Diagnosed With Alzheimers Or Another Dementia

A practical guide to what's next for people living with dementia


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Dementia is never one person’s illness. Its ripples spread wide, enveloping family, touching friends and bumping up against professional services and care. Dementia can be cruel — hard for those affected and sometimes even harder for care partners. When Alzheimer’s and other dementia came out of the cupboard in the late 1970s, lots of advice was provided for carers or caregivers (as care partners are commonly called) with support groups internationally focusing on them. In the last decade the voice of people with dementia is now being heard more clearly.

In the past, the emphasis was on the negative aspects, which of course exist. Now we are hearing about how to live with the positive. This book is unique! It stands out from the thousands of books that have been published on dementia. It is told from the viewpoint of a person who has been living successfully with dementia and a researcher interested in living well in later life and with dementia. When Kate Swaffer was diagnosed with dementia before her fiftieth birthday, she eventually rejected the prevailing dogma of Prescribed Disengagement®. She prescribed her own formula of engagement which includes writing — this book is just one of her contributions — studying for her PhD and advocating. And when Kate is not travelling to Geneva to talk to the United Nations or attending a conference, she is a wife and a person who wants to enjoy life. In living with dementia, Kate has developed strategies on how to cope with her disAbilities. We can all benefit by learning from her. Associate Professor Lee-Fay Low has a wealth of experience working first as a nursing assistant in home care, as a clinical psychologist and as an academic researching dementia. Lee-Fay is creative and empathic. She is on a mission to put fun back into life for seniors and especially for people with dementia. It was Lee-Fay who led the SMILE study, which demonstrated that humour therapy could reduce agitation and improve depression and quality of life for residents of nursing homes who had dementia and were rated as behaviourally disturbed. It was Lee-Fay who spearheaded a dance intervention in nursing homes. Lee-Fay also conceived and evaluated a program for community workers to positively engage older people receiving community care. With such a dynamic duo of authors you can expect a book that is constructive and upbeat. But it’s not Pollyanna! It’s realistic and tells it as it is. The difference with this book is that Kate and Lee-Fay offer strategies and solutions. Their account is practical. It takes the reader step-by-step through the basics and then outlines different issues from diagnosis to legal issues to incontinence. You, the reader, will learn about the differences between the different types of dementia, Alzheimer’s, Lewy body disease and frontal lobe dementia. You may have had questions about the different drugs for Alzheimer’s and the latest ‘miracle cures’ that regularly appear in the media. Does coconut oil work? What are the scams? Does exercise help? Does computer cognitive training work beyond the computer? What is the best diet? When should I arrange Enduring Power of Attorney? How is Power of Attorney different to Guardianship? Are pets good for you? Dementia requires a partnership over the long haul between persons living with dementia and their care partner, family and friends, doctors, nurses, community services, residential care and sometimes palliative care. Swaffer and Low describe what services are available. Currently, services are set up to be reactive, only coming into play in response to problems or crises. I have long advocated for a system of key workers, who would guide the person with dementia and their care partner through the complex and often bewildering maze of services. Unfortunately, we do not have such a system; yet, this book is a personal guide on how to face the challenges that the ever-changing face of dementia presents over time. I particularly liked the chapter on Living with Dementia. Communication is so important to how couples relate generally; in dementia it’s critical. There is a table in which Kate and Lee-Fay describe a care partner’s communications and actions and the reactions of the spouse with dementia and how these could have been handled better. The book does not shy away from the sensitive issues that so often are avoided — all focusing on the viewpoint of the person with dementia. You and your care partner will be interested to read about the right to sexual desire and relationships, how a person with dementia and the person’s care partner handle the transition from driving, how to compensate for declining competency when still working, how to handle holidays and how to manage Christmas and family celebrations. And what if you become irritated with your care partner and your care partner becomes irritated with you? Kate and Lee-Fay beautifully describe dilemmas that arise. This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we — people with dementia, family care partners, friends, or aged care and health workers — can all do to maximise a positive life for many years.

Professor Henry Brodaty AO MB BS MD DSc FRACP FRANZCP

Kate Swaffer

Kate Swaffer was diagnosed with younger onset dementia at age 49. This hasn’t stopped her from studying for a PhD in dementia, co-founding Dementia Alliance International and writing blogs and books about dementia.

Lee Fay Low

Lee-Fay Low is a writer, academic and registered psychologist who has been conducting research on dementia for 16 years and has published more than 80 articles.