Issues in Education, Service Development, and Research: The Diagnosis and Management of Dementia in Primary Care
Rait, Greta, Walters, Kate, Iliffe, Steve, Generations
Dementia increases in prevalence as a population ages (Hofman et al., 1991) and is a progressive disease process that affects the person with dementia, the person's caregivers, the wider community, and healthcare and social service providers in a variety of ways, challenging the abilities of family physicians and community nurses to understand, empathize, and intervene. The disease is often insidious in onset and difficult to diagnose in the early stages, making it a double challenge to primary-care workers.
Recent therapeutic advances in medication that may ameliorate the course of Alzheimer's disease have renewed calls to improve detection and management of people with dementia. Early diagnosis is imperative because it allows for individuals and caregivers to be informed, to be introduced to appropriate agencies and support networks, and in some situations to consider medication use. For caregivers, support services remain crucial, for there is tangible evidence that they can relieve the disabling psychological distress that caregivers may experience (Levin, Sinclair, and Gorbach, 1989), and there is some evidence that knowledge of the availability of medical and psychosocial support may even improve morale without the support actually being called upon (Briggs, 1993).
The focus of such efforts at earlier diagnosis must be on primary care, which is the first point of contact for most individuals and their caregivers in Britain, as well as the gateway to other health, social, and support services in the United States. The task of early diagnosis is a large one. After years of therapeutic nihilism, dementia remains underdetected and inadequately managed (O'Connor et al., 1988). For example, in nine general practices in one community study in north London, only 18 percent of those aged 75 and over and found to have scores on the Mini Mental Status Examination, a cognitive screen suggesting possible or probable dementia, had a diagnosis of dementia, or anything suggesting cognitive impairment, in their medical records (Iliffe et al., 19go).
Such evidence of underdiagnosis and inadequate management (Downs, 1996) is as widespread in Britain, with its well-developed, free primary-care system, as it is in other countries where primary care has less of a foothold (Haley, Clair, and Saulsberry, 1992; Haug, igg.+). The majority of respondents to a national survey of British general practitioners said they felt inadequately trained in the diagnosis and management of dementia (Alzheimer's Disease Society, 1995a). In fact, this gap in knowledge and skills appears to be an international phenomenon.
Why is dementia so poorly understood and so often poorly managed in the community? There appears to be a large number of factors, related to medical science and to practice, includ ing the following:
* A focus in the scientific literature (particularly in systematic reviews) on prescribing and preventive medicine and on certain chronic diseases (for example, asthma and diabetes) rather than dementia.
* The relative neglect of research on health and illness in older people and the research bias toward physical rather than mental health issues.
* The complexity of dementia as a psychological and biological disorder
* The absence of "certainty factors" like diagnostic tests or monitoring measures equivalent to blood pressure or blood tests.
* The limited nature of professional training in disorders of later life in the current generation of family physicians.
* The limited qualitative research evidence available about barriers to considering, diagnosing, and treating dementia.
This paper aims to explore some of these issues and to suggest some ways in which obstacles to optimal management of dementia in the community could be overcome, both through research into best educational practice and through the development of evidencebased services.
BARRIERS To ARS TO ASSESSMENT AND MANAGEMENT IN PRIMARY CARE
Three types of factors appear to operate to make dementia diagnosis and management problematic in primary care -patient and caregiver problems, limited perspectives among family physicians, and wider structural problems within healthcare and social services. …