How We Think About Dementia is a book directed at professionals or people who are familiar with research and medical terminology. The language is fairly technical and likely needs a bit of translation for the layperson/non-professional. There are, however, areas of the book that make sense for any person with even minor experience with dementia or other health conditions. I particularly like Hughes’ focus on compassionate care and the suggestion that dementia be called “acquired diffuse neurocognitive dysfunction” (2014, p. 11). This encompasses the many causes of dementia.
People with dementia require multiple forms of care: “bodily care, psychological [care], emotional [care] and spiritual care” (Hughes, 2014, p. 32). I would include psychosocial care in that list due to the alienation of friendships when a person has dementia. Friends and family members may not know how to interact or react to the changes in memory and behaviors and, thus, keep their distance. This also isolates the caregiver.
All of life has significance, regardless of a person’s abilities or inabilities. Each person has the right to care provided with respect, kindness, and comassion, though it is often not given in that manner. As Hughes states “what might we really want given our changing expectations of life?....the experience of authentic love” (2014, p. 34). In the earliest stage of dementia, it is common to dismiss the symptoms as of little significance. Misplacing keys or losing words – being unable to recall the word needed in a sentence – is a common occurrence as we age and are due to a variety of normal environmental conditions, such as dietary intake, alcohol consumption, exposure to pollutions, and trauma, to name a few. Sadly, many doctors perpetuate the dismissal of symptoms. “This attitude can reasonably be called ageist inasmuch as it denies help to people simply on the basis of their age where they would receive help if they were younger. It may also reflect therapeutic nihilism, that is, the belief that nothing can be done and therefore nothing should be attempted and the person should be encouraged to just accept the facts of life, which in this case are the facts of aging” (Hughes, 2014, p. 39).
Hughes discusses personhood in terms of who the person is before the onset of dementia and that many of the roles we have in life and behaviors continue; a person does not stop being a parent even if they cannot recall they have children, they do not stop being a wife or husband even if they do not recognize their spouse. Those connections follow a person throughout the condition. Further, just because the person no longer communicates in the way he or she previously did, this does not mean his or her thought processes, feelings, understanding of your communication, etcetera, have stopped. Quite the opposite. The brain is still working, just not in the same way as it did before.
Determining capacity is described well in Chapter 6. As much as possible, the person with dementia should be allowed to make their own decisions. It becomes concerning when the person cannot make a reasonable decision based on all of the facts. If they believe they are safe on their own, but in reality are not, this must initiate a review of the person’s capacity. Once the review is done, caregivers or human service organizations may be relied upon for identifying next best steps.
Hughes identifies ethical concerns through the use of case studies. Within these case studies, circumstances are shared that bring to light challenges that may be encountered by caregivers. Not only are the case studies a review of ethical considerations for a person, they also incorporate the considerations of capacity. As discussed in Chapter 6 of the book, it is necessary to give the person input and control of their medical treatment decisions if possible. It is discussed that the decisions made by caregivers (professional or personal/family) should be done in the best interest of the person with dementia. However, this process can take considerable time. The time can be a good thing, meaning the decision is well-reviewed by a team of people. On the other hand, it can be a bad thing, such as when a person’s health is declining and a slow decision process allows further decline.
Towards the end of the book, Hughes writes about the arts and looking for joy along the journey. This does not mean dementia is a joyful process, but there are moments in the journey that can be joyful, and joy can be intentionally created through activities such as artwork and interactions with others. It is these moments that sustain the person with dementia and their loved ones through more difficult times, in my opinion.
I chose to review this book due to my mother’s passing from dementia. While I learned a great deal about dementia through my mother’s dementia journey, I know there is far more to learn, far more to share with others in the hopes of making a difference in the lives of those who will take this journey in the future. Once a caregiver is on the path of providing for a person with dementia, there is little time to do research and seek out support opportunities. This means the professionals must offer the support through human service agencies. A great challenge is often seen in the primary caregiver: the caregiver is unwilling to accept help or share in the caring because he or she knows the habits and expectations of the person with dementia. There is fear that another person won’t do something correctly, causing great upheaval and difficult behaviors in the person with dementia. Even though the caregiver is exhausted and need rest to rejuvenate, he or she cannot give up control. By understanding early on in the journey what opportunities are available and when services can and should be sought, this caregiver burden can be reduced.
It takes a team of services to provide quality care, and by quality I mean meeting a person’s basic needs of safety, shelter, food, activity, regular bathing, regular healthcare, and social interactions. Services, ethical considerations, methods and barriers to care are covered well in the book from a professional perspective. Portions of the book are related to the laws and provisions in England; none-the-less, the majority of the book provides a sense of direction for professionals (medical doctors, psychologists, psychiatric nurses, occupational therapists, etcetera) in caring for a patient with dementia.
© 2015 Lynne Trevisan
Lynne Trevisan, D. C., Assistant Professor, College of Health, Human Services, and Sciences, Ashford University