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Care homes and dementia

This issue contains four empirical studies and two reviews of topics in long-term residential care. There is a natural emphasis on dementia, which afflicts the majority of residents in most countries, and its complications. The problems inherent in the definition of ‘‘behavioural and psychological symptoms of dementia (BPSD)’’ are apparent inTurner’s careful review of non-pharmacological intervention efficacy studies (Turner et al., 2005). At great cost, the International Psychogeriatric Association produced a consensus definition ‘‘symptoms of disturbed perception, thought content, mood or behavior that frequently occur in patients with dementia’’ (Finkel et al., 1996) which hinges on the meaning of ‘‘disturbance’’. Its dictionary definition is ‘interference with normal arrangements or functioning’ or ‘breakdown of peaceful and law-abiding behaviour’ Does this mean that before BPSD or signs of dementia emerge we live in a state of changeless perception, thought content, mood and behaviour? Clearly such ‘‘disturbance’’ takes place in the setting of lifelong changechange which merely accelerates while dementia progresses, propelled, as ever, by many different forces and events within and outside the person. Can there be interventions which we can turn to randomised controlled trials to assess, even if we avoid all the errors and weaknesses that Turner cites? She is surely right to reject this in the case of non-pharmacological interventions, but the essential weakness of BPSD as a conceptual definition corrupts even the assessment of psychotropic medication in dementia. Two papers are directly or indirectly concerned with the interesting role of family carers in care homes. It is normal for researchers to have difficulty in involving the relatives of a person with dementia in a care home, but we have also recently found exactly the same problem in attempts to involve relatives in the improvement of care itself. Train et al. (2005) report an intensive, qualitative approach in a carerinitiated study with residents, family and staff from care homes and long-stay wards over a wide area, and managed to get information from 17 relatives. They found that continued distress about the person with dementia’s plight was common, and this may explain why others may not be easily involved; of course we do not hear from those who are not involved. What might be done to encourage them is covered in Gaugler’s major review (2005) of mainly North American studies of family involvement in care homes, in the form of visiting, assistance with care (and not only its psychosocial and identitypreserving aspects but also basics like feeding). Advocacy is scarcely mentioned. From the few large scale studies it seems that it is certainly feasible to stimulate more involvement and that studies suggest benefit, for relatives and staff, but the outcomes for the residents of remain unknown. The cautious nature of academe is illustrated in two of the other papers in this issue. Given an Americano-European cultural hegemony there are intuitive reasons for equating activity and happiness or quality of life, and many suppose that increasing meaningful activities will be life-enhancing or at least preventative. A progression of studies from observational, cohort and RCT studies would seem logical. The former is represented in this issue by a useful study by Arvaniti et al. (2005) comparing the relatively mildly impaired residents of a care home with non-residents in a Greek community, and also by an ambitious project by Gerritsen and colleagues who try to distinguish and then correlate apathy, depression and quality of life in a larger group of residents, with the aim of preparing for efficacy studies of interventions to reduce apathy (2005). Their central finding is puzzling: the correlation between their apathy measure and apparent quality of life flips from the expected negative direction to a positive one as analysis moves from the less to the more cognitively impaired residents. If in more impaired residents apathy is a good thing, then presumably apathy interventions like that described by Schreiner et al. (2005) in the very impaired residents in their cohort study should be a bad thing. However, the means by which Gerritsen et al. determine apathy and quality of life in the more