VOL: 97, ISSUE: 44, PAGE NO: 30
Michelle Bryans, MSc, BSc, RMN, is research fellow, centre for social research on dementia, department of applied social science, University of Stirling
Jane Wilcock, MSc, MA, is research fellow, department of primary care and population sciences, University College LondonAlzheimer's disease and other forms of dementia currently affect an estimated 650,000 people in the UK. This figure is expected to rise over the next 20 years to almost one million as the population ages (Alzheimer's Society, 1995).
Alzheimer's disease and other forms of dementia currently affect an estimated 650,000 people in the UK. This figure is expected to rise over the next 20 years to almost one million as the population ages (Alzheimer's Society, 1995).
Dementia is a condition with physical, psychological, social and emotional consequences for both the patient and his or her family. It is a complex condition that requires careful assessment to rule out treatable causes and formulate appropriate diagnostic and management strategies that will optimise care.
There are also wider social and financial implications for health care systems, and for the voluntary and community agencies that offer support to people with dementia and their carers.
The picture is further complicated by the fact that therapeutic interventions for Alzheimer's disease have become available in the past few years. Early diagnosis is essential to gain access to these interventions and people with dementia and their carers may have unrealistically high expectations regarding investigation and treatment.
Increasing demands on the health care system have led to greater consideration of the complexities involved in caring for people with dementia and increased interest in their needs. The extent to which health professionals can respond to these needs has also come under closer scrutiny.
Primary care is often the first point of contact for people with dementia. The primary care team has an integral role to play in the diagnosis of dementia and the provision of ongoing support for patients and their carers (Downs, 1996). But health care professionals may find that early recognition of the condition and subsequent care provision still pose problems.
Difficulties arise from a range of factors, including the low incidence of dementia in general practice, the perception of symptoms by the patient or carer, social and cultural issues, a lack of knowledge among practitioners and few available treatment options (Iliffe, 1997).
Survey data has shown that GPs feel ill prepared for their role in relation to dementia care, with 71% reporting that they have insufficient training in its management and poor awareness of the support services available (Alzheimer's Society, 1995).
Nurses can play a pivotal role in both the earlier diagnosis and appropriate management of dementia. Primary care nurses are ideally placed to help people with dementia and their carers to secure an optimum package of care that reduces the risk of a crisis being reached before adequate health and social support systems are in place.
Since the introduction in 1991 of annual health screening for people aged 75 and over, practice and community nurses have increasingly taken on this role. This provides them with an ideal opportunity to carry out formal cognitive assessment, highlight impairment, discuss concerns with other members of the team and help to formulate possible management strategies that will alleviate difficulties and distress for the patient and his or her carer.
When a person with dementia is living at home, these nurses are often more aware of the support networks available and the care services on offer than the patient's GP. And for those who rarely come to the surgery, they can provide a link between the practice and the patient. They may also have an integral role to play in maintaining channels of communication with other professionals involved in the provision of care and treatment, such as community psychiatric nurses, social workers and voluntary agency staff.
However, survey data shows that, like their GP colleagues, nurses feel insufficiently prepared to provide this level of service. In a survey of primary care nurses in Gloucester, Avon and Somerset, nurses in 209 practices were asked about their practice in relation to the detection and management of dementia as part of the annual over-75 health check (Trickey et al, 2000). Only one-fifth of the respondents used formal cognitive testing as part of their assessment.
During the survey, the researchers described hypothetical situations in which a patient showed various symptoms associated with dementia and asked the nurses what they would do next. About 10% of the respondents said they would take no action at all if they suspected dementia. A further 25% said they would refer the patient to another professional but would have no further input as they saw the situation as being outside their remit. The rest gave conflicting responses on which tasks were part of their remit.
The study concluded that primary health care nurses would benefit from improved training in this area and that this could lead to improved access to services for people with dementia and their carers.
Appropriate levels of support
Late diagnosis, insufficient management strategies and inappropriate or late referral to support organisations mean that people with dementia and their families may receive help only when they reach a crisis. At this stage help is often reactive rather than proactive.
Lack of support for carers can result in them becoming increasingly dissatisfied. Primary care professionals also need to be aware that carers report higher levels of depression than the general population (Gallagher et al, 1989) and that caring is known to affect many aspects of social and family life, as well as affecting carers' health (Vedhara et al, 1999).
Carer stress can also have an adverse effect on the behavioural symptoms presented by the person with dementia (Jones and Peters, 1992). Support for carers is therefore necessary for the well-being of the person with dementia as well as carers.
The late identification of symptoms of cognitive impairment in older people can result in them being excluded from receiving the treatments available for such impairments. It may also lead to the exclusion of certain treatment options if the person has Alzheimer's disease, such as cognitive enhancers.
Late diagnosis can therefore rob people with dementia of the right to make decisions about their treatment. It can also rob them of time in which to come to terms with their diagnosis and make any social, financial and medical decisions that they feel are necessary while they are still able to do so. It is therefore imperative that primary care professionals are able to respond rapidly, confidently and appropriately to early signs of cognitive impairment.
One method of imparting knowledge in this area has been the formulation of best practice guidelines. However, guidelines on the diagnosis and management of dementia do not provide professionals with the range of skills necessary to manage the complex problems that the condition presents.
Evidence-based guidelines for the management of dementia in primary care have been produced by the University of Newcastle upon Tyne's centre for health services research and department of primary care (North of England Evidence Based Guideline Development Project, 1998). However, they appear to have had little impact on practice. It seems that trying to fill the gap in knowledge by providing guidelines does not necessarily result in them being applied to clinical practice.
Work is needed to identify the barriers to their implementation, which could include lack of awareness of the guidelines, unwillingness to accept the diagnosis and management of dementia as part of the primary care role, and reluctance to provide a 'heartsink' diagnosis - one in which the treatment options are seen as limited.
Both primary care nurses and GPs have cited inadequate professional training as one of the main factors influencing their ability to provide an optimal service to people with dementia (Iliffe, 1997; Alzheimer's Society, 1995). However, it is not known what method of training would equip them with the right range of knowledge and skills.
One current research study, funded by the Alzheimer's Society and led by Professor Murna Downs (University of Bradford) and Dr Steve Iliffe (University College London), is addressing this question. Their randomised controlled trial aims to evaluate three methods of educational intervention to identify which is most useful in enabling practitioners to develop an increased repertoire of skills in the diagnosis and management of dementia. The impact of training on the care provided to people with dementia and their families is being measured through interviews with carers and professionals and the examination of medical records. This three-year study is due to be completed next summer.
Nurses have a major role to play in the early identification of dementia and the formulation of management strategies for patients and their carers. If they are to carry out this role effectively, they need training to provide them with a wide range of skills and knowledge. This will increase their awareness of the implications of the early identification of dementia and the negative impact that poor management and support can have on people with dementia and their carers.