The support needs of family caregivers of persons with dementia in India: Implications for health services

Abstract

The World Alzheimer's Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people's homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

“…[40] The same phenomenon also applies to caregivers. For example, the results from Kiling et al [38] and Lamech et al [57] both revealed how the lack of information for caregivers can result in neglect, and ultimately more complicated health conditions or even death, for the person with a disability.…”

“…Some of these barriers are disability specific, depending on the type of impairments experienced. An example here is the absence of ramps for those with certain physical impairments resulting in difficulties entering the building, or lack of sign language interpreters for people with hearing impairment [38,41,45,48,49,54,[56][57][58]. This barrier is illustrated by an example of a person with visual impairment from Kenya, discussing the shortage or lack of sign language interpreters and guidance at the health facility:…”

Support groups for family caregivers of persons with dementia in India

“…A forum-like support group in this context provides a space to gain specialized knowledge that can equip caregivers to become more able and confident care providers. This need for specialized dementia knowledge and information on support services is reflected in the findings from a recent study from India (Lamech et al, 2019).…”

“…This is further complicated by the fact that a large proportion of the population remains undiagnosed (the diagnosis rate is estimated at 5%) in the community due to poor awareness and lack of specialized services (Patel & Prince, 2001). This is reflected in a qualitative study that identifies the needs of caregivers as building capacity in existing healthcare systems to identify and provide care for dementia as well as developing cost-effective dementia-specific services in India (Lamech et al, 2019).…”

“…The Schizophrenia Research Foundation (SCARF), Chennai, provides services for persons with dementia and their families under the Dementia Care in SCARF (DEMCARES) programme. In January 2016, a caregiver support group was started in response to the need for caregivers, identified by an earlier study (Lamech et al, 2019). The current study aimed to evaluate a support group service for caregivers of persons with dementia in a city in India, to identify the needs met and to explore the key facilitating factors and barriers for the caregivers to participate in the support group.…”