By Lucy Whitman (Editor)1 Jessica Kingsley, 2009 Review by Christian Perring on Jan 12th 2010
Dementia is a growing problem in the western world as the population ages and more people suffer from degenerative diseases like Alzheimer's or have many mini-strokes. In the UK, as in many other countries, there has been historical neglect of the problem of dementia by the health services and in a country with a national health system, dementia patients still need to pay for their own care when they are no longer able to live independently. Yet there is increasing awareness of the problem of dementia in both the health services and the general public, so this is a good time for Telling Tales about Dementia.
Lucy Whitman has collected 30 people's reflections on having a close friend or relative with dementia and their experience of looking after them and advocating for them with medical professionals. There are two main sections, "Living with Loss," and "Dispatches from the Battlefield." There's a third short section with just 3 contributions, titled "Keeping in Touch, Letting Go." Then there some introductory sections and appendices, with some useful information. Sometimes the writing in the descriptions of caring is by those who did the caring, and in some cases it is a transcription of what they said in discussion with Whitman. One piece is in the form of a poem. The tales are from people from a variety of backgrounds, with several by same-sex partners or close friends of the patients. Many of the tales are accompanied by photographs of the people with dementia, sometimes with their caregivers, and this helps us to see them as whole people, because you can't see the dementia in the pictures.
The chapters together show how difficult it is to care for a person with dementia, and often how difficult it is to have dementia. There are several reasons for this. First, there is the emotional cost of people fading from view, and only being their recognizable selves a few times a day. As they decline in ability, they require more and more help, and they may not cooperate with getting that help. The old character may be visible only a few times a day, and it can be emotionally hard dealing with a person one hardly recognizes any more. Then there are the many difficulties in dealing with the professional health providers who, even when they are trying hard to be helpful, often do not succeed. In some cases, respecting the patient's rights leads to much worse health care because it leads to patients who are not competent being able to refuse treatment. In other cases, discrimination that is common in society against some groups such as gay and lesbian people may be duplicated in health care settings.
There is a wealth of experience recorded here, and different readers will take away different lessons. One common theme is the search for people to look after person with dementia on a daily basis if they stay at home. For example, both Maria Jastrzebska's parents were from Poland, and so when they got dementia the family brought in Polish carers to live in. She repeats the remark of a friend who said that "if all the Poles in Britain were to leave, the care system would collapse and social services would not be able to cope with the ensuing demands" (29). Some spouses or children end up doing most of the daily care themselves, while others decide that they are simply emotionally and physically unable to face the prospect of such work.
Another theme is the emotional drain of caring for people with dementia. As they lose their memories, it becomes more difficult to motivate oneself to devote energy to doing more than what is necessary, and it is difficult for some to stop being impatient when answering the same question for the hundredth time or responding to fears that have no basis in reality. When dementia gets so severe that the patient no longer recognizes family members, they start to wonder what the point is of visiting. Memory is essential to our identity and our ongoing projects, and without memory, much interaction becomes pointless. Yet in many of the tales in this book, carers talk about seeing occasional flashes of memory or sanity where they recognize the person they used to know. Others talk about the importance of the present moment -- even if it will make no difference for the future, it can be enough to provide company and love to their loved one at particular time.
Related to this is the issue of uncertainty. We don't know how quickly the demented person will slip into total amnesia, or what other medical problems will befall them. But more confusing than that is the variability of the decline. Dementia does not affect all memories and skills uniformly, and the decline is not uniformly downhill. People retain some abilities and memories longer than others, and they have good days and bad days. Indeed, they have good minutes and bad minutes in the same hour. Oliver Sacks has written about how some patients who have lost most verbal abilities can retain the ability to sing and may be animated by music. The tales in the book also show how important context is for memory, and how when a person with dementia moves to unfamiliar surroundings, they can go into steep decline. This is especially common with hospitalizations. When the demented person goes into such a decline, there's always uncertainty whether it is temporary and will be reversed when they get back to their familiar surroundings, or whether it is permanent.
The book does have some gaps. One main one is to do with the financing of care. There's little attention paid to how much difference money makes, or what forms of financial help are available. The authors don't focus on this in their description of their experience, yet it probably makes a big difference to the quality of life of both the demented person and their families. Those in long term residential care will probably have to use all their savings and sell their property in order to pay for it.
Then there is the issue of what kind of caring help families can get. Most people mention particular forms of help that they got; for example, many say that the Admiral Nurse service is excellent, but they don't explain what it is. Other talk about volunteers and other services, but there's nothing systematic. So the book is much more about the subjective experience of caring than a guide to how to actually do it. There are lists at the end of the book about where in the UK people can get further information.
What I personally take away from Telling Tales about Dementia is how sometimes the health services can be enormously helpful and how in other cases families suffer terrible treatment, with wrong diagnoses, uninformed doctors, and insufficient care options. In some cases the only way that families get what they need is by filing official complaints about the doctors. Although there's no way to tell how representative the experiences of the writers are, if the book is any indication of how it is for most people in the UK, then battling with the health system is frequently necessary. When the resources of family members are stretched thin as it is because they are trying to cope with the dementia of their loved one, it is especially frustrating and draining to at the same time fight against the medical institution in order to get the support the person with dementia needs.
While this book is based on people in the UK, it is likely that families in other countries will have similar experiences. It is often sad and even depressing, but it also has important insights and reflections on events that will be meaningful for many readers.