Abstract
Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer's Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (r s = .51, p < .001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80) = −4.37, p < .001) and more burden on the ZBI (t(80) = −2.68, p = .009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8) = −2.22, p = .034) and more burden on the ZBI (t(80) = −2.65, p = .010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.
Highlights
Alzheimer’s disease and other dementias are a growing public health crisis
The results suggested that caregiver stigma increased caregiver burden for those caring for family members with Alzheimer’s disease more than either layperson or structural stigma
The caregivers differed on age, with spousal caregivers being 20 years older, on average, than adult child caregivers
Summary
Alzheimer’s disease and other dementias are a growing public health crisis. There are currently 5.3 million people who suffer from Alzheimer’s disease. If no cure or prevention for Alzheimer’s disease is found, the prevalence is estimated to more than triple by 2050 [1]. Alzheimer’s profoundly affects individuals with the disease and the caregivers who dedicate copious time, energy, and emotion to caring for their loved ones with Alzheimer’s. It can be a devastating illness for caregivers who bear its emotional, physical, and financial burdens. In 2014, nearly 16 million caregivers provided 18 billion hours of unpaid care to those with Alzheimer’s and other dementias [1]. Eighty-five percent of caregivers for the elderly in the United States are family members [2]
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