Innovation summary

In India, the existing human resources cannot meet the needs of the estimated 3.7 million people living with dementia, and families have very little access to information and support.1,2 The Home Care trial was created to develop and evaluate an innovative solution to close the treatment gap for families of people with dementia in Goa, India.

The trial used locally available resources to improve the care and quality of life of people with dementia and their caregivers through a need-based, flexible, stepped care intervention:

  • Lay workers deliver a largely non-pharmacological intervention, visiting families and homes of people with dementia regularly
  • Caregivers receive health education and guidance on assisting the person with dementia in their activities of daily living
  • Lay worker addresses problem behaviors associated with dementia
  • Each lay worker is supervised by a counselor and a psychiatrist

Impact summary

  • Trial of 81 families scaled up to state-wide delivery over 2 years
  • Innovation resulted in significant improvements in general health and reductions in distress caused by behavioral problems1
  • $12,676 USD grant funded delivery of the intervention throughout Goa over two years

Thank you for being a part of our family.

- Caregiver to a lay worker in Goa, India

Innovation details

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.

Intervention

  • 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

Key drivers

Using locally available resources

Demonstrating that non-specialists can effectively improve caregiving skills and help families of people with dementia shows that dementia care can be easily scaled up and integrated within primary care to help reach the millions of people with dementia who currently receive no services.

Challenges

Lack of precedent

This was the first time that such an intervention was tested in a LAMIC setting. The awareness of dementia was low and there was a lot of stigma associated with the condition.

Lack of resources

The innovation had to be at a cost that the community could afford in order to be scalable.

Health-seeking behavior

People often did not use the public health care facilities, as they preferred home-based care provided by general practitioners, so the innovation also needed to be home-based.

Continuation

The Rotary Club of Crosby supported Sangath, an NGO working towards improving mental health in this region, to extend the intervention throughout Goa. This was supported for a period of two years. The innovation is part of the Dementia India Report2 recommendations to the Government of India to bridge the treatment gap for dementia.

The innovation is also under consideration for adaptation to remote rural regions of the Scotland Highlands.

Partners

Funders:

 

Evaluation methods

The impact was evaluated through a randomized controlled trial in which one arm received the intervention for a period of six months and the other received enhanced usual care. 81 families enrolled, and 41 were randomly allocated to the intervention arm. 59 completed the trial, while 18 died during the trial period.

A mixed effects model was used to measure outcomes:

  • Mental health of caregivers
  • General Health Questionnaire (GHQ 12)
  • Perceived burden: Zarit Burden Scale (ZBS)
  • Severity and distress caused by the behavioral problems: Neuro-psychiatric Inventory (NPI-S, NPI-D)
  • Functional ability: Everyday Ability Scale for Dementia in India (EASI)

Cost of implementation

A $12,676 USD grant funded delivery of the intervention throughout Goa over two years.

If replicated throughout the primary health centers, with one trained lay worker per health center delivering services to families of people with dementia, the only added cost would be that of manpower (which varies regionally).

Impact details

The Home Care Trial results1 showed that the intervention led to:

  • Significant improvement in general health(1.12 point reduction in GHQ )
  • Significant reduction in distress caused by behavioural problems (1.96 point reduction in NPI-D)
  • Non-significant reductions in perceived burden (ZBS), functional ability (EAS-I) and severity of behavioral problems (NPI-S)
  • Non-significant reduction in the total number of deaths in people with dementia

References

  1. Dias A and Patel V (2009) Closing the treatment gap for dementia in India. Indian Journal of Psychiatry, 51(Suppl1):S93–S97.
  2. ARSI (2010) The Dementia India Report 2010: prevalence, impact, costs and services for dementia. New Delhi, Alzheimer’s and Related Disorders Society of India.
  3. Prince M  (2004) Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2):182–184.
  4. Patel V and Prince M (2001) Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India. Psychological Medicine, 31:29–38.
  5. Dias A et al. (2004) The impact associated with caring for a person with dementia: a report from the 10/ 66 Dementia Research Group’s Indian network. International Journal of Geriatric Psychiatry, 19(2): 182–4.

Research

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