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 A recent study from Penn State and the Benjamin Rose
Institute on Aging concludes that "caregivers, too often, fail
to understand what is important to their relatives suffering with
mild to moderate dementia, which results in frustration for the patient."
The researchers found a difference in perception about the
amount and quality of the care provided between many caregivers and
their patients and zeroed in on the major source of difference being
this lack of understanding by caregivers of the needs of the
patients.
"Family caregivers often become the surrogate
decision makers of relatives who have dementia, so the two groups
need to communicate well and to understand each other," said
Steven Zarit, a professor and head of the Department of Human
Development and Family Studies at Penn State and the study's leader.
"Unfortunately, in our study we found that family
caregivers and their relatives often do not understand each other
well when it comes to the values they hold about giving and receiving
care."
The team interviewed 266 pairs of people, each
composed of an individual with mild to moderate dementia and his or
her family caregiver. To participate in the study, caregivers
had to be the primary family caregiver of the dementia patient and
the dementia patient had to be living in his or her own home. The
researchers interviewed members of the pairs separately, asking
questions related to how much value they place on five core values:
autonomy, burden, control, family and safety.
For example, one question focused on the level of
importance a dementia patient gave to the ability to spend his or her
own money in the way he or she wants. "Our results
demonstrate that adult children underestimate the importance that
their relatives with dementia placed on all five core values,"
said Zarit. "For example, the person with dementia might
think it is very important to continue to be part of family
celebrations, but his or her caregiver might not."
According to Zarit, a major reason for differences in
these perceptions is that caregivers come to view people with
dementia as unable to make their own decisions about daily life.
"That is something that does happen as the disease
progresses, but the people in our study remained capable of making
decisions for themselves and could express their values in a clear
and direct way," said Zarit. "Caregivers who still saw the
person with dementia as able to direct his or her daily life were
also more in tune with that person's values and beliefs."
This lack of agreement about how care is provided has
ominous implications for when the dementia worsens. "As people's
cognitive abilities decline," Zarit said, "they can no
longer express clearly what they want. Family members have to act as
surrogate decision makers, but if they don't understand the dementia
patients' preferences about care, they may not be able to make the
best choices."
The team's results will appear in the August issue
of The Gerontologist. Zarit plans to continue this
research by developing and evaluating protocols for improving
communication between caregivers and their relatives to ensure that
medical and social decisions are made in such a way that reflect
dementia patients' actual values. This work was supported by
the Administration on Aging, the Robert Wood Johnson Foundation, the
AARP Andrus Foundation, the Retirement Research Foundation, the
National Institute of Aging and the National Institute of Mental
Health. Other authors on the paper include Allison Reamy and Kyungmin
Kim, both graduate students in human development and family studies
at Penn State, and Carol Whitlatch of the Benjamin Rose Institute on
Aging.
This
article can be found in its entirety at http://www.seniorjournal.com/
NEWS/Eldercare/2011/20110801-DementiaPatientsUnhappy.htm
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