Action Areas to Contribute to, and Possible Approaches

This page is part of the section Resources for volunteers. Use the menu option on top, or the right sidebar, to see the other pages in this section.

Persons who want to help dementia caregivers come from a variety of backgrounds and have different individual motivations to work in this field. Some have been caregivers, or have known someone with dementia. Some are volunteers working with seniors or disability, some are professionals already working in dementia or related areas like geriatrics, mental health, neurology, etc. Whatever the motivation, they are probably exploring how they can contribute, and what they need to do to be effective.

This page discusses possible broad spheres for contribution, and how individuals can combine their interests, skills, and situation (funds, time available, and so on) to move forward and contribute. On this page:

Possible action areas in the dementia domain

To understand the overall situation of dementia and related caregiving in India, please check out the links in the section: Understand dementia and care in the Indian context

A broad framework of areas in which to contribute can be derived from the Dementia India Report 2010. and the Dementia India Strategy 2018.

As per Figure 4.2 of the Dementia India Report, 2010, the following are the barriers to Dementia Care in India: (note that in the quotes from the report, PwD stands for Persons with Dementia)

  • Stigma
  • Lack of awareness: Feeling that nothing can be done
  • Low Health seeking behavior for memory problems: Feeling that it is Part of Normal Ageing
  • Lack of Policy Initiatives for People with Dementia
  • 3.7 million people with dementia and less specialist manpower to manage them
  • Lack of training and support. Services need scaling up
  • Poor awareness even within the medical fraternity
  • Lack of funds for dementia services, research and training

The Seven Core strategies summarized in Table 4.2 of the report can help potential contributors think of areas to work on.

Area of focus: what to deliver How to deliver Who could deliver Where to deliver
Create awareness Effective use of media, films, provide disability benefits to PwD and carers, fight stigma, improve quality and accessibility of services Government, NGOs, health professionals, media Community primary care, memory clinics
Capability building of health care teams Training medical nursing fraternity in dementia management, train health care workers, Anganwadi(1) workers, ASHA(2) in delivering long term care Doctors, nurses, multi-purpose health workers, ASHA (2) and other community outreach workers Hospitals including primary health care centres
Provide affordable treatment (pharmacological and psychological) Develop and use cheaper generic versions of anti-dementia drugs. Use existing resources for care. Integrate long term care and support interventions into programmes for all dependent elderly Patients on anti-dementia drugs can follow-up with the primary care physicians after being seen by a specialist. Community health workers could be trained in long term care Community Primary health care level
Effective long term care through Community based programmes Train carers to establish support groups, domiciliary visits to families of PwD Community health workers or staff specially appointed for community elder care Primary care, community
Residential, respite and day care facilities Specialized facilities with trained personnel couuld be established for this purpose. This will cater to severe cases of dementia or those who do not have any support NGOs, Government Community
Develop legal services Provide the much needed legal support NGOs, Government, law enforcing agencies Community
Develop Training services Institutes for training geriatric home nurses, Training workshops for medical fraternity could be established Government, NGOs Throughout the country


(1)Anganwadi worker: Local health functionaries under the ICDS Scheme
(2)Accredited Social health Activists (ASHA): Lopcal health functionaries under the National Rural Health Mission

The recommendations are listed as (Chapter 5 of the report):

  1. Make dementia a national priority
  2. Increase funding for dementia research
  3. Increase awareness about dementia
  4. Improve dementia identification and care skills
  5. Develop community support
  6. Guarantee carer support packages
  7. Develop comprehensive dementia care models
  8. Develop new National Policies and Legislation for PwD

The Dementia India Strategy 2018 document also identifies seven actionable areas:

  1. Make dementia a national health and social care priority: Declare dementia as one of the national public health priorities
  2. Dementia Awareness and dementia friendly communities: Develop comprehensive sustainable awareness information packages to address multi-stakeholders including service providers
  3. Risk reduction and dementia prevention: Reduction of Non communicable diseases (NCD), alcohol consumption, salt intake, hypertension, tobacco, indoor air pollution, Increase Physical activity, availability & affordability of NCD drugs.
  4. Improve access to best medical care, strengthen standard treatment protocols: Strengthen and augment tertiary care regional centres for elderly/dementia care,
    develop patient centric care plan and continuity of care plan.
  5. Social support services: Inclusion into health insurance, standard civil dispute settlements, create dementia friendly environment in transport, welfare services, old age pension, legal service and medical care, develop area specific community friendly memory clinics/community models
  6. Research and Development: Develop/discover/deliver new innovative dementia friendly devices, processes, drugs
  7. Strengthen dementia disease surveillance system: Improve database/ information management system through effective surveillance.

Clearly there is a lot to be done. Caregivers I have met (and also surveyed) often mention the following areas:

  • Availability of trained attendants for dementia home care
  • Training programs for family caregivers
  • Dementia and caregiver training material in local languages
  • Caregiver support groups and forums
  • More day care (with conveyance) and respite care facilities
  • Much higher levels of dementia awareness in society
  • Better and faster diagnosis (many families are unable to get a timely diagnosis even after consulting doctors)
  • Medical personnel being trained on dementia and its care (many families face problems when they take the patients to Emergency Rooms, nursing homes and hospitals)
  • More facilities for caregivers to be able to work part time and from home
  • Financial subsidies and support

This “wishlist” is fairly consistent with the core strategies outlined in the various published dementia reports.

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Approach for seeing how and what to contribute

As is clear from above, so many areas need work that any well-informed contributor can make a positive difference. There are things to do for those who want to start vast projects, and there are things that can be done by persons with limited time and energy; the possibilities are huge.

The only caution to remember is, having good intentions is not a substitute for knowledge.

For effective contribution to a cause, potential contributors need to have some clarity about the amount of time, money, and effort that they are willing to put into the effort, their qualifications and experience, their ability and willingness to learn new things, and the duration of commitment they are willing to make. Some questions potential contributors can ask themselves:

  • What are my relevant qualifications, experience and skills? (This will determine the tasks and responsibilities that can be undertaken, and also credibility when talking to others, seeking funds, etc.)
  • How much spare time do I have for contributing to dementia? For how many days/ weeks/ months can I commit my time and energy? (This will determine the amount of work that can be taken up, and the availability that colleagues and others can depend upon. For example, someone who starts a venture needs to have a sufficiently long commitment to get the venture operational and to hand over to suitable persons in case of exiting later. But those with just a little time to spare can still contribute meaningfully by taking on short-duration tasks, such as helping with some activities, or preparing a document, or changing some processes to improve efficiency, doing some marketing, etc.)
  • What is my financial approach? Do I want to do the work free, do I want to be reimbursed for expenses, do I want some honorarium, do I want a proper salary?

If you have deep commitment, relevant skills and connections, and experience and confidence, etc., you may undertake work that requires a higher degree of involvement and take on a leadership role where you envisage a project and then gather a team, funds, resources, etc., and implement it/ take a major role in it. That is, you can design and lead a dementia-related project.

A lot can also be done even with limited time, effort, funds, involvement, etc. There are many types of dementia-related projects where you can participate in small and big ways. Some examples:

  • Provide funds: Provide funds to a group of persons who have the skills to contribute and a project they can take up, or which they are already executing. Funds are needed for all things, such as salaries, rent, material, equipment, etc. Keep close watch on the work they do and how they deploy your funds.
  • Provide resources: Even if you don’t have spare funds, you may still have spare resources that can help. For example, you can offer your premises for some project (like a day care or memory clinic), or as a meeting place.
  • Offer your dementia-related or care-related expert skills: If you are a specialist (such as a doctor, an occupational therapist, speech therapist, counsellor, etc.) offer to work part-time or full-time, or take up a job in an existing project. Or help train persons on the project for better interactions with persons with dementia, etc.
  • Offer your administrative/ managerial/ IT skills: For example, help with the administrative work required, set up systems and procedures, help them with IT support, websites, etc. Use innovative ways to extend management/ technology ideas so that the benefits can reach more persons especially where families do not have IT access and need it to view videos, etc.
  • Use your social networks, contacts, marketing skills, and position for outreach: You may be part of various communities and have various social connections. These can be used to spread awareness in the community, or work on advocacy, etc. Some communities may have elders or others who can benefit from dementia-related projects; you can help people who need help reach people who can support them. Your social and job related contacts may be useful for advocacy efforts, such as influencing policy makers, fund providers, event sponsors, or potential endorsers (like celebrities), etc. Maybe you can help the project reach more potential beneficiaries, or convince health services and hospitals etc to get involved.
  • Offer your time: Any initiative needs a lot of work (these need not be medical tasks or social work). Offer your time and take over some tasks/ support others depending on your availability, skills, comfort, etc.

There are a wide variety of dementia-related projects. To decide which sort of project you want to contribute to, consider what sort of work you would find useful and satisfying. For example, do you want to work at a community level,across various social segments? Do you want to focus on one specific section of the population, or one specific type of problem/ need? Do you like meeting people and talking in public, or do you prefer desk-based background work? Are you comfortable meeting persons with dementia or family members supporting dementia? Would you be willing to travel? Are you comfortable meeting persons of different social and economic profiles and interacting with them?

Note that howsoever good your intentions, to be effective in any contributory role, you may need to learn more about dementia. For example, even if you have personally interacted with someone with dementia, if you want to do this as a volunteer you may need to learn more about various ways people are impacted by dementia, and relevant communication skills and ways to support, etc. This needs to be taken into account while deciding how to contribute. Even if you do not plan to interact with anyone who has dementia (you may just be funding a project), you need a sufficiently realistic understanding so that you have realistic expectations of what can be achieved and in what time frame; a better understanding will also help you evaluate how well your funds/ time/ effort/ resources were used.

Experience, networks, and resources can be developed using an incremental approach. Often potential contributors have big visions and dreams. Some think there is no point doing anything small, and start a big venture, but this does not always work out as the team may not have the required experience, funds, goodwill, networks, etc., and the project starts looking more and more complicated as they work on it. All the work gets lost when such projects are abandoned. While some entrepreneurs may be able to start directly on a large project, most potential contributors will find it helpful to first participate in another project and get a better understanding of what is involved before launching something big. That way they start contributing right away, learn more, build contacts, and get the confidence to take on bigger projects. Their learning process itself is a contribution and even if they stop or change their mind (whatever the reason), there is no “wasted” effort. Please remember that most big , useful projects we see actually started off small, and kept growing.

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Special notes if you are an ex-caregiver who wants to contribute

If you are an ex-caregiver, here are some additional thoughts.

Share perspectives based on actual care. These are not easily available to current caregivers or to people working in the dementia domain and sharing these a very valuable way to help others. Some possibilities:

  • Write articles/ book/ create videos or make yourself available for interviews where you can share how dementia affected your loved one and you, challenges faced, mistakes and triumphs, etc. Pleas remember that other caregivers need to know not just the solutions but also the problems and heart-breaks and mistakes so that they get a realistic idea of what happens and feel less isolated. Even the general public news to know all angles of the problem.
  • Participate ion in-person or online support forums. This is a direct way of listening to and sharing with other caregivers.
  • Contribute your caregiving perspective with volunteers and professionals. Many professionals and volunteers may not have any direct personal experience of supporting a loved one with dementia. So contributing the caregiver perspective to them can make them more appreciative of the situation and enable them to be more sensitive to and give more relevant advice to families. It is not always easy to be heard by and visible to professionals and this type of contribution may need some persistence, and sometimes a thicker skin.

Be wary about possible burn-out: One note here is that often caregivers intend to contribute but find that it brings up too many memories and tires them emotionally, especially after the loved one passes on. Many ex-caregivers have realized they were more burned out that they knew and that they just can’t muster up the energy for some intense sustained project related to dementia because it just hurts too much. They may find they just want to move on.

Ex-caregivers can take on any type of project (just like anyone else who wants to contribute). However, given that the years of care may have taken a toll they haven’t noticed, it may be better if they check how comfortable they are with smaller projects before they take on some large commitment to contribute. After years of actual care work, they have already done their share of working for dementia, and need not feel obliged to push themselves in spite of discomfort.

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References and links to explore more

The level of understanding of dementia and care that potential contributors need depends on the type of contribution they want to make. Some basic knowledge is needed by all, to make sure they do not use stigmatizing characterizations of persons with dementia or of caregivers, and do not sound preachy, judgmental, or critical. Also, a basic understanding will ensure they have realistic expectations for any project they participate in.

Basic understanding includes an overview of what dementia is, its effect on persons and their families, treatments (and their limitations) and how caregiving for dementia is not the same as living with an ageing elder. This needs to be good enough to truly appreciate the problems, even if there is no actual contact required.

Contributors who may be spending time with persons with dementia or their family caregivers need a higher level of dementia understanding. Often potential contributors have read books and articles but have no real-life exposure. They may not have lived with someone who has dementia or even spent enough time to see for themselves the impact of cognitive decline. When they encounter the strange and altered behavior of patients or the overwhelm of caregivers, they may feel very uncomfortable or resort to unsuitable advice.

Note, too, that impact on a family of a serious medical condition is affected by the environment, too–the societal attitudes, the support structures, expectations around ageing, myths, stigma, information availability, etc. To get a better understanding of dementia and related care in the Indian context, you can read books, attend courses, meet experts, social workers, support groups, etc. Many book/ website discussions on dementia care are written for readers outside India and assume a lot of available support. They do not take into account the constraints and realities faced by home caregivers in India. To understand the situation of Indian home caregivers, do remember that you will need to adjust the material to take India’s culture and other realities into account. This discussion may help: Applying available dementia/ caregiving material to the Indian context.

I have created some resources that can be useful to understand dementia home care realities. Dementia Care Notes, an English website created specifically for caregivers concerned about dementia home care in India. It is a detailed website with discussions on multiple aspects of dementia and care. The Hindi version is at Dementia Hindi.

If you are interacting with caregivers, it is necessary to understand the dementia home care context. You can read interviews of Indian caregivers at: Voices: Interviews with dementia caregivers, volunteers, and experts. These are long interviews and very informative. Some potential contributors feel impatient reading these; in that case, they should pause to wonder how much more impatient they may feel if face-to-face with caregivers recounting such experiences, and this may affect their decision on the area to contribute.

Various existing dementia organizations can also be contacted to learn from their experience, to locate dementia-related projects to join, find potential collaborators, etc. The national and city-wise resource pages on the Dementia Care Notes website gives some links for these.

To understand the overall situation of dementia and related caregiving in India, please check out the links in the section: Understand dementia and care in the Indian context

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Pages in this section:

Resources: If you want to help caregivers/ spread dementia awareness

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