The Dementia Home Care Trial was initiated to design and test an innovation that could help bridge the treatment gap for dementia in low- and middle-income countries [LAMIC]. The treatment gap in India is particularly large, with an estimated 3.7 million people living with dementia.
Previous work in Goa showed that over 90% of families of people with dementia have no knowledge of the diagnosis. Dementia is generally treated as part of normal aging, and elders may experience abuse as a result of misinformation.1-4
Families do not visit the public health care system to seek care for relatives with dementia, and caregivers are also known to have significantly poor mental well-being due to the added responsibility placed upon them.5 Families have little recourse to formal mental health services, as trained mental health workers are scarce in this region.
Given this context, an innovative, task-shifting approach using locally available resources was designed to support the home care of people with dementia and their families in Goa. The innovation was tested against a control arm receiving enhanced usual care.
- Lay workers are trained to deliver a non-pharmacological intervention to support people with dementia and their caregivers, comprised of:
- Education for caregivers (nutrition, physical health, psycho-education, etc.)
- Guidance for caregivers on assisting the person with dementia in their activities of daily living
- Methods for managing problem behaviors associated with dementia
- Each family is visited at least once every two weeks (depending on the severity of the condition and the caregiver’s state of well-being) by the lay worker
- A psychiatrist and a counselor supervise the lay worker and intervene as necessary