Developing community capacity to provide care for people with advanced dementia in India

  • Tolson, Debbie (PI)
  • Sanatombi Devi, Elsa (CoI)
  • Ritchie, Louise (CoPI)
  • Jack-Waugh, Anna (CoPI)
  • Binil, V. (CoPI)
  • Henry, Joyce (Student)
  • Martis, Clarita Shynal (Student)
  • George, Anice (CoPI)

Project: Research project

Project Details


There are 4 million people living with dementia in India and an urgent need to establish dementia education and care aligned to the Global Sustainable Development Goals. Advanced dementia within India is a hidden problem, which places individuals and their sometimes-young carers at high risk of poverty and other inequalities. There is an immediate need to develop practical and theoretical understanding among practitioners, policy decisionmakers and the public about advanced dementia alongside an understanding of advanced dementia related abuse and abandonment. This mixed method project has begun to explore the experiences and vulnerabilities of people affected by advanced dementia, to establish the principles to inform culturally sensitive dementia education linked to care. The project has included community conversations to gauge views on the potential to adapt the UWS-Class in a Bag (CIAB) as a brief educational intervention to accelerate dementia awareness and community /family based dementia care capabilities.

Key findings

Our evidence review (rapid review and scoping review of the literature) confirms that there is a dearth of information about the experiences of caregivers of people with advanced dementia. However, the literature establishes that family members carry then burden of care for people with dementia in India. As such, family carers are more likely to experience high levels of stress and illness and are likely to engage in coercive behaviours that could result in physical or psychological harm to the person with dementia. Additionally, the literature highlights the lack of understanding of dementia among caregivers for people with dementia and the absence of training or support for family carers.
Effective start/end date01-04-1901-04-20