Online information and support is available for understanding dementia and sharing stories/ getting support, but you need to select reliable and useful sites and groups. Most dementia-related authoritative medical sites focus on Alzheimer’s, the most common cause of dementia. They also provide information on other causes of dementia. Many countries have Alzheimer’s Disease Associations which have informative sites with resources on dementia (and on Alzheimer’s Disease) and caregiver resources. Some host online caregiver communities. There are also other prominent, authoritative sites with resources. Support groups and caregiver communities have also been set up by volunteers and even by caregivers themselves. [read disclaimer.]
Below is a list of select sites and groups, and some discussion on using these.
- Online resource availability has increased after the pandemic.
- Alzheimer’s Disease International.
- Alzheimer Society UK.
- Alzheimer’s Association (Alz.org) and ADEAR.
- Alzheimer’s Australia.
- World Health Organization’s iSupport .
- Dementia Mentors.
- Additional online information, such as information for specific types of dementia (AD, FTD, LBD, others).
- Indian portals for related areas: old age and for mental health.
- Indian sites for dementia and care.
- Sites covering related topic: palliative care.
- Available Online Communities.
- Use Technology to Create your Own Communities.
- Criteria/ cautions for creating/ using online forums.
- Caregiver Blogs.
- Voices of persons with dementia.
Note that information on various sites is designed for the country the site belongs to. Some information may not apply to persons living in India. Examples are legal suggestions, health insurance, and ways to handle medical care. For Indian sites and resources, see the page: Dementia Caregiver Resources across India.
Most available material is written in countries where dementia awareness and support is much higher than in India. The material assumes a different cultural context and level of support systems. You will need to see how to apply it in your context.
When COVID-19 related lockdowns started in several countries, all their in-person dementia services came to a halt. Many organizations then started providing much more support online or through phone helplines etc. As online resources can be accessed by anyone with access, families are not restricted to local organizations to learn more, connect with people, get support, and so on.
It is common now to have online webinars and panel discussions to provide information or enable families to get answers from experts, and also common to have online support group meetings. Many webinars and the videos of live streamed events remain available online even after the event is over. There are also videos and live group sessions where the viewers can exercise alongside, getting a sense of participation in a community. Some organizations also hold closed sessions for families they were earlier helping through in-person initiatives, and have helpline support and active follow-up for families.
To benefit from these new resources, families need to get familiar with the technical platforms being used. Fortunately, most families have adapted to online modes more easily than they thought they would 🙂
With free resources available all around, one challenge is selecting useful resources and for useful interaction. Best to stick to reputed organizations that have expertise in what you need and have a profile that matches what you think can help you.
Note that many organizations listed below (and also on the pages Dementia Caregiver Resources across India and various individual city pages reachable through City-wise/ region-wise resources) are likely to have some online offerings now and you can know about these through their sites/ social media presence.
Alzheimer’s Disease International Opens in new window (ADI) is the umbrella organisation of Alzheimer associations around the world. According to them, “We aim to help establish and strengthen Alzheimer associations throughout the world, and to raise global awareness about Alzheimer’s disease and all other causes of dementia.” The ADI site offers information about dementia from multiple countries. It has links to various national sites. ADI publishes newsletters regularly, creates useful documents, and also publishes the World Alzheimer’s Report every year. All these can be viewed/ downloaded from their site (English, and sometimes in other languages also).
The ADI site also includes a section for the 10/66 Dementia Research Group Opens in new window that focused on dementia in developing countries. As India was one of the countries participating in the research, this section includes qualitative and quantitative information on India.
The site also includes other material for people with dementia and their carers. For example, there are caregiver stories and resources Opens in new window.
For persons in India, the following may be particularly useful:
- Page on ADI site with links to resources in other languages Opens in new window. These include some Indian languages. Some links were not working when last checked, but they may have been corrected; check out the page. Also, note that this site, Dementia Care Notes, has collated information on online dementia/ care resources in multiple Indian languages here: Dementia/ Alzheimer’s Information in Indian Languages.
- ADI has some publications in other languages. Scroll the publications page Opens in new window. Some publications, such as documents for carers, include some Indian languages.
- ADI maintains a list of member countries (their national Alzheimer’s Associations) and their websites. Various national dementia bodies may be reached at: Alzheimer associations Opens in new window. Some countries, like Bangladesh, Nepal, Pakistan, and Sri Lanka have many cultural similarities, common languages and customs. Their sites may have information and stories relevant to persons in India.
Alzheimer Society, UK Opens in new window has a site with information on dementia and on Alzheimer’s Disease. It also has several pages on various care topics, and two comprehensive documents: a document for those diagnosed with dementia The Dementia Guide Opens in new window and a document for carers: Caring for a person with dementia: A practical guideOpens in new window. The site also has documents useful for caregivers in other languages, including Indian languages, see: The dementia guide in other languages Opens in new window and Publications in other languages Opens in new window.
Alzheimer’s Association (USA) Opens in new window has a site with medical information on dementia, particularly on Alzheimer’s Disease. Information on medical research and findings is available here. The site offers booklets for specific aspects of caregiving and downloadable files written for a range of possible readers (children, caregivers, medical professionals, persons with dementia).
Alzheimer’s Disease Education and Referral Center Opens in new window is part of the National Institute on Aging (US National Institutes of Health) site. It has multiple pages that provide extensive information, and several free publications on dementia and caregiving.
The Alzheimer’s Australia site Opens in new window has information on dementia and caregiving, including help sheets and practical tips. It has information for persons with dementia as well as their caregivers. A downloadable guide is available for people living with dementia, their families and carers: The Dementia Guide Opens in new window.
Alzheimer’s Australia also has information on dementia in several languages, including many Indian languages. These include leaflets on topics such as understanding dementia, diagnosis, early planning, communication, changed behavior, and so on: Information in other languages Opens in new window.
The World Health Organization (WHO) has a skills and training program for carers of people with dementia called iSupport. The modules in this are (i) introduction to dementia; (ii) being a caregiver; (iii) caring for me; (iv) providing everyday care; and (v) dealing with behavior changes. and it includes exercises. The manual corresponding to this program can be downloaded from WHO’s page on iSupport for DementiaOpens in new window.
An iSupport Lite version was also released – a simple page of easy tips and practical advice in the form of 6 infographics. The WHO site does not seem to have them in its repository now, but you can see the archived version of the page here Opens in new window.
The website and services of Dementia Mentors Opens in new window are designed to help persons with dementia stay active and connected. The site explains their goal as “To help those who are newly diagnosed and in the early stages of dementia.” and is intended for an international audience. While the site aims at persons diagnosed with dementia, it can also be useful for family caregivers to understand and support persons with dementia. The site includes videos, including videos by persons with dementia and a resource renter (Websites for those living with dementia).
The mentoring at this site Opens in new window (for persons diagnosed with dementia) is provided by persons who have first-hand experience of dementia. Their Facebook page is here Opens in new window.
Additional online information, such as information for specific types of dementia (AD, FTD, LBD, others).
Dementia symptoms can be caused by many diseases. While a lot of advice and discussion is common across all forms of dementia, knowing more about the specific type of dementia a person has helps understand the symptoms, treatments, and progression of that type of dementia better. Examples of various types of dementia are Alzheimer’s Disease, Fronto-temporal dementia, Lewy Body dementia, vascular dementia, Parkinsonian dementia, etc.
A collection of useful online resources for specific dementia types is available on our page on “Diseases that Cause Dementia”, in this section: Links to understand more about various diseases that cause dementia symptoms (reversible and irreversible). Here, links have been provided to specific pages on various types of dementia, to understand the disease and also for organizations related to specific dementias and care related information for specific dementia types.
Old Age Solutions Opens in new window is a portal created as part of the Technology Initiative for Disabled and Elderly, an initiative of the Department of Science and Technology, This portal provides information related to health, nutritional requirements, entertainment, recreation, environment, networking, and assistive devices for the ageing. The portal is available in English Opens in new window and Hindi Opens in new window .
The White Swan Foundation Opens in new window is a not-for-profit organization, whose partners include the reputed specialty hospital, NIMHANS Bangalore. White Swan has a portal on mental health and well-being intended for persons suffering from a mental health problem or caring for someone with a mental illness. The portal has two broad parts. Understanding Mental Health provides information on various aspects of mental health and well-being, include information on mental health, psychosocial challenges, opportunities, trends, views, etc. Psychiatric Disorders discusses various disorders identified by the science of psychiatry, and includes dementia and Alzheimer’s Disease as part of Life-stage disorders (geriatric disorders). The portal includes articles, interviews, real-life case studies and also some videos. In addition to available menus and lists, there is a search feature to locate information of interest. It invites sharing of stories from the public.
The White Swan Foundation portal is available in multiple Indian languages: English Opens in new window, Bengali Opens in new window, Hindi Opens in new window, Malayalam Opens in new window, Tamil Opens in new window and Kannada Opens in new window. More languages may be added.
Some Indian (or mainly India-based) sites also address dementia or caregiving. Most of the coverage on many sites is basic, covering what is already available in greater detail on the international sites. But some sites include some booklets in various Indian languages; see Dementia/ Alzheimer’s Information in Indian Languages for more details of resources in various Indian languages.
Additionally, check PatientsEngage Opens in new window. This platform provides information and interviews on multiple medical conditions, and has a lot of material relevant for Indian families,, and includes material on dementia and care, such as articles, caregiver stories, interviews, etc. It is available in English and Hindi.
The World Health Organization defines palliative care Opens in new window as “Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Most palliative care resources focus on cancer/ HIV. But palliative care can be very useful in dementia care also. Dementia caregivers need to understand how palliative concepts can be applied to dementia care in advanced stages and end-of-life. Persons with dementia are unable to communicate. They often get confused. They become unhappy when they get treatments which they do not understand, such as tube feeding. Hospitalization can be extremely disorienting to them. That is, dementia impacts how well the persons understand and respond to what caregivers and doctors are trying to do. Persons with dementia patients do not always benefit from aggressive medical treatment and repeated hospital visits, and the trade-offs are difficult for lay persons to evaluate. Understanding the concepts of palliative care empowers families to handle care better.
The following resources explain palliative care as applicable for persons with dementia, especially persons in advanced stages: Palliative Care Opens in new window, Alzheimer’s Society’s view on end of life care Opens in new window, White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care (EAPC) Opens in new window.
Palliative care is relatively new in India, and most of the focus has been in cancer/ HIV, and most practitioners may not be experienced in dementia palliation. Some organizations that work in palliative care and also maintain resources/ directories for various states of India are: Indian Institute of Palliative Care Opens in new window, the Thrissur based organizations, Pain & Palliative Care Society, Thrissur Opens in new window (district-wise directories also available at site), and Trivandrum-based Pallium India Opens in new window (or view the Pallium directory Opens in new window). The following may also be useful: Institute of Palliative Medicine Opens in new window. and an FAQ from an Indian resource, Institute of Palliative Medicine Opens in new window.
Two useful online directories of palliative care units in India can be viewed at: Directory of Palliative Care Services (Asia Pacific) Opens in new window and Global Directory of Palliative Care Services, Hospices and Organizations Opens in new window (search for Asia, then select India).
Many major hospitals and hospices may also have palliative care specialists to help patients suffering from a range of diseases. As mentioned above, when looking for a palliative care specialist, please look for persons with training/ experience of helping persons with dementia. In addition to the directories available at these sites above, our City-wise/ region-wise resources may include specific links for palliative care in the city.
Some online communities are available where caregivers can share their situations and experiences, support each other, and share tips and ideas.
Facebook groups: These groups may be public or closed or secret, which decides who can see your posts. However, since all interactions are done using the Facebook account, there is non anonymity. Others in the group know your name and can see your Facebook profile.
- One Facebook closed forum of persons with dementia, caregivers and advocates is at: Memory People Opens in new window (membership by approval only). This excellent online community on dementia has a wide membership, and is well moderated. It is very good for shared experiences related to dementia and care. Members span many countries and as most are from developed countries, members from India may need to take into account our different situation in India, especially for areas like available services and facilities, etc.
- Some India-based Facebook groups are also available. One public groups, where anyone on Facebook can read the posts is Silver Innings Alzheimer’s India Opens in new window.
- One app is available from Nightingales Medical Trust: DemLink. It has some information on dementia and care and enables connecting with experts: Download links can be seen here Opens in new window.
Some communities are not Facebook-based. Examples:
- Alzheimer’s Society, UK has an online community that anyone can read, but only members can post in. This has over 50,000 members and several moderators, and participation is active. Posts are well arranged in easy-to-understand categories and the site includes help pages to guide users on how to join and participate. Membership is free. See Talking Point Opens in new window.
- Alzheimer’s Association, USA has an online community that anyone can read, but only members can post in. This has a large membership and active participation and moderation. You can also join for free and participate in it. See AlzConnected Opens in new window.
- Another community available is Alzheimer’s Discussion Forum Opens in new window.
There has been an increase in caregiver support using WhatsApp groups. These often start out for supporting families in touch with an organization, but in COVID times, many extended to accept a wider range of caregivers. These groups vary widely in terms of level of activity and quality of moderation. You can ask existing support organization if they offer such support.
Most dementia forums cater to all forms of dementia, and discussions are often general (for all dementias) with more chances of discussing Alzheimer’s Disease type of dementia. As other types of dementias may pose specific challenges, here is Some information on specialized forums for specific dementias:
- For Fronto-temporal dementia (FTD): some very useful forums are listed at (for persons with FTD) Support (Life with FTD) Opens in new window and (for caregivers) Support for Caregivers (FTD site) Opens in new window. For example, there is a Facebook group (closed group) at The Association for Frontotemporal Degeneration (AFTD) Opens in new window and a non-FB group at FTD Support Forum Opens in new window.
- For Lewy Body Dementia (LBD), look at the resources and forum type links at the LBDA site Opens in new window to see if something has been made available online.
Caregivers and volunteers sometimes create their own small support groups. Typical technology used is WhatsApp and Facebook. Some also set up email groups using features like Google groups. A typical situation is when an organization conducts a support group, and then the volunteer creates a WhatsApp group so that the attendees can continue to stay in touch.
Such small, locally created groups differ a lot in the level of activity and the quality and usefulness of the information shared. Interactions on such groups include sharing information, questions and suggestions, details of services someone has found useful, etc., and also social contact for sharing personal stories and for meeting informally. Some such groups remain very active and useful, some never take off.
If you want to be part of such a group, you can ask a volunteer you know to set up and coordinate such a group. Or you can get together with other caregivers and create your own community to share information and stay in touch.
Here are some things to keep in mind when participating in an existing group or when setting up/ moderating your own group.
- Ensure that one or more informed and responsible experts are active participants and committed to making the group useful. This reduces the chance of members sharing misleading information. It also helps to get better and more reliable answers to the queries.
- Ensure you are clear about the group’s privacy settings and rules. Be careful about how the group members respect the privacy of fellow-members. Be careful of what you share, knowing that you may know some of the members. This is particularly important for platforms like Facebook and Whatsapp where fellow-members know your name/ phone number. Anyone can forward a message or share a screenshot of what you posted.
- Do not use an online forum for medical advice. If someone recommends a medicine or alternate therapy, don’t assume the information is correct. Evaluate it critically and check with your doctor. If you are moderating your own local group, discourage members from insisting that a specific medicine or alternate therapy is a sure-fire treatment.
- In some forums, users post many irrelevant messages. As a result, members may not notice important posts because they have scrolled down screens full of jokes and stories. This is often a problem in Whatsapp groups. See if this impacts the usefulness of the group you have joined/ set up, and how it affects your way of participating.
There are many very good international blogs, and coverage of dementia through blogs as well as other media is very high. Unfortunately, blogs may come and go, making it difficult to suggest useful blogs.
The Alzheimer’s Association USA has a blog at blog.alz.org Opens in new window.
Some Indian bloggers have blogged about their personal dementia and care experiences. The data we have on this can be seen on Voices: Caregiving in the news which has links to useful individual blog entries as well as links to more extensive dementia blogs.
Some persons diagnosed with dementia have written books and spoken about their experiences and feelings. They have described their problems, confusion, frustration, and reduction in abilities. They also talk about things they do and enjoy, and how they can be empowered and included so that they can live well with dementia. A page with a selection of such voices can be seen at Voices: Persons with dementia share experiences. The books page also includes books by persons with dementia.
For resources in India, check this page: Dementia Caregiver Resources across India.
For city-specific resources, check this page: City-wise/ region-wise resources.
The full list of dementia/ care resources in various Indian languages (currently Assamese, Bengali, Gujarati, Hindi, Kannada, Konkani, Malayalam, Marathi, Punjabi, Tamil, Telugu, and Urdu) is at Dementia/ Alzheimer’s Resources in Indian Languages.
Disclaimer: The resources/ links provided here are intended for information and convenience, and are not in any way intended to be an endorsement for the resource. Also, facilities offered keep changing, so please contact the organizations to get up-to-date information.