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Her mother, Tillie Day,
who has been diagnosed with Alzheimer’s disease and vascular
dementia, is under hospice palliative care. Two weeks before
visitors were banned, she started a decline. She’s got a
picture of her mother from March 10 – the last day she saw
her in person.
“The biggest fear for me
is her declining and her being by herself. It is just
devastating, and it is just hard,” Day said. The facility
has set up videoconferencing, Day said, but
videoconferencing does not work for everyone. “They are
confused, they don’t understand, they can’t hear, you can’t
touch them, you can’t console them, and you do it, but it
does not give you any solace,” Day said.
While the COVID-19 pandemic threatens the health of millions
in this country and around the world, the novel coronavirus
presents unique challenges for more than five million
Americans living with Alzheimer’s and their caregivers.
For Ohio’s 600,000 Alzheimer’s caregivers, the coronavirus
outbreak and the stay at home order issued by the Ohio
Department of Health and the governor’s office impacts the
heart of day-to-day care for loved ones whose minds and
bodies are diminished by the ravages of this fatal brain
disease.
Most notably, public health strategies aimed at limiting
contact with others is nearly impossible for people living
with Alzheimer’s and other dementias, who rely on family
caregivers and others to live their daily lives. This
reality affects these individuals across all settings,
including home, adult day services, residential and assisted
living facilities and nursing homes.
“Caring for someone with Alzheimer’s or other dementias is
exceptionally demanding,” said Eric VanVlymen, who oversees
all of Ohio’s Alzheimer’s Association chapters. “The level
of assistance provided by caregivers of people with
Alzheimer’s tends to be extensive, compared with caregivers
of other older adults, and caregiving responsibilities often
persist for many years – even decades.”
To support caregivers during COVID-19, the
Alzheimer’s Association offers dozens of virtual caregiver
support groups throughout the state, care consultations and
education programs that can be accessed via telephone or
through online videoconferencing at home. The Association’s
24/7 Helpline at 800.272.3900 provides around-the-clock
support.
The Impact of Alzheimer’s on African Americans
Terri Littlejohn has been caring for her mother, Dorothy
Crane, 86, ever since her mother moved into her home in
2002.
Alzheimer’s disease took Terri Littlejohn’s grandmother.
Eight siblings of her grandmother – out of a total of 13
kids - had Alzheimer’s. Mrs. Crane also has the disease. “My
mother has been living with us 18 years. I’ve been taking
care of her as long as she had been taking care of me as a
child. Now the roles are reversed and she’s the child,”
Littlejohn said.
African Americans are about twice as likely as whites to
have Alzheimer’s or
another dementia. Even though African Americans are more
likely to get Alzheimer’s, studies show that African
Americans are less likely to have a diagnosis and when
African Americans are diagnosed, they are typically
diagnosed in the later stages of the disease, when they are
more cognitively and physically impaired.
As soon as her mother was diagnosed in 2008, Day connected
with the Alzheimer’s Association. “There is just a huge
underrepresentation of people of color (accessing services)
and that is just maddening to me,” she said. “You have to
have help, if not you will isolate yourself.”
Family and Friends Provide Most of the Support
Eighty-three percent of the help provided to older adults in
the United States comes from family members, friends or
other unpaid caregivers, according to the Alzheimer’s
Disease Facts and Figures report. Nearly half of all
caregivers (48%) who provide help to older adults do so for
someone with Alzheimer’s or another dementia.
“I do basically everything,” Littlejohn said. “Self-care,
bathing, I have to pick out her clothes because if not, she
will wear the same clothes. She does not cook, and I help
with her medication.”
“Being a caregiver, I have struggles with it,” Littlejohn
said. “I’ve always had to take care of her. Should I be mad?
Should I be angry? Should I be happy? It’s a struggle at
times,” she said. “You’ve got to do it out of love so that
you won’t be mad, angry or sad. If you do it out of love, it
gets easier, but it’s still hard.”
Alzheimer’s Association
Caregiver Support Services
The Alzheimer’s Association in Ohio provides
around-the-clock support for individuals dealing with
Alzheimer’s disease and other dementias through
community-based services, 24/7 Helpline and resources
available at alz.org
24/7 Helpline:
800.272.3900
Individualized Care
Consultations
800.272.3900
Website:
Alz.org
Online Educational
programs and support groups
Alz.org/crf
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