Dementia in India
Dementia Awareness
Awareness about dementia in India is, in one word, poor.
Some interesting data on the level of dementia awareness in India is available from the 10/66 Dementia Research Group, a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. This group is a part of Alzheimer’s Disease International, and is co-ordinated from the Institute of Psychiatry, King’s College London.
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.
Prevalence of dementia
The overall prevalence of dementia is estimated as 3%. Prevalence studies show varying results depending on the cross-section studied.
For example, Shaji’s paper on dementia prevalence in Kerala reports the result as:
Prevalence of dementia was 33.6 per 1000 (95% CI 27.3-40.7). Alzheimer’s disease was the most common type (54%) followedby vascular dementia (39%), and 7% of cases were due to causes such as infection, tumour and trauma. Family history of dementia was a risk factor for Alzheimer’s disease and history of hypertension was a risk factor for vascular dementia.
A study on Kashmiri migrants (Raina et al) reports the prevalence as 6.5%. On the other hand, the prevalence in Dogra population was only 1.83%. And here is a study in Cochin, where the prevalence was 3.4%.
As far as the overall projections, the paper, Global prevalence of dementia: a Delphi consensus study, gives the 2001 dementia population of India as1.5 million, and says it is set to increase by more than 300% by 2040 (that is, it is estimated to reach six million). This seems to be a consensus figure, often quoted. In his 2009 paper, Dementia care in developing countries: The road ahead, Dr. KS Shaji(Associate Professor of Psychiatry, Medical College, Thrissur) states:
It is estimated that there are about 1.5 million people with dementia in India (compared with 2.9 million in the USA).This number is likely to increase by 300% in the next four decades.
Similarly Amit Dias also uses this in his paper, The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India, where he says:
The numbers of people affected by dementia in India are set to triple, reaching six million by 2040
Caregiver Role/ Status
Many people assume that India, with its allegedly strong familial systems and respect for elders, would be effective in caring for dementia patients.
As the 10/66 study showed, however, the lack of awareness of dementia also affects how caregivers perceive the patient, and how caregivers, in turn, as 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.