RESOURCES FOR DEMENTIA CAREGIVERS
RESOURCES FOR DEMENTIA CAREGIVERS
Books galore and pamphlets from various Alzheimer’s and dementia organizations. There is no way to be exhaustive. So here are some I have found valuable.
National Institute of Aging. Go there, type in dementia or Alzheimer’s and there are many pamphlets available, such as: Dealing with Dementia: When Thinking and Behavior Decline, Preventing Alzheimer’s Disease: What Do We Know, and Getting Help with Alzheimer’s Caregiving. Also there is information on current research, some recruiting volunteers.
Alzheimer’s Association. Alz.org. The organization sponsors an annual walk for Alzheimer’s in many cities, including Salt Lake City in September. They have information on support groups for caregivers and information on current clinical trials.
Alzheimer’s Society. This organization has telephone-based advisers for patients and caregivers. Also, they have an online community, Talking Point, for support at any time.
Support groups are available many places, including the Alzheimer’s Association, the Jewish Community Center, and in many
Memory facilities.
The books I read and most appreciated:
Boss, Pauline. Loving Someone Who Has Dementia. 2011. Jossey-Bass. Ms. Boss is the Ph.D. Social Worker who developed the idea of Ambiguous Loss, the title of her earlier book. The book recommended here is broader in concept, explicitly for dementia caregivers, with many thoughts about how to help caregivers function in their bed of grief and stress. She understands the emotional issues faced by the caregiver, having counseled many of us. For example, she suggests that we each create a Psychological Family, consisting of those who support the caregiver and their care, whether they are biologically related to us or not. Indeed, the need for emotional support and empathy may mean that some close relatives are not part of this family, but others can be. That is true for my “Psychological Family” with Beverly. And there is a series of Guidelines including “Find Meaning,” “Manage Your Mixed Emotions,” “Imagine New Hopes and dreams.” “Yes” to her many recommendations. Generally the book is a very valuable resource for the long-term emotional process we caregivers continue to face.
Kleinman, Arthur. The Soul of Care. 2019. (Viking). Kleinman is a noted Psychiatrist who faced a long battle with his wife Joan’s Alzheimer’s Disease and for him. He managed for years with her at home--first alone, then with a hired support caregiver, and finally (despite promises to her that he would never) moving her into a specialized institution. (One much like where Beverly is.). Like many others, he experienced the despair, the ongoing grief as her functioning became worse and worse. Yet, as he writes, we turn our despair around and we “…broken and empty, somehow getting themselves up off the floor and back to the work of care.” (p,193). The thesis of the book is that caregiving is central to human existence, that there is a moral imperative to continue to care. “ Care…is also a necessary condition for living a life of purpose and passion. ….caring, and its offspring, love, is a requisite for creating meaning.” (p. 245). He argues that there is a moral imperative to the medical system and its practitioners at all levels to bring empathy and caring into medicine, that the present day medical model has developed an unfortunate commitment to “…an industrial business mode that is about ‘throughputs’ and has lost sight of what doctoring should be about.” (p. 223). There are also cases discussed, focusing on how the medical system can lose its way, missing the family and sociocultural environment and the psychological state and circumstances of the patient. I especially related to his tale of Joans’s being tested one more time with the standard memory testing; Joan suddenly announced in a “lucid and articulate outburst” (p. 227) she would not do this “tedious” and “tiresome” task. Beverly had a similar outburst over describing a wooden block (part of her testing) and simply argued that “of course I knew what it was” and that she would not engage in such a “stupid task.” In both cases, I believe, they knew the right answer but felt belittled and ashamed that, following their earlier failures in parts of the test, and knowing their deterioration, they were in the middle of this continuing outrageous assault on their personhood. Also Kleinman talked about how, as Joan declined, he lost her as a source of support for his own personal emotional growth and the source of her insight as to how he could be the best caregiver. I, too, came to realize how much Beverly had become my close emotional support for my own development in the area of empathy and caring and how that aspect disappeared as she declined. (I must note that the first 6 chapters were a bit of a slog, as they precede the issue of dementia caregiving.)
Davis, Patti. Floating in the Deep End. 2021. Liveright Publishing Corporation. Patti is superbly thoughtful and articulate about the emotional and family complexities of caregiving for an Alzheimer’s patient. Her father, former President Ronald Reagan, died of Alzheimer’s through the same slow horrendous decline characteristic of the disease. There are many valuable insights into the experience of the patient and the family caregivers. This is a deeply personal story of complex family relationships that are highlighted by the struggle of their husband and father. Her insights are consistently about the core issues: deepening one’s appreciation of the person with dementia (as I have), acquiring some knowledge of the diagnosis of Alzheimer’s and other dementias; managing the mundane matters, like taking away the car keys; and “Is there a gun in the house”; the significance of advance directives; grief related to death, that “Alzheimer’s, though, is a death before dying.” (p. 37)). She clearly expresses several fundamental ideas: That the dementia patient has their own fear and anxiety. That they deserve to be treated with dignity rather than treated as though they are no longer present. A central theme is how our involvement with the dementia patients brings us to face issues about ourselves and our family. Brilliantly written.
Mace, Nancy L. and Rabins , Peter V. The 36-Hour Day. Johns Hopkins University Press. (5th Edition, though there are surely later editions by now), 2011. A very useful look at many, many issues caregivers will encounter. The early chapters provide basic information about dementias, medical interventions, and the symptoms we will see. For example, there is a discussion of evaluation/diagnosis. Including mental status, blood tests, and brain imaging. Then discussions of the many problems to be faced with the dementia patient. Of course, these are many of the problems some of us have encountered, but are new to the novice caregiver. Driving safely, eating and managing medicines, dressing, bathing, their anger, their anxiety, etc. And the likely medical problems, from falls/injuries to constipation to vision. Then the variety of symptoms in behavior and mood. There are symptoms such as wandering, being repetitious, and forgetting; and the difficult anger and hallucinating. There is great information and advice; for example: “When delusions or hallucinations occur, react calmly so that you do not further upset the person.” (p. 80). And much information about caregiving and finding resources and help. And much, much more. This is a wonderful resource for information about almost any issue a caregiver will encounter. I confess to NOT reading it cover to cover, but using the book to find specific kinds of information. A valuable resource with so much information and highly reliable.
Devi, Gayatri. The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias. 2017. Dr. Devi is a neurologist practicing in New York City with extensive experience with dementia patients. (We know that Tony Bennett is her patient, as he thanked her at a recent televised concert). Her concept that Alzheimer’s as a “spectrum” disease makes some sense, as there are varying levels of functioning and differential impacts in different areas of functioning. The book makes a strong case, largely with cases from her Neurological practice. My disagreement with that claim is that, with Alzheimer’s, the patient will continue to progress toward the completely helpless near-end state unless they die of another cause. Other spectrum diseases, autism in particular, become relatively steady states. In the case study discussions, she is clear about diagnosis and the evaluation of various areas of functioning and about prognosis. She also holds, as the title indicates, an optimistic view, based on these cases, namely that lifestyle changes, diet and exercise and more, may pause or slow the progression. The case studies are very engaging with thoughtful insights. For example, one patient who did accounting work was able to continue to manage the calculations despite the great loss of much of memory and many other functions. The accounting was so “overlearned” that he continued to know how. And I was struck with how Tony Bennett (never mentioned in the book), despite being well advanced in his dementia. still knew the music and lyrics for many, many songs as demonstrated in his two concerts in 2021. A striking case in the book involved a caregiver who was having an affair with the woman hired to help take care of his wife. The wife told Devi that she thought her husband was involved with the other woman. Devi investigated and he confessed. Devo decided to tell the wife that this was not happening. Telling the wife the truth would only have created an enormous mess with terrible emotional impacts on all parties, so telling the truth was ethically & morally wrong.
Karlawish, Jason. The Problem of Alzheimer’s. 2021. St. Martin’s Press. Dr. Karlawish presents the history of Alzheimer’s from the first identification by Dr. Alzheimer; he reported critical findings in 1907when he autopsied the brain of a patient with the symptoms we now know and he identified the tangles of the tendrils and the deposition of a “special substance” later identified as amyloid plaques. There are three main areas of discussion in the book:
1) There is the science that helped define the disease, its course, and the efforts to find a biological test that would definitively identify the brain processes that create the observed symptoms. One striking story in that history is that of a PET scan with Avid (renamed Amyvid by Lilly) for viewing the amyloid plaques in a living brain. After FDA approval of its efficacy, the final approval was whether Medicare would pay for its use, potentially for many, many hundred million dollars across the Alzheimer’s population in the US. The ultimate question was whether this advance would result in improvements in health outcomes and the answer from Medicare was that it would not improve these outcomes, so the procedure was not approved for Medicare payment. There are sidelights, such as how psychoanalytic theory moved Psychiatry away from the biological/organic approaches, to the long-term detriment of progress. And a key step was Katzman’s essay in 1976 that argued that Alzheimer’s disease (presenile dementia) and senile dementia are generally the same disease.
2) The book reviews the history of competing Alzheimer’s organizations and of public policy. There were many organizations and there was eventually a moderately successful effort to unify them, despite disagreement between the organizations over whether they were about science, public policy and awareness OR centered more on services supporting patients and their caregivers. A central focus is how the Alzheimer’s movement worked toward getting the health care system and Medicare/Medicaid/welfare and health insurance to “…address the burden on the patient and the American family.” (p.135). Central was the attempt to expand “social insurance” to cover the costs to families of dementia care. Toward and after the end of Reagan’s 2nd term, the Catastrophic Coverage Act might have succeeded in providing for that support. But George H. W. Bush, like Reagan, supported reducing government spending and opposed increasing Medicare payments to support “custodial care,” the aspect that included care of dementia patients. To now, we have never arrived at a national plan for this care to relieve the massive human and financial cost from caring for Alzheimer’s and other dementias.
3) Finally, Alzheimer’s never achieved a proper place in the world of medicine. The length of physician time for properly dealing with diagnosis, ongoing changes, the absence of any successful treatment, and the lack of proper compensation left Alzheimer’s (and other dementias) with a minimal place in medical training and practice.
And much, much more in the book.
Sherzai, Dean & Ayesha. The Alzheimer’s Solution. Harper/Collins paperback. 2017. The Sherzai’s are both M.D.’s with their main practice in dementias. The essential message of the book is that Alzheimer’s (and perhaps many other dementias) may be prevented and reversed by major lifestyle changes: exercise, diet, stress control, and adequate sleep. The book presents scientific evidence supporting this message & case studies from their practice. (I must confess to concluding that there was a “confirmation bias” in the discussion of scientific evidence.) Most of all, there is material for self-evaluation about successfully making major changes in lifestyle in each of these areas. The strongest evidence for an impact on dementia is exercise—both aerobic and strengthening. Their diet recommendations move to vegetarian/vegan with particular concerns about sugar, sodium, and cholesterol/saturated fats and toward vegetables, legumes, and fruit. They recommend eliminating all animal-based food (eggs, milk-based, red meat, chicken, and seafood) from one’s diet and that is difficult to manage. But they may be right. In any case, all of their recommendations seem to “do no harm” and likely benefit heart, brain, and lots of other parts of our bodies.
With Beverly, we tried interventions in the areas of exercise and diet, and also tried recommended supplements and hormones. We felt that these interventions slowed the process of the dementia, but one cannot make a definitive conclusion from this single case. The disease did continue to progress. Still efforts at prevention should be considered, as early intervention seems the most likely to succeed at controlling the onset and progress of Alzheimer’s.