Law and Society

Dealing With The Growing Burden of Alzheimer’s Disease

Dr. Mala Kapur Shanakardass

With almost eight million people in India to be affected by Alzheimer’s Disease by 2030, it is imminent to manage the disease and improve the quality of life of the people affected by it.

Two recent movies, Forget Me Not, a German production, and Astu – So Be It, directed by two Indians at the Film Festival for Generations, reveal the growing problem of Alzheimer’s Disease (AD) across the world. Both films depict the burden of care which families bear in caring for a person suffering from Alzheimer’s disease. These films rightly touch on the universal problem arising from age related diseases, out of which Alzheimer’s, the commonest form of dementia, is a foremost concern requiring urgent attention from policy makers, medical professionals, care givers and other civil society members. Alzheimer’s is a devastating disease, which damages and kills brain cells leading to progressive loss of the powers of the brain. This causes many problems affecting quality of life of the person suffering from the disease and of care givers as memory loss and deterioration in communication skills along with ability to think and handle day to day tasks by the affected person can take a serious toll on the health and well being. Family members as care givers have to provide long hours of care and continuous support. This care and support as the years go by becomes more intense and stressful on the caregiver.

A recent study done in Italy which has a high proportion of older people indicates that a patient with AD requires 45 hours per week of personal care provided by a primary caregiver along with 18 hours per week of paid non-medical services. In India where services by non family members are limited especially in terms of quality care for a person suffering from AD, the burden on primary care givers is immense, who are more likely to be women, spouses and retired. As data from NGOs working in this field reveals the need for a second caregiver is felt by many affected families, especially to provide respite to primary care giver. But, alas provisions for respite care are scarce. Further, studies from developing and developed countries show that AD puts many families at great financial risk as social and economic cost of providing medical and non-medical care to the patient can be very high. There are no provisions in countries for health insurance against AD and neither any other resource available to provide any recourse.

While there is no arguing for dealing with AD as a public health priority, there is also need for giving greater emphasis on non-medical care giving aspects, on improved home care support packages. To begin with is the urgent requirement for provision of paid and unpaid care giving leave in both formal and informal sector for family members of the suffering AD person. It has been observed across the world that many care givers from the family have to do away with their employment as caring activities require the dedication of long duration of time. India in 2017 signed the WHO Global Action Plan to reduce the societal cost of AD and it is now pivotal that India uses those guidelines to build its strategy for dealing with the problem.

One of the ways for reducing the burden of AD is to adopt measures for bringing down the risk of AD. At present there is no cure for AD, but what can be useful strategy in tackling the growing concern is to make provisions for facilities to diagnose the disease, treat and manage the symptoms in best possible way and provide guidance on its prevention in rural and urban areas. There is need for many more support services and training for care givers along with emphasis on research for appropriate medications, innovations in dealing with the problem and developing adequate information systems, legislations, medical and social care models. It is true that the biggest risk for AD is getting old as it is problem which affects in later years but setting in of risk factors can be controlled from a younger age. Regular health checks are recommended by the medical community with control of blood pressure, cholesterol levels, intake of alcoholic drinks, maintaining healthy body weight, consuming brain-healthy diet, being involved with activities that stimulate mental energy and capacities, doing regular physical exercises, keeping up with social interactions and networks. The earlier the people start with reducing the risk of dementia, whose real causes still elude the researchers, the better it is for societies in bringing down the burden of AD.

It is estimated by those involved with concerns related to AD that by 2030 there will be about 8 million people with dementia in India and many more affected by providing care and support to those suffering from AD. It is sad state of affairs that as revealed by estimates of Alzheimer’s and Related Disorders Society of India (ARDSI), a national level NGO with 20 chapters across the country, there are almost 2,500 new cases of AD each day but less than 10 per cent are diagnosed. With the estimated societal costs being Rs. 16,300 crores currently and with the number of people affected by the problem increasing there is urgent need for measures to reduce the family and public health burden of the disease, to lower the direct and indirect costs of AD and to develop sound, robust policies for diagnosis, treatment, prevention, care, and support. The challenge in India as it is in other countries also is to manage the disease and improve the quality of life of the people affected by it.

Dr. Mala Kapur Shankardass is an accomplished Sociologist, Gerontologist and Health Social Scientist. She is an Associate Professor at Maitreyi College, South Campus, University of Delhi and Chair, Asia, International Network for Prevention of Elder Abuse (INPEA). She is a prolific writer on issues of the elderly and has co-authored a Springer publication titled Abuse and Neglect of the Elderly in India.

Image Source: NRS Healthcare