Understanding caregiver profiles of older adults reporting cognitive decline: A descriptive study from North India

Abstract

AbstractBackgroundAs India gets closer to an expected 7.6 million dementia cases by 2030, families are tasked with care‐giving in the absence of affordable healthcare and adequate health systems. Those most impacted include elderly caregivers, and are mostly female spouses of persons with dementia. With transitions from joint family systems to more nuclear structures due to urbanization and migration, understanding characteristics of family caregivers will be critical to developing adequate support systems and enabling better home‐based care in urban areas.MethodScreening camps were conducted in 8 locations across a North Indian urban area over 7 months, including a government hospital, communities, and senior centers. Assessment measures involved a brief cognitive assessment and screening for mental health, neurological, and preexisting medical issues. Sociodemographic information was collected from the accompanying family member. Both caregiver and the person reporting cognitive complaints were provided information about dementia symptoms with referrals to neurologists, psychiatrists or medical professionals based on screening results.ResultA total of 194 persons (112 men, 82 women) were screened after reporting subjective cognitive decline; on evaluation, 4% and 5% had symptoms indicative of dementia and definite cognitive decline, respectively. Findings also indicated that 58% of participants also had symptoms of depression and anxiety, causing concern for caregivers. Majority of participants were accompanied by a family member and only 7 participants lived on their own. Sociodemographic information was collected for a total of 187 caregivers (58% women, 42% men). 67% of caregivers were aged 55 years and above, indicative of caregivers themselves ageing whilst having to take care of an aging relative; 33% were aged 20‐34 years. 97% were immediate family members taking on primary care‐giving responsibilities (51% wives, 26% husbands, 16% sons, 4% daughters) indicating high risk for caregiver burden. More than 75% of those surveyed were educated above high school, indicating rising levels of educational achievement in urban areas. 35% of caregivers were homemakers and women, highlighting necessity for low‐cost or cost‐effective models of home‐based care services.ConclusionHealth systems and support mechanisms for the elderly are underdeveloped in India and require effective home‐based care models taking into consideration caregiver characteristics.