Two
surveys released today — the start of Alzheimer’s disease month — examine the
emotional toll the condition places on caregivers, and their need for
greater support. The results are both revealing and alarming.
The online survey
by the Alzheimer’s Association also delves
into the serious lack of preparedness among the public, finding that while
a full 70 percent of the 1,502 adult participants feared being unable to
care for themselves and live independently as they aged, only 24
percent were planning financially for their future care needs. A
mere 20 percent reported ever speaking with a family member about their
care preferences.
Two in
every three (64 percent) of the 25o survey respondents currently caring
for someone with Alzheimer’s or dementia also agreed to feeling “isolated
or alone” in the task, and more than four in every five (84 percent) said they
needed more help with caregiving, especially from other family members.
Those
findings were echoed in the survey by Home Care
Assistance, which focused on caregivers to determine whether
those caring for people with dementia spend more time giving care, and are
more stressed doing so, than those assisting people with other
chronic illnesses.
Specifically,
this survey — of
670 family caregivers performed May 8–11 by Research Now — found that
26 percent of dementia caregivers spent more than 25 hours a week caring for
their family member. The number among non-dementia caregivers, spending an
equal amount of weekly time, was 18 percent.
At the
bottom were those spending less than five hours a week caregiving. They made up
31 percent of non-dementia caregivers, and 14 percent of dementia caregivers.
Dementia
caregivers were seven times more likely than non-dementia carers to experience
daily feelings of exhaustion — physical, emotional and mental — triggered by
their responsibilities.
They also
experienced extreme stress linked to their caregiving tasks three times more
often than non-dementia carers. This type of exhaustion is commonly referred to
as caregiver burnout.
It’s a
situation not likely to be resolved easily, with the Alzheimer’s Association
survey finding that, while a wide majority (74 percent) of respondents
preferred a paid caregiver rather than burdening a family member, only 15
percent were financially prepared to afford one.
“Very few
people are financially prepared for the cost of caring for someone with
Alzheimer’s, which is made worse by the fact that most Americans lack adequate
savings for retirement, and many have none,” said Beth Kallmyer, vice president
of Constituent Services for the association. “The added burden of
Alzheimer’s care … is going to directly impact them and the public
healthcare system. With a large segment of the American population reaching
high-risk years for Alzheimer’s, we’re entering a crisis.”
An
estimated 15 million people in the U.S. are now caring — unpaid — for an
Alzheimer’s or dementia patient, the association reports. Meanwhile, the
number of Americans 65 and older with Alzheimer’s is expected to
almost triple by 2050, from 5.5 million to a projected 16 million.
In its
survey, the Alzheimer’s Association also looked specifically at the strains
caregiving can place on families, finding the responsibilities either
strengthen ties or tear them apart. Siblings often were most affected, with 61
percent agreeing they were given insufficient support by other siblings in
providing care, or with sharing the burden (53 percent). Many (43 percent) felt
their efforts were undervalued by others in their family, or by the patient (41
percent).
But it
also found that 35 percent of caregivers felt deeper bonds with their family
because of the responsibilities they had assumed, with particular closeness
expressed between spouses affected by the disease.
The Home
Care Assistance survey homed in on the various stresses experienced by
caregivers. To better understand what is most stressful in caring for someone
with dementia, the survey asked what was most stressful of five events:
Communicating with the loved one; juggling job and caregiving responsibilities;
learning how to properly provide care; making financial decisions on behalf of
the loved one; and watching the family member decline.
Among
dementia caregivers, 38 percent stated it was most stressful to watch a loved
one decline. Trying to balance work and caregiving responsibilities came in
second.
There
were differences, however, in how men and women handled their responsibilities
and rated stress factors. Men were 21 percent more likely than women to be stressed
by juggling work and caregiving.
But the
emotional toll on women is also high, as many care for children while managing
a family member with dementia. According to the survey, these women were twice
as likely as men to feel extreme guilt for not seeing to the needs of their own
children and families.
A similar
difference was seen when comparing women who cared for family members with
dementia, and those who care for loved ones with other conditions. Women taking
care of a dementia patients were 61 percent more likely to feel extreme guilt for
neglecting their children or families.
“We’re
facing an impending health crisis not only for the tens of millions living with
Alzheimer’s and other forms of dementia, but also for the loved ones that care
for them,” said Lily Sarafan, CEO of Home Care Assistance.
“Reliable data on the
spectrum of family caregiver experiences, as well as solutions for caregivers
to effectively manage their own health and wellness, are essential components
of the broader care ecosystem. Our hope is that breathtaking scientific
advances and lifespan gains are accompanied by thoughtful leadership and
policies to address the realities of caregiving,” Sarafan added.
SOURCE: Alzheimers News Today, Magdalena Kegel
