Many studies about health and social services provide a snapshot based on research at one point in time. This one is different because it charts the changing circumstances among a group of older people over a period of 18 months. This approach seems especially relevant given the progressive nature of dementia. The study covers 141 older people with dementia who were referred to three social services departments in England between November 1994 and the end of February 1995. Interviews were held with the old person and/or their carers in two separate phases approximately a year apart. Quotes and examples are used to illustrate individual circumstance and views.
In an age where everything strives to be evidence based, the authors go to some length describing their attempts to produce findings that will be applicable to other localities. The early sections contain much detail about method, and cross-references to other studies, which will be of interest to others undertaking similar work.
At referral almost all the older people were living at home; 18 months later less than a third were still doing so. The study aims to identify the causes of this change and the impact of service provision and circumstances at home. The role of carers, particularly those who are coresident, is highlighted throughout the study. Older people with mild or moderate dementia were half as likely to enter long-term care if they had a spouse or daughter as their carer compared to those who had no carer or a carer of a different relationship.
The importance of daycare and homecare in keeping people in their own homes is considered. One chapter is devoted to the costs in each locality of the various types of care provided. A very thorough approach is taken to a subject that is notoriously difficult to analyse for comparative purposes.
Positive findings include the fact that most care packages were appropriate and did not break down. Eighty per cent of people were assessed within a month of referral and 75 per cent of carers were given precise dates and times when assessment would take place.
There is a clear message that dementia is not a barrier to patients commenting on services, and those wishing to develop services for this group should take this to heart.
The lack of home-based care providing opportunities for social interaction is highlighted, as is the scarcity of short-term breaks. The value of voluntary organisations is also underlined and the need to increase awareness of their services. The study was undertaken as part of a programme to evaluate the impact of the NHS and Community Care Act 1990, while the act may seem slightly distant now, the issues are very current.
Margaret Edwards Project manager for primary care goups and older people, King's Fund.