Perceived unmet needs of informal caregivers of people with dementia in Singapore

Background: This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers’ needs checklist based on the findings. Methods: Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers’ experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers’ perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers’ needs for dementia. Results: The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed. Conclusions: Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.