Glenna Crooks

An Alzheimer’s patient’s brain is not the only one broken-down by the disease. The caregiver’s brain is, as well. How could it not?

Consider soon-to-be-caregiver, Margaret, in this MindMap of her life. She is not a real person by the way, but this picture of her life is based on real people and might be a lot like yours. Like many today, she is busy, time-crunched and already on “cognitive overload” as a working wife and mother with a home, three children, a dog, a cat, and a small vacation home. Her husband works for a global company and travels most of each week. She joined her father-in-law’s accounting firm and recently became the managing partner.

Margaret’s life is near perfect. She is financially secure and her family has never faced anything worse than ordinary illnesses, occasional plumbing problems and snow days. It is overloaded, though, and about to be more so as it collides with Alzheimer’s Disease: her widowed father-in-law has just been diagnosed. Others in his family do not live nearby and given her husband’s travel schedule, she will become the caregiver.

Imagining she was my best friend, I set out to help her. It took far longer than I thought to understand the stages of the disease and caregiving dynamics and to map them out to show her and help plan next steps. It did not take long, however, to realize that she needed far more than information. She needed help, not only for caregiving but for coordination, and that was not easy to find.

At the time of her father-in-law’s diagnosis, Margaret was already managing connections with more than 375 people to nurture her marriage and children, maintain the family’s health and home, manage the business, have a social life and keep community commitments. That number is typical for a working woman with three children but still far higher than the “maximum” set by Evolutionary Psychologist, Sir Robin Dunbar, who says our management limit as humans 150. Now, she will manage even more connections, perhaps as many as 50 as she arranges for his medical visits, tests, transportation, aides, and legal and financial matters, as she supervises all other aspects of his life and property and communicates with family members who live far away and may not always agree with her recommendations for his care.

Seeing a map is one thing. Traversing the territory is another and that’s what Margaret will do, perhaps for a decade or longer. Given the management overload of ordinary life in the best of circumstances, it is easy to understand why the extraordinary circumstances of Alzheimer’s and the demanding responsibilities of managing years of caregiving would cause a caregiver’s brain to break down as well.

This information was first presented at the Disruptive Women in Health Care “Mobile Mirror, Mobile Mirror on the Brain: Mind, Maps and Memory” Luncheon at the Connected Health Conference on December 13, 2016.

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