Recognising that socio-cultural practices profoundly impact the lives of people living with dementia, a team of researchers from NIMHANS and Alzheimer’s and Related Disorders Society of India (ARDSI), India, have recommended that enhancing efforts to impact public perception, healthcare systems, and policy can contribute to improving the quality of life in people living with dementia. The most common cause of dementia is Alzheimer’s disease.
According to a paper titled Cultural implications for people living with dementia and their family in the Indian context that is part of the World Alzheimer’s Report, 2022, efforts from dementia stakeholders (that include healthcare systems, governmental and non-governmental organisations) as well as policy change can contribute towards developing equitable solutions and enhancing the wellbeing of people living with dementia and their families in the Indian context.
Socio-cultural context
“While certain aspects of dementia diagnosis and care are universal, reducing the global burden of dementia actually relies on tackling this multifaceted issue through contextualised and localised forms of medical practice and care. Socio-cultural contexts differ across the world, and it is crucial to understand their impact on people living with dementia and their families to ensure that management strategies are effective. India is a multicultural and a multi-ethnic country and this diversity significantly influences dementia awareness and care,” Suvarna Alladi, professor and head of Department of Neurology at NIMHANS, who is the lead author of the paper, told The Hindu on Tuesday.
Elaborating on the management of dementia, Dr. Alladi said it involves pharmacological and non-pharmacological interventions that reduce symptoms and improve the quality of life.
“While the majority of drugs used for symptomatic treatment are widely available, they are expensive, with limited accessibility for people from low socioeconomic status. While a few non-pharmacological treatment options are implemented, socio-cultural and educational diversity makes it challenging to develop a standardised cognitive stimulation therapy (CST) protocol,” she said.
Traditional ways
“Playing traditional Indian games, drawing rangoli or kolam patterns, and singing bhajans are culturally relevant activities incorporated into the CST. Ayurveda as a personalised system of holistic medicine has long been accepted in India,” she asserted.
According to the paper, families in India are recognised as capable of therapeutic participation. “Family members share close kinship links, and this extends to the close engagement with the care process. Social relationships over several members of extended families and social networks that are an outcome of such systems have a largely protective influence in dementia care. However, gender-based disparity in cognitive health is evident,” the paper stated.
Meera Pattabiraman, ARDSI chairperson, who is one of the authors, said only 10% of people with dementia get diagnosis, treatment or care in India. “This large treatment gap is due to a lack of awareness, stigma, limited availability and accessibility to health services, in addition to a significant shortage of multidisciplinary care specialists trained to diagnose and treat dementia. Furthermore, once diagnosed, there is minimal care and support provided to patients and their families,” she said.
“There is a need to start government-run long-term and day care centres for persons with dementia in all States. As of now, only Kerala has this facility,” she added.
