Abstract
Karen Watchman (ed.), Intellectual disability and dementia research into practice. Jessica Kingsley Publishers: London, UK, 2014; 334 pp. ISBN 978-1-84905-422-5, £29.99 (pbk)
With the increased prevalence of people with intellectual disabilities and dementia, particularly those with Down syndrome, this is an area that deserves this assembly of international expertise. Dr Watchman has gathered contributions across the spectrum, which will appeal to practitioners, managers and commissioners. The book has a framework of three parts covering areas from the technical to the highly practical. The first part, comprising six chapters, concentrates on the ‘What do we know’ aspect of the relationship between intellectual disabilities and dementia in people with Down syndrome, beginning with a comparison between prevalence in those people with Down syndrome and those with other types of intellectual disability. Chapters two and four highlight the differences in the course and presentation of dementia as it affects people with Down syndrome. This theme is exemplified in Chapter three, where the issue of diagnosis is addressed in addition to the findings from the multidisciplinary approach of the Down syndrome outpatient clinic in the Netherlands, where other health issues, for example hearing and sight loss have been identified, adding to the delay in diagnosis.
Chapter four outlines medication options, highlighting the lack of evidence base to support the use of cholinesterase inhibitors in people with intellectual disabilities and dementia. The ethical difficulties and barriers surrounding research and people with intellectual difficulties and dementia are also discussed. The comprehensive nature of this work is illustrated in chapters five and six, which offer an overview of non-pharmacological interventions and enhanced psychological well-being. There are other useful reminders about communication strategies, the benefits of life story work and memory boxes and how their effectiveness cannot be underestimated.
Chapters seven to ten (part two) focus on the experiences of people with intellectual disabilities and dementia using a number of different kinds of methodology and research. Chapter seven records the work of the GOLD (Growing Older with Learning Disabilities) group and charts the onset of dementia among the group members, also demonstrating the wider impact of when a parent receives a diagnosis of dementia.
Chapter eight presents a number of case studies, enabling the reader to gain insight into the understanding of individual experiences of people ageing with intellectual disabilities and dementia. This chapter highlights the shortcomings of care settings for the three case study participants, with intellectual disability taking precedence over the dementia. Furthermore, staff are not being adequately trained to recognise potential signs of dementia and a shared diagnosis. Staff working within intellectual disability services are trained to promote independence, but a different approach is required in order to maintain existing skills when a dual diagnosis is present.
Chapters nine and ten focus on the experiences of families supporting people with Down syndrome and dementia in Australia. Chapter ten provides a template for planning ahead for families including a person-centred planning approach frequently used in learning/intellectual disability services, but not often in the current context.
The final section of the book (part three) focuses on ‘What are we going to do’, pointing towards the need to redesign current provision beginning with creating a greater understanding of what is happening to the person and the sharing of the diagnosis. Chapter twelve concentrates upon the most valuable resource in care settings – the staff – and their level of knowledge and training. ‘Excellence in dementia care for people with intellectual disabilities and dementia is underpinned by the knowledge and skills of the people who support them, and their ability to adapt to the person’s changing needs’ (p.215). Karen Dodd suggests a training, support and outcome framework for staff to achieve throughout the different stages of dementia and this could be adapted by service providers to use as a model for service progression.
The diversity of contributions continues in chapter thirteen with an honest reflection on 20 years of dementia-specific service provision for people with intellectual disabilities in Canada by Leslie Udell from the organisation Winniserv. Strategic approaches to service delivery are further explored in chapter fourteen, including environmental adaptations to accommodate the changing needs of people and a useful dementia-ready environmental inventory.
Integrated services using joint working to achieve the best possible outcomes for people are highlighted using case studies in chapter fifteen as is the need for a lead person to manage each case. Karen Dodd investigates measuring outcomes using the system she formulated with Bush (2013) – The Quality Outcome Measure for Individuals with Dementia (QOMID), which can be used with anyone experiencing a dementia-type illness, but is in its infancy for those with intellectual disabilities and dementia.
The key themes of the book highlight the need for greater interdisciplinary joint working and sharing of information between dementia and intellectual disability services. The delivery of diagnosis to someone with an intellectual disability is an area that requires further consideration and research, in addition to appropriate communication methods and dementia-friendly environments. This book should appeal to a wide audience and provides a useful and diverse collection of chapters with practical examples that can be used in everyday practice. There is an appetite to embed the practices and ideas outlined here, (some are already well-established in intellectual disability services, for example person-centred planning) and hopefully this book will guide and inform future research and development. These among other themes are constant threads throughout the chapters and this allows for a well-structured and essential read on a less than well-represented subject area.