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Kwamina Walker-Williams didn’t notice her mother’s failing memory at first. At the time, she was focused on her father, whose memory was much worse.
Both were eventually diagnosed with dementia, and Walker-Williams did her best to help them remain at home as long as possible. She ran errands, managed their medications, paid their bills and even did their grocery shopping before she went to work, restocking their kitchen while they were still asleep.
It wasn’t easy, says Walker-Williams, 62, who lives in Chesterfield, just west of St. Louis. But now that her dad has died and her mom is in a long-term care facility, she says she wouldn’t trade that time for anything.
“It is one of the hardest things that you’ll ever do, but one of the most rewarding and beautiful things you can do for your loved one,” she says of caregiving for someone with dementia.
To help support caregivers like Walker-Williams, AARP Missouri has partnered with the Alzheimer’s Association Greater Missouri Chapter to offer several events this year specifically for caregivers of someone diagnosed with Alzheimer’s disease or another form of dementia.
In the fall, caregivers from across the state are invited to attend one of two daylong caregiver conferences in Springfield and Columbia. Topics will include communicating effectively, supporting independence, responding to dementia-related behavior and exploring care and support services.
The goal is to provide caregivers with resources and ways to connect with others who are experiencing the same things, says Sheila Holm, community outreach director for AARP in St. Louis. Caregivers often feel isolated and lonely, Holm says, and interacting with those on the same journey can help them feel validated.
Roughly 120,000 Missourians 65 and older are living with Alzheimer’s disease, and more than 1 in 10 of those age 45 and older have self-reported cognitive decline, according to data from the Alzheimer’s Association.
Alzheimer’s is a degenerative brain disease with no cure that’s caused by damage to the neurons responsible for memory, language and thinking. The proportion of Americans living with the disease or other dementias is expected to grow in coming years as the population ages.
Challenges of caregiving
In Missouri, more than 223,000 caregivers in the state help care for someone who has dementia.
Caregiving can take an emotional and financial toll. Nearly 8 in 10 Americans caring for an adult family member face regular out-of-pocket costs, according to an AARP national survey of 2,380 caregivers in 2021.
Another AARP survey of 1,001 caregivers conducted last year found that 4 in 10 reported being rarely or never relaxed, with those ages 18-34 most likely to suffer from anxiety as a result of caregiving.
Caring for people with dementia can be particularly challenging, Walker-Williams says.
They may repeat things, act aggressive or angry, or forget important people and events, such as the death of a family member, which can be painful. When a loved one says something that doesn’t make sense, Walker-
Williams says, she has learned that trying to correct them just makes things worse.
Instead, she recommends “you just go along on the journey with them.”
“If it makes them happy to talk about it, you just smile and you just add some stuff to the story: ‘I bet that was fun. And what did you wear?’ ” she says.
A collaboration
AARP and the Alzheimer’s Association Greater Missouri Chapter began teaming up three years ago, offering virtual workshops on brain health that attracted hundreds of participants during the COVID-19 pandemic.
AARP helps the local Alzheimer’s Association chapter reach new audiences it would otherwise have a difficult time connecting with, says Jeremy Koerber, the chapter’s community program director.
“We rely on volunteers, and we rely on partners,” he says.
In addition to the caregiver conferences, the two organizations are promoting other events this year, including:
- Brain Matters workshops In June, September and November, these virtual seminars will focus on healthy habits for the brain.
- Unforgettable A theater production about Alzheimer’s showcases the effects of caring for a loved one with the disease. The play performance will take place from 2 to 4 p.m. on Saturday, June 29, at Harris-Stowe State University in St. Louis.
For more information about events on brain health and caregiving, go to aarp.org/mo.
Michelle Crouch, a North Carolina-based writer, covers long-term care and other issues. She has written for the Bulletin for more than a decade.
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