Family caregivers of people living with dementia were experiencing significant loss, isolation, and stress even before the pandemic began.
A new study found that the pandemic amplified these feelings and intensified challenges experienced by families living with dementia. Melissa Harris, PhD, RN, a Duke National Clinician Scholars Program (NCSP) scholar, led the study at the University of Michigan during her doctoral training.
Prior research shows dementia is a progressively debilitating disease that impacts the health of people living with dementia and their families. Harris interviewed 21 family caregivers and care partners of people living with dementia to better understand how their lives were altered by the pandemic.
This study is among the first to focus on the lived experiences of family caregivers of people with dementia during the pandemic. Interviews occurred in Aug. – Nov. 2020, before vaccines were available.
Restrictions to dementia support services and other activities during the pandemic severely limited caregivers’ own and their relatives’ opportunity to engage with life.
Brenda Roberts, a care partner and executive director of the National Council of Dementia Minds (a non-profit organization committed to transforming how the world views neurocognitive disorders) stated, “The pandemic has made society keenly aware of the importance of social interaction for our mental health and overall well-being. Personally, it has provided me a glimpse of the social isolation experienced by persons living with dementia.”
Caregivers described strategies they used to promote their own and their relatives’ well-being, but most identified that these strategies were often not enough to balance the negative effects of the disease and the pandemic. Although virtual support groups and other virtual resources were available later in the pandemic, family caregivers highlighted that the lack of in-person services played a critical role in the isolation and loss they experienced.
"The pandemic definitely made it more challenging. More challenging just to manage well-being and happiness, let alone address any behavioral manifestations or communications.”
Many caregivers also described challenges their relatives experienced in obtaining a clinical diagnosis of dementia, which they perceived as being due to lack of dementia specific education and knowledge among healthcare providers. Most also reported that they received very few referrals and recommendations from clinicians to help them and their relatives live well with dementia at home.
Key takeaways for clinicians?
Clinicians caring for older adults must assess for cognitive impairment and make appropriate referrals to dementia care specialists and support services to address the multidimensional needs of families living with dementia. The health of the person diagnosed, and their caregivers must be addressed, particularly now as families may be experiencing long-term physical and emotional impacts of the pandemic.
Relevant resources:
Study abstract: https://journals.sagepub.com/doi/full/10.1177/01939459211055773
National Council of Dementia Minds: https://dementiaminds.org/