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  2. I Was Not Expecting That! Ethical Dilemmas in Alzheimer’s disease and Alzheimer’s Disease Related Dementia Caregiving Research

I Was Not Expecting That! Ethical Dilemmas in Alzheimer’s disease and Alzheimer’s Disease Related Dementia Caregiving Research

Background: Alzheimer’s disease and Alzheimer’s disease Related Dementias (AD/ADRD) affect all aspects of life and relationships for those involved. Female family caregivers constitute an informal (unpaid) and critical workforce who provide 83% of the care for persons living with AD/ADRD in the community settings (Alzheimer’s Association, 2021). In 2020, U.S. informal caregivers provided an additional 400 million hours of unpaid care valued at $244 billion (18.6 billion hours) in comparison with 2017 (Alzheimer’s Association, 2021). Consequently, family caregivers of persons with AD/ADRD report a loss of mental, emotional, physical health 50% more often than other caregivers (Alzheimer’s Association, 2021). Family caregiving of a loved one with AD/ADRD is often counterintuitive and based on trial and error. Caregivers cannot subjectively understand their family members’ challenges with AD/ADRD. Thus, either partner of the AD/ADRD caregiving dyad may be at risk for injury or harm. Family dementia caregiving is often challenging due to the neurocognitive deficits associated with dementia, especially in later stages. The typical slow progressive nature of AD/ADRD often obscures a family dementia caregiver’s ability to identify important functional neurocognitive changes.

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Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Sage
ISBN/ISSN
10547738
Publication Year
2021
Issue Number
5
Journal Titles
Clinical Nursing Research
Volume Number
30
Start Page
527
End Page
528