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Fall 2020 - Innovation

Alzheimer’s Disease: A Patient’s Perspective

Image of patient and her husband

AN ACCOMPLISHED physician and professor of psychiatry and medical anthropology at Harvard Medical School, Dr. Arthur Kleinman discovered his impressive credentials left him ill-prepared when his beloved wife, Joan, was diagnosed with a rare form of Alzheimer’s at age 59. He chronicles his and Joan’s journey in The Soul of Care: The Moral Education of a Husband and a Doctor, a memoir that details the rewards and heartbreaks of caring for a loved one in the throes of dementia. During his decade of caregiving until Joan’s death in 2011, Dr. Kleinman learned no one emerges from this experience unchanged.

BSTQ: Why did you write about your experience caring for Joan?

Dr. Kleinman: I started writing when she was just starting on her 10-year course of Alzheimer’s disease. She had a very particular kind of Alzheimer’s that affects only 5 percent of people, and it began in her occipital lobes, which meant she became blind first. To be both blind and have dementia is very trying, particularly for the person who has it, but also for the caregiver.

BSTQ: After her diagnosis, did you and Joan discuss long-term care?

Dr. Kleinman: On that first night after the diagnosis, she said in an unemotional, very direct way: “I will not linger with this disease. You will find a way of helping me end it so I do not lose respect or dignity.” And of course, I was not about to help her end her life at any point, just because I couldn’t conceive of that. But right from the beginning, that was her concern, that she would lose her dignity, and she was an enormously dignified person.

BSTQ: Tell us about your early years of caring for Joan.

Dr. Kleinman: I remember feeling happy cooking dinner and doing the dishes. Joan’s denial of how severe her medical condition was also made it easier for me. We pretended we could cope, that the losses were not so great that we needed to make a fundamental alteration in how we lived. But that’s all it ever was: pretending.

BSTQ: When and how did things begin to change?

Dr. Kleinman: One of the few truisms about illness and caregiving is the only constant is change. In our case, we had only just settled into a manageable caregiving routine when personality and behavioral changes surfaced. There were sudden outbursts of anger, periods when she became silent and withdrawn, frustration with the limitations on what she could get done and, very occasionally, panic. These episodes first colored and then transformed how Joan related to me, making it more difficult to collaborate on her care.

BSTQ: You mention in your book that your primary care physicians were a source of strength and encouragement. In what way?

Dr. Kleinman: They were an ongoing source of support for us both, engaging deeply with the minutiae of daily living, with how home care was going and with our psychological and social well-being. Their uplifting and enduring presence provided us with something approaching a sense of security as we went through this wretched experience, knowing they would be with us until the end no matter how bad it got, no matter what was required of them.

BSTQ: You felt the neurology professionals you worked with failed you. How so?

Dr. Kleinman: Neither the young neurologist who followed the progression of Joan’s disease every six months, nor any of the other neurological specialists we needed as her disease worsened, showed interest in the necessities of family caregiving. None offered advice about the value of a home health aide. No one told us how we might modify our home to make it more appropriate for Joan’s disabilities. None speculated about how a physical therapist or a visiting nurse might help us. Nor did they deem it helpful to refer us to a social worker or therapist. We might have hoped at least for a team-based approach to patients and their families, where we could be referred to other health and welfare professionals in one neurological group for their advice and expertise.

BSTQ: How do you define the “soul of care?”

Dr. Kleinman: I think what lies at the soul of care is a form of love. You will do everything you can for another because they mean so much to you. It is also problematic because we all have complex relationships and we’ve got other things going on in our lives.

BSTQ: How did caregiving change you?

Dr. Kleinman: Those 10 years changed me almost entirely and made me realize how crucial the human aspect was. I was always good with patients and students, but I wasn’t like that generally, and taking care of Joan and seeing how sad and frustrating it was, made me a different person, a better person.

Trudie Mitschang
Trudie Mitschang is a contributing writer for BioSupply Trends Quarterly magazine.