Faith Simushi1, Jeremy Tanner3, Stanley Zimba2, Deanna Saylor4
1Neurology, University Teaching Hospital, 2University Teaching Hospital, 3UTHSA - Biggs Institute for Alzheimer's, 4Johns Hopkins Hospital
Objective:
To assess the prevalence of unmet care needs of community-based people with dementia (PWD) and their informal caregivers in Lusaka, Zambia
Background:
With a growing number of PWD across the world, identifying a source of regular caregiving for PWD has become a routine practice. In lower-income settings, informal caregivers assume this responsibility and serve as an interface between PWD and health services. PWD together with their caregivers have needs that relate to care, services and support which increase the risk of undesirable health outcomes.
Design/Methods:
This was a cross-sectional study of pairs of PWD and their primary informal caregiver. Participants underwent interviews to assess dementia-related needs using the Johns Hopkins Dementia Care Needs Assessment. Bivariable and multivariable regression analyses were conducted to identify demographic, clinical, functional and quality of life correlates of unmet needs as well as identify the independent predictors of unmet needs among PWD and their informal caregivers
Results:
The mean proportion of unmet needs for PWD was 57% while that of caregivers was 62%. Significantly higher unmet needs were associated with having attained less than a tertiary education and having an unknown type of dementia. PWD had unmet needs in the domains of meaningful activities, legal issues and advance care planning, and resource referral while caregivers had the most significant unmet needs in the domains of community resources, respite, and mental health counseling.
Conclusions:
The study identified that PWD in Zambia and their informal caregivers had a high prevalence of unmet care needs in multiple domains, highlighting the need for a more comprehensive and holistic approach to dementia care in resource-limited settings like Zambia. Future studies of locally contextualized interventions to improve care for PWD and their informal caregivers are urgently needed in Zambia and other similar settings.