STRiDE India Theory of change workshop
STRiDE India Theory of Change Workshop, 14th -15th June 2018
On June 14th and 15th, STRiDE India team hosted a Theory of Change workshop at National institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru. It was facilitated by Erica Breuer (ToC lead researcher, STRiDE), Suvarna Alladi (NIMHANS), Meera Pattabhiram (ARDSI) and Anita Mary (ARDSI). Other India STRiDE associates present at the ToC were Mathew Varghese (NIMHANS), Girish N Rao (NIMHANS), Priya Thomas (NIMHANS), Narendhar Ramaswamy (ARDSI). The Aim of this workshop was to develop the STRIDE India ToC.
The purpose of the workshop was to bring together a variety of stakeholders from all over India who practice directly or indirectly in the field of dementia care. The 41 workshop participants (Appendix 1) represented multiple organisations including hospitals, academic institutions, dementia organisations, dementia service providers, provincial and national health governing body, universities, associations and not-for-profit organizations.
STRiDE is a project funded by Research Councils UK’s Global Challenges Research Fund to build and strengthen economic and social research capability in developing countries to meet today’s global challenges. STRiDE will support the development of national policies for dementia in the face of rapidly growing global numbers of people with the condition.
STRiDE brings together a multi-national, cross-disciplinary, multi-institutional team of researchers and dementia policy practitioners in the UK and seven middle-income countries led by Professor Martin Knapp and Adelina Comas-Herrera at the London School of Economics and Political Science, UK.
The Rationale of STRiDE
Dementia is not confined to the developed world. There are already more people with dementia in low- and middle-income countries (LMICs) than in high-income countries, and that is set to increase. By 2050, about 90 million of the 131 million people who are expected to have dementia globally will be living in LMICs. Dementia is a major cause of disability among older people and can have a huge impact on their quality of life. This is more so where well-developed health and care systems do not exist.
Provision of care and support for people living with dementia, particularly at later stages of the condition, can be socially and economically burdening. The finances are mostly borne by family members, particularly women, putting their potential for education and/or earnings at risk. However in the face of demographic, societal and economic changes, there are indications that nations can no longer solely rely on informal family care for people with dementia. LMICs in particular, need to develop evidence-based responses to dementia prevention and care.
About the project:
STRiDE will build capacity to support the development, implementation and evaluation of national strategies to deliver appropriate, equitable, effective and affordable dementia care.
We will do this by:
- working with researchers, Alzheimer’s associations and policy makers in each country to co-develop a range of research and training activities to develop their skills in interpreting, using and communicating dementia research evidence; and
- Developing practical tools, data and capabilities to support the generation or improvement of policies to improve care for people with dementia and support family careers.
Objectives of the STRiDE India Theory of Change:
- To co-develop the logical Theory of Change (ToC) map which outlines the impact and pathways to improving quality of life of persons with dementia in India.
- To make explicit the assumptions and evidence base underlying the ToC.
- To identify knowledge gaps
- Use the ToC to identify indicators for success and develop a monitoring and evaluation framework to measure these in STRiDE India.
- Ensure buy-in and knowledge exchange.
- To build capacity for ToC development.
The agenda of ToC workshop is outlined in Appendix 2 below.
Narrative summary of the STRiDE India ToC workshop:
The STRiDE India Theory of Change Workshop, aimed to bring together different stakeholders actively engaged in dementia care in India to deliberate on the current status and future plan for dementia care in India. The workshop was conducted as a two day intensive programme wherein the participants deliberated on the status, identified the gaps and proposed a logical map for optimum dementia care for the country.
Day one: Thursday: 14th June 2018
The workshop started at 9:45am as all the stakeholders gathered. The seating was arranged to ensure optimum participation in discussion. The participants were allocated to sit at four tables . These groups were carefully chosen to ensure that there was diverse expertise on the table but also that each table had expertise in one of the four key dimensions of dementia care: 1)clinical and diagnostics, 2) service delivery, 3) societal responses, and 4) care giving.
Dr. Suvarna welcomed the audience of stakeholders and addressed the gathering by thanking everyone for making it to the workshop. The welcome address was followed by Lighting of the lamp by Prof BN Gangadhar (Director, NIMHANS), Dr. Pramod Pal (Professor & Head, Neurology, NIMHANS), Erica Breuer (ToC facilitator- resource person), Dr. Suvarna Alladi(Organiser), Dr K Sekar (Registrar, NIMHANS) and Prof SK Chaturvedi (Dean, NIMHANS) as an auspicious opening for the workshop.
Prof BN Gangadhar, Director NIMHANS delivered inaugural speech highlighting that dementia care in India need of the hour. He emphasised the importance of a collaborative project like STRiDE in addressing this need in India. He reminded the group that elderly people should be considered as a valuable resource to society, as emphasised by Indian traditional value systems
This was followed by an address by Dr Pramod Pal, Head of Neurology Department, who confirmed that dementia is increasingly encountered commonly in daily practice of neurologists.
Following introduction session, where each person was introduced to the room by their neighbour, there were several introductory presentations.
- Global Impact of Dementia: Mathew Varghese (Head of Geriatric Psychiatry, NIMHANS and STRiDE India Associate) presented the highlights from the World Alzheimer’s Report. He highlighted that dementia in low and middle income countries is increasing
- Measuring the economic impact of dementia: Dr Indrani Gupta (Head, Institute of Economic Growth)) highlighted the lack of data on costs related to dementia, including the cost of care and impact on households, and the need for accurate and reliable data in order to inform policy. She also highlighted the need to build capacity to conduct research in costing in health
- ARDSI response to Global Action Plan: Ms Meera Pattabiraman addressed the audience and presented ARDSI response to Global Action Plan. The talk highlighted the need to identify the gaps in ensuring early diagnosis and treatment, prevention of treatable causes, developing accurate understanding of costs involved in care and mainstreaming dementia into society. In order to advocate for changes, we need to be develop accurate baseline data about the status of dementia in India through developing capacity to measure and quantify the care needs.
- Introduction to STRiDE India Project: Suvarna Alladi gave an introduction to the STRiDE project and outlined the aims of STRiDE: to contribute to improving dementia care, treatment and support the system so that the people living with dementia are able to will well and the family care givers do not shoulder excessive costs, risk impoverishment or compromise their own health. The objectives of STRiDE it to work with local partners and stakeholders in low and middle income countries (LMICs) to build capacity in generating and using research evidence and tools; to build research evidence that will work in dementia care in LMICs; to understand impacts of dementia in various cultural, social and economic contexts to develop dementia responses; to support financing, development, implementations, planning and evaluations of National dementia plans in the respective LMICs.
- An introduction to Theory of Change: Erica Breuer (ToC lead research STRiDE) gave an overview of Theory of Change, ‘an outcomes-based approach which describes how a programme brings about specific outcomes through a logical sequence of intermediate outcomes. ToC is a participatory process which helps to describe what success looks like, makes rationale and assumptions explicit, offers a testable hypothesis and can provide indicators for success.
Session 1. Group discussion – Surfacing Challenges and Assumptions
The task for the first group session was to identify the challenges related to dementia care in India. Each group had time to brain storm challenges which were then discussed as a group. A detailed list of challenges is provided in Appendix 3. In brief, the challenges could be grouped into 10 categories:
- Finances and resources: including costs of care, lack of financial support or insurance and lack of costing data
- Families and care giving: including the changing family structures and the roles of women, the role of unpaid care and burnout amongst caregivers
- Terminology: such as the language used around dementia and the definitions of dementia
- Research: including the lack of research evidence on costs, economic impact, preventative strategies, epidemiological studies and the lack of capacity and funding for the research.
- Capacity building: including the capacity of health professionals and caregivers, the certification of caregivers and the unstable market for professional caregivers.
- Diagnosis: including delayed diagnosis, lack of early detection and interventions and the ability to address co-morbid conditions.
- Treatment: including the treatment gap, need for long term management, faith healers and quackery and the privacy and confidentiality of people living with dementia and their care-givers.
- Inclusiveness in society: including neglect of people living with dementia, pooling resources and valuing elder’s contribution to society.
- National Dementia Plan: including the need to address dementia as a social, technologic and economic problem which requires multisectoral collaboration and funding.
- Awareness: including the lack of awareness, stigma and discrimination towards people living with dementia at all levels
- Policy: including lack of policies and political will for dementia care, efficient use of government funding, lack of legal aid and legislative supports for persons which dementia and the lack of reliable data to inform policy.
Session 2. Agreeing on impact – What would success look like for us?
There was a group discussion to determine whether the STRiDE impact was appropriate for India. There were rich discussions related to this including the need to include risk reduction in the overall impact, the need for early diagnosis in view large diagnostic gap, the need to decrease the care costs, and make them affordable. In addition, word impoverishment was thought to be extreme and catastrophic and advised to be modified to ‘protected from excessive costs’. A comprehensive sustainable strategic approach was also discussed
The final impact of the discussion:
To contribute to reducing risk, improving dementia diagnosis, management and support systems, so that people with dementia are able to live well, and that their family, carers and society are protected from excessive costs and health problems
Session 3: Identify Key outcomes
The third session focused on the key outcomes required to achieve the impact agreed upon above. The participants worked in groups to identify the key outcomes in relation to awareness, terminology, inclusiveness in society, policy, diagnosis, caregiving services, management guidelines and capacity building, unpaid care and research. Each of the four tables was responsible for two of the topics.
Following discussion within the groups, they presented their outcomes and they were placed on the board to form the ToC map. A significant mention is made of the outcome voiced by the person with dementia that “persons with dementia should live a life of dignity”. A detailed list of outcomes identified by the groups can be found in Appendix 3.
Session 4: Interventions for the STRiDE India Theory of Change STRiDE India
The fourth session focused on identifying interventions to ensure the outcomes developed in Session Three can be achieved. Once again, the participants worked in groups to identify the key interventions in relation to policy, awareness, research, terminology and inclusiveness in society, diagnosis and management, capacity building and support for unpaid caregiving. The interventions suggested by stakeholders are listed in Table 1.
Table 1 Interventions for the STRiDE ToC
|1. National Dementia Country plan to be integrated into existing plans for elderly|
|2. Elderly care programs, legal and social services to include dementia perspective|
|3. Recommendation to policy makers to be represented in bullet points for clarity|
|1. Development of media engagement strategy for rural and urban stakeholders|
|2. Development of dementia education and volunteering programs for schools/colleges|
|3. Tested awareness IEC material for stakeholders (print-visual wam) in different languages|
|4. Integration of dementia awareness in Ayushman Bharat and all other large population oriented programs|
|5. Community service in dementia to be included in school and college curricula|
|1. Set priorities for research across all levels of management including diagnosis and care that are policy and program relevant.|
|2. Generate and synthesize research evidence that will tie up with programs ongoing in|
|a. Government: Ministry of health and Family welfare, Ministry of Social Justice,|
|NitiAyog, Elderly care programs, Research organisations ICMR, DBT, DST|
|b. Private: elder care and palliative care institutions|
|3. Generate research evidence for policy makers and use data to supplement National Mental Health Policy, Palliative Care Policy, if not adding it to the possibly newly created National Dementia Policy|
|4. Prepare research priorities to include action plan with evidence generated|
|Inclusiveness in society, language and terminology|
|1. Development of stigma reduction models that are culturally relevant, and could use existing models of pediatric developmental disease|
|2. Use of interdisciplinary bodies to sensitise, create consensus and build opinion among healthcare professionals, policy makers and other stakeholders about language and terminology used for dementia and carers|
|3. Use of social media and traditional media and advocacy activities to create dementia inclusive societies|
|Diagnosis and management|
|1. Timely and accurate diagnosis at primary level using appropriate screening and diagnostic tools|
|2. Strengthening referrals from primary to specialist centres, and between medical and professional caregiving organisations|
|3. Increase in range of services and providers across all aspects of management|
|4. Strengthening of existing networks that provide care for dementia|
|5. Tele mentoring of care providers to be done to improve access in less developed areas|
|6. Ensuring numbers of institutions are created, and are functioning well and accessible to all|
|7. Intervention should include convergence of healthcare providers and partner roles to be defined and communicated|
|1. Develop certified models of training for all levels of care|
|2. Capacity building of skilled service providers and manpower|
|3. Establishing of training centres for geriatric care and dementia management|
|4. Establishing employment and placement centres for trained manpower and convergence of training and caregiving services|
|Unpaid carer support|
|1. Caregivers should receive in-depth guidance and counselling from health providers through systematically conducted caregiver training and sensitization programs|
|2. Sensitization of society and community to create dementia friendly communities|
|3. Support systems of care givers to be developed|
|a. Day care services|
|b. Respite care|
|c. Trained attenders to help in homecare|
|d. Assisted living|
|e. Support groups|
|4. Government subsidies for persons with dementia and caregivers|
|5. Legal protection for persons with dementia and caregivers|
Following this, there was some discussion that these interventions would not be possible within STRiDE but are a broader list of interventions related to dementia care in India which can be used as a resource and to inform the National Dementia Plan.
Session 5: Assumptions
The last session of the day focused on the assumptions which need to be in place for the ToC to lead to the anticipated impact. Stakeholders worked in groups to identify the following assumptions:
- Every citizen treats persons with dementia and carers with dignity
- Society is “for” dementia, “to” dementia, and ‘by ‘dementia
- Priorities of persons with dementia and caregivers are assured
- Allocation of adequate resources specific to dementia
- Dementia getting accepted as a priority by national policies for care
- Dementia is a national priority for research by all funding organisations
- Diagnosis, management and caregiving services
- Dementia services are available, affordable, accessible for one and all (Dementia care is free of cost in India)
- Inequities would be addressed as and when identified
- There would be a sensitive family, society and government regarding dementia care
- Availability of committed and adequate personnel for training and service providing
- Unpaid carer support
- Government and society is strongly supportive of family support systems
Day two – Friday: 15th June 2018
Session 1: Presentations
The second day of ToC workshop started at 10:30 am with several presentations:
- Elderly care: challenges in Indian context: Mr Sridhara Reddy (Deputy Director –Training and Head of Old Age Care Division of National Institute of Social Defence (NISD), Ministry of Social Justice & Empowerment) presented the challenges of delivering elderly care in India and some of the work that the Ministry of Social Justice & Empowerment in developing different policies and training programs regarding in support of the elderly.
- Reaching out to the elderly – potential opportunities in geriatrics for tertiary care academic institutions: partnership with civil society; Dr Pretesh Kiran (Community Health) addressed the growth of the elderly population and the issues relating to elderly care in medical, financial and psychosocial aspects. He spoke in detail about the intervention take up in India by various centres such as St Johns district hospital, community based Grama Hiriyara Kendra and Tata trust for the enhancement of the elderly care.
- Palliative care in dementia – Dr Roop Gursahani (Neurologist, PD Hinduja Hospital) focussed on the importance of including palliative care for dementia in the national policy. He spoke about the need to address inclusiveness of persons with dementia into society, and emphasised that the management of the unbefriended person with dementia with no family is a gap that exists currently in our health care systems.
- Whole of society approach to dementia – Dr NK Arora (Director INCLEN Trust) discussed the importance of having a whole-of-society approach to dementia research. He said that as a part of a nationwide multi-site study being conducted by National Brain Research Centre and his team at INCLEN DBT with sites across the country, research information will be generated about burden of disease in urban and rural areas and potentially be used to understand care practices in diverse settings
- Dementia Care Models : Dr Radha Murthy (Nightingales Trust) focused on the dementia care system. The National Programme for the Health Care of Elderly policy initiated and various support centres (Day care centres, Residential care centre, respite care facility) available in India and their works undertaken by the centres. She majorly focused on the challenges faced by these centres regarding the gap between the need and the availability.
- Public Health: Dr Girish N Rao spoke about the importance health of an individual with regard to happiness was addressed. He spoke about public health models in India and that collaboration between different systems is essential for organisation and delivery of health care
Session 2: Overview of the ToC
The draft STRiDE India ToC was presented by Erica Breuer and based on inputs from participants in the first day as well as refinement by a smaller group comprising of Erica Breuer, (ToC lead researcher, STRiDE), Suvarna Alladi (Country Lead researcher), Anita Mary (Early Career researcher), Girish N Rao (STRiDE India Associate) and Priya Thomas (STRiDE India Associate). The draft ToC is shown in Figure 1.
The outcomes of the draft ToC map covered six domains of dementia care: national policy and programs, awareness, inclusiveness and language, diagnosis and management, training and unpaid care which lead to the anticipated impact, “to contribute to reducing risk, improving dementia, diagnosis, management and support systems, so that people with dementia are able to live well, and that their family, carers and society are protected from excessive costs and health problems.”The draft ToC map was discussed. Participants of the workshop gave feedback which was incorporated into the final ToC map (Figure 2).
The facilitators also gave examples of how the ToC could be used to develop indicators to determine whether the outcomes in the ToC has been achieved. However, these were not discussed and developed in detail for the ToC map.
Session 3: Brief discussion on research priorities
There was a brief discussion on which of the STRiDE work packages involving more in-depth field work are research priorities for India. These are Work Package 5 which will involve a dementia prevalence study, Workpackage 4 which involves qualitative interviews on the burden of unpaid care and Workpackage 3 which involves the development, implementation and evaluation of a stigma intervention. The outcomes of the discussion were as follows:
- Workpackage 5, Prevalence study: There was consensus amongst the group that there are existing dementia prevalence studies in India as well as an ongoing multicentre prevalence and incidence study conducted by DBT India. Therefore, this WP5 was not considered to be a top priority
- Workpackage 4, Unpaid carers: The ARDSI representatives requested that the STRiDE research should concentrate research on carers. The community health experts emphasised that there is no information how carers are coping at homes and also added that public health policies are not reaching homes of elderly. Public health experts however communicated that policy for elderly care has the mandate to reach primary health centres. Based on this discussion, the gap in understanding impact of care provision to unpaid caregivers was identified by the group
- Workpackage 3, Stigma/awareness: ARDSI representatives communicated that they have focused on this for the last decade, but it was generally felt that much still needs to be done.
Ms Meera Pattabhiraman gave the concluding remarks and highlighted the need for a national plan for dementia and the important role of STRiDE and the ToC participants to contribute towards developing the national plan. It was announced that the stakeholders will be updated through emails and a vote of thanks of delivered as the workshop ended.
Final ToC Map
Following the workshop, the map was edited to incorporate the feedback from the workshop and was finalised by the STRiDE India team together with feedback from Erica Breuer (ToC Leader Researcher, STRiDE)
Summary of ToC
The STRiDE India Theory of Change (ToC) brought together forty stakeholders from different regions and various facilities related to dementia including physicians, economists, public health specialists, dementia care providers, policy makers, government officials, person with dementia and family carers. For the first time in Indian context, dementia care was discussed at such a vast platform. This process lead to identifying two main issues relevant to India: the valuable role of traditional societies in elderly care and the major socio-economic impact of dementia highlighting unpaid dementia care. It was also for first time, that a person with dementia and the family caregiver were involved and contributed a valuable perspective to the discussion. The meeting highlighted key outcomes with respect to dementia awareness, terminology, inclusiveness in society, dementia diagnosis, caregiving services, prevention, management, capacity building, unpaid care, national policy and dementia related research. The ToC was able to define through consensus the expected impact that people with dementia are able to live well, and that their family, carers and society are protected from excessive costs and health problems
List of Participants for Theory of Change Workshop
Erica Breuer (Lead Researcher WP1 – STRiDE)
Dr. Erica Breuer is a global health researcher with skills and expertise in mental health, health services research, quantitative data analysis, systematic reviews, tool validation, monitoring and evaluation, programme management and theory of change. For the past seven years, she has worked on the Programme for Improving Mental Health Care (PRIME) based at the Alan J Flisher Centre for Public Mental Health in the Department of Psychiatry and Mental Health. She holds an MPH from the University of Cape Town and her PhD looked at the role of Theory of Change as an approach to designing and evaluating complex interventions in health care.
Meera Pattabiraman (Chairperson, ARDSI-Alzheimer’s And Related Disorders Society of India)
Mrs. Meera Pattabiraman is a former carer and is now the Chairperson of the Alzheimer’s and Related Disorders Society of India (ARDSI). She has been with ARDSI for twenty years. Mrs. Meera is one of the authors of the Dementia India Report 2010. She is also a member of The World Dementia Council and the Global Alliance for Women’s Health.
Suvarna Alladi (Neurologist, NIMHANS, Bengaluru and Country Lead Researcher– STRiDE)
Dr. Suvarna Alladi is a Professor of Neurology at the National Institute of Mental Health and Neurosciences, Bangalore. She graduated from NIMHANS in Neurology. She has trained in Cognitive Ageing Research Methods at University of Edinburgh and Cognitive Neurology at the University of Cambridge, UK. She established a memory clinic at NIMS Hyderabad and co-founded ARDSI Hyderabad-Deccan that is committed to provide service and care to persons with dementia and their families. Her research interests lie in Alzheimer’s disease, Frontotemporal and Vascular dementias and in identifying risk and protective factors for dementia, especially in the Indian context.
Anita Mary (Early Career Researcher, ARDSI-Alzheimer’s And Related Disorders Society of India)
Dr. Anita Mary is a mental health professional and practitioner with ten years of counselling experience among adolescent and early adults. She has been a social work educator for ten years. She holds a Masters degree in Social Work and Post Graduate Diploma in Counselling and Psychotherapy, and her doctoral research was in the area of adolescent mental health. She has published papers related to adolescent well-being.
STRiDE INDIA ASSOCIATES
Mathew Varghese (Geriatric Psychiatrist, NIMHANS)
Dr. Mathew Varghese is the Head of Geriatric Psychiatry, NIMHANS. His interests lie in Geriatric, Adult, Family, Community and Rehabilitation Psychiatry. He has worked in various research projects and published papers in dementia. He has edited the Dementia India Report 2010 and National Mental Health Survey 2016.
Girish N Rao (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr. Girish N, a medical graduate with a postgraduate degree in Community Medicine is trained in epidemiological methods and Public Health. He has been associated with nearly 50 research projects at NIMHANS since the past decade. The key areas of research have been geriatric mental health, maternal mental health, alcohol epidemiology, health economics and community mental health. The focus has been on health systems with a public health perspective leading on to operational and translational research. Dr. Girish was the co-investigator for the India component of the World Mental Health Survey – Bangalore study and is a member of the International Group for the Study of Alcohol’s Harm to Others. He has been the Co-PI for the recently concluded globally the second largest study, the National Mental Health Survey, which was funded by Government of India. Dr. Girish was instrumental in setting up of the Public Health Observatory of the Centre for Public Health in Kolar. With a penchant for teaching, Dr. Girish professes participatory learning adopting adult learning principles.
PriyaTreesa Thomas (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr Priya is a Master of Social Work from Rajagiri College of Social Sciences, and subsequently, PhD in Psychiatric Social Work from National Institute of Mental Health and Social Sciences. Currently, she is working as a faculty member in the department rendering her services to the neurologically ill and is involved in clinical, teaching and research activities. In NIMHANS, she essentially concentrates her clinical expertise in social work with the persons suffering from various neurological illness and their families and works extensively with dementia. Dr Priya is passionate about compassionate care and building micro-skills in clinical social work professionals.
Narendhar Ramasamy (Executive Director, ARDSI-Alzheimer’s And Related Disorders Society of India)
Mr. Narendhar has been the Executive Director of ARDSI since 2009. He is also a founding member of the India Alliance for Patients’ Group and Healthy India Alliance (a member organization of Global NCD Alliance). He is the Vice President of Society for All Round Development-SARD. He has been actively engaged in public policy and advocacy for Dementia, rights of elders and children.
Bina Berry (Quogent Consulting, Delhi)
Ms. Bina is a public affairs specialist with experience in communications, advertising and public policy. She studied in various countries and graduated in English Literature from Delhi University. She has worked with large organizations in India, Hong Kong, Qatar and Germany, and has also worked with the Indian and US governments. Ms. Bina is an active member of the ARDSI, a non-profit organization that works at finding solutions for both patients and caregivers of dementia.
Chandra Sasi (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr. Chandra graduated from various Govt. Medical Colleges in Tamil Nadu. She has worked with the Kerala state government teaching service before joining NIMHANS. Dr. Chandra has always been interested in human cognitive functions as it seems to merge with spirituality.
Goswami S. P (All India Institute of Speech and Hearing, Mysore)
Dr.Goswami holds a doctorate degree in Speech and Hearing as well as a PGDHRM and MBA in Health Care Management. He is first Speech and Hearing professional to receive the prestigious CV Raman fellowship from UGC, Government of India as Visiting Scholar at College of Applied Health Sciences, Department of Speech & Hearing Science, University of Illinois at Urbana-Champaign, USA. He is currently working as Professor and Head Telecenter for Persons with Communication Disorders. He formerly worked as the Head of Department of Speech-Language Pathology Academic coordinator, clinical services????, AIISH, Mysore. He has more than 18 years of academic, clinical, research and administrative experience. He works in the area of aphasia, ageing and neuro-cognitive communication disorders in adults and elderly. He has participated at national forums for capacity building, matters for framing policy and other in the area of Speech-Language Pathology and Audiology. He has served ISHA for more than 12 years in the capacity of Honorary Editor, Secretary, Treasurer and joint secretary.
Indrani Gupta (Health Policy Research Unit of the Institute of Economic Growth (IEG), Delhi)
Dr.Indrani Gupta is the Professor and Head of the Health Policy Research Unit of the Institute of Economic Growth (IEG), Delhi, India. Her work experience has been diverse, including academic institutes, the World Bank and the Government of India. Her areas of interest cover a wide range of topics in the area of health economics and policy, and include demand for health and health care, health insurance and financing, poverty and health, costing and cost-effectiveness, economics of diseases, and international agreements.
Manjari Tripathi (All India Institute of Medical Sciences (AIIMS), Delhi)
Dr.ManjariTripathi completed her training in Neurology at NIMHANS, Bangalore in 1996. Her main areas of interest are intractable epilepsies, women with epilepsy and functional neuroimaging in epilepsy. She is also interested in the use and programming of implantable devices in epilepsy, spasticity and pain. Her other areas of interest are cognitive disorders specially dementias; childhood acquired aphasias, sleep medicine, multiple sclerosis and tropical neurology.
Vinod Mallya (Mangalore)
Mr. Vinod Mallya has been an entrepreneur running a rice mill in Mangalore. He was instrumental in transforming the labor intensive mill into a modern automated factory. He also exported the products to various countries. He has great affection towards animals.
Poornima Mallya (Mangalore)
Mrs. Poornima Mallya has played a key role in Vinod’s success. She is a proud mother of two smart boys. Her gentle demeanor has been the force behind their success too. The empty nest syndrome has resulted in the beginning her own entrepreneurial journey post 50. She participates in various textile exhibitions, and has been successful alongside taking care and supporting her husband.
Mina Chandra (Neuropsychiatrist, Dr. Ram Manohar Lohia Hospital, New Delhi)
Dr. Mina Chandra is a Neuropsychiatrist [DNB, Psychiatry-Gold medallist; PhD-Neurology] interested in dementia related research, awareness and education. She is presently working on GACD awarded project on CST (PI: A Spector, UCL): As CI DST awarded project on development of a mobile app for community-based detection of dementia: As PI (Collaborators: Murali-Krishna, SP Goswami, S Vaitheswaran).
Mohammed Asheel (Executive Director, Kerala Social Security Mission and National Institute of Physical Medicine and Rehabilitation)
Dr. Mohammed Asheel received his MBBS degree from Kerala University and Masters in Public Health (MPH) from SreeChithraTirunal Institute, Trivandrum. He is currently working as the Executive Director Kerala Social Security Mission and National Institute of Physical Medicine and Rehabilitation. He is also a Project Director for the State Initiative on disabilities. He has been selected as one of the 12 young leaders of Health in India by the Government of India and underwent training in Japan in 2012. He was awarded as Youth Icon in Health in the Kerala in 2011 and 2014; and Good Services Entry by Government of Kerala in 2012 and 2016. He attended the Salzburg Global Seminar on Dementia in 2017.
Narendra Kumar Arora (The INCLEN Trust International, New Delhi)
Prof. NK Arora holds a M.D. from the AIIMS, New Delhi (India). He received MMSc in Clinical Epidemiology & Bio-Statistics from the University of Newcastle, Australia under the INCLEN Program. He worked as a faculty member since 1983 and as a Professor of Pediatrics Gastroenterology, Hepatology and Nutrition at the All India Institute of Medical Sciences from 2004 – 2007. He currently serves as the Executive Director of The INCLEN Trust International, a post he has held since 2005.
Nilanjana Maulik (ARDSI-Alzheimer’s And Related Disorders Society of India, Calcutta)
Ms. Nilanjana has a Master’s degree in Sociology, Human Services & Dementia Studies. She also holds a certificate in Successful Aging & End of Life Care from Stanford School of Medicine and is an International Master Practitioner of Spark of Life Philosophy, from Dementia Care International, Australia. She has represented Persons with Dementia for the past 24 years and has been successful in implementing various community initiatives.
Premkumar Raja (Social Entrepreneur, Bangalore)
Mr. Premkumar Raja is a social entrepreneur based in Bangalore with over 30 years of experience as a community welfare and healthcare administrator. After completing his MA and MPhil in Demography from Annamalai University, he began his career in 1987. He cofounded Nightingales Home Health Services in 1996 and Nightingales Medical Trust in 1998. Under his leadership, the Trust has set trends in age care and dementia care services in India.
Pretesh Kiran (Associate Professor, Department of Community Health; Co-ordinator of Senior Citizen Health Service, St. John’s Medical College, Bangalore)
Dr.Pretesh Kiran is the recipient of several awards including the ‘Young Scientist Award’ from the Karnataka Association of Community Health in 2009. He was one of six candidates all over India to be awarded a 2 year research mentorship from the National Institute of Health, USA and the Indian Cardiovascular research and Advocacy Group in 2009-10. He is an EC Member, Karnataka Chapter of the Indian Academy of Geriatrics. He was a Health Consultant and Reviewer for the final report – National Consultative Workshop to evolve ‘Aspirations for the Elderly in India’ in 2013. He was also Member, Task Force for the Elderly, Division of Science and Technology, Karnataka and an invited expert to the Round table meetings of the Karnataka’s Initiative on Technology intervention for the Geriatric population and helped initiate and secure funding from DST, India for 3 projects on technological innovations for the elderly. He was also a member of the Geriatric panel that helped evolve recommendations for the Karnataka Knowledge Commission in 2017. His other areas of interest include Disaster Health, Medical Education and Occupational Health.
P.S. Mathuranath (Professor, Department of Neurology, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr.Mathuranath is a Professor for Neurology at National Institute of Mental Health and Neuro Sciences (NIMHANS)India. His special interests lie in cognitive neurology and Alzheimer’s dementia. He was a post-doctoral fellow in Cognitive Neurology at Addenbrooke’s Hospital, Cambridge in the United Kingdom between 1998 and 2000. He was also a Visiting Scientist in the department of Neuroscience at University of Western Ontario, Canada from 2008 to 2009. Prior to NIMHANS, he was affiliated with SreeChitraTirunal Institute for Medical Sciences and Techology, Trivandrum. His research interests reflect in his wide range of publications in various national and international journals.
Radha Murthy (Nightingales Home Health Services and the Nightingales Medical Trust, Bangalore)
Dr.Radha Murthy, an alumnus of St. John’s Medical College, Bangalore is a brilliant academician with over 30 years of medical experience. She is an eminent doctor who believes in humane and personalised care for her patients. Her vision and zeal led to the formation of the Nightingales Home Health Services and the Nightingales Medical Trust – two prominent healthcare organisations in Bangalore. She spends time with her patients, showing concern, listening to and sharing their emotions and burdens. Her service to the society is well known. She was conferred the Rajyothsava Award by the State of Karnataka in 2003 in recognition of her services.
Rajani Parthasarathy (Mental Health of Karnataka, Health and Family Welfare Services, Karnataka)
Dr.RajaniParthasarathy got her DPM from CMC Vellore with more than seventeen years experience in Psychiatry. She has worked as a psychiatrist in the Bangalore Central Jail from 2004 to 2010.). Dr Rajani was instrumental in initiating a collaborative study with NIMHANS, the Prison Department (Government of Karnataka) and Karnataka State Legal Services Authority titled ‘Mental Health and Substance: Assessment and Approach in Prisons. The study spanned from 2008 to 2010 and Dr.Rajani served as a co-investigator studying 5024 prisoners. As part of the study, recommendations were made by the team to improve the mental health of prisoners. She then worked as a Psychiatrist in Ramanagara District Hospital till January 2016. Dr.Rajani is currently the Deputy Director, Mental Health of Karnataka Health and Family Welfare Department. She has been instrumental in extending DMHP to all districts (30+1) of Karnataka in 2016-17 to cater to needy mentally ill beginning at the PHC level.
Rajendran (CEO, Society for Action in Community Health)
Mr. Rajendran is a professional with over 25 years of experience in community health issues. He holds a post-graduate degree in Economics and completed an advanced course in Management from University of Birmingham, United Kingdom. He established REGAIN-WELLNESS Centre combining physiotherapy and AYUSH for the treatment of people affected with paralysis and developed a comprehensive training module for training ‘caregivers’ for geriatric care. He has worked on a range of health issues of the elderly, including a research study on Quality of Life.
Ratna Devi (CEO and Co-founder, Dakshayani and Amaravati Health and Education, Delhi)
Dr.Ratna Devi is the CEO and Co-founder of Dakshayani and Amaravati Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. A medical doctor, public health and management professional, Dr.Ratna Devi brings more than 25 years of experience working to improve health outcomes in India. She began her medical career with 10 years of government service, and for the past 15 years, she has worked with national and international NGOs.. She is a WHO Technical Expert for the working group for Global Coordinating Mechanism for NCDs on meaningful involvement of people with NCDs. She leads a cross disease Patient Alliance in India called Indian Alliance of Patient Groups (IAPG) and works towards policy change, human resources capacity building and system strengthening.
Roop Gurusahani (Neurologist, PD Hinduja Hospital, Mumbai)
He is a practicing clinical neurologist since 1991. His subspecialty interests are in Epilepsy and Neuro palliative care. He is associated with Forum for Indian Neurology Education (FINE), Epilepsy clinic on the Lifeline Express and End of Life Care in India Task force (ELICIT). He is currently in the Executive Committee member of Indian Academy of Neurology. He is also a steering member of the Indian Association of Palliative Care.
Sathyanarayana Tamysetty (Indian Institute of Public Health-Bangalore, Public Health Foundation of India)
Dr.Sathya holds a medical degree along with a Masters in International Health from UCL. He also received a Masters in Management and Hospital administration and PhD in Health Policy from University College, London. He has over 18 years of experience in public health program management, public health education, teaching, research and advocacy initiative with focus on health system and policy. His research has focused on sustainable, high quality, affordable,innovative, context specific health system innovations, monitoring, evaluation and strategic direction among LMICs. He also works on health system and policy analysis, political-social-institutional analysis, implementation analysis, and impact evaluation.
Subasree Ramakrishnan (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr.Subasree received her DM in Neurology from NIMHANS and now serves as an Assistant Professor of Neurology at NIMHANS. She received the Young Investigators/Scientist Bursary from the World Congress of Neurology at Vienna, Austria. She received the Kobe API Merit I Prize in Internal Medicine 2002. She is a member of a number of neurological societies including Indian Academy of Neurology, Clinical Neurophysiology of the Indian Academy of Neurology and Neurological Society of India.
Shiv Kumar Sharma (National Brain Research Centre, Gurgaon)
Shiv Sharma is a Scientist and Professor at the National Brain Research Centre, Manesar, Haryana. His research focus is to elucidate the mechanisms of memory formation and memory impairment. His laboratory uses multidisciplinary approach of molecular, electrophysiological and behavioural analyses to gain insights into memory formation. His interest in Alzheimer’s disease, is focussed on identification of neuro-protective compounds and elucidating the mechanisms by which amyloid beta adversely affects synaptic plasticity and memory.
Sivakumar Thiagaraju (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr.Sivakumar has been faculty in the Geriatric Clinic and Services, NIMHANS for the past 12 years. He is the Vice-President of ARDSI, Bangalore Chapter and theNodal Officer for Implementation of National Legal Services Authority (NALSA) Legal Services to Senior Citizens Scheme in Karnataka. Dr.Sivakumar is also the Officer in Charge at theKarnataka State Resource Centre for Senior Citizens. He is actively involved in Dementia Care and research. He has contributed to intitiating new training courses in geriatric psychiatry, psychosocial care for elderly, geriatric mental health nursing.
Sridhar Reddy (Deputy Director, NISD; Ministry of Social Justice, GOI, Delhi)
Dr. Reddy, presently Deputy Director –Training and Head of Old Age Care Division of National Institute of Social Defence (NISD), Ministry of Social Justice & Empowerment has a profilic background in social work. He has worked as a Research Officer, UNICEF State Programme Officer, worked in Justice N.K Patil Committee/Ayog and has been associated with the programmes & schemes of the Government of India in the field of senior citizens. Dr. Reddy has attended & presented papers various conferences and seminars at the national and international level. As Head of Old Age Care Division, he has been instrumental in conducting various awareness & training programmes in collaboration with different stakeholders such as RRTCs, Schools, Colleges, Universities, State Institutes etc.
A Thirumoorthy (National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore)
Dr. A Thirumoorthy, equipped with 20 years of teaching, research and clinical experience now works in mental health, providing high quality psychosocial intervention services to patients and their families. His special interests are in geriatric mental health and palliative care services.
Vidya Shenoy (ARDSI-Alzheimer’s And Related Disorders Society of India, Mumbai)
Equipped with a Masters in Economics, Finance and Management, she is currently the Secretary General of Alzheimer’s & Related Disorders Society of India and Honorary Secretary of its Mumbai Chapter She is aboard many medico-social causes practicing integrated therapies like yoga for those with Alzheimer’s Disease, spinal cord injuries and children with special needs. She teaches at centres of Shri Ambika Yoga Kutir. Her passion for volunteering in Alzheimer’s care is updated with continuous study, spreading awareness with sensitivity, conducting workshops, counselling for seniors, families and caregivers of those affected by dementia. She now runs aa successful dementia day care Centre in Mumbai called the Universe of Memory, SmritiVishvam.
Sunil Prem Ahuja (Director/Proprietor/Partner – Ahuja Global Corporation, Texxol Global Corporation, Ahuja Petroleums)
He is a businessman who owns companies that manufacture petroleum products and oils. He currently works towards the setting up of ‘Diesel Exhaust Fluid’ plants in India to combat NO & NO2 emission as per Euro-6. He enjoys wildlife and nature and his hobbies include photography, collecting art work and trekking in the Himalayas.
Saadiya Hurzuk (Centre Manger and Psychologist, ARDSI Hyderabad DEcaan)
She is a Psychologist with MSc in Dementia studies from University of Stirling. She has over 6 years of experience as a dementia professional working in various different setups like hospitals, daycares and memory clinics and is currently working as Centre Manager and Dementia Psychologist at ARDSI Hyderabad Deccan, running a full time Dementia daycare incorporating a holistic approach. She is involved in various studies like person centred approach in dementia care, benefits of cognitive stimulating activities in people with dementia, etc. and actively campaigns for dementia awareness across India.
Senthil Amudham (Associate Professor, Department of Epidemiology, NIMHANS)
Dr.Senthil is a public health expert. He has trained ASHAs on dementia as a part of their larger mental health training.
Vikram Arunachalam (Consultant Psychiatrist, District Mental Health Program, BBMP)
Manjula S (Psychiatric Social Worker; District Mental Health Program, BBMP)
Dr. Venkatesh (Program Officer DMHP and NPCDCS, BBMP)
Dr.Rekha (State Nodal Officer NPCDCS, BBMP)
Agenda for the ToC workshop
Day 1- Thursday: 14th June 2018
Welcome: Suvarna Alladi, Neurology, NIMHANS, Bengaluru
Inaugural Address: Prof. BN Gangadhar, Director, NIMHANS
Address by Mrs Meera Pattabiraman, Chairperson ARDSI
Address by Erica Breur, STRiDE UK
Address by Prof Mathew Varghese, Geriatric Psychiatry, NIMHANS
|10.45||Stakeholder presentations I||Prof Mathew Varghese: Psychiatry, NIMHANS, Bengaluru
Prof Indrani Gupta: Institute of Economic Growth, New Delhi
Mrs Meera Pattabiraman: ARDSI, Chennai
|11.10||An introduction to Theory of Change||Suvarna Alladi: Background of STRiDE and ToC workshop.
Erica Breur: Key concepts of ToC
|12.00||Surfacing challenges and assumptions||Group discussions and feedback|
|12.40||Agreeing on impact – what would success look like for us?||Group Discussions: Discuss the STRiDE India primary objective: to contribute to improving dementia care, treatment and support systems so that people living with dementia are able to live well, and so that their family and other carers do not shoulder excessive costs or risk impoverishment or experience their own health problems|
|13.00||What needs to be in place for us to achieve this? Developing an outcomes map||Group Discussion: Identify Key outcomes|
|14.30||What needs to be in place for us to achieve this? Developing an outcomes map||Group Discussion: Developing an outcomes map|
|16.00||How do we achieve it? Developing strategies and interventions||Identify areas for intervention and develop strategies based on ToC|
Day 2- Friday: 15th June 2018
|10.00||Stakeholder presentations II||Dr NK Arora: The INCLEN trust International, New Delhi
Prof Girish N Rao: NIMHANS Neuroepidemiology, Bengaluru
Dr Radha Murthy: Nightingales Medical Trust, Bengaluru
Dr RoopGursahani: PD Hinduja Hospital, Mumbai
Dr Sreedhar Reddy: Ministry of Social Justice and Empowerment, New Delhi
|11.00||Presenting and Reviewing the ToC map for Improving Dementia Care in India||
Group discussion and feedback
|11.45||Reviewing the ToC map and
Indicators of Success
Identify indicators for key outcomes
|12.15||Closure and next steps||Development of STRiDE India plan|
Appendix 3: Detailed List of Challenges and Assumptions listed in the workshop
Finances and resources
- No insurance coverage for dementia care at present
- Lack of financial support
- Creating knowledge on costing – need to get data from micro and macro levels
- Study the economic impact of dementia
- Lack of consistency of term ‘cost effectiveness’ by professionals
- Develop modules on out of pocket spending
- Costing data is not available (data on dementia cost is not available)
- Intervention costing is to be established
- Need for dedicated institutional resources: Infrastructure for dementia care is limited in both public and private sectors
- Address 90% treatment gap in dementia
- Inadequate assistive solutions and reluctance to adopt these assistive devices
Families and care giving
- Highlighted the presence of unpaid care
- Change in family structure and dynamics
- Change in the roles of family members especially women
- Impact on family income and family members occupational functioning
- Impact of children of family due to dementia diagnosis
- Understanding the perspective of caregivers
- High burn out of caregivers and health personnel
- Lack of support system
- Lack of coordination in caregiving for dementia
- Poor communication with caregivers
- Social security for persons with dementia and caregivers
- Unpaid care
- Quality of care for caregivers
- Terms used for dementia to take into consideration dignity and rights of persons with dementia
- De-stigmatizing language for dementia
- Problems with definition still persist
- When does the disease start?
- Dementia termed as a medical problem and not as a psychosocial problem
- Research on what is happening within families in caring for dementia, costs involved and approach , study economic impact
- Research focusing on enhancing quality of care
- Lack of support of mechanisms and expertise in conducting research in dementia
- Evidence gap: managing patients in urban vs rural areas, at home
- Lack of preventative strategies
- Lack of multicentric epidemiological data
- Lack of funding and collaboration
- Lack of financial support/ funding for conducting such research
- How increase in life expectancy can serve the community and nation in the background of with and without dementia
- Need to identify and develop capacity at multilevel professionals, Lack of education at various levels within health professionals
- Communication skills for health professionals
- Human resource for training to step up care at multiple levels
- Personal care
- Care of bowel and bladder
- Inadequate networking of care assistive solutions and training
- Initiating palliative care approach
- Lack of services
- Unstable market for professional care giver training/availability
- Health care system at primary and high levels are not equipped to deal with dementia
- Lack of certification and good quality training programs for caregivers in dementia
- Lack dementia care centre
- Intervention strategy kit
- Dedicated trained human resource for service delivery not just ASHA workers
- Shortage of clinicians and other dementia specific personnel
- Assuring quality
- Lack of volunteers and self-help groups
- No facilities for home care management
- Lack of trained providers to address person centric approaches
- Lack of trained providers to address Consumer centric approach
- Utilize elder services for health care
- Address comorbid conditions
- Delay in care seeking for dementia
- Lack of screening
- Misconceptions about the complaints
- Lack of early intervention
- Early diagnosis
- Absence of early detection facilities
- Lack of screening and diagnostic tools for illiterate population
- Short term management
- Need for outcome indicators
- Long term management
- Faith healers and quackery
- Treatment gap
- Privacy and confidentiality of PwD and caregivers
- Not using bio psychosocial model of dementia
- Multidisciplinary service delivery
- Tech assisted models of care like eHealth, mHealth, telemedicine
- Early treatment to minimize progression
- Explaining prognosis
Inclusiveness in society
- Abuse of dementia patients
- Value elder’s contribution in society
- PwD as a community resource person for skills and competencies already learnt (remote memory) accessible today?
- Strategies of pooling resources in the community to provide care to approach a common cause
- Cultural dimension
National Dementia Plan
- Study economic impact
- Infrastructure for dementia care is limited in both public and private sectors
- BPSD standard protocols
- Cultural care management model
- Lack of group practice
- Steps model
- Policy and political
- Siting of service delivery
- Corporates through CSR
- Steps model
- Social problem – activity, participation, social roles and identity
- Technology – mHealth, eHealth, directory of services, service providers
- Economics – cost of illness (direct and indirect)
- Multisectoral collaboration
- Lack of models in the country
- Lack of awareness
- Awareness lacking at all levels
- Formal: school, college, professional centres, CMEs
- Informal: media, social media
- Social and language stigma
- Low level of knowledge
- Awareness (KAP)
- Public health response, Ayush
- Affordability of services for care, pooling
- Prevention vs deceleration
- Role for legal aid, Legal issues, Legislative support for persons with dementia
- 90% pendency rate of court cases in Bombay high court if elderly is litigant
- Only 1% of GDP is spent on health and even less on dementia
- Inclusion of dementia and elderly care
- Political will and policy
- Site of service delivery; tertiary care to community
- Public private partnership approaches
- Using government funds in appropriate ways in dementia
- Monitoring functionality of health facilities and services
- Lack of regularity of framework (no uniformity)
- Rural-urban divide
- Setting benchmarks
- Lack of convergence among stakeholders
- Lack of policies
- There is a need to come up with numbers – the baseline data – how much spending is going on for dementia by the government- in order influence policy making.
Appendix 4: The outcomes put forward by participants in Session 4.
- Stakeholders are aware about dementia leading to behavioural change for dementia inclusive communities
- Society is aware about lifestyle modifications to delay/prevent dementia
Definition and terminology
- Use of acceptable terms in local context
- Dementia is recognized as biopsychosocial phenomena
Inclusiveness in society
- Person with Dementia are recognized as productive participants of society
- Person with Dementia and their carers are recognized as experts for their own care
- Person with Dementia should seek help and access health care systems early
- Government and community systems support Persons with Dementia
- There is a national policy for elderly care, dementia with palliative care
- Implementable national action plan with built in accountability; monitoring framework is robust
- Validity for 5 years that needs periodic review. Revise it based on socioeconomic and lifestyle changes in society
- Elderly care services are accessible to screen and diagnose dementia across healthcare systems
- Healthcare providers are able to recognize reversible and treatable causes of dementia
- Sensitive communication and revealing the diagnosis to patients and family carers
- People get access to initial diagnosis through memory clinics at primary health care level
- Strengthening referrals
- Subtypes of dementia are recognized
- Development of certified models of training for all levels of care
- Increase in range of services and providers
- Capacity building of service providers and manpower
- Caregivers have the skills to provide care to Person with Dementia
- There are adequate carers for all stages of dementia
- Patients with dementia are diagnoses early and caregiver needs are recognized
- There is high quality comprehensive care at all levels of institution, society, community and family
Management guidelines and capacity building
- Standardized and accredited dementia management courses are available across the spectrum of care providers
- Skill building of human resources with standard and accredited dementia courses across the spectrum of healthcare
- Skilled carers get caregiving jobs through placement networks
- Education and training for home-based care for dementia management is available
- Systems are in place to provide support to unpaid carers
- Government to provide social security – pension and social support to unpaid caregivers
- System in place to recognize and identify early caregiver burden
High quality evidence from research on dementia is available including descriptive epidemiology from multiple areas using harmonized methods, research on costing, basic research, innovative interventions, and implementation research