Are the Keys in the Freezer? An Advocate’s Guide for Alzheimer’s and Other Dementias.
Patricia Woodell, Brenda Niblock and Jeri Warner. 2014.
London: Jessica Kingsley.
Reviewed by Malcolm Wallis, DementiaSA
This book sets out to provide practical guidance, not just for advocacy purposes but also to assist families and carers confronted by people living with dementia. The three authors are based in the USA. They are sisters and daughters of a mother with a familiar story: very active in all sorts of ways, as a mother, a member of her community, and a keen artist but diagnosed with dementia in her early 80s. After she passed away at the age of 88, the daughters decided to write a book based on their experience of observing and helping their mother. Between them, they have experience of working in the health sector, in the USA public service and in education. It is evident that the book has benefitted from many insights derived from their professional backgrounds.
The recurring themes are how little they knew about dementia at the beginning, the lessons learnt and the extent to which they believe their experience can benefit other people faced with similar predicaments. There, are, for example, quite detailed accounts of how they dealt with two of the main issues dementia requires us to think about: where was the best place for the mother to stay once it was clear that she could not remain at home, and how to deal with a mass of legal and financial matters once it became clear that she would not be able to cope with, for example, managing a bank account. The emphasis all along is on the practicalities with rather less on the medical issues (although of course all these factors are closely related to one another).
The book has some clear strengths. It is a readable account of lived experience. Its focus on practicalities is very welcome, especially the lesson learnt sections which are often about what the sisters would have done differently had they known what they know now. For example, there is much discussion about ‘advance directives’ with a balanced review of the complexities involved. An example of their approach is this quote from page 141: ‘We regret that we didn’t understand the purpose and the powers of advance directives earlier. We should have discussed them with our mother before her dementia worsened’.
The book includes some very helpful appendices on topics like cognitive tests and changing technologies (this may be rather out of date, much having happened since the book was published). There is a list of resources including publications which readers may find helpful.
This is a useful book which rewards reading but it is essential to note that it inevitably has much to say about facilities, legalities and social conditions in the USA, not all of which has direct relevance for South Africa where many of the issues are different, such as legal frameworks (the USA is a much more decentralized system than South Africa’s), and South Africa’s inequalities are greater than in the USA. This country has quite good provision for dementia care for those who can afford it, but most of the people are excluded from access by poverty. In recommending this book, I am very aware that we need a similar publication geared to this country’s circumstances.
The book is obtainable from DementiaSA. It is priced at R340.
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