As India's population ages, the challenges associated with elder care, particularly dementia, become increasingly critical. Currently, nearly 10 million Indian elders, about 7.5% of the senior citizen population, suffer from dementia, with projections indicating this number will double in the next decade.
In this interview with TheCSRUniverse, Mr. Shyam Viswanathan, Founder-Secretary of the Dementia India Alliance (DIA), discusses the organization's core mission and extensive initiatives aimed at improving dementia care across India. With four decades of global corporate experience and having served as the first Dean of Executive Education at the Indian School of Business (ISB), Hyderabad, Mr. Viswanathan brings a strategic perspective to addressing the growing crisis. He was also a caregiver to his father, a patient of Alzheimer’s disease, for ten years, therefore he adds both professional expertise and personal experience to DIA’s mission.
DIA's efforts include raising public awareness, facilitating early diagnosis, and creating a robust support system for family caregivers. The alliance has robust initiatives in place to enhance care and support for dementia patients. The interview also touches the recent DEMCON 2024 conference and DIA's future plans to expand its reach and impact nationwide.
Read the full interview for deeper insights:
Q. Could you start by giving us an overview of the Dementia India Alliance (DIA) and its core mission?
A. As per credible reports almost 10 million Indian elders and almost 7.5% of Indian senior citizens suffer from dementia. The total number of persons with dementia, in India, is set to double in the next decade. To make matters worse, for every person with dementia, at least two members of the immediate family lose their quality of life and livelihoods.
DIA exists to serve its purpose: ‘to bring help and hope to persons with dementia and their family caregivers’.
Q. What specific problems does DIA aim to address in India and what are the broad strategies you have in place for this?
A. More than 90% of dementia cases in India go undiagnosed. Public awareness about dementia, and the assistance available to deal with it, is very low. Social stigma is rampant. DIA is setting place a series of initiatives to improve awareness in urban, suburban and rural communities.
DIA is building an updated repository of neurologists, psychiatrists, family counsellors as well as providers of services such as home-based care, day-care and 24x7 residential-care. This will help family caregivers to access expert help and respite services on the DIA website, instead of running from pillar to post. The alliance is also taking steps to significantly increase dementia screening and early diagnosis across the country.
With about 7.5% of Indian elders falling victims to dementia – and the increased need for out-patient / in-patient hospital care for senior citizens – Indian hospitals need to become more dementia-friendly. Dementia-care facilities need to be better regulated – to ensure that minimum standards of care are met. DIA is assisting in this transformation through a series of initiatives.
There is a huge shortage of professional caregivers in India. Attrition is in excess of 50% and caregivers quit the profession, given that caregiver burnout is extremely high in dementia-care. DIA is creating a number of interventions to make dementia-care an attractive career option and to provide high quality training to help formal caregivers deal better with the demands of the job.
To offer solutions at scale the committed involvement of government is necessary. DIA is collaborating with departments at Central and State government levels.
Q. Can you elaborate on the key initiatives that DIA has launched, such as the Blue Button Movement and others?
A. One of the frequent and early signs of dementia is a fumbling struggle to button one’s clothes. The ‘blue button’ logo of DIA has its origins in this struggle. The strings of the button indicate that DIA will pursue its purpose through alliances and collaborative partnerships. The button is given a D-shaped shield – one that provides help, hope and protection to persons with dementia and their families. All of DIA’s activities constitute a ‘movement’ to improve dementia-care – the ‘blue button movement’.
We are creating a supportive ecosystem through multiple initiatives, such as:
- DIA Website: The website has directories of neurologists, psychiatrists, family counsellors as well as providers of services such as home-based care, day-care and 24x7 residential-care. This helps family caregivers to access help easily, online.
- Dementia Awareness Events: These events are organised in cities, villages, organizations and institutions across India, on a regular basis. They serve to fight social stigmas related to dementia and spread information about the assistance and resources available to provide respite.
- DIA’s National Support Line: Our support line (8585990990) is a free service that provides all information needed by a family caregiver.
- Demclinic: This is an online platform through which our panel of doctors offers dementia-screening and teleconsultation, including prescription of medication. Elders and their family caregivers are availing of this service from the comfort of their home.
- Trainings and Certifications: DIA has commenced a series of initiatives to train and certify social workers and allied healthcare professionals to conduct dementia screening and dementia awareness events in different parts of India. We have collaborated with National Accreditation Board for Hospitals and Healthcare Providers (NABH) to create a checklist of guidelines for dementia-friendly hospitals.
- Government Collaborations and Advocacy: DIA has, with contributions from experts in all related fields, put together a set of recommendations for minimum standards of care to be provided by dementia-care facilities. This white paper is being discussed with the government at both central and State levels. We are also working with the Government of Karnataka and NIMHANS Bangalore, to enhance dementia-care across the state. DIA has signed an MOU with the Ministry of social Justice & Empowerment, government of India to carry out dementia screening of elders living in more than 600 Old Age Homes supported by the Central government. As well as to train the staff at these Old Age Homes to cope with the high prevalence of dementia among the residents.
Q. Speaking of initiatives, DEMCON 2024 was a landmark event. What were some of the major objectives you achieved through this conference?
A. DEMCON 2024 brought together all key stakeholders working towards better dementia-care, from around the world. The event was attended by multiple groups including:
- Leaders of NGOs and for-profit organizations
- Faculty, researchers and students from institutions such as NIMHANS, Centre for Brain Research, Asian Society Against Dementia, CommonAge (Commonwealth Association for the Ageing), Alzheimer’s Western Australia – and many more
- Family caregivers and senior citizens
- Doctors and allied healthcare professionals
- Policy makers and senior government officials
- Experts in technologies related to dementia-care
There were symposia, panel discussions, workshops and student activities – which resulted in enormous sharing of latest developments and best-practices. DEMCON 2024 has placed India firmly as a global source of cutting edge thought leadership in dementia-care.
Q. With experts like Greame Prior and Iracema Leroi participating in DEMCON 2024, what kind of collaborations and partnerships have been forged at the conference?
A. DIA signed and finalized collaborative partnerships with Alzheimer’s Western Australia, CommonAge, Institute of Human Behavior & Allied Sciences (IHBAS) Delhi and GreenXt Technology solutions to work on a range of initiatives within and outside India.
DEMCON 2024 also strengthened and deepened DIA’s existing collaboration with agencies such as Ministry of Social Justice & Empowerment Govt. of India, Department of Health & family Welfare govt. of Karnataka, NIMHANS, Centre for Brain Research - IISc, Ramaiah Medical College, Vayah Vikas, Association of Healthcare Providers of India (AHPI), Association of Senior living India (ASLI), Renaissance eServices and others.
Q. The signing of Letter of Intent with Professor Warren Harding Chairman Alzheimer’s Western Australia and with Mr. Mansur Dalal chair CommonAge are significant. What specific areas will these partnerships focus on?
A. The Letter of Intent signed between DIA and Alzheimer’s Western Australia (AWA) envisages collaboration on dementia-care audits, dementia-friendly hospitals, accreditation of dementia-care facilities, training & certification of dementia caregivers and the establishment of ‘memory cafes’ to provide supportive spaces for persons with dementia.
The LoI with CommonAge covers Healthy Ageing initiatives, training of various stakeholders in dementia-care, advocacy, awareness, knowledge-sharing and enhancing dementia-care in developing nations of the commonwealth.
Q. Can you share insights from the report "Dementia in the Commonwealth" released by CommonAge? What are some of the issues and recommendations of this report and how does DIA plan to leverage these findings to enhance dementia care in India?
A. “Dementia in the Commonwealth” is believed to be the first report on dementia focussed on Commonwealth countries. It delves into the current state of dementia care and support and highlights challenges, underscores best practices, and the urgent need for action to improve the lives of those affected by dementia. This report is essential reading for anyone involved in health policy, health care, community development and service delivery.
By 2030, dementia will affect 75 million people globally, with a new case every three seconds. Nearly 40% of cases can be prevented, yet it remains the 7th leading cause of death. CommonAge is urging Commonwealth policymakers to prioritize Dementia as a major public health issue so that those affected receive the care they deserve.
DIA is collaborating with CommonAge for advocacy with Indian policy makers and government departments to improve dementia-care in India.
Q. Technology plays a crucial role in modern healthcare. What technological innovations are being integrated into dementia diagnosis and care in India through DIA's efforts?
A. DIA’s Demclinic is a remarkable initiative to provide screening, early diagnosis and teleconsultation with experts – all on a virtual platform.
We have undertaken a massive exercise to train and certify doctors, nurses, allied healthcare professionals, under-privileged youth, social workers and family caregivers. This is done by using various technology platforms to provide online self-paced learning, just-in-time learning and post-learning support.
DIA is providing forums for the development of a number of mobile-app based technologies for screening and early diagnosis as well as management of the condition, in persons with dementia.
Q. How has your personal experience as a caregiver for your father, along with your extensive background in corporate leadership and education, shaped your vision and efforts in advancing the mission of DIA?
A. My wife and I went through a long and testing journey in providing care to my father, a person with Alzheimer’s disease. We quit our flourishing corporate careers in our forties, endured financial insecurities, experienced intense mental turmoil within the family. Both of us underwent medical treatment for clinical depression. But we emerged with a passion to make life a bit easier to other family caregivers. Our engineering and management education, combined with our long corporate careers, gives us a perspective on scale of operations with a focus on national and global impact. We are also able to utilize our enterprise-building and leadership competencies to good effect. As founder members of the DIA Governing Body we are able to complement the deep NGO experience of our co-founder colleagues with our corporate best practices in a not-for-profit setting.
Q. What are the future plans for DIA in terms of expanding its reach and impact on dementia care and support across India?
A. We hope to be able to quickly scale up our skilling and certification outreach - as well as accelerate early diagnosis and dementia- awareness activities - in every state and union territory of India. We plan to leverage cost and time efficient technologies to do this – and to cover the large demand-supply gap for well-trained stakeholders.
We aim to collaborate with at least one new state of India, every year, to significantly enhance dementia-care.
We plan to collaborate with the appropriate apex agencies to help Indian hospitals and elder-care facilities become more dementia-friendly.
We will be the go-to platform for sharing of global developments in dementia-related research, technology and best-practices, not only for the benefit of Indians – but for all nations.
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