Resist the stigma of dementia, let elderly live well if they can

Dementia associated with ageing societies is a growing problem in both developed and developing countries. Yet very few people have understanding of dementia globally and most view it as a stigmatised issue. There is very little being done in most countries to advance awareness about the disease, discuss care aspects and conduct research to increase knowledge about its cure and management.  Aspects of dementia are seldom discussed among family and friends. Significantly, people are not encouraged to seek information, advice and support to tackle different aspects of the disease to which the population in older age groups is prone to, though not much is known yet about its onset and cure. However, it is widely recognised by professional researchers as one of the most significant health crises of the 21st century.

As a gerontologist it is disturbing to know that people’s reaction to the disease is based on inaccurate assumptions, negative stereotypes and lack of communication with the medical fraternity to discuss its effect on the person and family members caring for him.  Today, as per estimates from the Alzheimer’s Disease International, there are 50 million people around the world living with dementia and someone in the world develops dementia every three seconds. But, only one in 10 individuals receives diagnosis for dementia in low- and middle-income countries. The economic burden of dementia is calculated as US $1 trillion every year, a figure that is projected to double by 2030.

Many countries prompted by World Health Organisation have recently adopted the Global action plan, 2017-2025, on the public health response to dementia. It has initiated dementia research, innovation in practice, management, treatment and care, risk reduction and diagnosis. In India, too, there are attempts being made by the Alzheimer’s and Related Disorders Society of India (ARDSI) through its various chapters spread across the country to advocate with the government the development of a strategy to tackle a disease that affects both older men and women across all communities and regions of the country. In the absence of a cure, people with dementia and their carers need psychosocial support provided by professionals from the medical community and social work. They need emotional strength for learning to live with dementia and the requirement is for community services to support people with dementia and their families.

In challenging the stigma associated with Alzheimer’s, the commonest form of dementia, the emphasis must be on empowering people and organisations working towards their empowerment to promote and offer care and support for people with dementia and their carers at an affordable cost. There is need to bring governments on the platform for policy change which recognises the seriousness of tackling the impacts of the disease and working towards improving the quality of life of people affected by Alzheimer’s. India with its rapidly increasing ageing population needs to foster a dementia-inclusive society in the coming years. There is need to raise awareness about the disease and support those living with the disease. The fear and stigma surrounding dementia must be reduced. This will impact detection and diagnosis of dementia and change the general public attitude towards people affected by the disease. As India is also alongside many other developing countries which are going through epidemiological transition of growth in chronic mental health disease, the Indian government must on war footing raise awareness of the likely effects of the problems associated with dementia. It affects not only the person ailing from the disease but also the quality of life of family care givers, who go through many social, emotional and economic burdens. However, the point to be stressed is that the cost on society and families due to dementia can be considerably reduced and matters managed. The fear of dementia must be brought down among the general public and older people who are prone to the disease must take steps to delay the progression of the ailment. Timely diagnosis and treatment helps the families affected by dementia and this must be encouraged by governments and by the organisations involved with the care of people affected by the disease. Initiatives taken to promote risk reduction of the disease, and supporting increased diagnosis, care and research can go a long way to reduce the societal costs of the disease and burden on families.

It is true that dementia affects older people but it is not a normal part of ageing. By increasing coverage of diagnosis and support, risk reduction and improved awareness of dementia we can empower those affected with dementia to live as well as possible. While at present there is no cure from the disease, by improving research and understanding of dementia we can hope for new treatments and, ultimately, finding a cure in the near future. With more and more healthcare professionals getting involved with the treatment of dementia, more policymakers paying attention to dealing with dementia-affected and more members of civil society and other stakeholders showing concern about reducing the stigma attached to dementia, there is hope for improving the quality of life of those suffering from the condition and also of those caring for them. By engaging with professional groups, lay people and organisations involved with work related to dementia there is chance of bringing about dementia risk reduction, also reduce the societal cost of dementia and contribute towards raising awareness about the need to take care of those affected by the disease.

The campaign this year across the globe is to talk about dementia, a necessity to remove the stigma attached to it. This is pertinent as we raise our voice to ask questions, learn more about the disease, its causes, its impacts, and its prevention, recognise its symptoms, onset and progression, and most importantly, take steps to lower the risk of being affected by the disease. We need to recognise and promote
the right of people affected by the disease to diagnosis, treatment and quality care.   

The writer is a sociologist, gerontologist and health and development social scientist, and an associate professor at Delhi University’s Maitreyi College