Caregivers, Loved Ones Disagree on Dementia Care

Caregivers and relatives of loved ones with dementia often disagree about their loved one’s treatment plan, according to a report by  Penn State and the Benjamin Rose Institute of Aging researchers did a study on these differences of opinion between the caregivers and the relatives.  They found that the caregivers often do not understand what is important to the relatives of the loved one with mild to severe dementia.

The maze of dementia caregiving

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The research was comprised of 266 pairs of participants.  The pairs were composed of someone with mild to moderate dementia and that person’s caregiver.  The caregiver had to be the primary caregiver and the dementia patient had to still be residing in their own home.  The research was based upon five core values including autonomy, burden, control, family, and safety.  Steven Zarit, a professor at Penn State University said that “Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values”.  The results of the research will appear in the Gerontologist in the August issue.

Decision-making abilities in question

The major reason that caregivers have these disagreements is due to the caregiver deeming the patient incapable of making their own decisions even though they are often capable of much more than the caregiver gives them credit for.  Some caregivers gave the patient more control over making their own decisions and these caregivers were found to be more in tune with the patient’s needs and beliefs.

Once the patient declines and their dementia worsen, family members are left to make the decisions for the dementia patient.  This becomes difficult if the family members do not know the wishes of the patient.

Improving communication is key

Zarit plans to further his research by coming up with protocols to improve communication between the caregivers and their relatives to ensure decisions made reflect the patient’s actual values.

Zarit’s study 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.  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 were also authors on the paper.

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