Collateral Damage: The Impact of Dementia Caregiving

MaryAnne Sterling, CEA

In this episode I discuss the experience of caregiving, especially related to family members with dementia, with MaryAnne Sterling. MaryAnne is a caregiver advocate and subject matter expert in the Alzheimer’s disease community. Her experiences with caring for family members with dementia, and a long term commitment to making a difference makes her a highly respected voice.

I was pleased to see in recent weeks that the family of Henrietta Lacks and Thermo Fisher have agreed to settle a suit filed by her estate. Both parties say they are pleased the matter is resolved outside of the courtroom. Neither side revealed any details of the agreement. I think this is great news and long past due. If you’re not familiar with the story of Henrietta Lacks, I’ll try to summarize succinctly. Over 70 years ago, Henrietta’s cervical cancer cells were removed and used for research without her consent. Uniquely, these cells continuously reproduce, making them an ideal source for cancer researchers. But the Lacks family never received any compensation for the use of these cells, which have helped advance research in countless ways. The entire story is told in the book The Immortal Life of Henrietta Lacks, by Rebecca Skloot. There’s also a good summary of the settlement in Nature.

I also wanted to call attention to an opinion piece in the Journal of the American Medical Association called “The Paradoxical Decline of Geriatric Medicine as a Profession,” by Dr. Jerry Gurwitz. He notes that the number of geriatricians is on the decline, and there may be several reasons for this, including lower compensation and the prevailing attitude in our culture about older people. He says gerontology is actually pretty exciting stuff because of its complexity, and it should attract more physicians who really like to dig in and solve hard problems. Interdisciplinary care and addressing the needs of family caregivers also offer opportunities to improve lives while engaging in complexity.

Back to my interview with MaryAnne: She supported multiple parents with dementia and meets with policy makers, speaks at conferences, and serves on several committees and advisory boards. MaryAnne is patient research partner and ambassador for the Patient Centered Outcomes Research Institute (PCORI). She is on the steering committee for iConquerMS Caregivers, and the Beryl Institute global patient and family advisory board. MaryAnne is EVP of caregiver experience at Livpact, and is currently working on her masters in public health at George Washington University. MaryAnne also started a podcast called “Us vs. Them: Patients and Caregivers Confront Healthcare.” She shares more about it during the interview.

Caregiving can have incredible effects on the physical, mental, and financial health of the caregiver. It is exhausting. It has social implications as well. I personally know of a situation in which an individual in a leadership role at a company told employees that they would never again hire anyone who had elderly parents because, I guess, those obligations got in the way of being owned by your employer. That person’s lack of empathy, and the underlying values that lead to that moral emptiness have stuck with me. I hope we as a collection of societies can change how we think about aging and dementia care.

For starters, caregivers should be considered part of the care team. Not ignored or treated like an interference.

When we respect ourselves, each other, and the planet, the health of everyone and everything improves.

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