The public awareness about dementia in India is low.
Dementia Awareness in India
Over the years, various studies on dementia have been conducted in India.
Some interesting data on the level of dementia awareness in India is available from the 10/66 Dementia Research Group, which is a part of Alzheimer’s Disease International. The 10/66 group reports its qualitative study in India at its page here. According to this 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 patient, and/ or to family members who are held responsible for this state of the patient. 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.
The Dementia India Report 2010 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.
Prevalence in India
Till recently, the consensus figure for prevalence of dementia in India was used from the paper, Global prevalence of dementia: 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 released in September 2010 estimates the prevalence as higher than those estimated by the above Delhi 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, with six studies from the Southern region and one each from the West, East, and Northern region. There has been a wide variation in the estimates, making it difficult to provide a consistent view for the entire country. The report uses quantitative meta-analysis to synthesize the evidence for prevalence of dementia.
An interesting observation while discussing methodological constraints is that, when the estimates of prevalence depend on reporting of cognitive decline and social impairment, the surveys underestimate prevalence because the poor awareness of dementia results in under-reporting of problems by informants/ carers.
Hopefully, as awareness grows, and as various concerned bodies conduct more studies, we will have a better idea of the true prevalence.
For translations of the report:
- Gujarati: Contact Prof Sunita Jolly, sunitarj@yahoo.com
- Kannada: Contact Dr. Girish Rao, NIMHANS, girishnrao@yahoo.com
Caregiver Role and Status
Many people assume that India, with its allegedly strong familial systems and respect for elders, would be effective in caring for dementia patients. This may be wishful thinking.
The Dementia India Report 2010, while discussing care of older people, 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 the way care is perceived and given for the patients. While dementia is different from ageing, people who are not aware of dementia assume it to be the same as ageing.
A 10/66 study showed that poor awareness of dementia affects how caregivers perceive the patient. It also affects how caregivers, in turn, are perceived and supported by society.
In the paper, 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 paper where he discusses this is Behavioral symptoms and caregiver burden in dementia, where 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 recent study on effectiveness of supporting home-care through interventions has been published by Amit Dias: The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India. The interventions were basic education about dementia, education about common behaviour problems and how they can be managed, support to the caregiver (for example helping elderly caregivers with the patient’s activities of daily living), referral to medical professionals for severe behaviour 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.
Hopefully, policy making shall take cognizance of these findings and improve the support to caregivers in India.
Poor awareness also results in delayed or absent diagnosis, which means that families have to care for the patients without benefit of information, treatment, or caregiving training or resources. A study, Closing the treatment gap for dementia in India, by Dr. Amit Dias and colleagues, shows a treatment gap of over 90% in the sample studied. To quote the report:
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 quoted above also looked at the effectiveness of caregiver interventions, and 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.
Clearly, more awareness and more resources will ease life for the patients and their families through early diagnosis, treatment and other support, availability of care resources, and other means, and improve the quality of life of all affected by dementia, either as patients or as persons living with them.
