Ageing with a Lifelong Disability

Ageing with a Lifelong Disability Christine Bigby Jessica Kingsley Publishers, London and New York , 2004 . 256 pp., £ 19.95 (pbk). ISBN 1-84310-077-0 . In a recent essay, the philosopher Ian Hacking predicts that brain science will be the most popular science of the early part of this century – not least, he notes wryly, because the older people who hand out research grants fear the ‘. . . grim reaper popularly called “Alzheimer’s” ’.1 This bleak figure is set in a global landscape shaped by increased life expectancy. Ample funding may indeed have fuelled investigators’ current absorption with the causes of dementia and other age-related conditions. Perhaps less energy has been spent on identifying the roots of successful ageing, still the more widespread – if indefinable – experience for older people. While we know that people with intellectual and other lifelong disabilities may also expect to live longer lives, we understand relatively little about their lifespan development, and even less about how to measure and predict their successful ageing. Christine Bigby's book now addresses these urgent questions in a guide for human service professionals who work with older people and their families. Grounded in current policy trends and research evidence, the book comprises five thematic sections and a densely informative Appendix on biological changes and age-related health risks. It is a valuable resource for a wide readership as it spans an array of disciplines, from social policy to neurology and gerontology. Vignettes drawn from individual experiences punctuate the book to provide rich studies for students and practitioners. For example, the reader has a glimpse of the life of Edwin, aged 53. How his family and co-residents prepared him and themselves for his decline from dementia and subsequent death is a memorable and striking account of the closing of a human life. At the outset, the author presents ageing as a developmental journey undertaken by the person in a given environment, with two lifelong interactive processes at work – continuity and adaptation. A second part of the book draws on international evidence to summarize briskly key findings related to mental and physical health promotion and health care for older people with lifelong disabilities. The central part of the book offers the author a well-earned arena to develop insights gained from studies of the motley players who colour and shore up the increasingly long lives of older people with lifelong disabilities. Probably these brothers, sisters, friends, neighbours, shopkeepers and volunteers of all persuasions serve in their unpaid roles without being unaware that their crucial gifts are tallied as elements of informal support. The author weaves her expert knowledge of these networks into a set of chapters that explore vexing yet inescapable questions for older men and women and the people who support them: What does retirement mean? What are the hallmarks of optimal day services? Is ageing in place feasible? Will individualized planning fulfil its promise for older people? The book's fourth section widens the scope of ageing to deal with the texture of family relationships when older parents, perhaps with help from middle-aged siblings, continue to provide primary care for their adult offspring for many years or even decades. The author cites evidence from studies in Australia as well as the United States, the UK and elsewhere that are unified by a search for the instrumental and emotional supports these families will find most effective. She highlights a troubling feature: while good casework rests on building a relationship of trust with families over time, rapid turnover in health and human services systems personnel may thwart this aspect of good practice. In the final chapter, the author confidently outlines policy directions for successful ageing and names specific strategies to achieve those ends: ageing in place, adopting a life course perspective, independent advocacy and a greater knowledge of how people with lifelong disabilities age – for instance, by preserving their life histories. Each generates far-reaching questions. We do not yet have enough longitudinal data to make confident predictions about how people with lifelong disabilities will experience their middle and older adulthood, whether as family members, citizens or service users. These domains are rich enough to keep researchers in brain science, the human sciences and perhaps even rocket science fully engaged for some time to come. The sweep of this book is refreshing and lucid. However, a vigilant reader may encounter some editorial pebbles underfoot. There are several places where authors’ names are spelled differently in the text and in the References. The demographic information presented in the earlier chapters – trends in the proportions of national populations aged over 65 years, for example – might have had more impact in graphic form. What is important is that Christine Bigby has prepared a humane, evidence-based guide to ageing with a lifelong disability that will inform many journeys both rough and smooth.