Support Groups For Caregivers, Part 1

These days, my life is very hectic while I maintain a home, build a career and monitor teenagers, among other demands. But, with rare exceptions, you can always find me once a month at the same time and place: meeting with a support group of people who have loved ones with Alzheimer’s disease.

I’m there because my elderly mother has a form of dementia and I assist in her care at a distance. Other participants have spouses with the disease who are far younger and living at home. Yet, there are common bonds that unite everyone who drops into the group, which is sponsored by the Alzheimer’s Association, run by a professional and held free of charge.

What each of us receives in some measure is understanding – the shared knowledge of just how hard it is to care for someone who has memory loss and confusion. The topic might be the disappointment of trying to have a conversation or the frustration of giving an instruction about what’s appropriate to wear that day. We talk about choosing long-term care and pulling off short-term projects, like taking a trip. Since everyone is dealing with someone at different stages of the disease, we know where some people have been –and where others may be headed.

Most of all, we all know we’re doing our best, and we support each other in that.

Being part of a support group can be a very important resource for a caregiver, said Lucy Thomas of Santa Barbara, CA, the co-author of “Making Informed Medical Decisions: Where to Look and How to Use What You Find,”.

“As a caregiver, you deserve help. It’s easy to forget that,” she said. Especially when you are a primary resource for an ill person, “you can lose yourself in the situation. Pretty soon the life you had before is absorbed by the needs of the person you’re helping.”

About 22 million American households include someone who is caring for an ill relative or friend aged 50 or older, according to the Center for the Advancement of Health,, an independent organization based in Washington, DC that promotes recognition of the psychological, social, economic and environmental factors that influence health.

The Center reports that most providers of care for elderly loved ones also work full-time, that more than 70 percent are women, and more than half of caregivers surveyed say they have less time for other family members, vacations and other personal activities. For example, research has shown “the typical caregiver is a 46-year-old employed woman who spends about 18 hours a week caring for her mother, who lives nearby.”

Among its many resources, the center identified a report by Richard Schultz, a professor of psychiatry at the University of Pittsburgh and principal investigator of REACH, the largest initiative to focus on the health of people who provide care to those with Alzheimer’s or related disorders. Schultz says he was involved in a study that showed that 80 percent of people living with a disabled spouse were providing care to that spouse, and that 59 percent of those caregivers reported mental or physical strain associated with care giving.

While helping the elderly and those with Alzheimer’s is a significant issue for caregivers, many people are also involved in helping loved ones in the prime of life, or still in childhood, with diseases such as cancer, diabetes and other serious illnesses.

Thomas, who serves on the board of a breast resource center in Santa Barbara, said the center has set up a family and spouse support group to run at the same time as the one for the people who are suffering with diseases of the breast.

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