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Ethical Issues in Dementia CareReview - Ethical Issues in Dementia Care
Making Difficult Decisions
by Julian C. Hughes and Clive Baldwin
Jessica Kingsley, 2006
Review by Jacqueline Mogle
Nov 20th 2007 (Volume 11, Issue 47)

By the year 2020 it is estimated that approximately 115,000 individuals will be diagnosed with some form of probable dementia. Because of this fact, a focus of current research is on the humane care of individuals with dementia. This care involves making a number of decisions for and about the individual with dementia from those about daily activities to whether and how to treat the various diseases (e.g., pneumonia) that complicate the disorder. In many cases, the individual with dementia cannot meaningfully contribute to the decision-making process leaving loved ones to make difficult decisions based on their intuition of what is best for the individual.  For those patients not fortunate enough to have family members involved in their care, these decisions are left to nursing home staff, social workers, and doctors. The book Ethical Issues in Dementia Care attempts to awaken caregivers to the moral obligations facing them in the decisions that they make every day with regard to the individual with dementia. The purported aim of the book is to help caregivers, however, its practical use is limited and the content leaves much to be desired.

The book begins with an overview of different moral theories that could be used to make ethical decisions. After evaluating and disposing of these theories the authors embrace an eclectic approach (guided by an "informed conscience") to decision-making in dementia care and spend the rest of the book explaining the different factors that one should consider in making these decisions. While this section of the book spans over 90 pages, it could be summed up as two main ideas: first, the individual with dementia should be treated with empathy and second, the individual with dementia should never be considered in isolation.

The first idea essentially stresses the fact that individuals with dementia should be treated as people with thoughts and feelings even though they cannot always express these in an understandable way. The role of empathy is then considered with regard to common concerns in dementia care such as keeping the individual safe and improving their quality of life. Secondly, the authors emphasize the idea that people are interconnected and that even the smallest decision will affect more than just the person with dementia. This means that no decision in this context should be taken lightly because of its possible ramifications. However, after establishing these two ideas, the rest of the book merely repeats them in different ways and presents additional case studies of caregivers applying these principles.

Overall, it is these case studies that might prove useful to readers. The authors have collected a number of stories from caregivers through their work in this field and they present these briefly to show the decision-making process as it applied to each individual case history. These case studies highlight the decisions that caregivers must make and how others have dealt with them successfully and unsuccessfully. In this way, the book provides some assistance to caregivers by giving them examples of how others in their situation have coped and the processes by which they made their particular decision.

Beyond this though, the book supplies little information that can be readily made use of in the high stress reality of caring for someone with dementia. Many of the authors' recommendations are made with the best intentions but fall short of giving practical advice on how to make decisions in these situations. The book fails to deal with any of the prominent issues (e.g., end-of-life decisions) in dementia care in sufficient detail and leaves the reader wanting more with regard to the tangible issues and less of the repetitive conceptual content that appears throughout the book. The purpose of the book is to help caregivers but it will likely only frustrate them by its lack of actual practical advice.

© 2007 Jacqueline Mogle

Jacqueline Mogle is a fourth year graduate student in the experimental psychology program at Syracuse University


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