Dementia caregivers

Metro Creative

With calls coming into the Alzheimer’s Association of Western New York 24/7 helpline, COVID continues to be a major challenge for care partners already struggling with the demands of providing day-to-day care for someone they love who has Alzheimer’s disease or other dementia.

With calls coming into the Alzheimer’s Association of Western New York 24/7 helpline, COVID continues to be a major challenge for care partners already struggling with the demands of providing day-to-day care for someone they love who has Alzheimer’s disease or other dementia.

Katie Badeau, director of care consultation for the Alzheimer’s Association, said there is an added layer of complexity, given the nature of their caregiving role.

“There is a difference between caregiving for other diseases versus Alzheimer’s disease or for dementia,” she said. “Some of the things we’ve been seeing through our 24-hour dementia helpline, is a lot of folks are receiving less or irregular assistance. Friends, family, neighbors, church members that used to come in and give that informal support for breaks, and running errands, taking them places — a lot of that has decreased or dropped off over the concern of spreading the virus.

“And rightfully so, but that adds to increased isolation,” she continued. “That adds to already high levels of caregiver stress and strain.”

Those suffering from dementia had previously been using formal support systems, like an adult daycare or having health aides coming to the house. That routine, Badeau said, was really important to help them maintain their level of functioning and independence.

Now, however, with the day centers shutting down and not reopening, and families less interested in bringing home health aides into the home due to the virus, that routine has been disrupted. This results in increased wandering, confusion or disorientation.

Badeau said with a disease like dementia that is 24/7, a social support is needed — which runs counter to CDC guidelines for COVID. Not only that, but not everybody is comfortable with the technology the Alzheimer’s Association is trying to use like e-health or televisits.

“I would say, too, folks with dementia, they may have an impaired ability to follow or remember instructions on social distancing,” she said. “When you have memory loss or cognitive impairment, knowing to do those things is difficult. And the caregiver in charge of explaining it to them and remind them, that’s an added stress as well.”

Cognitive impairment can impede communication in general, Badeau added. In a virtual platform, trying to interact with those who have cognitive impairment can be difficult and contributes more to the isolation even if technology is available.

There have been a lot of new caregivers who have made themselves known to the Alzheimer’s Association over the last few months by reaching out through the Alzheimer’s Association 24-hour hotline. That is the right place to go, Badeau said, because it’ll link caregivers with resources in their area.

The hotline is 1-800-272-3900.

Caregivers looking for guidance, compassion and time away can join the following support groups:

• Genesee County: By phone on the third Thursday of every month at 1 p.m. There is also a meeting accessible by phone or Zoom on the third Wednesday at 7 p.m.

• Livingston County: Third Monday of the month at 1 p.m.

• Orleans County: One held by phone the first Tuesday of the month at 11 a.m. and third Friday of the month at 1 p.m.

• Wyoming County: One held by Zoom the first Monday of the month at 10 a.m.

While there are no fees, pre-registration is a requirement, by calling 1-800-272-3900 at any time. Online registration is also an option at alz.org/CRF. If you are unfamiliar with the Zoom app, call the chapter office for a quick and easy practice session at (716) 626-0600 extension 313.

Badeau said if anyone sees symptoms of memory loss, confusion or disorientation and they know if something isn’t right, or if they have an official diagnosis, to call or visit www.alz.org/wny sooner than later to ask for help.

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