Family Caregivers' Experiences of Long-Term Care Residents Living With Dementia During the COVID-19 Pandemic: An International Grounded Theory Study.
Kristen Abbott-Anderson, Yoko Higami, Saika Yamauchi and 4 others
PMID 39749859WHAT IT FOUND
Family caregivers of people with dementia in long-term care described lockdowns as painful exclusion.
They fought to keep connection, distrusted inconsistent care, and found video calls inadequate without staff support.
Key findings
01The core experience was caregivers negotiating access to maintain relational continuity with their loved one.
02Caregivers felt excluded, upset and worried when visiting, communication, and information were restricted or inconsistent.
03Online communication was insufficient for the nonverbal connection needed by people with dementia, and staff support was needed during remote visits.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The authors said delays in ethics consent, changes in research staff, and continued restrictions limited recruitment and produced a small sample. The authors said categories and themes may not have been fully saturated and they were unable to develop a theory. The authors said all participants were members of the same blood or legal family, which may narrow the definition of family caregiver. The authors did not re-contact participants to confirm findings because of apparent stress. Only caregivers over 18 were included, though the authors noted under-18s may also provide care.
Declared interests
The authors declared no conflicts of interest. The named funder was the Daiwa Anglo-Japanese Foundation.
The easy way to misread this
Do not read this as proof that visitation bans caused residents' decline. The study reports caregivers' experiences and perceptions, not measured outcomes or a comparison of visitation policies.