Alzheimer's, Dementia & Mental Health
Dementia Patients Living at Home and Caregivers Have
Many Unmet Needs
Cannot cure dementia but there are things that can
keep people with dementia at home longer; Identifying and treating
depression of patients and caregivers may enable them to address their
other unmet needs.
Dec. 19, 2013 - Most people with dementia who live
at home have multiple unmet health and welfare needs, any number of
which could jeopardize their ability to remain home for as long as they
desire, new Johns Hopkins research suggests. The study also suggests
that identifying and treating depression in people with dementia and
their caregivers may enable them to address their other unmet needs.
The researchers say routine assessments of patient
and caregiver care needs coupled with simple fixes in the areas of
safety — grab bars in the bathroom, carpets safely tacked down to
prevent falls, guns locked away — and basic medical and supportive
services could go a long way toward keeping those with dementia from
ending up in a nursing or assisted-living facility.
"Currently, we can't cure their dementia, but we
know there are things that, if done systematically, can keep people with
dementia at home longer," says study leader Betty S. Black, Ph.D., an
associate professor of psychiatry and behavioral sciences at the Johns
Hopkins University School of Medicine.
"But our study shows that without some
intervention, the risks for many can be quite serious."
Previous research has shown that greater unmet
needs among people with dementia are predictive of nursing home
placement and death. Caregiver stress also foretells of nursing home
admission for people with dementia.
The new study, described in the December issue of
the Journal of the American Geriatrics Society, also finds most
caregivers have multiple unmet needs, including lack of access to
resources and referrals to support services and education about how to
best care for their loved one.
Black says that paying for needs assessments and
putting into place preventive safety measures isn't always feasible, and
programs like Medicare don't typically cover them. "If they did," she
says, "it may be far more cost-effective than long-term nursing home
An estimated 5.4 million people in the United
States have Alzheimer's disease and other types of dementia, and 70
percent are cared for in the community by family members and friends.
Most have mild to moderate dementia.
For the study, Black and her colleagues performed
in-home assessments and surveys of 254 people with dementia living at
home in Baltimore and also interviewed 246 of their informal,
They found that 99 percent of people with dementia
and 97 percent of their caregivers had one or more unmet needs. Ninety
percent were safety-related. More than half of the patients had
inadequate meaningful daily activities at a senior center or at home,
and one-third still needed a dementia evaluation or diagnosis.
Unmet needs fell into many categories including
safety, health, meaningful activities, legal issues and estate planning,
assistance with activities of daily living and medication management,
More than 60 percent of people with dementia in the
study needed medical care for conditions related or unrelated to their
dementia, a problem considering that those with dementia are more likely
to have other serious illnesses for which they may eventually be
hospitalized, Black says.
"This high rate of unmet medical care need raises
the possibility that earlier care could prevent hospitalizations,
improve quality of life and lower the costs of care at the same time,"
she says. Interestingly, unmet needs were significantly greater in those
with higher cognitive function, most likely because many of them did not
realize they had dementia and were not yet being closely cared for or
monitored, Black says.
The researchers also found that African-Americans,
those with lower income, those who were more independent in their basic
daily living activities such as being able to feed and clothe themselves
and those with more symptoms of depression had higher levels of unmet
needs. Caregivers with less education and more symptoms of depression
also had significantly more unmet needs. This suggests that identifying
and treating depression in people with dementia and their caregivers may
enable them to address their other unmet needs.
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