Early Stage Support Groups Help People Cope With Dementia

For many people with Alzheimer’s disease and other types of dementia, it is the early stages that are most frightening and upsetting.

It is during the early stages that people often begin noticing slips in their memory and other disturbing cognitive changes. Common warning signs include getting lost while traveling a familiar route, forgetting words in the middle of a sentence and difficulties with performing everyday tasks.

A medical confirmation can add to these feelings of panic and “what is happening to me?”
“Most people are pretty taken aback when they receive an Alzheimer’s diagnosis,” said Judy Filippoff, early stage program coordinator for the Bay Area chapter of the Alzheimer’s Association of Northern California and Northern Nevada. “People often know someone else who had Alzheimer’s, and they don’t want what they saw to happen to them.”

The diagnosis can be particularly overwhelming for younger people. “We see people in their 40s and 50s who get a diagnosis while they are still working and taking care of children,” said Filippoff. “These people have the added stress of wondering how they’re going to handle their finances and take care of their families when their disease progresses.”

One step people with early stage dementia can take to reduce their anxiety and come to terms with their condition is to join a support group.

Early stage support groups, such as those offered by the Alzheimer’s Association at various Bay Area locations, give people diagnosed with Alzheimer’s disease and other forms of dementia opportunities to discuss their feelings and experiences with other people who know what they’re going through and who face many of the same challenges.

Led by experienced facilitators, early stage support groups “provide a forum to learn more about the illness, deal with emotional reactions, problem solve and cope with current changes and plan for the future,” according to materials provided by Robyn Yale, a San Francisco-based clinical social worker who specializes in early stage dementia. Yale’s book “Developing Support Groups For Individuals With Early-Stage Alzheimer’s Disease” has served as a model for early stage support groups developed around the world.

Attending a support group can bolster a person’s self-esteem and confidence, decrease feelings of embarrassment and stigma, and build hope among participants. “At their first group meeting, a person often meets someone who was diagnosed two years earlier and is not miserable,” said Filippoff. “This helps them gain acceptance of their situation and to realize that ‘hey, maybe I can live with this condition and stay safe and continue to live a full and meaningful life.’”

According to one person who attends a Bay Area support group sponsored by the Alzheimer’s Association, “I was so frightened when I heard the diagnosis (of Alzheimer’s Disease). I ran out of the doctor’s office. I just wished a truck would run right over me, then back up and do it again …Now I feel like I will be able to cope for a long, long time. I have met people here that have had Alzheimer’s disease longer than me, and they are still enjoying life, still coping. I can do it too!”

Another benefit of support groups is the sense of camaraderie that often develops among participants. As one person put it, “I have made the best friends here. This group keeps me going. It gives me something to look forward to every week. No one cares if I repeat myself.  They just tell me that I am ‘part of the club.’”

For many people with dementia, it is easier and less awkward to talk with other support group members than to discuss their feelings and experiences with friends and family members. “It’s often difficult to share experiences with friends. Friends often pull away because they are frightened. It reminds them that this could happen to them,” said Filippoff. “It can also be difficult and uncomfortable for people with Alzheimer’s to talk with their families, often because they don’t want to burden them or frighten them.”

Early stage support groups can also be therapeutic for family members, who often struggle to come to terms with the memory loss and behavioral changes experienced by a loved one with dementia. Family members who care for people with dementia are often stressed out, sleep deprived and unfamiliar with the community resources they could tap for help. Early stage support groups often provide families with information about dementia, how the disease progresses and support services in the community.  

“I felt like I was at the end of my rope with my mom. I was exhausted from the stress of trying to correct her all the time, trying to keep her as she was before,” said one person whose mother attends an early stage support group in the Bay Area. “I learned that this was not fair to her.  Now I don’t tell her when she repeats herself or makes a mistake, and our life together has improved so much. I have learned so much from the people in this group.”

The early stage support groups sponsored by the Alzheimer’s Association around the Bay Area typically meet once per week for eight weeks at a time. Participants often continue to attend these groups for months or years, until their dementia “progresses to the point where they forget they have the disease or the support group loses meaning for them,” said Filippoff.

To join an early stage support group, participants must have a diagnosis of Alzheimer’s disease or another type of dementia, such as Lewy Body, frontotemporal or vascular dementia. Members must also acknowledge and understand the diagnosis, desire to be part of the program and be able to discuss their experience. People with behavioral or psychological problems that would impact the group are excluded.

A 2007 study, supported by the National Institutes of Health (NIH) and published in the journal Neuroepidemiology, suggests that about 3.4 million Americans ages 71 and older – one in seven people in that age group – have dementia, and 2.4 million of them have Alzheimer’s disease. Other research has found that the prevalence of Alzheimer’s disease doubles every five years beyond age 65, and that about 4.5 million Americans – the vast majority ages 90 and older – have Alzheimer’s disease. Alzheimer’s is the most common type of dementia, accounting for about 50 percent to 70 percent of all dementia. About one person in every 1,000 below the age of 65 develops dementia, according to Alzheimer’s Disease International (www.alz.co.uk). Any dementia that begins before age 65 is known as “younger onset” or “early onset” dementia.

For information about early stage support groups sponsored by the Alzheimer’s Association in Northern California and Northern Nevada, see http://www.alz.org/norcal. The Alzheimer’s Association’s website offers a wide variety of information about AD, including information resources. The organization sponsors support groups at various locations throughout the Bay Area, including Berkeley, Mountain View, Lafayette, San Jose, San Rafael, Hayward and San Francisco. Judy Filippoff, MSW, the Alzheimer’s Association’s early stage program coordinator, can be reached at judy.filippoff@alz.org. Robyn Yale, LCSW, an expert on early stage dementia and author of “Developing Support Groups For Individuals With Early-Stage Alzheimer’s Disease,” can be reached at robynyale@yahoo.com. Information about dementia and resources geared for caregivers is provided by the Family Caregiver Alliance at http://www.caregiver.org.

(This article originally appeared in the Fall 2008 issue of Bay Area Summit)

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