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Dementia: early diagnosis is vital for best care

VOL: 97, ISSUE: 09, PAGE NO: 41

Lucy Hamilton, RGN, is a community staff nurse, Oxford

While working as a community staff nurse in a district nursing and primary health care team I visited a woman with pernicious anaemia, whom I'll call Lilly Ashton. She had also been diagnosed with Alzheimer's disease, but any monitoring of this was merely a consequence of our three-monthly visits to administer cytamen injections.

While working as a community staff nurse in a district nursing and primary health care team I visited a woman with pernicious anaemia, whom I'll call Lilly Ashton. She had also been diagnosed with Alzheimer's disease, but any monitoring of this was merely a consequence of our three-monthly visits to administer cytamen injections.

Ms Ashton had lived alone since the death of her partner in 1992. Carers from social services saw her twice a day, but the community psychiatric nurse no longer visited. The only way concerns could be communicated to the primary health care team was through the social services care manager, who would be alerted by the carers. This was how we found out that she had developed a leg ulcer. As a result, our visits became more frequent.

Through increased contact with Ms Ashton and talking to her carers, our assessment of the patient and her living conditions changed. We could see that she was not coping with the vital activities of daily living. She was not eating well or washing and dressing herself and had continence problems. With no family support and inadequate community supervision, residential care was an urgent priority and we were fortunate to find suitable accommodation for her.

Crisis management
If Ms Ashton had not had specific nursing needs we may not have become involved until much later. Although residential care would eventually have been unavoidable, the transition could have been better planned if we had had more time. If we had acknowledged responsibility for the dementia before it could no longer be ignored, we could have mobilised other professionals - the community psychiatric nurse, care manager and GP.

Unfortunately, dementia care in the community is often characterised by crisis management. GPs and the primary health care team tend to identify older people with dementia only during times of crisis, which could be avoided with earlier diagnosis and intervention (McNally et al, 1998).

How many people are in need of nursing care are we not aware of? Why not encourage early referral to support these people and their families before they are in crisis, which is common practice for patients with terminal cancer? Early referral contributes to early diagnosis and accurate assessment of the support required.

GPs often refer people with dementia to the district nursing team when there is a functional nursing need. They responded positively when we suggested that they refer people with dementia to us at the time of diagnosis.

Coincidentally, at this time a gerontologist was looking for people with dementia to participate in a drug trial. He needed diagnosed subjects and a search of the practice list revealed that of the 402 people aged 75 and over, only 17 had a written diagnosis of dementia. This is well below the 10% that would be expected in the general population (Askham and Thompson, 1990). Six of those who had been diagnosed were already on our caseload, mainly for other reasons.

An assumption that there had to be undiagnosed people with dementia registered to our practice was supported in the literature (Iliffe, 1998). Interestingly, one of the practice's GPs thought that he and other members of the primary health care team could identify several patients with some degree of dementia who had not been formally diagnosed. Iliffe (1998) suggests that nurses and GPs who recognise early symptoms of dementia should document them, even if the family does not acknowledge them. This might aid future requests for help and allow for advanced planning.

A study of by O'Connor et al (1993) assessed a random sample of 174 GP patients aged over 80 for dementia. Of 39 people who were diagnosed, 15 were given practical support and follow-up. Eight patients who were thought to be possibly demented were not - some were depressed or deaf. This study shows that although the diagnosis resulted in support for those with dementia, it also helped to clarify the diagnoses of others.

The low level of diagnosis in our practice meant that, in addition to patients who had not been diagnosed, the district nursing team was not aware of some who had, mainly because of deficits in the referral criteria.

Should the patient be told?
One area of concern is ethical - should the patient and/or family be informed about early signs of dementia? Goldsmith (1999) notes that when dementia is diagnosed there is an immediate dilemma concerning disclosure of this information. It is common practice to share it with family members, but should the patient be told?

Ham (1999) suggests that if people are not aware of their condition at an early stage they cannot make choices about their future care or financial planning. Brodaty et al (1998) suggest that for some people diagnosis comes as a relief as it explains what is happening to them. A study based on interviews with people aware of their diagnosis confirms this (Keady and Gilliard, 1999).

However, Goldsmith (1999) reports that some doctors feel there is no point in distressing patients with such diagnoses when there is no cure. This hints at the kind of paternalistic attitudes that used to prevent the disclosure of diagnoses of terminal cancer, although this is now unusual.

Nevertheless, diagnosis is bound to distress patients and their families and could be destructive without on-going support, knowledge of the services available and practical help. Keady and Nolan (1995) claim that it can be so disturbing that the patient rejects all offers of support. They conclude that personality and coping patterns must be considered when deciding how much information to give, when to give it and how.

It is not helpful to disclose a diagnosis if meaningful support is not going to be provided.

Patients' wishes
Keady and Gilliard (1999) interviewed people with an early diagnosis of Alzheimer's disease to determine their wishes. One said he wanted a central reference point during his time of assessment. Others wanted information on the disease, help in overcoming their anxieties, reassurance about the causes of the illness, practical information about services and benefits, and advice on coping with their care.

Of the 15 subjects studied, none had any contact with health or social services at home. For this reason they usually had nobody outside their families to turn to for help. On the other hand, their carers had access to support groups which excluded them. The study suggests that people with Alzheimer's disease would welcome support groups of their own. Such groups are currently the exception rather than the rule.

In terms of the desires of people with an early diagnosis of dementia, the district nursing team plays a key role. District nurses do not have all the skills and expertise required to meet the needs of these patients and their families, but they are no different from many other cases referred to them.

In terminal cancer, for example, early referral means the district nursing team can build up relationships with dying patients and their families. They can then be involved in planning appropriate care and support from within the framework of help available from other agencies. This continuing relationship helps to identify changes and problems early, preventing crises.

Syson-Nibbs (2000) is a carer whose husband died of Alzheimer's disease. Her account highlights the shortcomings of the care offered by community health and social services. She compares the support and expertise of palliative care and district nurses, GPs and social services automatically available to her father, who was dying of cancer, to her struggle to get help for her husband.

The needs of people with cancer and those with dementia may differ but both groups require a multiagency approach. District nurses are in a position to call on community psychiatric nurses, GPs, social services care managers, occupational therapists, physiotherapists and voluntary and support groups for people with dementia. The advantages of accessibility, a rapid response and familiarity in working with other professionals and agencies are all qualities of the district nurse service which could benefit patients and their families.

Kitwood (1997) says: 'In dementia, the sense of identity based on having a life story may fade... When it does, biographical knowledge about a person becomes essential if that identity is still to be held in place.' Perhaps this is the main rationale for early referral to caring and supportive agencies.

Meeting people with dementia before their communication skills and cognitive powers are severely affected can help nurses to understand how their past forms their identity and will inform the course of their dementia. Talking to members of the family also helps. Clarke (1999) calls this 'the ties of interdependency' and urges health and social care workers to respect them, enhancing their partnership with the family.

Conclusion
My own experience and recent studies suggest that, perhaps because of the nature of the illness, people with early symptoms of dementia tend to be overlooked or ignored by health and care services until a crisis arises. Even after an early diagnosis of dementia they are seldom referred to a GP and those being visited by a doctor, nurse or other professional carer in connection with some other medical condition often remain undiagnosed or are not offered help.

As district nurses we need to look at ways of incorporating these people into our caseloads, while GPs need to be encouraged to increase their levels of diagnosis. The model applied to patients with terminal cancer could be adapted to meet the needs of this client group.

The disclosure of a diagnosis of dementia should be sensitively timed and planned, and accompanied by support and practical help. At this point the district nurse should be involved.

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