Health and social care practice is inevitably shaped and sometimes constrained and confined by government policy and national strategies. In this excellent new book from Shibley Rahman, the rhetoric of English dementia policy is teased out and positioned against current research to illuminate areas where people are ‘living better with dementia’ and perhaps more importantly those areas of dementia care where inequality and stigma remain.
This is a progressive look at initiatives and innovations which will continue to impact on people living with dementia over the next few years. Chapter One is a good starting point for those new to English dementia policy, providing a brief summary of current policy and strategies including timely diagnosis, the direction of research into care, cure and prevention of dementia, and progress on dementia-friendly communities. Throughout the rest of the book, each chapter stands alone as a detailed, thought-provoking account of an aspect of living better with dementia.
Several chapters encourage the reader to engage with challenging social structures such as stigma, inequality and deprivation of liberty. The risk of underdiagnoses and restricted access to services are highlighted for people living with dementia from ethnic minority groups, people with learning difficulties living with dementia and people with young-onset dementia. Rahman provides a robust critique of a rights-based approach to care and personal health budgets, urging that ‘we need to apply the same rigour for reasonable adjustments for cognitive and behavioural interventions as for physical ones’ (p. 259). However, this is not simply a book about policy; there are also chapters citing empirical evidence to guide health and social care practice. Of particular relevance to people living and working in care homes is the summary of current practice in the management of nutrition and continence. As one might expect from the author of Living Well with Dementia (Rahman Reference Rahman2014), Rahman advocates a whole-person care approach recognising that to live better with dementia people need opportunities and support to ‘flourish’ – to feel good and function effectively (p. 359). He shares evidence to support the use of art, music and ‘sporting memories’ as ways of enabling and recognising what a person with dementia can do, rather than what they can no longer do.
Rahman does not shy away from difficult ethical and legal topics. In the chapter on Global Positioning Systems (GPS), the reader is guided through the complexities of consent, human rights and surveillance. Alongside the legal review of GPS is a critique of the power of language in the acceptability of such interventions, highlighting the stigmatising terms of ‘wanderer’ and ‘tagged’. The potential benefits of the Human Genome Project are acknowledged, but Rahman balances the debate by highlighting the potential risk of genetic discrimination. He cautions that genetic loading might lead to a neglect of modifiable environmental factors. English policy initiatives support by the third sector, such as dementia-friendly communities and dementia friends, are examined and caution offered that there is the potential for people with dementia to be viewed as a homogenised group rather than individuals. He suggests that by supporting people with dementia into leadership roles, a more equitable, less disabling way of living better with dementia may be realised.
The book is written in an accessible style with frequent figures and boxes which succinctly summarise ideas and focus attention. A wide range of topics, from review of policy, to explanations of interventions, to discussion of support networks, are covered and there is the risk of a disjointed experience if the book is read from cover to cover. I would have welcomed clearer introductions and conclusions to each chapter. The book is perhaps best dipped into; when it will unfailingly trigger the desire to know more about a topic. The thread linking all chapters is the way in which Rahman situates practice and research within the context of English dementia policy. His extensive referencing of both empirical international research and legislation, alongside his ability to always position the experience of the person with dementia and their family centre stage, make this book essential reading for those in the world of dementia research, those who commission services or implement policy, and those who work with people with dementia.
