Over nearly the whole of human history, and still today in most parts of the world, intellectual disability in the elderly has not been viewed as not a serious problem. Quite simply, virtually everybody my age (probably 68 by the time this gets published) would be dead. The occasional old granny cackling to herself in a corner could easily be coped with by a village-sized community consisting mainly of young people. The most extraordinary anomaly in modern developed societies, as distinct from all the rest of humanity, is really the high proportion of people of my age and upwards who are still reasonably fit and mentally active (Guha, Reference Guha2007). Among us, however, are a number who are not fully mentally fit, ranging from those of us who are mildly forgetful or slightly eccentric, to those who really are, as Shakespeare puts it, “sans everything.”
It is unfortunate that those societies with the highest proportion of elderly people are those in which traditional social structures have most completely disappeared. The “normal” human pattern is for children to live with their parents up to the point where the parents lived with their children. I was taught at school, for example, that in classical Rome the paterfamilias had full legal authority over his sons, up to decisions on life or death, even after they were married. This startling fact has been tempered by the calculation that the average male age of marriage in the late republic was 25, while the average male life expectancy was 45, so few sons actually ended up in this invidious position. In modern developed societies, a very high proportion of elderly people do not live with, or even near, their children. If they need care or company it has to be given by spouses, by intermittent visitors, or it has to be arranged for them.
Awareness of this growing problem has gradually spread among the general public over the last few years. As a result, a sizeable literature of advice and exhortation has grown up. Twenty-five years ago I would have been hard put to it if asked to recommend a guide to looking after elderly people with dementia, suitable for spouses, children, and other unqualified or semi-professional caregivers. Now there is a vast array of relevant literature, supplemented by any number of DVDs, specialized networking online services, and targeted websites. My successors in the Institute of Psychiatry library must be equally hard put to it, in choosing which of so many to recommend. All I can do is dip a bucket into this sea of literature and examine a few representative samples.
Aging Together was jointly written by a pastor and psychologist couple who are, I guess, a year or two younger than me. They try to present a view of friendship that is not based on reciprocity or shared memories, leading ultimately to the question whether it is possible to be a friend of someone who does not remember from one moment to the next. The discussions comparing Aristotle's view of friendship in the Nicomachean Ethics with modern social science research might be a bit heavy going for some general readers, but the final sections on ways of developing hospitality-based communities in an increasingly fragmented society will strike a chord. This is not a how-to handbook but a kindly and perhaps over-optimistic general discussion that will be of interest to caregivers, particularly Americans, and particularly those coming from a religious background. The rest of us can all gain something from it too, however.
Laura Wayman is the dementia expert for Seniors First, a non-profit-making organization that helps elderly people live independently, and is head of the Dementia Whisperers, a training organization for carers. A Loving Approach to Dementia Care is designed to help caregivers develop meaningful relationships with their charges. It is studded with vignettes describing occasions when a brief moment of understanding allowed some form of real happy communication. What it does not do, of course, and perhaps what no book can do, is describe the countless tedious hours of frustration (for both parties) when no such communication is achievable. There is always a risk that those brief flashes of communication will merely add to the infuriating feeling that “she really is in there somewhere” and could interact if she really tried. This book can be warmly recommended to caregivers as an upbeat and encouraging guide to developing those brief moments of successful communication, as long as caregivers accept that, for most of the time, it would not be like that at all.
Both A Loving Approach to Dementia Care and Aging Together are very kindly books giving warm guidance on coping with old people who are seriously confused. Unfortunately, people with dementia are all too often more than just confused. Challenging behavior can include, for example, urinating in public, masturbation ditto, violence (towards self or others), swearing, screaming, and, most commonly, persistent attempts to escape from safe areas. Understanding Behaviour in Dementia that Challenges comes from Jessica Kingsley, a prolific publisher of mental health-related books. It contains a succinct chapter on the use of psychotropic medication to control such behaviors, but the primary focus is on non-pharmacological approaches, using examples and cases from the author's work at the Newcastle Challenging Behaviour Service. The descriptions of the ways in which care home staff, family members, and patients themselves are brought together to bring about more acceptable behavior are sensible, and the case studies seem convincing. The section on the ethics of lying to confused people is needed – the first two books merely take doing so for granted. What frightens me is the clear conclusion that “. . . relatively small caseloads and regular supervision are essential . . ..” In a time of rapid economic decline in those societies with the highest proportion of old people, it seems likely that coping with us is increasingly going to have to be done by inadequately supervised staff with large caseloads.
The first three books all focus on treating old people. It has to be accepted, however, that younger people can have dementia, even, as Coping with Early Onset Dementia points out, at a time when they have dependent children. Dementia is more likely to be misdiagnosed in the young, and can be more aggressive than in old people. Coping with Early Onset Dementia comes from an even more prolific publisher: Sheldon Press; Overcoming Common Problems series must run into hundreds of volumes by now. Small cheap paperbacks by clinicians practiced in the difficult art of explaining diseases and treatments in ways that will be comprehensible to the general reader, preserve a uniformly upbeat approach even in the depressing topic of diagnosing, treating, getting help for, and involving family members in coping with such a distressing disorder. Some of the British National Health Service information and the list of helpful addresses and contacts would be less useful to readers in other countries, but by and large this is a book which clinicians can be recommended to suggest to afflicted families as a source of clear, kindly, and comprehensible background reading.
All these books can, in fact, be warmly recommended. Aging Together reminds us that warmth and friendship can be maintained in trying situations. A Loving Approach to Dementia Care is exactly what it says on the label. Understanding Behaviour in Dementia that Challenges gives careful guidance on coping with difficult behaviors, and Coping with Early Onset Dementia gives sensible advice to cruelly afflicted families. Judging by this sample, the general literature on dementia is in very good health – if only the practice matched the National Dementia Strategy (Department of Health, 2009); if only we could all look forward to kind and caring treatment of the sort outlined in these books.