Clinical Focus MENTAL HEALTH

Caring for older people with dementia

Margaret M Brown investigates how practice nurses can contribute to the early diagnosis of people with dementia in light of the National Service Framework for Older People. She shows that opportunities exist to work in conjunction with other health and social services for the ongoing care of these people.
fessionals and sufferers. he National Service Table 1. The onset of the illness varies Framework (NSF) for Indicators of the in presentation. Some common Older People (2001) is a onset of dementia indicators are listed in Table 1. part of the governments plan to Memory, language, Memory loss, particularly for set national standards to improve reasoning recent events, is one of the earliboth the quality and equity of Memory loss est symptoms of dementia. health services for older people. Memory impairment is often perEach of the standards sets Memory impairment ceived by older people and promilestones for progress and Impaired ability to learn and fessionals as an inevitable part of target dates. retain new information the ageing process. However, in One of these milestones requires Difficulty managing complex dementia memory problems are every general practice to have a tasks accompanied by other changes in protocol to diagnose, treat and Impaired reasoning thinking and behaviour that procare for patients with dementia by Language problems gressively worsen. These may 2004. The protocol must be agreed include problems in learning and with both specialist health care and Word-finding problems retaining new information, diffisocial services. This closer working Behavioural changes culty managing complex tasks, relationship should also include Indifference, apathy and and impaired reasoning. provision of training for primary apathetic Evidence of language and wordcare staff in the recognition and Anxiousness, anger, finding problems may also occur. screening for dementia. This trainaggression Frequently, however, changes in ing should include the use of at the persons behaviour are the least one screening tool to assess most obvious signs of dementia. cognitive function. The person may become indifferent and apaThe National Institute for Clinical thetic or, alternatively, they may become anxExcellence (NICE) (2001) guidelines on preious, angry or aggressive. scribing anti-dementia drugs emphasizes the importance of shared-care protocols and appropriate training for primary care staff. Recognition The first step in caring for the person with dementia is to recognize a problem exists. The Aetiology older person may present with a number of Dementia is a syndrome or set of signs and physical health problems and the primary care symptoms resulting from a number of different team is most likely to have the opportunity to diseases. Although prevalence studies of demenrecognize dementia. tia vary considerably, it is generally thought that In a survey of 1 000 GPs, about half believed the disease occurs in 1.4% of people aged that early recognition and diagnosis of demen6569 years, rising exponentially to 32.2% in tia was important (Audit Commission, 2000). 9095 year olds (Hofman et al, 1991). The A survey by Trickey et al (2000), asked primacommonest form of dementia is Alzheimers disry care nurses about their routine conduct of ease, which accounts for about 50% of cases. It checkups for people over 75 years. Of the 65% is estimated 700 000 people in the UK have who responded, only 13% used formal cognisome form of dementia (NICE, 2001). tive testing as part of their health assessment. Dementia causes a progressive deterioration However, most of these respondents strongly in an individuals ability to think, reason and supported the introduction of guidelines and remember. Over a variable period of time, the training in this area. person becomes increasingly dependent on othNaidoo and Bullock (2001) interviewed ers as their ability to perform the activities of patients and carers in preparation for the daily living deteriorates. Unfortunately, the disdevelopment of care pathways for dementia. ease brings with it an increasing loss of insight, They suggested that many of the interviewees which creates further difficulties for carers, pro-

Margaret M Brown RMN, DipN, BA (hons), MSc is Senior Charge Nurse in the Community Mental Health Team for Older People, at Lanarkshire Primary Health Care NHS Trust and is Lecturer in the School of Health Studies at Bell College, Hamilton.

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were concerned that the early symptoms of dementia were either missed or ignored in the primary care setting.

Early diagnosis
Early diagnosis is vital for the sufferer and for their carer. The potential benefits are listed in Table 2. Initially, this allows any reversible causes to be treated, such as delirium, depression, inappropriate use of medications, or any concurrent physical problems. It also allows the opportunity for treatment with the anti-dementia cholinesterase inhibitors. The opportunity to obtain benefits from prescribing occurs early in the course of the disease, during the mild to moderate stages. Data suggest that the benefits to patients whose treatment is delayed for 6 months never match the benefits experienced by those who are treated early (Farlow et al, 2000). An awareness of the presence of dementia can also encourage suitable caution when prescribing medication that may worsen cognition, e.g. sedatives (Iliffe, 1998). In addition, health professionals can prompt these patients to remember that they need to collect prescriptions and attend appointments. Early diagnosis is also important to carers because it allows them to receive advice and information about dementia and the likely impact this diagnosis may have on their lives. For those patients in the earlier stages of the disorder, counselling may be offered to help them, their carers and families understand and come to terms with the diagnosis of dementia. This may also be an opportunity to make provision for their future. This could include arranging financial issues or planning the patients future care. If appropriate, referral to other agencies, e.g. social services or secondary services such as the Old Age Psychiatry service, may be made at this time.

may have, such as pain, fatigue and medication. Consideration should be given to the persons language, ethnic origin, and sensory, perceptual and physical abilities when performing assessments using this tool (Foreman et al, 1996). The presence of concurrent depressive illness may also distort results.

Table 2. Benefits of early recognition and diagnosis of dementia

Informed patient and carer Early treatment with cholinesterase inhibitors Reduced carer burden Early access to services Opportunity to plan patients future care Professionals alerted

Secondary services
It can often be difficult to decide when to refer a patient to the old age psychiatry service. Table 3 outlines the key circumstances in which referral should be made to specialized services. Considerable differences in service provision occur across the country. Individual teams are likely to have their own criteria for referral. However, most specialist services would expect to see patients who have complex problems or whose diagnosis is problematic. Referral should also be considered for patients who have a high risk of injury, where abuse is suspected, or where specialist assessment is needed, for example, of testamentary capacity or ability to drive safely. The most important issue in referral to the specialist old age psychiatry service is communication between primary and secondary care. Shared care for the person with dementia and their carers is essential.

Table 3. When to refer to specialist services

Uncertain diagnosis Risk assessment Specialized assessment Prescribing advice Complex problems

Treatment
Considerable advances have been achieved in the symptomatic treatment of Alzheimers disease. The anti-dementia drugs, cholinesterase inhibitors (ChEIs), have been licensed and 72% of patients with mild to moderate dementia have the potential to benefit (Alzheimer Scotland Action on Dementia, 2001). These drugs include rivastigmine (Exelon), donepezil hydrochloride (Aricept) and galantamine hydrobromide (Reminyl).

Department of Health, 2001.

Early recognition of dementia in primary care gives both the patient and her carers the best chance of good support and lasting health.

Assessing cognitive function

Cognition includes the domains of memory, language, reasoning and learning. In a busy primary care setting, it is important to use a valid, reliable, short and easily-administered test of cognition as a screening tool. The test most often used for this purpose is the Mini Mental State Examination (Folstein et al, 1975). Screening is used simply to determine whether or not an impairment exists. It may not reveal the precise nature of the patients impairment. Caution in the use of such tools is required. Results can be influenced by the persons intellectual ability and any physical problems they
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KEY POINTS
Every general practice must have a protocol to diagnose, treat and manage patients with dementia by 2004. An estimated 700 000 people in the UK have some form of dementia. Early diagnosis and treatment are vital for sufferers and carers. Screening tools are useful but must be interpreted carefully. Patients who have complex problems or problematic diagnosis should be referred to secondary care. Cholinesterase inhibitors (ChEIs) improve the symptoms of Alzheimers disease in three areas: cognition, behaviour and activities of daily living. Practice nurses are well placed to support both patients and carers.

These drugs work by increasing the available amount of the neurotransmitter acetylcholine in the brain, which is depleted as the disease progresses. It has been shown that treatment with ChEIs improves symptoms of the disease such as loss of cognitive function, poor performance of activities of daily living and that altered behavioural symptoms are alleviated. Data suggest that treatment with rivastigmine is highly effective in improving the behavioural and cognitive symptoms characteristic of Alzheimers disease with 53% of patients showing improvement on all of the items in the Neuropsychiatric InventoryNursing Home Version (Bullock et al, 2001). The management of these three key areas, cognition, behaviour and activities of daily living, are essential to the wellbeing of patients and can reduce carer burden (NICE, 2001). The prescription of these drugs, however, has been patchy. In some areas of the country their use has been limited to specific numbers of patients at any one time and in other areas they are not prescribed at all. This appears to have been the result of cost considerations. However, cost savings in one area may result in additional hidden costs elsewhere. When these drugs reduce the symptoms of dementia, the costs of carer stress and the use of health and social care are also reduced. In some cases, admission to long term care is delayed (Knapp, 1998). In addition to these prescribing limitations, referral to the old age psychiatry service, to assess patients suitability for these drugs, may be severely limited by the resources available in each area. Swanwick and Lawlor (1999) have suggested that GPs who know the patient and their carer well may be in a better position to prescribe these drugs. The recent guidelines from NICE (2001) recommend that ChEIs be prescribed by specialists such as old age psychiatrists, neurologists and geriatric physicians. Where GPs take over prescribing they should do so under shared-care protocols. The Health Technology Board for Scotland (HTBS) has gone one step further and recommended that, when access to a specialist is problematic, diagnosis and treatment initiation may be carried out within a shared-care protocol by a GP who has substantial experience in the diagnosis of dementia (HTBS, 2001). However, it should be remembered that drug treatments are only one element of comprehensive management of patients with dementia (NICE, 2001).

Primary care
In the early stages of the illness regular contact from professionals with both patient and carer can be very supportive. Those patients taking anti-dementia drugs will require contact with health care professionals at least 6 monthly after their response to medication is stabilized. For patients in the more advanced stage of the illness, the carer is an important focus for interventions because they are the main care providers. For the patients themselves, regular health checks may enable unnecessary exacerbations of their already impaired cognition to be prevented.
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Table 4. Useful contacts

Alzheimers Society Gordon House, 10 Greencoat Place, London SW1P 1PH Helpline: 0845 300 0336 www.alzheimers.org.uk info@alzheimers.org.uk Alzheimers Scotland Action on Dementia Helpline: 0808 808 3000 22 Drumsheugh Gardens, Edinburgh, EH3 7RN www.alzscot.org alzheimer@alzscot.org Age Concern Helpline: 020 8765 7200 Astral House 1268 London Road, London www.ageconcern.co.uk infodep@ace.org.uk MIND Helpline: 08457 660 163 1519 Broadway London E15 4BQ www.mind.org.uk contact@mind.org.uk The Princess Royal Trust for Carers Helpline: 0141 221 5066 Campbell House 215 West Campbell Street, Glasgow G2 4TT www.carers.org info@carers.org

Physical health problems such as urinary infections and anaemia can cause a rapid deterioration in cognitive function. Depression can also coexist with dementia and can have similar negative results.

Carers
Carers for people with dementia are often elderly themselves. They are a vital resource and their health and welfare are not only important to themselves as individuals, but of considerable importance to the person with dementia they care for. Dementia is unrelenting and protracted in the demands it can make on carers. Demands include, in addition to the physical tasks of caring, the psychological, emotional and financial impact. These demands may be greater than the resources carers can summon to meet them. Carers for people with dementia have been identified as experiencing higher rates of depressive illness than those caring for people with other conditions (Saad et al, 1995). Support and services for carers, it has been recognized, reduce carers burdens and their risk of mental health problems (Illiffe, 1998). It should be borne in mind that caring is not always a negative experience. Caring for someone you love can be positive, perhaps bringing a sense of fulfilling your responsibility to the person cared for or expressing love and commitment. Health professionals can provide a range of interventions for carers to help in their caring role. These can include education in managing the patients day-to-day care, counselling and support. Carers often need help to come to terms with the diagnosis, the enduring and changing nature of the illness, and the later decisions about care placements. Practice nurses are often best placed to offer health screening, prevention and promotion interventions to carers. At the same time the carer will need emotional support, advice, and information. Where professionals are not confident, or lack the time or resources to provide this support to carers, it is important that they keep close contact with community nurses, social services, specialist mental health services and voluntary agencies. The Alzheimers Disease Society (or Alzheimers Scotland Action on Dementia) provide help and support and have a 24-hour helpline available to carers and sufferers (Table 4). People with dementia are being cared for in the community in ever greater numbers and to a more advanced stage of their illness. Primary

care professionals are often the most appropriate people to provide ongoing support and management of these patients and their carers. The provision of shared-care protocols and joint training opportunities, with both social services and secondary health services are an important element in the provision of care for this group of patients.

References
Alzheimer ScotlandAction on Dementia (2001) Alzheimers charity calls on Scottish Executive for immediate action on postcode prescribing. 19 January. h t t p : / / w w w. a l z s c o t . o r g / m e d i a / n i c e r e l e a s e . html (accessed 3 August 2001) Audit Commission (2000) Forget Me Not. Audit Commission, London Bullock R, Moulias R, Steinwachs K-C, Cicin-Sain AG, Spiegel R (2001) Effects of rivastigmine on behavioural symptoms in nursing home patients with Alzheimers disease: A European, open-label multicentre study. Poster presented at Pathways from Science to Effective Patient Management in Dementia, held 2325 March 2001, Istanbul, Turkey Department of Health (2001) National Service Framework for Older People. Modern Standards and Service Models. Department of Health, London Farlow M, Anand R, Messina J, Hartman R, Veach J (2000) A 52-week study of the efficacy of rivastigmine in patients with mild to moderately severe Alzheimers disease. Eur Neurol 44: 23641 Folstein MF, Folstein SE, McHugh PR (1975) Mini Mental State Examination: A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 12: 18998 Foreman MD, Fletcher K, Mion LC, Simon L (1996) Assessing Cognitive Function. Geriatr Nurs 17(5): 22833 Health Technology Board for Scotland (2001) Comment 1. Comment on the National Institute for Clinical Excellence Technology Appraisal. Guidance on the Use of Donepezil, Rivastigmine and Galantamine for the Treatment of Alzheimers Disease. April 2001. HTBS, Edinburgh Hofman A, Rocca W, Brayne C et al (1991) The prevalence of dementia in Europe. Int J Epidemiol 20(3): 73648 Illiffe S (1998) Mental health in old age: Perspectives from primary care. Mental Health Review 3(1): 225 Knapp M, Wilkinson D, Wigglesworth R (1998) The economic consequences of Alzheimers disease in the context of new drug developments. Int Journal Geriatr Psychiatry 13: 53143 Naidoo M, Bullock R (2001) An Integrated Care Pathway for Dementia: Best Practice for Dementia Care. Harcourt Health Communications, London National Institute for Clinical Excellence (2001) Guidance on the Use of Donepezil, Rivastigmine and Galantamine for the Treatment of Alzheimers Disease. NICE, London Saad K, Hartman J, Ballard C, Kunan M, Graham C, Wilcock G (1995) Coping by the carers of dementia sufferers. Age and Ageing 24: 4958 Swanwick GRJ, Lawlor BA (1999) Initiating and Monitoring Cholinesterase Inhibitor Treatment for Alzheimers Disease. Int J Geriatr Psychiatry 14: 2448 Trickey H, Turton P, Harvey I, Wilcock G, Sharp D (2000) Dementia and the over-75 check: The role of the primary care nurse. Health Soc Care Community 8(1): 9-16

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