Mastering Approaches to Diversity in Social Work.

Linda Gast and Anne Patmore. 2012.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This book is part of a series (Mastering Social Work Skills). It has little to say about dementia which does not even merit a listing in the index. But it addresses an important concern: how should social workers cope with the diversity they encounter in the environment where they exercise their skills and carry the burden of heavy responsibilities. The book is largely based on the UK but the issues discussed are not totally at odds with the South African situation. For example, the authors see ethnicity as a major factor in many settings. As such it cannot be ignored either in theory or practice. However, we must avoid assuming that ethnicity is the sole form of diversity. Gender, sexual preference and disability, for example, cannot be left on one side. The book draws on important research conducted in a number of countries. The major contribution of Hofstede who wrote extensively on culture is given particular attention.

What I found particularly valuable is the authors’ device of posing key questions (‘points to consider’) for readers to discuss and reflect upon. There are also many case studies based on experience which struck me as likely to interest readers. For example, there are case studies about disabled service users and writing reports on difficulties experienced in families. This approach makes for a substantially more inter active text, an approach that might be usefully adopted for study in a number of fields.

Despite the absence of dementia as a topic, the book may be useful in social work, a field of endeavour which very often requires an understanding of diversity, an important aspect of which is dementia.

The book is obtainable from DementiaSA. It is priced at 280.00

woodell

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.

If you would like to know more about the books, videos and any dementia related material we have available, please contact our office for more details on 021 421 0077

MACE

The 36- Hour Day.

Nancy L Mace and Peter V. Rabins. 2012.
New York: Grand Central.

Reviewed by Malcolm Wallis, DementiaSA

This book has much to commend it. Originally published in the USA in the 1980s, it has been updated to ensure its continuing relevance. The aim of the authors is to provide what they describe as a ‘family guide’ for those faced with the task of caring for people living with dementias with some emphasis on Alzheimer’s but not exclusively so; substantial reference is made to other dementias. In fact, it is a very detailed account of what dementia is and the roles are played by carers in supporting people suffering from the condition. In a sense it is much more than a guide as it has been highly valued by others whose interest is in understanding dementia for other reasons. For example, it is the kind of book that could greatly help researchers in fields such as general practice, public health, social work and ageing. The last of these examples needs some explanation. Although there are many cases affecting people younger than 60, the vast majority people living with dementia are over that age.

A word is needed about the title. The authors are not trying to revolutionise time by dispensing with the 24 hour clock but they are signalling by using the term 36 hour day the tough nature of the carers’ work which so often is a major test of stamina and stress thresholds, usually with little by way of financial compensation.

There are nineteen chapters plus two appendices (on the use of the internet and on organizations). It is over 600 pages in length so it is not the kind of book that might be read from cover to cover. The present reviewer, I have to confess, opted to read it selectively using the excellent index to see what is said about particular issues. It is best seen as a reference book. It starts with explaining what dementia is, then proceeds to deal with such topics as getting medical help, behaviour, independent living, ‘daily care’ (e.g. hygiene), medical problems such as pain and dizziness, death, getting outside help, the ways carers are themselves affected, family life, financial and legal matters, nursing homes, life style factors which may prevent dementia, related conditions such as head trauma and research. This is a long list but I have included it in this review because it shows that this is a comprehensive guide to the disease. The book also has the merit of being written using plain words where possible to maximise the likelihood of readers being able to understand it. The only reservation I have is that because it is written for an American readershp its usefulness is limited where reference is made to institutional issues such as medical aid and state interventions which are mostly irrelevant to the South Africa case.

The book is strongly recommended as it is a readable and thorough account of Alzheimer’s and related conditions.

The book is available from DementiaSA. The price is R200.

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Key Issues In Evolving Dementia Care: International Theory – based Policy and Practice.

Anthea Innes, Fiona Kelly and Louise McCabe (editors). 2012.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

As its title implies, this book looks at key issues in dementia care. The issues are such that the book has a wide range of topics to cover such as national planning, medication and the development of memory clinics. It is also global in scope in that a number of countries are referred to including very small ones (such as Malta) and very large ones in terms of both area (Australia, Canada) and population ( India). There is quite a lot about the United Kingdom where most of the authors are based but its neighbour, France, is also included. It is therefore not surprising that the authors are from different countries and bring differing perspectives to bear on the issues being looked at. Some are academics while authors are more directly involved in management at various levels.

I found it refreshing that a number of chapters contain case studies to amplify what is being discussed. For example, environmental design in Australia is not just viewed as a tool for the treatment of dementia but also reflects how one individual named Dulcie relates to her surroundings. In the case of India, we read about the issues facing care givers in families which are radically dispersed, where families are divided by some members living in India and others in the USA.

One important feature of the book is that we are given some very relevant information about the policies adopted in the different countries but also about how policies are themselves developed by, for example, the participation of stakeholders. A particularly good example is the chapter on Canada which is written by a senior person in government who was directly involved n policy development.

Another benefit of the book is that it includes a great deal of data about a number of issues, some of it derives from official sources but some is the result of independent research drawing on various journals and other publications.

It was published in 2012 but many of the issues it deals with are current concerns which are even more pressing at this juncture. It is a very important contribution to the literature on dementia.

The book can be obtained from DementiaSA. It is priced at R350.

gosschalk

Z. Alzheimer’s-A Shared Journey.

Bernard Gosschalk. 2009.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This short book is the author’s account of dementia. The ‘Z’ of the title refers to Zelda, his late wife, who died after living with dementia for many years. He also makes reference to his earlier marriage to Ruth who also predeceased him. The author seeks to give a very personal account of this highly difficult experience.

What makes the book different is that it tells a South African story. The author was born in this country but spent much of his life as an academic teaching Architecture at the University of Manchester. However, he spent a lot of time in South Africa where Zelda came from and where she died. This experience means that the book can be more meaningful to South Africans than are other accounts which lack that context. This duality of national experiences has other benefits. In particular, he is not impressed by the performance of the UK National Health Service and other organs of state; he is able to narrate in some detail the bureaucratic morass he encountered. In South Africa, the absence of a national service opens the way for the private sector but only for those who can afford it. There are perhaps some lessons for South Africa in this book, particularly since we have been debating for ten years how best to find a more equitable and effective system through National Health Insurance. I took from my reading of this book that it is important to strive for a more user friendly system than that of the UK which, however, needs to be affordable for both the state and people living with dementia, carers and family.

The book has other merits which can be noted. One is that the story, although briefly told, is infused with Gosschalk’s experience of life in both countries. He gives fond accounts of attending concerts at Manchester’s Free Trade Hall where as a student I saw the Rolling Stones. The author’s tastes are somewhat more highbrow than that. He also has well expressed affection for the beauty of Cape Town and the pleasures of living there.

It might sound like a sad book which on one level it is but it is not gloomy: what comes through strongly is a story of lives well lived despite the tragedies the author endured.

This book is obtainable from DementiaSA. Priced at R95.00

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The Simplicity of Dementia: A guide for family and carers.

Buijssen, H. 2005.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

Although published some time ago, this book which was originally in Dutch, is a useful contribution to the literature on dementia. Don’t be confused by the title. It is by no means a simplistic account and is based on a great deal of reading, experience, professional involvement and reflection. The author has worked at a professional level as a psychologist with a special interest in ageing.

The book has been praised by reviewers in a number of publications. The title arises from his approach which is to avoid jargon where possible (this is in spite of his profession – we are told he is a psychogerontologist). More importantly he is at pains to explain as simply as possible how changes in memory functionality play a role in dementia. The book has the considerable merit of containing numerous quotations from interviews and discussions which were mainly conducted with carers. The book should be of particular interest to carers but also to others concerned at the growing seriousness of dementia throughout the world.

Malcolm Wallis was born in 1945 in Hertfordshire in the UK. His education was partly in that country, including a doctorate from Manchester University. However, most of his primary and high school studies took place in Kenya where his father was employed as a Post Office official.

He has mainly worked in different countries in Africa. He came to South Africa in 1992 where he worked for the former University of Durban-Westville (now part of KwaZulu Natal) as Head of Public Administration. He later became Executive Dean of Management Sciences at the Durban University of Technology. Since retirement from full time employment he has continued to work in various different capacities. His academic work over the years has included developing and teaching in the field of Health Management both in the UK (Birmingham university) and South Africa (the University of KwaZulu Natal).

He became interested in Dementia when his mother was diagnosed with the condition in 2008. She passed away in 2017. When he came to live in Cape Town he was invited to work for DementiaSA as a volunteer where his role is to help build improved awareness of Dementia.

Helen Beaumont 2009. Losing Clive to younger onset dementia – one family’s story. London: Jessica Kingsley.

Review by Malcolm Wallis, DementiaSA.

This is an excellent biography, written by the widow of a victim of younger onset dementia. It traces the life of Clive Beaumont, a British soldier and for most of his life physically very active, who died in his early 50s having experienced dementia for about six years. There are two inter-woven strands, one being the illness and its effects on the family, the other being support including the role of the state and other organisations.

The book describes the couple’s early days together leading up to the confusing and devastating diagnosis of what was termed at the time ‘pre-senile dementia’, a wording now replaced by younger onset dementia, a relatively rare form of the condition, as the author notes, but certainly not negligible. The story is rich in detailed accounts of particular incidents and episodes such as driving, short duration disappearances, confusion over travel plans and communication breakdowns. Particularly touching is the account we are given of the impact on the family (mainly the author and the two young children). The book tells us how, after his condition deteriorated, Clive spent the last part of his life apart from his family in nursing homes and the like.

The role of supporting organisations is critically examined. It takes into account the decisions made by the UK bureaucracy on various matters (e.g. financial and health services) and the importance of non-government sector bodies such as research teams and the Alzheimer’s Society. The author and some of her contacts launched a smaller version of such organisations known as the ‘Clive Project’ after his death. One is impressed by how much of this kind of support is available in the UK (far more than in South Africa), notwithstanding some notable shortcomings such as lack of support for affected children.

This is very much the type of work that we need to see in South Africa. There are plenty of such oral stories that are not being written up, but should be so that awareness can grow in the wider society.

The book is highly recommended.

Remembering Yesterday, Caring Today: Reminiscence in Dementia Care – A Guide to Good Practice (Bradford Dementia Group Good Practice Guides).

P. Schweitzer and E. Bruce. 2008.
London: Jessica Kingsley.

Reviewed by Malcolm Wallis, DementiaSA

This book arises from a project initiated by the European Reminiscence Network. The project was called ‘Remembering Today, Caring Tomorrow’ (RYCT) which was based on the compelling idea that reminiscence and creative activities such as recalling proverbs or collecting memorabilia, however small in scale, can benefit persons with dementia by promoting personal wellbeing ,enriching communication and preserving lifelong relationships. There is a conventional view of nostalgia which sees it as an unfortunate way of seeing life as it prevents people from seeing the present clearly. The reminiscence approach turns this view on its head; by recollecting our past, it argues, we can better face the future. This view might not be entirely valid in South Africa. As shown by the deliberations of the Truth and Reconciliation Commission and elsewhere, for many people the past is not a happy place. This constitutes a factor to take into account when considering the possibilities of adopting such an approach in South African conditions.

This book is not just informative; it is much more than a ‘how to’ manual. It is also in places very moving as in a poem by a carer whose life was altered by her husband’s illness. It includes these lines:

“My husband’s needs must come first now
For in sickness and health I took a vow.
I will come to terms with this illness,
Even though I still don’t know how”

The book makes several points for us to take on board. To take just a few examples: the special contribution of family carers, the imperative to avoid the’ strong tendency’ to depersonalise and marginalise people with dementia, warmth (demonstrating concern and recognition), and playing to peoples’ strengths as much as possible. What is particularly impressive is the amount of practical detail provided to assist with the planning and carrying out of reminiscence based sessions. For example, based on the experience of one of the groups: ‘Fred needs one-to-one attention for activities when he’s away from Ena’ or ‘Working with the whole group, ask about the first pay packet. What did members spend their first pay on and how much was it?’

The book is definitely recommended, so long as the need to modify its advice to better suit South African conditions is taken into account.

If you would like to know more about the books, videos and any dementia related material we have available, please contact our office for more details on 021 421 0077