Experiences and needs of caregivers of persons with dementia in India during the COVID-19 pandemic – A Qualitative Study

Vaitheswaran, Dr. Sridhar; Lakshminarayanan, Miss Monisha; Ramanujam, Dr. Vaishnavi; Sargunan, Dr. Subashini; Venkatesan, Miss Shreenila

OBJECTIVES: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India. DESIGN: Qualitative study using a telephonic semi-structured interview SETTING: A specialist geriatric outpatient mental health service based in a non-governmental organization in Chennai, India. PARTICIPANTS: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months. RESULTS: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services post-pandemic. CONCLUSIONS: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multi-layered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.