Informational websites and online support for dementia / caregiving

Resources for dementia and care > Informational websites and online support for dementia / caregiving

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]

When COVID-19 related lockdowns started in several countries, all in-person dementia services in these countries came to a halt. Many organizations have started providing much more support online or through phone helplines etc. As online resources can be accessed by anyone who can has access, families are not restricted to local organizations to learn more, connect with people, get support etc. Learning how to effectively use online resources can greatly increase ability to get suitable support.

Below is a list of select sites and groups, and some discussion on using these.

Note that information on these 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.

Note on impact of the COVID situation on online resources.

As in-person services closed down and may need to remain scaled down as a response to various COVID-19 related constraints and precautions, many organizations and individuals have become much more active in providing online information, forums, and support. Free webinars are being organized on topics that could interest families. Platforms used are diverse – Zoom, Cisco Webex, Google Meetings, Facebook Live, Youtube Live are a few. Most such sessions have a lecture or presentation followed by some Q&A where attendees can post questions. Panel discussions of experts are also there. There are also many videos or live group sessions where the viewers can exercise alongside, getting a sense of participation in a community. Support group meetings are being made available online. Some organizations are also holding 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 (and there is a range being used, all available on mobiles and desktops)). Fortunately, most families have been able to adapt 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, to avoid what is being called “death by webinar”. 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. Be selective about what you choose to attend so that you can fit it into your daily routine and not get overwhelmed, staying with topics of interest. Most such events are recorded and made available later, giving viewers flexibility to benefit from the event even if the timings of the actual event are inconvenient.

Families can learn of such events by asking dementia organizations they were in touch with, or any other they feel may be useful what is available and if they can join. 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 additional online offerings now and you can know about these through their sites/ social media presence.

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Alzheimer’s Disease International

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. India was one of the countries participating in the research. This section on 10/66 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:

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Alzheimer Society UK

Alzheimer Society, UK Opens in new window has a site with medical information on dementia and on Alzheimer’s Disease. In addition of very well explained sections on dementia, it has several pages on various care topics. The site also has downloadable information for various topics as well as 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 language versions, on its pages: The dementia guide in other languages Opens in new window and Publications in other languages Opens in new window.

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Alzheimer’s Association (Alz.org) and ADEAR

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. Want to know what Alzheimer’s Disease is? Or whether you or someone you know may be having it? Want to know what is happening in this field? Or what a caregiver needs to know for early onset? For end-of-life? How should you make your home safe? How can you handle difficult behaviors? Or prevent wandering? This site has information on all such topics, including 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. This site has multiple pages, which provide extensive information, including several free publications on dementia and caregiving. They also have graphics that clearly show the brain damage. These pictures are very useful to understand and tell others that the brain physically gets damaged in dementia diseases like Alzheimer’s.

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HBO’s Alzheimer’s Project

HBO’s Alzheiemer’s project Opens in new window is another useful resource site with videos, reports, and workbooks. Did you know, for example, that 54% of the people (USA statistics) have been touched by Alzheimer’s in some way (self, friend, relative, colleague)? Check the site for the many, very informative and interesting videos and other useful resources.

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Alzheimer’s Australia

The Alzheimer’s Australia site Opens in new window has information on dementia and caregiving. It includes help sheets and practical tips.  The site has information for persons with dementia as well as their caregivers. A downloadable guide is available or 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

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World Health Organization’s iSupport

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 field-testing version of this is available at iSupport for dementiaOpens in new window.

There is also an iSupport manual corresponding to this program, for those who prefer doing it offline. This manual is a PDF file which can be downloaded from WHO’s page on iSupport for DementiaOpens in new window.

Update July 2020: An iSupport Lite version has been released – a simple page of easy tips and practical advice in the form of 6 infographics. See: iSupport Lite Opens in new window.

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Dementia Mentors

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. Note, however, that while the site aims at persons diagnosed with dementia, it is also very useful for family caregivers trying to understand and support persons with dementia. The site includes videos, including videos by persons with dementia, writings from 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. According to the site (Feb 2016): “In fact, even our mentors have been diagnosed with some kind of a dementia related disease. Consequently, they understand the trials and tribulations that you, with dementia are going through.” The site encourages social connections through its Virtual Memory Cafes (“A Memory Café is an social gathering for anyone living with dementia”) and should not be confused with memory clinics or with support groups.

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Additional online information, such as information for specific types of dementia (AD, FTD, LBD, others)

Dementia symptoms can be caused by many diseases, and while a lot of advice and discussion is common across all forms of dementia, it is useful to know more about the soecific type of dementia a person may be having. This 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”, as part of the resources on the page, here: 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. Resources listed here include standard sites like Mayo Clinic, alz.org, Association of Fronto-temporal Degeneration, Lewy Body Association, etc., as well as some useful explanations and papers.

Indian portals for related areas: old age and for mental health

Old Age Solutions Opens in new window is a portal on Technology Initiative for Disabled and Elderly. It is an initiative of the Ministry of Science and Technology, and created by AIIMS, Delhi. It 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 (June 2018 update: The portal was earlier also available in Tamil, Telugu, Bengali and Marathi, but these were discontinued)

The White Swan Foundation Opens in new windowis 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. It also offers information on mental well-being. The portal aims at providing right knowledge to the general public. It 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 currently (February 2016) available in four languages: English Opens in new window, Bengali Opens in new window, Hindi Opens in new window, and . More languages may be added later, as may resource listings.

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Indian sites for dementia and care

In addition to the above, some Indian (or mainly India-based) sites address dementia or caregiving. Most of the coverage on these sites is basic, covering information already available in greater detail in the international sites. Some sites include a few booklets in various Indian languages, too; see Dementia/ Alzheimer’s Information in Indian Languages for more details of resources in various Indian languages.

Additionally, you can see PatientsEngage Opens in new window, a platform that provides information and interviews on multiple medical conditions, is aimed mainly at Singapore and India, and often includes material on dementia and care, such as articles, caregiver stories, interviews, etc.

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Sites covering related topic: palliative care

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. 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.The following resources explain palliative care as applicable for persons with dementia, especially persons in advanced stages: Palliative Care Opens in new window, Dementia: Achieving a good death for people with dementia 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

Information about the Indian Institute of Palliative Care can be found at their website Opens in new window, which also has a list of their centres. Another resource is an FAQ from an Indian resource, Institute of Palliative Medicine Opens in new window. (India based resources on palliative care are at: : Dementia Caregiver Resources across India: Palliative Care resources.)

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Available Online Communities

Some online communities are available where caregivers can share their situations and experiences, support each other, and share tips and ideas.

Facebook groups: These Facebook 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 is an excellent online community on dementia, has a wide membership, and is well moderated. It is very good for shared experiences around the shared challenges and experiences around dementia and care. Note that members span many countries and as mostly tend to be 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 postsis Silver Innings Alzheimer’s India Opens in new window
  • One app is available from Nightingales Medical Trust: DemKonnect. It has some basic information on dementia and care and enables connecting with experts and a community. The app (current version released in March 2020) can be viewed at Playstore Opens in new window,

Some communities are not Facebook-based. Examples:

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 have 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 f 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. But other types of dementias may pose specific challenges that need special support. See section above for information on specific dementias and related support. Some more information on specialized forums for specific dementias:

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Use Technology to Create your Own Communities

Caregivers and volunteers sometimes create their own small support groups. Typical technology used is Whatsapp and Facebook. Some also set up email groups using technology like Yahoo groups or 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.

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Criteria/ cautions for creating/ using online forums

Some things to keep in mind when participating in an existing group or when setting up/ moderating your own group:

  • Try to ensure that one or more informed and responsible experts are active participants and committed to making the group useful. This will reduce the chance of members sharing misleading information. It will also help to get better and more reliable answers to the queries.
  • Make sure 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 not be knowing some of the members. This is particularly important for Facebook and Whatsapp, because on these platforms, fellow-members know your name/ phone number.
  • Do not use an online forum as a source for medical advice. If someone recommends a medicine or alternate therapy etc., 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 remedy.
  • 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.

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Caregiver Blogs

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 made some entries around person dementia experiences, and some have written extensively about dementia. The data we have on this can be seen on our page: Voices: Caregiving in the news. The page has links to useful individual entries on blogs, as well as links to more extensive dementia blogs.

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Voices of persons with dementia.

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.

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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.

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