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Dementia care. Part 2: understanding and managing beiiaviourai chaiienges

Emma Ouldred, Catherine Bryant


Management of dementia should focus on the maintenance of function and independence for the person with the disease. Non- pharmacological interventions to manage dementia include reality orientation, aromatherapy and validation therapy. Non- pharmacological ways of managing challenging behaviour are recommended in current guidance. Drug treatments, which may stahiUze the symptoms of Alzheimer's disease or slow down further progression for a time, have heen availahle in the United Kingdom since 1997 and may help some people with dementia. There are high levels of stress, distress and psychological illness in family caregivers of individuals with dementia, and practitioners are well placed to signpost carers to appropriate support organizations.

Key words: Girers • Challenging behaviour • Dementia

P art 1 of this series on dementia care provided an outline of recent dementia care guidance and the Mental Capacity Act 2005, in addition to giving practitioners a brief overview of the different forms

of dementia, the assessment process, and how to differentiate between dementia, delirium and depression. This article explores the management of dementia (focusing on challenging behaviour), which includes use of psychosocial interventions and available drug treatments. Coping strategies and tips on effective communication are provided. It also highlights the need for all practitioners to be aware of the contribution informal carers make in caring for people with dementia and also to be cognisant of what support is available for carers to ensure timely referral to such services.

Emma Ouldred

is Dementia

Nurse Specialist

and Catherine

Bryant is


Physician, King's

College Hospital

NHS Trust,


Accepted for




Person-centred care

One of the aims of management is to promote independence for the individual and maintenance of fiinction for as long as possible underpinned by the philosophy of person-centred care (National Institute for Health and Clinical Excellence [NICE], 2006), whereby the person with demetia is seen as an individual, rather than focusing on their illness and on abilities they may have lost. Instead of treating the person as a collection of symptoms and behaviours to be controlled, person-centred care takes into account each individual's unique qualities, abilities, interests, preferences and needs (Kitwood, 1997)


Following a diagnosis of dementia both the patient and their carer are likely to need information and ongoing support about the condition and the implications for the future.

including the course and prognosis of the condition, available treatments, and support available from both voluntary and statutory organizations. The provision of written information is recommended and the Alzheimer's Society provides a variety of information sheets about all aspects of dementia and dementia care (www.alzheimers.org.uk).

Coordination of care and care pianning

Care for the person with dementia needs to be coordinated across both health and social care agencies, and may involve different specialists within the multidisciplinary team at certain time-points. Ideally care should be coordinated by a case manager. Care plans should address activities of daily living (ADLs), which maximize independent activity, enhance function, adapt and develop skills, and minimize the need for support (NICE, 2006). Care plans should consider:

Consistent and stable staffing Retaining a familiar environment Minimizing relocations

Flexibihty to accommodate fluctuating abilities Assessment and care planning advice regarding ADLs and ADL skill training from an occupational therapist Assessment and care planning advice about independent toileting skills. If incontinence occurs all possible causes should be assessed and relevant treatments tried before concluding that it is permanent Environmental modifications to aid independent functioning, including assistive technology, with advice from an occupational therapist and/or clinical psychologist Physical exercise, with assessment and advice from a physiotherapist when needed Support for people to go at their own pace and participate in activities they enjoy The needs of carers.

Cognitive stimuiation

Current guidelines recommend that all people with mild to moderate dementia are offered cognitive stimulation, and the effects may add to the effects of drug treatment (NICE, 2006). Cognitive stimulation can be defined as engagement in a range of activities and discussions aimed at general enhancement of cognitive and social flinctioning (Clare and Woods, 2004). It may occur informally through recreational activities, formally through group programmes that are designed to stimulate or engage people with dementia, or through training exercises designed to address specific cognitive fianctions. Cognitive rehabilitation programmes are usually individually tailored and target specific goals (Clare and Woods, 2004).

Pharmacological interventions Drug treatments for Alzheimer's disease

There is currently no known cure for Alzheimer's, but there are drug treatments available (cholinesterase inhibitors [ChEIs]), which may stabilize or slow down the progression of the disease. They work by helping to stop the depletion of the chemical neurotransmitter, acetylcholine (deficiency of acetylcholine occurs in Alzheimer's and is related to both cognitive and non-cognitive symptoms) (Figure 1) (Francis et al, 1999). ChEIs may help cognitive symptoms, such as memory loss, and patients and carers might report a positive

effect on activities of daily living, behaviour and mood. They are effective in the mild to moderate stages of disease. There are three drugs currently available in the United Kingdom (UK): Aricept®, Exelon® and Reminyl®. Common side- effects include anorexia, diarrhoea and stomach cramps. Rare side-effects include nightmares and increased confusion. Not all individuals with Alzheimer's wOl respond t o treatment - a third will show improvement, a third will not deteriorate and

a third will have no response and continue to deteriorate

(Overshott and Burns, 2005). ChEIs should only be prescribed and monitored by specialists and the drug stopped if it is felt

not to be of benefit to the patient.

Memantine is licensed in the UK for moderate to severe dementia. Memantine blocks a neurotransmitter, glutamate, which is released in excessive amounts when brain cells are damaged by Alzheimer's {Figure i) (Danysz et al, 2000). NICE (2006) has recently issued guidance regarding the availability of ChEIs on NHS prescriptions. It recommends that these drugs should only be prescribed to people with moderate Alzheimer's. NICE does not recommend the use of memantine except as part of well-designed clinical trials.

Treatment for vascular dementia (VaD)

Currently ChEIs

in the UK. However, if the clinical picture suggests a mixed form of dementia then they may be considered. Modification of vascular vascular risk is widely recommended for the management of vascular disease although long-term studies directly addressing effect on cognition are lacking (NICE, 2006). The main aim of treatment for people with VaD is to reduce their risk of further stroke damage through modification of cardiovascular risk factors as stated below. However, it is important to remember that modification of vascular risk also needs to be addressed in all people with dementia regardless ofthe dementia sub-type. Modification of vascular risk factors includes (Alzheimer's Society, 2005a):

• Treatment of strokes and transient ischaemic attacks

• Blood pressure control: people with dementia and carers should be encouraged to comply with anti-hypertensive medication and have their blood pressure checked regularly

• Management and treatment of hypercholesterolaemia: this may be achieved through manipulation of diet alone or in combination with the prescription of a statin

• Modification ofalcohol intake: people with dementia should be advised to drink in moderation, i.e. no more than two units ofalcohol per day (one unit is the equivalent of one shot of spirit, a small glass of wine or half a pint of beer/lager)

are not licensed for the treatment of VaD


Figure 1. The action of cholinesterase inhibitors on acetytcholine (a); and memantine effect on glutamine (b).


nerve ending




reduced to

recognition site

inactive form by choiinesterase






Postsynaptic neuron




Biocked by



NMDA receptor in CNS neuron

• Smoking cessation: people with dementia should be encouraged to give up smoking. Appropriate guidance regarding smoking cessation clinics and methods to give up smoking should be given

• Physical exercise: people with dementia should be advised to exercise regularly, such as 30 minutes per day. This does not have to be intensive gym activity but could simply mean a walk in a local park

• Diet: advise to eat a varied low salt, low fat diet should be given. Referral to a dietician may be required.

Treatment for dementia with lewy bodies (DLB) There is some evidence that rivastigmine may help both cognitive and non-cognitive symptoms in DLB (NICE, 2006). Modification of vascular risk factors is also important in this patient group.

Ciiallenging behaviour

Challenging behaviour can be defined as any behaviour that is unpredictable, frequent and of long duration, and is distressing to the individual or a nuisance to others (Table 1) (Tarbuck and Thompson, 1995). Adverse behavioural symptoms associated with the dementia need to be assessed thoroughly and a care plan developed with the involvement ofthe individual and their carer. Alleviation of carer burden should also be considered. Neuropsychiatric and behavioural problems in older people can occur in a number of different conditions, including dementia, delirium, depression, paranoid states, and drug and alcohol intoxication. More than 90% of people with dementia develop neuropsychiatric symptoms at some stage during their illness (BaUard and Howard, 2006) (Table 2). These symptoms can be distressing for people with dementia and their carers, and contribute to caregiver burden. They are often the precipitant for admission to institutional care (Yaffe et al, 2002). Neuropsychiatric symptoms (especially depression and apathy) are also common in VaD. In DLB, the presence of delusions, hallucinations and depression are a core part of the disease. Challenging behaviour is often attributed to the dementing process. However, while changes in the brain can cause behavioural disturbance it is also important to consider other factors which may be contributing to distressing behaviour.

Possible causes of challenging behaviour Background factors

Factors, such as personality, leisure and occupational activities, and a person's habitual way of responding to stress, are important to consider; for example, a person might wander because they were used to walking in a previous occupation (Monsour and Robb, 1982).

Current factors These include medical and physiological factors, such as pain, hunger, need for the toilet, and need for exercise.

Emotional state Consider whether behaviour has been triggered by emotion, such as boredom (people with dementia have a short attention span but still require stimulating activities), anger or anxiety.

Neuropsychological deficits Changes within the brain can cause functional deficits, such as an inability to carry out complex tasks, which can then lead to frustration.

Inability to orientate spatially Changes within the brain can affect perception and spatial awareness.This may result in a patient getting in the wrong bed or not being able to put their clothes on in the right order.

Environmental factors Environmental factors can contribute towards challenging behaviour especially in the hospital setting. These include:

• Ward layout

• Proximity to other people

• Lacking control over routine (e.g. bed time and meal times)

• Being in a strange environment

• Unfamiliar tasks, such as catheterization and blood pressure measurement

• Sensory stimulation overload: the general noise and atmosphere of a busy ward can be overwhelming to a person with dementia who sometimes find it difficult to make sense of their usual home environment (Kerr, 1997).

Table 1. Examples of challenging behaviour in dementia



Difficult behaviour

Refusal to'cooperate with therapy


Verbai or physicai aggression, destroying objects around others


or self, e.g. trying to pull out catheters, rummaging through

Deficient behaviour

iockers, interfering with other people's belongings, wandering Behaviour may be hypoactive, apathetic or withdrawn

Tabie 2. Prevaience of neuropsychiatric symptoms in Aizheimer's disease

• Apathy (loss of drive and motivation or lack feeiing or emotion) (50-70%)

• Agitation (excessive motor activity that may manifest as restlessness, wandering and agitation) (20-60%)

• Depression and anxiety (40%)

• Psychotic symptoms such as hallucinations and delusions (25%) Source: Ballard and Howard (2006)

Communication difficulties

People with dementia might not be able to communicate their! needs verbally due to word-finding difficulty or dysphasia. i Behaviour, such as calling out, agitation or wandering, might be a way of communicating need.



In dementia the sleep-wake cycle is often disturbed with ' individuals becoming more agitated or active at night (in [ some cases the cycle is reversed with individuals sleeping j

during the day and awake all night). 'Sundowning' refers to j behavioural difficulties that worsen towards the end of the day, with symptoms including: restlesness, agitation, suspicious j behaviour, disorientation, visual and auditory hallucinations, ' less cooperation and increased argumentative tendancies. It


Although the cause of sundowning is unknown it seems to result from changes within the brain and may be linked to a lack of sensory stimulation after dark (Alzheimer's Australia, 2005); there are fewer cues towards late evening and less routine at night which may exacerbate confusion. People with dementia tire more easily and can become more difficult to manage. This can often be very stressful for carers.

often be worse after a move or change in routine. j

Coping with sundowning

• Keep person with dementia active during the morning and encourage an early afternoon nap

• Avoid physical restraint, allow person with dementia to pace if safe to do so; an evening walk is sometimes helpful

• Avoid caffeine towards late evening, and promote sleep by providing hot milky drinks and gentle music

• Some people find it reassuring to sleep with the radio on or night-lights

• Preparing the environment, such as closing curtains and encouraging the person with dementia to assist in evening meal preparation, may promote routine and reduce anxiety

• Consider whether loud noise from television might exacerbate confusion

• Encourage participation in activities familiar from earlier times such as card games

• Avoid invasive procedures towards evening if possible

• Make sure physical needs are met such as nutrition, hydration, elimination, pain

• Exclude physical illness as a possible cause of sundowning. Management of behavioural problems in dementia is often multifactorial and needs to be tailored for the individual patient. People with dementia should be managed by skilled multidisciplinary teams, and psychiatric and/or psychology expertise may be needed. Delirium and depression must always be looked for and treated. Physical symptoms, such as pain or constipation, should be treated. Sensory deficits should be corrected. Good dementia care practice means that non- pharmacological interventions should always be tried first. Pharmacological interventions should only be considered if there is serious distress or risk to the patient. Case Studies 1 and 2 describe unusual behaviour in dementia and encourage practitioners to consider various possible causes of challenging behaviour in addition to providing advice on how to adopt non-pharmacological ways of managing such behaviour.


Case study 1. Unusual behaviour

Mr B suffers from moderate Alzheimer's disease. He also walks very slowly and wears glasses. He attends the local memory clinic and is wife is his main carer. Mrs B reports to the dementia nurse specialist that over the past few weeks her husband has become much more agitated and has started

t o becom e disoriented in his

toilet frequently at night and is occcisionally incontinent of urine.

own home . She is particularly distressed cis he has started t o pass


in th e wast e pape r basket, is gettin g u p t o use th e

Possible causes of behaviour Urinary tract infection

Nocturnal polyuria might indicate prostatic hypertrophy


Mistaking waste paper bin for toilet due to perception problems

Mr B might not see the toilet due to visual impairment

Mr B might not remember where toilet is in home

Mr B sometimes does not get to the toilet in time and is incontinent due to limited mobility, and messages from the brain are taking longer to get through due to the dementing process

Possible solutions Dipstick urine. Encourage 2 litres of fluids a day

Seek medical advice

Establish normal bowel pattern. Mr B may need a rectal examination. Encourage high fibre diet, increase fluids, consider aperients

Consider use of a commode or urine bottle but advise Mrs B to gently show her husband where the toilet is Ensure glasses are worn and regular eye checks are performed

Ensure a large sign is placed on toilet door with a picture of toilet and also the written word. Keep a light on in the corridor at night

Encourage Mr B t o use th e toilet on a regular basis. Try establishing a 2 hour toileting regime. Consider placing urine bottle near Mr B. Encourage elasticated, easy wear trousers and underwear. Refer to district nursesforcontinence assessment and provision of continence pads

Communication and dementia

As people with dementia lose the ability to use and understand language, communication difficulties result in frustration for the patient and caregiver (Alzheimer's Society, 2005b). However, for staff managing a confused patient there are simple ways to improve communication {Table 3).

Psyciiosociai interventions in dementia

Recent guidance suggests that non-pharmacological/ psychosocial interventions for the management of non-cognitive symptoms (such as hallucinations, delusions and anxiety) and challenging behaviour should be considered in the first instance unless there is an immediate risk of harm to the person with

dementia or others, or if there is severe distress then medication might have to be used as a first line measure (NICE, 2006).

A range of approaches have been used although good quality

evidence of benefit for many is lacking (Livingston et al, 2005). Qualitative evidence suggests that it is important to avoid compounding feelings of failure and humiliation where people with demenda have difficulty with interventions, activities and games (NICE, 2006).

Complementary therapy The benefits of aromatherapy and massage have been shown to be an effective way of alleviating agitation in severe dementia (Alzheimer's Society, 2003; Ballard and Holmes, 2004).

Multisensory stimulation Multisensory therapy includes visual, auditory, tactile and

olfactory stimulation offered to clients in a specially designed room. Stimulating music, lights, aromas, and objects are offered to people with dementia in a non-sequential and unpatterned fashion, which does not place great intellectual stress on th e patient. Multisensory stimulation/snoezelen


therapy in people with moderate to severe dementia (Verkaik

et al, 2005).

reduced apathy compared with activity therapy or n o

Music therapy

As the name suggests music therapy is an innovative way o f using musical improvisation (by chent and practitioner) to

create a healing environment. It has

been shown to treat th e

symptoms of dementia and improve quality of life for people

with dementia and carers (Alzheimer's Society, 2003).

Reminiscence therapy This involves th e discussion of past activities, events and experiences with another person or group of people, usually with the aid of prompts, such as photographs, household and other familiar items from th e past and music. Reminiscence groups typically involve group meetings in which participants are encouraged to talk about past events. Life review usually involves individual sessions, in which the person is guided chronologically through life experiences and may produce a life storybook. Reminiscence is interactive and informative. Knowing a little about a person's past, hobbies and experiences helps carers to understand an individual better (Livingstone et al, 2005). Although evidence is lacking for this intervention, it is widely used and not harmful to the person with dementia.

Table 3. Communication advice

• Break down tcisks into manageable chunks

• Keep environmental noise to a minimum, e.g turn TV down

• Avoid hostile body language

• Remain pleasant, calm and supportive

• Maintain eye contact with your patient

• Use short sentences

• Speak slowly and wait for response

• Keep the pitch of your voice low but ensure patient can hear you

• Point, touch, show, initiate a movement for the patient

• Talk to the main carer. How do they communicate with your patient? Do they have any special advice?

Ask only one question a t a time

Case study 2 . The wandering patient

Mr N is a 73 year-old gentleman wh o has severe vascular dementia. He lives at home with his family and is admitted to the local hospital for an endoscopy to investigate anaemia. He has jDrofound word-finding difficulty.


• Diverticular disease

• Osteoarthritis

• Hypertension

• Hypercholesterolaemia

• Previous exposure to asbestos

Has given up smoking but used to smoke a packet a week. He used to be a postman.

Current medication

Simvastatin 10 m g once daily (OD) Aspirin 75 m g od Bendrofiumethiazide 2.5 m g od


(atypical antipsychotic) 25 m g per night (nocte)


(benzodiazepine) 0.5 m g when required (prn)

Beiiaviourai probiems

• M r N wanders around the ward during the day but especially at night

• He is disinhibited and walks around with his trousers unbuttoned

• He interferes with other patients and their belongings

• He tries to pick up imaginary items from the fioor

This upsets other patients and staff, and increases his risk of falls. However, this behaviour is not new and his fcimily admit they lock him in at home.

Reasons for exiiibiting sucii beiiaviour

' Change of environment: Mr N is used to his own home and may be frightened by hospital admission. Ask his family to bring in fcimiliar items for him such as photographs

• Looking for somebody/something:

' Lacking stimulation: Mr N may be bored. Ask his family what activities he enjoys doing at home

' Depressed: consider performing a Cornell Assessment of Depression in Dementia Scale

' Sleeping too much in the day: encourage participation in activities and avoid naps

' Over-sedated: ask the medical team t o review his medication especially quetiapine and lorazepam In pain: remember M r N has other medical problems, such as osteoarthritis. and may not be able to conceptualize pain and may be unable to verbalize his feelings due to word-finding difficulty. Observe for non-verbal signs of pain such as posture

' Responding to hostility and negative body language: staff and other patients may unwittingly exacerbate the situation by being aggressive towards Mr N. Remember other patients need reassurance

' Continuing a habit: M r N was a postman and was used to spending hours at a time on his fieet. His wandering might be a result of pre-learned behaviour

• Consider environment. Is it safe for him to wander around a certain area of the ward?

M r N feels insecure and needs reassurance

Validation therapy

This is the process of communication with disorientated elderly people by acknowledging and supporting their feeUngs in whatever time or location is real to them, even though this may not correspond to our'here and now' reality (Jones, 1985). Rather than correcting factual errors in conversation, one seeks to find out the real meaning behind communication.

Reality orientation Reality orientation (RO) is aimed at reducing confusion and inappropriate behaviours in people with dementia. RO can be divided into a 24-hour or informal format and a classroom or

group format. The informal format depends on environmental cues and memory aids, such as clocks, calendars, newspapers' and incidental conversations that reinforce orientating content. The classroom format involves small groups with similar levels of cognitive function meeting several times a week to focus on orientating tasks. The classic task is completing the reality orientation board, which summarizes information such as the day, date, place, weather, etc. In a systematic review RO was shown to improve cognitive function and behaviour in dementia (Spector et al, 1998).

Cognidve behavioural therapy (CBT) CBT works by changing people s attitudes behaviour. Therapies focus on thoughts, images and beliefs, and how this relates to behaviour. Examples include progressive relaxation techniques, which reduce agitation and anxiety (Prasher, 2005).

Environmental modification Kerr (1997) suggests that environments might require modification to make them calm, familiar and safe. Examples of environmental modification include: wall colour, signage, the structure of a building and flooring.

Psychological interventions with caregivers Research evidence suggests that specific techniques (psychoeducation) to teach caregivers how to change their interactions with people with dementia may alleviate the neuropsychiatric symptoms of dementia (such as agitation). There is also some evidence to suggest that family counselling can be helpful in reducing institutionalization of people with dementia (Livingston et al, 2005).

Carers There are over 4 million carers in the UK. One million people provide care for more than 50 hours per week (Audit Commission, 2004). Carers provide the vast majority of health and community care. Their works saves the nation an estimated /;87 billion per year (Carers UK, 2007). There are high levels of stress, distress and psychological illness in family caregivers of individuals with dementia (Mahoney et al, 2004). Many studies have shown that the incidence of depression in caregivers is high, ranging from 18-47% (Rosenthal et al, 1993; Teri and Traux, 1994), and caregivers who are depressed experience higher degrees

et al, 1991). The degree of behavioural

of burden (Lawton

problems in people with dementia appears to contribute to caregiver burden (Baunigarten et al, 1994).

Support for carers Over the past decade the needs of informal carers have been recognized through legislation and government guidance. NICE (2006) has recently set out comprehensive guidance regarding the assessment, interventions and practical support that should be available for carers.

NICE guidance on carer support Assessment

Health and social care managers should ensure that the rights of carers to an assessment of needs - as set out in the Carers and

Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004 — are upheld. Carers' assessments should seek to identify any psychological distress and the psychosocial impact on the carer, including after the person with dementia has entered residential care.

Interventions Care plans for carers should include tailored interventions, such as:

• Individual or group psychoeducation

• Peer-support groups tailored to the needs ofthe individual, e.g. the stage of dementia of the person being cared for

• Telephone and internet information and support

• Training courses about dementia, services and benefits, and dementia care problem-solving

• Consider involving the person with dementia and other family members, as well as the primary carer

• Ensure support, such as transport or short-break services, is provided to enable carer participation in interventions

• Offer psychological therapy, including cognitive behavioural therapy, with a speciahst practitioner to carers who experience psychological distress and negative psychological impact.

Practical support

Health and social care managers should ensure that carers of people with dementia have access to:

- A range of respite or short-break services

- Services should meet the needs of both the carer (in terms of location, flexibility, and timeliness) and the person with dementia

- Services should include, for example, day care, day- and night-sitting, adult placement and short-term and/or overnight residential care

- Transport to these services should be offered

• Respite/short-break care should include therapeutic activities tailored to the person with dementia provided in an environment that meets their needs (the person's own home wherever possible).


This article highlights the importance of coordinated care and a person-centred approach to dementia care. It outlines reasons why a person with dementia might exhibit behaviour that challenges and provides useful coping strategies. Non-pharmacological interventions in the management of dementia can be therapeutic although more research is needed to provide a greater evidence base. Informal carers have a difficult task to perform and are

often isolated. It is hoped that practitioners will understand the needs of carers better and also feel more confident in directing carers to support organizations. Part 3 moves onto the advanced stages of dementia. It highlights the need for dementia to be recognized as a terminal condition, which deserves equal access to palliative care services as other more recognized conditions, such as cancer. The article is a useful point of reference for nurses working in the acute hospital setting and the community




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I Management of dementia should focus on the maintenance of function and independence for the person with th e disease.

i Modification of vascuiar risk factors is important in aii forms of dementia.

i Choiinesterase inhibitors are avaiiabie for symptomatic reiief of cognitive symptoms in Aizheimer's disease.

i Neuropsychoiogicai and behavioural probiems are very common in people with dementia and a variety of non-pharmacologicai interventions are available.

I Carer burden can be improved by a number of interventions, including provision of information, education and training.