Morir amando y perdonando

Early and accurate diagnosis of dementia is very important because it can help to identify treatable causes of dementia (e.g. nutritional deficiency) and help to distinguish dementia from other illnesses, such as depression, which can

masquerade as dementia. Early diagnosis also allows the person with dementia and their carer to be linked with appropriate services and supports from the outset. It also allows the opportunity to inform the person of the nature of the condition and facilitates family decision-making with respect to future care plans (Brodaty, 1988).

While there are arguments for and against telling people in the early stages of dementia their diagnosis (Drickamer and Lachs, 1992), we believe that it is important psychologically for the person with dementia and their carer to be able to put a name on what is happening to them. In line with the practice in other areas, and for other conditions, people have a right to know what is the matter with them (Rice and Warner, 1994) and to be given the opportunity to participate, where appropriate, in decision-making with respect to the treatment of their condition. Dementia loses part of its threat if you can name, describe and understand it. Early diagnosis is also of great value to the carer, bringing with it the potential for increased understanding and tolerance (Schofield et al, 1998). An early diagnosis is, of course, of little benefit to those affected by the disease if the appropriate community-based services are not available from the outset. Therefore, early diagnosis must be complemented by the provision of additional resources for community care, including information and counselling services to support people who have been diagnosed with dementia, and their families. Counselling needs to be available throughout the course of the illness and both patients and carers require ongoing advice and support.

1. We recommend that clinical standards and competencies for early diagnosis of dementia should be developed and that people with dementia should be informed of their condition at the earliest possible moment unless there are strong medical or social reasons for withholding such information.

The general practitioner is best positioned to detect dementia in its early stages. However, family doctors vary widely in terms of their capacity and commitment to identifying dementing patients. While primary care guidelines exist for the detection of dementia in Ireland the likelihood is that these guidelines are rarely used by GPs. There is a perception that GPs are not always comfortable dealing with social, cognitive and behavioural problems. Sometimes, GPs are reluctant to label someone with the diagnosis of dementia within the local community because of the negative attitudes and stigma associated with this disease. Uncertainty about who to refer to and what services are available may also make the GP reluctant to make a diagnosis. It has also been suggested to us that younger patients with dementia may be picked up earlier and referred on to secondary care faster than older patients. Personalised and innovative education programmes are necessary to ensure that general practitioners understand the need for standardised cognitive testing in this area (Cheok et al, 1997).

Communication between GPs and other community-based professionals also needs to be improved, particularly with respect to the assessment and

management of the psychosocial aspects of dementia.

In summary, general practitioners need to have knowledge of the assessment process, knowledge about dementia itself, an awareness of carer stress, a route to sources of help and knowledge of reasons for seeking specialist assessment (Iliffe, 1994)

Inevitably, future developments in the drugs market will place GPs under

increasing pressure to screen and diagnose dementia at an early stage so that the possible benefits of new drugs can be realised. In that context, it is important to monitor prescribing patterns very carefully to ensure that anti-dementia drugs are prescribed as one part of a holistic approach to supporting people with dementia and their carers. On the other hand, the trend towards increased prescribing is likely to be countered by pressure from the indicative drug prescribing initiative, which rewards GPs for not prescribing anti-dementia medications. We need to be equally careful in this instance to ensure that people get the drugs they need at the appropriate time.

2. We recommend that information and training should be provided to general practitioners to facilitate and encourage the early diagnosis of

dementia through opportunistic or targeted assessment using tools sensitive to the detection of dementia in primary care.

The public health nurse also has a critical role in early diagnosis because of her regular contact with potentially at-risk elderly populations. Routine screening for dementia is not, however, occurring in any coherent or uniform manner across the country. The public health nurse service is already over-stretched dealing with the general health care needs of both children and general elderly populations. The time and opportunity to undertake additional screening programmes for dementia does not exist. In addition, public health nurse

training is geared towards generalist nursing care which makes it more difficult for them to identify people suffering from dementia, let alone deal with their particular needs. In general, screening for dementia needs to be proactive and community-based, rather than in secondary or tertiary referral centres (Seymour

et al, 1994). For this to happen, community nursing will have to receive more

resources, together with dementia-specific training for nurses in order for them to identify the symptoms of dementia in elderly populations. It is also

important to develop greater collaboration between GPs and community nurses in both the assessment and care of people with dementia.

3. We recommend that public health nurses should receive training in dementia assessment and be given more resources to work with in order to make identification worthwhile.

In the past two decades there has been wider appreciation of the way dementia, and, in particular, Alzheimer’s disease affects the brain, and there is now much less stigma associated with mental health problems of all types. There remains, however, a good deal of ignorance and fear with respect to dementia. Voluntary organisations, such as the Alzheimer Society of Ireland, play a critical role in raising community awareness about dementia, helping to combat negative feelings about the disease. Awareness among the public makes the disease more acceptable and helps to foster positive attitudes towards the care of people with dementia. This, in turn, can help to encourage those experiencing the early signs of dementia to come forward for examination and diagnosis. Awareness of the disease can also be increased through public education campaigns designed to change attitudes and confront ignorance about the disease. Awareness can be fostered through the use of information technology in public spaces. For

spaces can provide general information on the disease, thereby providing an important and accessible service to the public.

One of the goals of the recent healthy ageing strategy, Adding years to life and

life to years (National Council on Ageing and Older people, 1998), is to reduce

the prevalence and severity of mental health illness in older people. Greater awareness of mental health issues is an important part of the strategy for the effective treatment of people with mental health problems. More awareness facilitates prevention and the early diagnosis of problems. Unfortunately, it is not possible to talk about primary prevention for the vast majority of disorders associated with dementia. However, primary prevention is possible for

symptomatic dementias and involves the early detection and treatment of those physical illnesses or other psychiatric disorders that produce a dementia type syndrome (Keogh and Roche, 1996). For example, continuing improvement in the treatment and control of hypertension in older people will reduce the risk of dementia associated with stroke. For people with dementia, the availability of a good level of general medical care, allied to improved personal and social

environments for the person, can influence the progression of the disorder. Health promotion is also important for carers, given the level of stress sometimes associated with the caring role. Information, training, and

networking are important for carers in combating isolation and loneliness and in creating awareness of the nature of dementia and the effect it is likely to have on the carer. Public acknowledgement of the key role played by carers in the caring process may also be part of an effective health promotion strategy for carers.

4. We recommend the launch of a public information campaign designed to

raise awareness of dementia among the general public.