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| EDITORIAL |
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| Year : 2011 | Volume
: 55
| Issue : 2 | Page : 67-69 |
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Make dementia a public health priority in India
Rabindra Nath Sinha
Managing Editor, Indian Journal of Public Health, Professor, Department of Maternal and Child Health, All India Institute of Hygiene and Public Health, Kolkata, India
| Date of Web Publication | 22-Sep-2011 |
Correspondence Address:
Rabindra Nath Sinha
Managing Editor, Indian Journal of Public Health, Professor, Department of Maternal and Child Health, All India Institute of Hygiene and Public Health, Kolkata
India
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/0019-557X.85234
How to cite this article:
Sinha RN. Make dementia a public health priority in India. Indian J Public Health 2011;55:67-9 |
India, the second most populous country in the world and home of more than 76 million people aged 60 years and above, [1] is in the process of rapid demographic ageing; the age group of elderly persons is expected to rise dramatically in the coming decades. Improvement in life expectancy at all ages coupled with diminishing fertility rates result in increase in elderly population in India which is projected to increase to 179 million in 2031 and further to 301 million in 2051 along with concomitant rise of their proportion. The current proportion of 7.1% is likely to reach 12% and 17 % in 2031 and 2051 respectively. [2] Among the elderly population (aged 60 and above), the rate of increase of persons above 70 years of age (old-old) will be greater than that of 60 years and above. The oldest-old group (80 years and above) will grow faster than any other group. It is likely to increase six-fold from 5.4 million in 2001 to 32 million in 2051. [2] Consequent to the rapidly ageing population, health problems of the elderly would become prominent as personal and public health concerns. Of all the age-related chronic diseases and disabilities, dementia, a chronic degenerative brain syndrome is destined to emerge as one of the major public health challenges in India.
Dementia is not an inevitable accompaniment of normal ageing but is more common among the older people; the prevalence roughly doubles every five years over the age of 65 years. [3] The worldwide prevalence of dementia among the elderly is rising very fast. About 35 million people living with dementia globally in 2010, as estimated by Alzheimer's Disease International, is projected to grow further at an alarming rate, almost two times in every 20 years. [4] The rate of increase will not be uniform everywhere, more than 300% in India and China from 2001 to 2040, as compared to around 100% in the developed regions in the same period. [5]
In India, currently at least 3.7 million elderly people are living with dementia and the country is on the brink of a virtual dementia epidemic; the number is expected to increase two-fold by 2030 and three-fold by 2050. [3] This age related disabling neurological disorder has significant impact on the affected people and their families draining them physically, emotionally, socially and economically. Unfortunately, the wider implications of this chronic debilitating neurodegenerative illness are yet to be fully appreciated by the people and health professionals.
Dementia syndrome comprises of a wide range of neurological disorders which result in acquired deterioration in cognitive abilities that impair the successful performance of activities of daily living. Impairment of memory is the most common and important cognitive affection. This is accompanied by impairment of one or more of other mental faculties such as language, visuospatial ability, calculation, judgement, and problem solving. Depression, withdrawal, hallucinations, delusions, agitation, insomnia, and disinhibition also develop in many cases. [6] By far the most common cause of dementia associated with ageing is Alzheimer's disease. This is a slowly progressive diffuse neurodegenerative disorder and causes significant loss of intellectual functions such as memory, judgement, attention, and abstract thinking. Patients with severe dementia lose the ability to perform even the basic daily activities like eating or maintenance of personal hygiene. In late stages, they may lose the ability to walk or speak and may require constant supervision. Cases are not diagnosed at the early stage when use of medicines can slow down the process of deterioration in brain functioning. Early diagnosis also is very vital as with the progression of the disease, the individual gradually loses ability to take crucial decisions for future relating to finances, property etc.
Elderly people with dementia suffer from disability, reduced life expectancy and impaired quality of life. Onset is insidious and early stage of the disease is often overlooked. The most common symptom in early dementia is forgetfulness, particularly loss of recent memory. As the disease progresses the victim faces difficulty with day to day living and has to depend on others for care and support. The family is the main provider of care and support. Almost all patients with dementia are cared at home by co-resident family members. Most often caregivers are the spouses or the women members of the family like daughter, daughter-in-law etc. who have very little understanding of the nature and course of the disease process.
Caring for patients with dementia as compared to other chronic debilitating diseases is significantly different and challenging as persons with dementia are aged with diminished vocabulary and communication skills, often having behavioural or psychological symptoms like wandering, aggression, unpredictable emotional outbursts, loss of inhibition etc. and require near constant supervision and surveillance for many years. Psychological and behavioural problems, common among people with dementia, are frequently misunderstood as deliberate misbehaviour by the patients. This may lead to neglect or abuse of the patients and stigma, blame, anxiety or frustration for the carers. Dementia care is a time consuming responsibility. People with dementia may suffer for years with disability and the family caregivers struggle between providing care for their loved ones and fulfilling other social and familial responsibilities, compromising their own health and recreation. Families, unable to afford services of paid home care workers may be compelled to cut back on their paid work aggravating the existing financial burden. Further, care of these patients is emotionally unrewarding as most of them are apathetic to the surroundings and the sincerity and commitment of the carers are seldom appreciated. The caregivers themselves face immense physical stress and mental agony requiring support for themselves too.
The disease badly affects the family economy. In India, annual cost of taking care of a person with dementia has been estimated to be INR 43,285; much of which is met by the families. [3] Components of cost of household care for patients with dementia are related to consultation, investigation, medication, hospitalisation, travel costs for attending treatment facilities, payment for paid caregivers etc. and cost of unpaid care provided by family members including, loss of income on the part of patients and caregivers. With the gradual erosion of the joint family system, long term care of disabled old patients at home will become increasingly difficult in future, as younger women, hitherto responsible for providing home care, venture to work outside for career ambition and financial autonomy.
Awareness about dementia as medical disorder is grossly inadequate among the general population and health care professionals. Early symptoms of memory loss are considered to be normal part of ageing and are not perceived as health problem requiring medical care. Vast majority of patients with dementia do not seek help at the early stage of the disease. Patients in advanced stage may require hospitalisation, but institutional care is mostly unavailable, and if available, is neither affordable nor culturally acceptable. There is scarcity of trained manpower for the care of the people with dementia and primary health workers are not trained to deal with the problems. Specialist services are almost non-existent in vast majority of rural areas. High cost of medicines which the family has to bear for long duration is also another problem.
Rising magnitude, long period of disability and severely compromised quality of life of the patients, physical and psychological stress and strain of the caregivers, low levels of awareness and stigma associated with the medical disorder and lack of sensitive and supportive health and welfare services for the patients and their care givers are some of the alarming public health concerns calling for urgent attention of policy makers, health professionals, and other stake holders. It is important to recognise dementia as a national public health priority. Quality dementia care services should be made accessible and affordable through primary health care delivery system. Family caregivers also should be included as beneficiaries. The caregivers should get education and support to discharge their responsibilities. They also will require health check-up and psychological counselling to cope up with the stress and strains. As the families suffer from reduced income in the face of long term additional expenses, it is highly desirable that Government should think of providing some form of monetary benefit /allowances for people with dementia and/or the caregivers. Primary health care workers, physicians and practitioners need orientation training. Paramedical workers and nursing personnel of the health care facilities should be made knowledgeable and competent to provide institutional care. Undergraduate medical and nursing curricula should give due emphasis on geriatric health issues including dementia. Availability of post graduate speciality courses in geriatric medicine needs to be expanded.
Health promotional interventions at community level, creation and support of self- help groups of caregivers, day care centres and old age homes for patients, national policy decision concerning dementia, strengthening of legal framework and human right consideration are some of the important issues which need to be addressed urgently in this context. 'National Policy for Older Persons' [7] which recognizes the need for affirmative action in favour of the elders should include interests of people with dementia and their caregivers. Clinical and epidemiological research in the primary health care setting should be promoted.
In the new millennium we are facing the challenge of dementia epidemic in the country and public health professionals and associations are expected to play a proactive role in the battle against dementia. Dearth of publication on dementia in the Indian Journal of Public Health during last few decades calls for more concerted efforts from policy makers, public health professionals and researchers on the subject.
 References | |  |
| 1. | Office of the Registrar General & Census Commissioner, Govt. of India, Census Data 2001. Available from: http://www.censusindia.gov.in/Census_Data_2001/India_at_glance/broad.aspx. [Last accessed on 2011 Jun 10]. 
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| 2. | Irudaya RS, Sarma PS, Mishra US. Demography of Indian Aging, 2001-2051. In: liebig PS, Irudaya RS, editors. An Aging India: Perspectives, Prospects, and Policies. Jaipur: Rawat Publications (Indian reprint); 2005. p. 11-26.
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| 3. | Shaji KS, Jotheeswaran AT, Girish N, Bharath S, Dias A, Pattabiraman M, et al., editors. Alzheimer's and Related Disorders Society of India. The Dementia India Report 2010: Prevalence, impact, costs and services for dementia. New Delhi: ARDSI; 2010. p. 10-55. Available from: http://www.alzheimer.org.in/assets/dementia.pdf. [Last accessed on 2011 May 12].
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| 4. | Prince M, Jackson J, editors. Alzheimer's Disease International, World Alzheimer Report; 2009. p. 8. Available from: http://www.alz.org/national/documents/report_full_2009worldalzheimerreport.pdf. [Last accessed on 2011 Jun 12].
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| 5. | Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: A Delphi consensus study. Lancet 2005;366:2112-7.
[PUBMED] [FULLTEXT] |
| 6. | Bird TD, Miller BL. Alzheimer's Disease and Other Dementias. In: Kasper DL, Brawnwald E, Fauci AS, Hauser SL, Longo DL, Jameson JL, editors. Harrison's Principles of Internal Medicine. 16 th ed. Delhi: Mcgraw-Hill Medical Publishing Division; 2005. vol -2, p. 2393.
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| 7. | Ministry of Social Justice and Empowerment, Govt. of India, National Policy on Older Persons, Shastri Bhavan, New Delhi, 1999. Available from: http://socialjustice.nic.in/npopcomplete.php. [Last accessed on 2011 Jun 12].
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