A new study by the Working Mother Research Institute explores the reality of women caring for loved ones with Alzheimer's. It provides a stark picture of the responsibilities, commitment and sacrifices women are making as caregivers to the growing number of Americans suffering from this disease. A number projected to increase substantially as the large Baby Boomer population moves into it's senior years.
The study breaks down the personal, health, employment and financial costs of the disease on caregivers and society. It categorizes the current situation as a crisis with an even greater crisis looming in the very near future. As they state in the full report, "The clock is ticking."
- 36% of current caregivers have been providing care for more than 4 years.
- 58% of current caregivers have no idea how long they will need to provide care.
- The mean number of hours caregivers provide care has increased by 30%.
- Minority caregivers are more likely to be caring for someone with moderate to late stage Alzheimer's.
- The overwhelming majority of care is in the caregiver's or patient's home. The trend is growing to provide care in the caregiver's vs. assisted living or nursing home.
- While over ¾'s of current caregivers feel capable of providing care, 49% feel overwhelmed, 36% feel depressed and 65% have not had a vacation in the past year.
- Current caregivers are more likely to care for someone in their home, feel they have no choice, feel overwhelmed, experience a negative financial impact and are less likely to feel capable, and less likely to have access to others.
- 55% of current caregivers are NOT saving for retirement.
- Trouble in the workplace: several negative trends suggest caregiving is impeding ability to get ahead.
- 80% of women (all of whom are over 40) say their doctor has NOT discussed aging with them, 87% of women say their doctor has NOT discussed Alzheimer's with them.
- 35% of women with children over 18 have them residing in their home!
The Working Mother survey also points to a change in the desire to know about and prepare for Alzheimer's. Of the women surveyed 84% would want to be diagnosed as early possible for the following reasons:
- 81% Spare my family the responsibility of making financial & medical decisions on my behalf
- 80 % Participate in decision making about medical options
- 73% Benefit from appropriate interventions
- 73% Participate in making decisions about financial matters
- 69% Participate more in making decisions about living arrangements
- 61% Plan financially for long-term care
- 58% Make plans to spend time with family
- 51% Enter clinical studies
- 34% Make plans to take trips
The experience of caring for someone with Alzheimer's, especially who was diagnosed in a late stage of the disease, provides impetus to know and prepare for the possibility of the disease. The language of the first statement, "Spare my family" directly speaks to the experience of a caregiver who has managed the daily activities, maneuvered the medical care and incurred many of the costs of their loved one.
This desire may be a product of the need to have some control over Alzheimer's, a disease that has no cure or viable treatment. The majority of women who took part in the survey have children and a third of them have kids under 18 years of age. They are part of the "sandwich generation" responsible for the care of aging parents as well as their own children. Their need to know and be prepared is as much for themselves as it is for their families.
They are at the front lines not only as caregivers but as possible advocates demanding more funding for medical research and care, in addition to greater employer flexibility, and support services for caregivers. They keenly understand the needs as they are experiencing the challenges every day. As is often the case, time and resources are the key obstacle to direct action.
There is an opportunity, as Professor Fernando Torres-Gil suggests in Your Turn To Care, for Baby Boomers to harness the social activism they witnessed and took part in the 60's and 70's, and take action to prepare for and demand more of our government, the medical/insurance industry and social agencies to meet the needs of the aging Boomer generation of 75 million Americans.
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