Support groups grow for area Alzheimer’s caregivers
Support groups for Alzheimer’s caregivers are growing in Winchester’s assisted living facilities.
“Last year there was one support group and now we have three,” said Bob Bell, programs and services manager for the Alzheimer’s Association National Capital Area Chapter in Frederick County and Winchester.
Trained facilitators meet for about an hour with caregivers once a month and openly share mutual challenges and frustration and offer support.
“It’s a place where they can cry, be sad,” said Bell. “It is very awesome to see because being a caregiver can be lonely and very stressful. They often feel they are on their own without support.”
While 60 percent of caregivers are women, “not everyone takes advantage of the support groups,” said Bell. “Men need it as much as women.”
Sometimes jokes are made about those with Alzheimer’s and their memory loss, which Bell does not appreciate.
“They can be very insensitive,” he said.
Bell notes there is always a personality inside of someone suffering with Alzheimer’s.
He tells the true story of a woman with Alzheimer’s who, after eating breakfast, would return to her room and go to bed, thinking she had just eaten supper.
Despite conversations, she continued the habit and the staff decided to try and help by locking her door after she went to breakfast, hoping she would then stay up and realize it was breakfast, not dinner, she had eaten.
However, when they did it and she was accompanied back to the room and confronted with the locked door (she didn’t have a key), she pulled out a swizzle stick, and like a practiced locksmith, picked the lock and opened the door.
“Never underestimate someone with dementia,” said Bell.
Free and open to the public, those wanting to attend a support session can call 800-272-3900 to verify meeting information, obtain directions or learn more about the group.
Plans are underway this year to officially open satellite offices in Winchester and Front Royal and hold another Walk to End Alzheimer’s Northern Shenandoah Valley.
Last year’s Walk raised more than $39,000 for Alzheimer’s research. Registration for this year’s Walk is available at www.alz.org/nca.
Popular awareness of Alzheimer’s has been steadily increasing as baby boomers age. Still Alice, the movie nationally released this January, is described as being at once beautiful and terrifying, a moving and vivid depiction of the life of a psychology professor with early-onset Alzheimer’s disease. Julianne Moore won an Oscar last month for her portrayal of Alice.
Alzheimer’s is a type of dementia associated with aging that causes problems with memory, thinking and behavior, develops slowly and progressively worsens over time, often becoming severe enough to interfere with daily tasks.
Fundraising to raise the millions needed for the research to halt and possibly cure Alzheimer’s is a priority for the association.
Lisa Genova, a Harvard-educated neuroscientist who self-published Still Alice in 2007 [it later was published as a hardback book in 2009 by Pocket Books and became a national best-seller] said she hoped the book would help readers gain a “compassionate awareness for what it feels like to live with Alzheimer’s” and she has endorsed the association’s fundraising efforts.
There is no absolutely definitive test to determine if someone has Alzheimer’s.
Most diagnoses are based on a battery of tests administered by a neurologist.
“Unfortunately, the only positive way to tell 100 percent is with an autopsy,” said Bell, “although PET [positron emission tomography] scans of the brain are considered 90 percent reliable for diagnosing Alzheimer’s.”
Locally, the free caregiver support groups are held monthly at Spring Arbor, The Willows and Westminister-Canterbury.
“If a facility is willing to host it, there is a very simple contract,” said Bell.
Cindy Schelhorn, senior director of Communications and Marketing for the nonprofit Alzheimer’s Association National Capital Area Chapter, said they have “just opened a satellite office in Winchester and anticipate doing a formal opening within the next few months.”
Located at 411 N. Cameron St., Room 267, office hours currently vary and should be verified by calling 800-272-3900 or email Bob Bell at firstname.lastname@example.org.
Nationally, almost two-thirds of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one third report symptoms of depression.
Bell, who also supports the Alzheimer’s Association’s Northern Shenandoah Valley efforts in Warren, Clarke, Fauquier, Loudoun and Rappahannock counties, lived in England where he worked as a geriatric social worker for eight years in adult protective services. He noted a lack of staff training and awareness about elderly care.
“I have a background in professional training and I try to educate caregivers to look beyond the disease,” said Bell. “I tell them there is still a person in there and someone with Alzheimer’s or dementia may surprise them.”
• It is the sixth-leading cause of death in the United States and the only one of the Top 10 causes of death that cannot be prevented, cured or even slowed. It is the only one of the Top 10 with no known cure.
• Those diagnosed with Alzheimer’s live an average of eight years after their symptoms are noted by others.
• No treatment is available to stop Alzheimer’s from progressing, but there are drug and non-drug treatments that may help with both cognitive and behavioral problems.
• The 10 warning signs are posted on the Alzheimer’s Association website, www.alz.org. Everyone may experience one or more of them in different degrees and if noticed, they should not be ignored. See a doctor since early detection can help you get maximum benefit from available treatments, plan for the future and secure help for yourself and loved ones.
• The most common early symptom is difficulty remembering newly learned information.
• More than 5 million Americans have Alzheimer’s and it is estimated there are 15.5 million family and friends who provide unpaid health care.
• Every 67 seconds someone develops Alzheimer’s and approximately 500,000 people die of it every year.
• Nearly one in every $5 spent on Medicare is for Alzheimer’s or another dementia.
For definitive information about Alzheimer’s go to the Association’s website: www.alz.org.
There are three support groups in Winchester for caregivers of people with Alzheimer’s disease conducted by trained facilitators. The schedule:
• Spring Arbor Assisted Living Facility: 2 p.m., the second Tuesday of the month.
• The Willows Assisted Living Facility: 2-3 p.m. the third Wednesday of the month.
• Westminster-Canterbury Continuing Care Retirement Community: 1 p.m. the third Thursday of the month.
Professional training for caregivers on the subject of “Improving Communication” is scheduled at Spring Arbor on April 16 and assisted by the Virginia Department of Social Services.
For information or to register call 800-272-3900.