Dementia and caregiving in India: advanced discussion

This is an advanced reading page for interested readers.

If you are a caregiver or a concerned person, you may find it useful to first check the overview of dementia in India at: Dementia in India: An overview.

If you are a caregiver looking for solutions, check our Caring for dementia patients menu. For basics of dementia, start with What is Dementia.

This page is for advanced discussions. It uses information and excerpts from published reports to give a glimpse of the current status of dementia and care in India. It does not provide information or suggestions relevant for day-to-day care of someone with dementia.

Dementia Awareness in India

Over the years, various studies on dementia have been conducted in India.

Some interesting data on dementia awareness in India is available from the 10/66 Dementia Research Group. This group is a part of Alzheimer’s Disease International. According to the 10/66 study, while the symptoms of dementia are widely recognized, they are considered a normal, anticipated part of ageing and not as an organic brain syndrome, or indeed as any kind of medical condition.

As the report explains, this general lack of awareness has important consequences, because there is no structured approach to study or manage it, and a stigma is attached to the person with dementia, and/ or to family members who are held responsible for this state of the person. As caregivers in India, the challenge is clear. To quote,

Behavioural symptoms of dementia; wandering, calling out, making accusations; may be taken by outsiders as prima facie evidence of neglect or abuse. Caregivers then face a double jeopardy, the strain of care heightened by the stigma and blame that attaches to them because of the disturbed behaviour of their relative.

In September 2010, the national body for dementia in India, ARDSI, published the Dementia India Report 2010. This report acknowledges that:

The public awareness about dementia in India is low.

The report explains that this general lack of awareness has serious consequences, such as delayed diagnosis and not seeking help from formal medical care services. Worse, it is not just general public that suffers from this poor awareness–health care services are also less informed about dementia. Some quotes:

Primary care doctors do not encounter many cases in their practice and there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals.

and

There is no structured training on the recognition and management of dementia at any level of health service.
Health care services remain insensitive to and do not provide the much needed information and support for carers and family members.

References relevant for the above are:

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Prevalence in India

Till recently, the consensus figure for prevalence of dementia in India was used from a Lancet paper giving a Delphi consensus study. This paper gives the 2001 dementia population of India as 1.5 million. According to the paper, this is set to increase by more than 300% by 2040 (that is, it is estimated to reach six million).

The Dementia India Report 2010 estimates of the prevalence are higher than those of this Delphi consensus. According to the report:

For the year 2010, an estimated 3.7 million India people aged over 60 have dementia (2.1 million women and 1.5 million men).

The report points out that Indian studies of dementia have not been uniform across the country. Six studies were done in the Southern region and one each from the West, East, and Northern region. There has been a wide variation in the estimates. It is therefore difficult to give a consistent view for the entire country. The report uses quantitative meta-analysis to synthesize the evidence for prevalence of dementia.

The report also discusses constraints in methodology. For example, when prevalence is estimated using reporting of cognitive decline and social impairment, this results in underestimates. This is because informants and carers under-report problems because of their poor awareness of dementia.

Hopefully estimates will be better as awareness grows, and as various concerned bodies conduct more studies.

The World Alzheimer’s Report 2015 has given a revised prevalence estimate for India as 4.1 million persons with dementia in the age group of 60+ in the year 2015, and suggests adding 2-8% to this for cases where onset is before 60.

The landmark Delphi study quoted above can be viewed at: Global prevalence of dementia: a Delphi consensus study .

The World Alzheimer’s Report 2015 can be viewed/ downloaded at: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’ .

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Caregiver Role and Status

Many people assume that India has strong familial systems and respect for elders. They assume that this will result in effective care for persons with dementia. This may be wishful thinking.

The Dementia India Report 2010 discusses care of older people. It states:

All over the world, the family remains the cornerstone of care for older people who have lost the capacity for independent living. In developed countries, with comprehensive health and social care systems, the vital role of families and their need of support is often overlooked. In developing countries the reliability and universality of the family care system is often overestimated.

Poor awareness of dementia affects how care is perceived and given to persons with dementia. People who are not aware of dementia assume it to be the same as ageing. This affects the way they support and treat persons with dementia.

A 10/66 study showed that poor awareness of dementia affects how caregivers perceive the person witth dementia. It also affects how caregivers are perceived and supported by society. Here are some observations from various studies on this.

  • In a paper published in 2009, Dementia care in developing countries: The road ahead , Shaji discusses the caregiver role and challenges. A quote:

    The levels of caregiver strain, including that contributed by behavioural disturbances and stress are as high as in developed countries despite extended family networks and home care.

  • Another 2009 paper by Shaji is Behavioral symptoms and caregiver burden in dementia . Here he states:

    The principal sources of caregiver strain were Behavioral problems associated with the dementia syndrome, and incontinence. Strain was exacerbated by the lack of supportive response by local health services, and by lack of support and, sometimes, criticism from other family members. Family conflict was commonly encountered. The majority of caregivers experienced significant deterioration in their mental health.

  • A study on effectiveness of supporting home-care through interventions was published by Amit Dias in 2008: The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India . Many interventions were studied. These included basic education about dementia and education about common behavior problems and how they can be managed. They also included support to the caregiver, such as helping elderly caregivers with the activities of daily living of the dementia persons. The study also looked at the effectiveness of referral to medical professionals for severe behavior problems, networking of families to enable the formation of support groups, and advice regarding existing government schemes for elders.The study concludes:

    Home based support for caregivers of persons with dementia, which emphasizes the use of locally available, low-cost human resources, is feasible, acceptable and leads to significant improvements in caregiver mental health and burden of caring.

  • Poor awareness also results in delayed or absent diagnosis. So families have to care for the persons with dementia, without benefit of information, treatment, or caregiving training or resources. A 2008 study by Dr. Amit Dias, Closing the treatment gap for dementia in India , shows a treatment gap of over 90% in their sample. A quote:

    There are no accurate estimates for the treatment gap for dementia in India, but we estimate that this gap exceeds 90% in most parts of the country, with the exception of urban areas and the two southern states of Kerala and Tamil Nadu. We do have relatively accurate estimates of the treatment gap from Goa. In a recent study in which 81 subjects with dementia participated, although 41 (51%) were seen by a doctor in the previous three months, only 4 (5%) had received the diagnosis and treatment specific for dementia. Thus, the treatment gap was over 90%, even in this relatively prosperous state of India with relatively good public health and mental health services.

    The study also looked at the effectiveness of caregiver interventions. It states:

    The intervention demonstrated a significant impact in reducing the caregiver burden, mental stress, and distress due to the behavioral and psychological symptoms of dementia. It also showed a non-significant reduction in the total number of deaths in people with dementia in the intervention arm.

  • Caregiving continues to be an area that needs support and intervention, as more recent papers confirm. Shaji’s 2012 paper, Caregiving: A Public Health Priority , looks at this. It recognizes that the challenges remain severe. It emphasizes the need for support. A quote:

    We cannot leave the responsibility of home-based care to the families and hope that the traditional family network is capable of absorbing any amount of stress. The burden of care is real and can have adverse impact. It is only fair and prudent for the governments and the society at large, to step in and support the efforts of these families. Support to caregivers and efforts to foster their well-being are crucial for sustaining long-term care.

Clearly, more awareness and more resources will make life better for persons with dementia and their families. Awareness and support will enable early diagnosis, treatment and other support, availability of care resources, and other means.

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Page/ post last updated on: October 6, 2016