Extract from Openmind 132 Mar/Apr 2005 'Improving quality of life'

Sube Banerjee on psychiatric services for people with dementia

Dementia is one of the most common and devastating of conditions of later life. In the UK, dementia affects 500,000 people at any one time, with 200,000 new cases every year. It causes irreversible decline in global intellectual and physical functioning. And its negative impacts on people with dementia and their family carers, on services and society are immense. Current service provision fails the majority of people with dementia, with only 15–20 per cent ever having specialist assessment. It does not appear that the needs of the other 80 per cent are adequately met.

All over the country, old age psychiatric services are a triumph of effective activity and delivery of care over neglect by others and a failure to fund service development. Old age psychiatry has been an (often unsung) pioneer in true multidisciplinary working and high-quality community psychiatry. An example is home assessment and treatment. As a discipline, old age psychiatry has defined itself from the first as having a primary community focus, insisting on the importance of home-based assessment and care. Unlike many principles, these appear to be the reality of clinical practice, with nine out of ten referrals seen at home rather than in outpatient clinics.

The National Service Framework for Older People (NSFOP) sets out a national set of standards in a blueprint to improve the quality of care provided to older adults and to end age discrimination in the NHS. It has eight standards, one of which is mental health in older people. The service specifications it contains require the early identification and treatment of older people with dementia, and endorse the use of anti-dementia medication. The main criticisms of the NSFOP are the lack of any ringfenced funding for service development and the absence of performance indicators requiring primary care trusts to make further investment in old age psychiatric services. Predictably, they have not.

One major strength in old age psychiatric service delivery is the committed and skilled multidisciplinary workforce. Team members have had to embrace an ability to improvise and work with other local services in order to provide care in an environment of increasing need but with no corresponding increase in resources. This has led to a willingness to experiment and change. Allied to that has been the growth of a strong and effective user and carer movement for dementia. There is much that is negative that might be said about Ronald Regan as a president of the United States. However, it is difficult to overestimate the positive contribution made by the brave decision taken by him and his family to admit to his having Alzheimer’s. This individual testimony, along with the growth of the Alzheimer’s societies, has influenced not only public attitudes and understanding of dementia but, in the United States at least, has also led to massive government investment in research and (to a lesser extent) in service delivery.

We may be in the unusual situation of experiencing a reduction in the stigma associated with a mental disorder. The stigma against dementia has been as real within medicine as in the community, and this is reflected in the traditionally low status applied to old age psychiatry within psychiatry and, more broadly, within medicine. A sign that there is a real change with respect to dementia within medicine may be the increasing interest of neurologists in dementia after more than a century of studious disinterest.

The biological advances in understanding aetiology in dementia are being rapidly transformed into therapeutic approaches as diverse as disease modifying medication, immunisation and stem cell therapy. The rate of change in understanding and action in this area is stunning. In service terms, we need to gear ourselves up to identify cases early where there is already the possibility of prevention of future harm; for example, in terms of crises, institutionalisation, depression, carer burden, loss of function and, possibly, further cognitive decline. The next generation of diseasemodifying compounds will further challenge us to identify and intervene in presymptomatic states, as well as those affected by dementia.

Services must develop to meet local needs and will need to build on local strengths. Our goal must be to improve the quality of life for older people with mental health problems and their carers. And we can only do this by improving the quality of care we provide. If we are to succeed, this means working in a true partnership with social care, primary care, user and carer groups, and patients and carers themselves. We live in interesting times.