In the early stages of Alzheimer’s disease, people experience mild memory loss and confusion. These challenges are significant, but people often maintain much of their normal capability and spirit. Now, a specialized support group program is being formed at the UCSF Memory and Aging Center to help patients learn how to live with the disease and to help family members grieve and adjust.
The program, co-sponsored by the Alzheimer’s Association of Northern California and Northern Nevada, is currently enrolling participants.
“Some 2.5 million patients in the United States currently have a diagnosis of early-stage Alzheimer’s disease,” says Bruce Miller, MD, director of the UCSF Memory and Aging Center. “Their lives, and that of their families, could be enriched by this program.”
“People diagnosed early in the course of the disease often become isolated and stigmatized, even though they may be quite healthy and functional for a number of years,” says Rosalie Gearhart, RN, MSN, a nurse in the UCSF Center. While many can no longer work, they typically live at home, care for themselves and continue to enjoy many pleasurable activities.
“The support group helps to maintain emotional well-being, social support and intellectual stimulation,” explains Robyn Yale, LCSW, a licensed clinical social worker. Yale, a consultant to the Alzheimer’s Association, developed the early stage Alzheimer’s disease support group model and has helped implement it across the United States and internationally.
As a 79-year-old man from another Bay Area support group declared, Yale recalls, “I want people to know I have a lot of life left!”
In the support group, patients receive information, share feelings and experiences with others in a similar situation, and learn coping strategies. “Issues in common include losing one’s driver’s license and adjusting to increasing dependency and changes in relationships with family and friends,” says Yale. “Patients also discuss what they are experiencing in their lives, and how to sustain their capabilities for as long as possible.”
Family members of those with early Alzheimer’s disease meet in a separate support group at the same time and location. They focus on care-giving issues unique to the beginning of the illness, such as restructuring household responsibilities and determining when to assist the person with Alzheimer’s disease and when to encourage independence. Occasionally, the concurrent support groups meet jointly, allowing all participants to interact.
“Patients have reported an increased understanding and acceptance of memory loss and improved mood and morale from the camaraderie of support groups,” says Yale, who is helping establish the program at UCSF.
Likewise, she says, family members report feeling less isolated, gaining knowledge about coping and realizing that planning now for the future needs to include the person with the disease, which will no longer be possible in Alzheimer’s disease’s later stages. Additionally, caregivers learn sooner than they might otherwise, she says, about the range of services available throughout the course of the disease.
To join the group, individuals must have a diagnosis of dementia, be informed of—and at least occasionally be able to acknowledge—the illness, have good communication and social skills, and want to participate in the group.
To be screened for potential participation in the program at the UCSF Memory and Aging Center, patients or their families should contact Heather Gray at the Alzheimer’s Association of Northern California and Northern Nevada at (650) 623-3133.
The Alzheimer’s Association began sponsoring the support group programs in the Bay Area in 1994, says Yale. There are now programs in San Rafael, Berkeley, Lafayette, San Jose, and San Mateo. The San Francisco group is re-starting after a hiatus of several years. For enrollment in programs outside of San Francisco, contact the Alzheimer’s Association of Northern California and Northern Nevada at (800) 272-3900.
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