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. This page focuses on international resources that may be useful for those in India. [read disclaimer.]
Below is a list of select sites and groups, and some discussion on using these.
- 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).
- Palliative care.
- Available Online Communities (International).
- Use Technology to Create your Own Communities.
- Criteria/ cautions for creating/ using online forums.
- Caregiver Blogs (International).
- Voices of persons with dementia (International).
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.
Alzheimer’s Disease International Opens in new window (ADI) is the umbrella organisation of Alzheimer associations around the world and works for raising global awareness. It publishes research findings, reports, and newsletters, and an annual World Alzheimer’s Report, some of which feature India also. For those interested in such advanced reading, see Dementia reports, studies, policy news from India and outside.
Families coping with dementia in India may find the following sections on their site useful:
- Page on ADI site with links to resources in other languages Opens in new window. These include some Indian languages. 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 for carers (including some Indian languages) – see the publications page Opens in new window.
- ADI maintains a list of member countries (their national Alzheimer’s Associations) and their websites at: Alzheimer associations Opens in new window. Some countries, like Bangladesh, Nepal, Pakistan, and Sri Lanka have many cultural similarities, common languages and customs. and their sites may have information 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 for this is at WHO’s page on iSupport for DementiaOpens in new window. An iSupport Lite version – a simple page of easy tips and practical advice in the form of 6 infographics – was also released. While the WHO site does not seem to have these in its repository now, you can see the archived version 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, to help those who are newly diagnosed and in the early stages of dementia. The site may also be useful for family caregivers to understand and support persons with dementia. The site includes videos by persons with dementia. Mentoring 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.
The World Health Organization’s factsheet on palliative care can be seen here Opens in new window.
The following international 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.
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 no 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 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.
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 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.