulty of the residents behaviour. Howeverit has not been widely used in intervention

research (Moniz-Cook et al 2008b).

NIHR programme for applied research twocurrent studies

Care homes are characterised by poorly paidstaff, high staff turnover, and little training andsupport for what to do when a person withdementia becomes distressed. This leads to avicious circle of poor access to sustainablesupport and training, and widespread use of

antipsychotic drugs. The NIHR is supportingtwo major research projects in this area.1 Challenge-Rescare (2007-2012) Aninteractive web-based decision supportintervention for the management ofchallenging behaviour in dementia

Staff can be trained to develop plans of carethat help them cope with and resolve distress inresidents, but the effects are not maintained

(Moniz-Cook et al, 1998). At one year follow-up,over half of staff had left the homes, andhigher levels of challenging behaviourscompared with pre-training were reported.

This pragmatic cluster-randomised trialevaluates the effectiveness, and cost, of aninteractive web-based training and decisionsupport system. This was developed byprofessionals in clinical psychology, psychiatry,general practice and pharmacy and consists offour parts. The first three involve skills and

competency training in functional analysis (anobservational method to determine themeaning of behaviour), detecting causes ofchallenging behaviours and systematic person-centred care planning to resolve behavioursthat challenge. A care planning tool thenallows the practitioner to input relevantinformation about the person, the behaviourand the care environment to develop apersonalised health and psychosocial care plan.This allows care staff 24-hour access to training

and care planning support. The primaryoutcome is measured using the CBS (Moniz-Cook et al, 2001) and the NPI (Cummings et al,1994) is used for comparison with the literature(Moniz-Cook et al 2008b).

2 WHELD (2010-2015) An optimised person-centred intervention to improve mental healthand reduce antipsychotics amongst people withdementia in care homes.

A study of antipsychotic withdrawal showed anincreased risk of mortality in patients whocontinued treatment, thus highlighting theneed for less harmful alternatives for the long-term treatment of BPSD (Ballard et al, 2009c).A study of enhanced psychosocial caresuccessfully reduced antipsychotic use in carehomes (Fossey et al, 2006), but did not resolveall of the challenges experienced by staff.Encouraging results from an open design studyof brief psychosocial therapy for agitation,

demonstrated the need for a randomisedcontrolled trial (Ballard et al, 2009b).

The present study will first develop anoptimised therapy by testing the relative valueof components of person-centred care, socialinteraction, antipsychotic review and exercise.The effectiveness and cost consequence of anoptimised therapy will then be evaluated in alarge-scale nationwide cluster randomisedstudy. Primary outcomes are antipsychotic use

and agitation using the CMAI. Secondaryoutcomes will include quality of life ratingscales, and observations of social interaction.


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References Ballard C et al (1996). A prospective study of

psychotic symptoms in dementia sufferers:psychosis in dementia, InternationalPsychogeriatrics 9:57-64.

Ballard C and Howard R (2006). Neurolepticdrugs in dementia: benefits and harm, NatRev Neurosci 7:492-500.

Ballard C et al (2008). A randomised,blinded, placebo-controlled trial in dementiapatients continuing or stopping neuroleptics

(the DART-AD trial), PLoS Med 5:e76. Ballard C et al (2009a). Reflections on

quality of life for people with dementia livingin residential and nursing home care: theimpact of performance on activities of dailyliving, behavioral and psychologicalsymptoms, language skills, and psychotropicdrugs, International Psychogeriatrics21:1026-1030.

Ballard C et al (2009b). Brief PsychosocialTherapy for Agitation in Alzheimer Disease The CALM-AD Trial, American JournalGeriatric Psychiatry 17:726 -732.

Ballard C et al (2009c). The dementiaantipsychotic withdrawal trial (DART-AD):long-term follow up of a randomised placebo-controlled trial, The Lancet Neurology 8(2):151 157.

Banerjee S (2009). The use of antipsychoticmedication for people with dementia: Timefor action, Department of Health.

Bird M and Moniz-Cook E (2008).Challenging behaviour in dementia; apsychosocial approach to intervention, In BWoods and L Clare (Eds) Handbook of the

Clinical Psychology of Ageing Wiley 33:571-594.

Black W and Almeida OP (2004). A systematicreview of the association between thebehavioral and psychological symptoms ofdementia and burden of care, InternationalPsychogeriatrics 16(3):295315.

Cohen-Mansfield J et al (1989). A descriptionof agitation in a nursing home, J GerontolMed Sci 4:77-84.

Cummings JL et al (1994). TheNeuropsychiatric Inventory: comprehensiveassessment of psychopathology in dementia,Neurology 44(12):2308-14.

Department of Health (2009). Living well withdementia, A National Dementia Strategy.

Finkel et al (1997). Behavioral andpsychological signs and symptoms of

dementia: A consensus statement on currentknowledge and implications for research andtreatment, International Journal of GeriatricPsychiatry 12:1060-1061.

Fossey J et al 2006). Effect of enhancedpsychosocial care on antipsychotic use innursing home residents with severe dementia:cluster randomised trial, BMJ 332:756-61.

Moniz-Cook E et al (1998). Can staff trainingreduce behavioural problems in residential carefor the elderly mentally Ill?, InternationalJournal of Geriatric Psychiatry 13:149-158.

Moniz-Cook E et al (2000). Staff factorsassociated with perception of behaviour aschallenging in residential and nursing homes,Aging and Mental Health 4:48-55.

Moniz-Cook E et al (2001). The ChallengingBehaviour Scales (CBS): Development of a newScale for staff caring for older people inresidential and nursing Homes, British Journalof Clinical Psychology 40:309-322.

Moniz-Cook E et al (2008a). Can trainingCommunity Mental Health Nurses to supportfamily carers reduce behavioural problems indementia? An exploratory pragmaticrandomised controlled trial, InternationalJournal of Geriatric Psychiatry 23(2):185-191.

Moniz-Cook E et al (2008b). A Europeanconsensus on outcome measures forpsychosocial intervention research in dementiacare, Aging and Mental Health 12(1):14-29.

National Institute for Health and Clinical

Excellence and Social Care Institute forExcellence (2006). Dementia: Supportingpeople with dementia and their carers in healthand social care. National Collaborating Centrefor Mental Health.

Quick-read summary

Most people with dementia experiencebehavioural and psychological symptomssuch as restlessness, anxiety and aggression.

Challenging behaviours are generally not wellunderstood or well managed by care staff.

Staff training and support can reducebehavioural and psychological symptoms incare home residents.

Two large practically focused NHS researchstudies that aim to tackle this problem areunderway.


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Understanding and addressing behavioural andpsychological symptoms

Many people with dementia living in care homesin the UK experience behavioural andpsychological symptoms such as anxiety, delusionsand shouting. There is a real need to improve theunderstanding and treatment so that people canlive well with dementia, the goal of EnglandsNational Dementia Strategy.

Whats the problem?

Behavioural and psychological symptoms in

dementia (BPSD) is a term used to describe a widerange of symptoms that affect most people withdementia at some point. The use of drugtreatments such as antipsychotic medication forthese symptoms is controversial as they can haveharmful side-effects and have not been proved tobe effective. Clinical guidelines recommend thatnon-drug options are always explored first, butprescribing levels remain high.

One reason that drugs are so heavily prescribed is

that BPSD are frequently perceived as distressingand burdensome to both the person withdementia and their carers. However, researchshows that only about a third of people withdementia are distressed by the symptoms and theeffect on carers remains unclear. How staffrespond to patient behaviour has been found tovary due to factors such as how the staff areorganised in the care home rather than thebehaviour itself.

Looking at it another way

Helping caregivers to understand why behaviouraland psychological symptoms can develop forpeople with dementia can change how they feelabout how challenging that persons behaviouractually is.

Measuring up

The most commonly used tools for measuring

outcomes in care home studies do not provide anindication of the caregivers ability to manage orcope.

There is a need to adapt established measures ordevelop new ways of measuring BPSD. TheChallenging Behaviour Scale (Moniz-Cook et al,2001) uses staff report to rate frequency andperceived difficulty of the residents behaviour,however it has not been widely used.

Vicious circles

Many care homes have poorly-paid staff whoreceive little training or support to help them whena person with dementia develops BPSD. Researchshows that training can help care home staff tocope with and reduce levels of distress for residents.

However, high staff turnover undermines suchimprovements.

Current research

The NHS National Institute of Health Research issupporting two major research projects in this area:

1 Challenge Rescare (2007 2012)This research will test whether having easy andopen access to a training and decision support

system can help staff in care homes to reduce levelsof challenging behaviour.

The study involves 63 care homes and over 600residents with challenging behaviour. Theweb-based training and support system has beendesigned to help care staff to detect the causes ofchallenging behaviour and then develop person-centred care plans to alleviate distress and resolvethe behaviour.

2 WHELD Well-being and health for peoplewith dementia (2010 2015)This study aims to develop simple, practical andeffective interventions that can be widely applied incare homes.

The first part of the WHELD project will identify thebest approaches for such an intervention. Theoptions will include person-centred care, socialinteraction, exercise and reviewing theantipsychotic medication that residents are taking.

Once the therapy has been designed it will betested in a large-scale study.

Lay summary

Psychosocial interventions for living well with dementiain care homes


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Contacts

Academic Editor / Director of ResearchProfessor Clive Ballard

Head of ResearchDr Susanne SorensenT 020 7423 3600

Research Communications ManagerDr Anne CorbettT 020 7423 3609E [email protected]

Commissioning Editor / ResearchCommunications OfficerDr Jerome Boyd-KirkupT 020 7423 3605E [email protected]

Scientific Liaison OfficerDr James PickettT 020 7423 3607

E [email protected]

Executive Administrative OfficerMatt MurrayT 020 7423 3603E [email protected]

General [email protected]

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Scientists, clinicians and healthcareprofessionals can now apply for our researchgrants into the cause, cure, care andprevention of all types of dementia.

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Alzheimers Research e-journal Issue 11 2012

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