Thursday, March 27, 2014

Let’s Talk About Women and Alzheimer’s

Before Alzheimer’s came into my life, I considered it to be an equal opportunity disease affecting males and females the same way. During my years of involvement, I began to realize that Alzheimer’s had a bigger impact on women than on men.

The 2014 Alzheimer’s Disease Facts and Figures includes a “Special Report: Women and Alzheimer’s Disease.”  This report highlights several studies that bear witness to the higher burden the disease has on women.

Out of all Americans with Alzheimer’s, two-thirds are women. Why? The most obvious factor is age. Women have longer lifespans and are more likely to reach the age of highest risk. Women are more concerned than men about developing Alzheimer’s, and with good reason. A sixty-five year old woman has a 20 percent lifetime risk of developing dementia during her lifetime. I don’t know about you, but I’m not happy with those odds.

I admit that before Jim developed dementia, I never gave much consideration to how unfair Alzheimer’s is to the person with the disease and the caregiver. I had no concept of the breadth and scope of the disease—how all consuming it can be.

Being a caregiver for my husband was never a part of my vision of our life together. Jim never seemed like the type of person who would ever be anything but decisive, a man of strong convictions, protective, creative, and loving. Never in my wildest imagination could I have envisioned the turn our lives would take when he developed dementia. And certainly, if an Alzheimer’s type of dementia had ever entered my mind, I would have thought of him as an elderly man, not one who wouldn’t live to see his sixtieth birthday.

The job of caregiver falls more often on women. They are two and a half times more likely than men to be that caregiver who provides the around the clock care for a loved one who is in the late stages of the disease. These female caregivers are made up of daughters, wives, siblings, friends, and in younger onset—mothers. In a study of caregivers, indications are that females are substantially more likely than males to provide intimate personal care for their loved one with Alzheimer’s. Just like me, other women caregivers take on bathing, dressing, toileting, and changing adult diapers.

Caring for a loved one is hard work and stressful. Women report a higher level of emotional stress than men (62 percent vs. 52 percent) and greater physical stress (47 percent vs. 24 percent).

Women’s employment is affected adversely by caregiving. Twice as many women as men give up employment entirely to be caregivers. Seven times as many women as men go from working full-time to part-time in order to be a caregiver.

I was in my forties when Jim developed dementia and worked full-time. Quitting work wasn’t an option for me. There were times when the challenges of juggling a job and caregiving seemed overwhelming. Jim required only about four hours of sleep at night and that meant that I often went to work sleep deprived and emotionally drained.

When I hired caregivers to come into my home, they would often arrive late, or call at the last minute that they couldn’t come. Because they were undependable, it made me, as an employee, feel undependable too. Fortunately, my employer allowed me the flexibility I needed to work around caregiving issues. They knew that from time-to-time I would receive a phone call and have to go home to tend to the latest challenge—wandering, refusing to let someone else do something for him, or just to comfort him when he was scared or depressed.

I was young compared to most women who cared for spouses with Alzheimer’s. When I found myself feeling defeated, I couldn’t help but wonder how elderly ladies managed full-time caregiving.

Think about it—as a woman you are more likely to be a caregiver for a loved one with Alzheimer’s, and then, after years of caregiving, you are more likely to develop the disease. We women have a large stake in ending Alzheimer’s. Our brains matter to us, and we want to keep them healthy throughout our lifetimes. We need to join together as women, as caring people, as advocates to end Alzheimer’s now.

copyright © March 2014 by L.S. Fisher

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