The truth about Alzheimer's disease is tough to face. Loved ones gradually separate from their past and need higher levels of care as the disease progresses. Women primarily shoulder Alzheimer's caregiving. I find it poignant that this is almost the exact opposite of what most of them experience as moms: Their elderly charge becomes less capable instead of more, they decline instead of grow and the duration of the caregiving period is unspecified and highly
unpredictable.
Whenever I speak to working women around the country, I hear from caregivers who are sandwiched between kids and parents with conflicting needs and who are struggling to keep their careers going as the reality of caregiving for parents sets in. In a study from the Working Mother Research Institute sponsored by GE, we asked over 2,000 current and former Alzheimer caregivers about what they are facing as they take on this additional role. Our study showed that women at the prime of their careers reported feeling judged by co-workers, not being able to accept promotions and straining to manage their jobs to their own high standards because of Alzheimer's caregiving duties.
We found that depression was affecting over a third of caregivers as they struggled to keep up with their multiple responsibilities while taking charge of parents, in-laws and sometimes spouses with this illness. Half of the caregivers reported feeling overwhelmed and two out of five were sleep deprived. The health of caregivers themselves comes into jeopardy as they make time for everyone's doctors appointments -- except their own.
The health disparities that we see in many diseases are also present in caregiving. Our study found that minority caregivers were twice as likely to spend $10,000 per year on caregiving than white caregivers, and had fewer hours of help at home.
We found a strong preference among caregivers for early diagnosis. Knowing what they now know from caring for an Alzheimer's patient, 84% said they would want an early diagnosis for themselves -- and the number one reason for that was so they could help their children understand how they wanted to be cared for. The pain of not knowing a loved one's wishes is a terrible burden for caregivers to shoulder.
Through the research there comes a portrait of brave, dedicated, strong women taking care of their loved ones through the progression of Alzheimer's.
As employers and advocates for women, we want to keep our focus on caregivers as well as on patients. We want to be sure that the women who are caregiving for their elders get the attention
and support they need-- in their jobs, in their communities and in their circle of friends.