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.
- Alzheimer’s Disease International.
- Alzheimer’s Association (Alz.org) and ADEAR.
- HBO’s Alzheimer’s Project.
- Alzheimer’s Australia.
- 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 these sites is meant 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
Alzheimer’s Disease International (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 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 .
One initiative of ADI is the I Can! I Will! project. This collects ideas on dementia awareness and living with dementia from multiple profiles of persons. Data is taken from people with dementia, care partners, professional carers, medical professionals, Alzheimer’s society/association members, and others. Persons from across the world are encouraged to contribute ideas, stories, best practices, resources, etc. See the I Can I Will project page (note: the project is currently on hold)
For persons in India, the following may be particularly useful:
- Page on ADI site with links to resources in other languages . 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 collected and presented information on possible dementia/ care resources in multiple Indian languages here: Dementia/ Alzheimer’s Information in 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 . 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. Their respective national websites are:
Alzheimer’s Association (Alz.org) and ADEAR
Alzheimer’s Association (USA) 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 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.
HBO’s Alzheimer’s Project
HBO’s Alzheiemer’s project 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)? The DVDs produced by HBO are available from HBO and also from Amazon. A link to these videos is also available on the books and DVDs page.
Alzheimer’s Australia
The Alzheimer’s Australia site 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.Alzheimer’s Australia even 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
Dementia Mentors
The website and services of Dementia Mentors 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 (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.
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 th 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 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 , Hindi , Tamil <, Bengali , Marathi , and Telugu .
The White Swan Foundation 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. 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 , Bengali , Hindi , and Kannada . More languages may be added later, as may resource listings.
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 , 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.
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: Dementia Friendly Environments: Palliative Care <, Dementia: Achieving a good death for people with dementia , White paper on palliative care in dementia – recommendations from the EAPC , Palliative care: Good practice for quality dementia care (PDF file) .
Information about the Indian Institute of Palliative Care can be found at their website , which also has a list of their centres. Another resource is an FAQ from an Indian resource, Institute of Palliative Medicine . (India based resources on palliative care are at: : Dementia Caregiver Resources across India: Palliative Care resources.)
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 (membership by approval only). This is an excellent online community on dementia, and has a wide membership. Note that members span many countries and mostly tend to be from developed countries, so their perspective and experiences many need to be adapted when viewed from India.
- Some India-based facebook groups are listed below. These are all public groups; anyone on Facebook can read the posts made here:
Some communities are not Facebook-based. Examples:
- http://groups.yahoo.com/group/sss-global is a group for senior citizens in India, moderated by Dr. P Vyasamoorthy, who also blogs at http://vyasa-kaaranam-ketkadey.blogspot.com/
- http://groups.google.com/group/ardsi-hyd-public/about is a members-only group of ARDSI Hyderabad (anyone can apply), where they discuss the activities of ARDSI Hyderabad as well as share information about dementia and caregiving
- One upcoming one is at PatientsEngage, described as “a patient/caregiver focused healthcare platform for supporting the management of chronic diseases.” It has many forums; you can enroll to participate in the forum you want . It includes many members from India and Singapore. Of possible interest are: Caregiver Community and Alzheimer’s and Dementia . Note that while you can enroll using any pseudonym as your display name, the posts can be seen by anyone on the Internet. However, only members can post.
- Alz.org has an online community that anyone can read. You can also join for free and participate in it. Check out the alz.org online community .
- Another community available is Alzheimer’s Discussion Forum .
Most 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:
- For Fronto-temporal dementia (FTD): some very useful forums are listed at (for persons with FTD) Support (Life with FTD) and (for caregivers) Support for Caregivers (FTD site) . For example, there is a Facebook group (closed group) at The Association for Frontotemporal Degeneration (AFTD) and a non-FB group at FTD Support Forum .
- For Lewy Body Dementia (LBD), some very useful forums are listed at Find Support (LBDA site) and LBDA’s Virtual Communities . These include a bulletin board at LBDA forums and non-FB groups for persons with LBD and their families at Other LBD Groups Online .
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.
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.
Caregiver Blogs
There are many very good international blogs, and coverage of dementia through blogs as well as other media is very high (compared to India). It is difficult to choose, but here are two useful, top blogs to start with.
- Alzheimer’s Reading Room is a top-ranking Alzheimer blog managed by Bob DeMarco, who was a full-time caregiver for his mother Dotty who had dementia. He shares his insights about caregiving, and provides information on various aspects of dementia, and updates from research and news. The blog also has contributions from guest bloggers. Alzheimer’s Reading Room has an active Facebook presence .
- The Alzheimer’s Association USA has a blog, too, at blog.alz.org .
There are not many Indian blogs devoted to dementia as such, but some bloggers have made a few entries related to dementia on blogs that cover a variety of other topics. Check Voices: From Indian blogs and sites for such entries, or see other pages in the section, Caregiver Interviews and Voices.
Some blogs by Indians that have multiple entries on dementia :
- India-based Swapna Kishore has blogged about her personal caregiving experiences and her work as a volunteer. Her blog, which has over 250 entries, is at swapnawrites.wordpress.com
- Ekta Hattangady, who was a caregiver in her teens, is now active as a dementia volunteer, and has several blog entries around dementia and care on her blog at fromoutsidethemall.wordpress.com.
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.
One very valuable website for a collection of videos by persons with dementia, their blogs, books, and writings, is (described earlier on this page): Dementia Mentors .
Stories by persons with dementia are also available on various Alzheimer sites, such as stories on alz.org: Living with Dementia , Ted’s Story, Sandy’s Story , and Pete’s story . News articles with personal stories are also available, and may be especially useful for FTD, such as When Illness Makes a Spouse a Stranger a detailed story of a person with FTD, and Inside The Mind Of Frontotemporal Degeneration: A Patient’s Story , which describes the experience of Howard Glick.
Some more blogs are:
- Kris, a person with early onset AD, shares thoughts and memories on her blog, Creating Memories
- Susan Parish, a person with early onset AD: Susan Parish: My Journey with Alzheimer’s
- Christine Byrden, a person with dementia, and an advocate, and author: Dementia From an Insider’s Perspective, Christine Bryden
- Joe (Joseph) Potocny’s chronicle of his journey with Alzheimer’s (includes link to his book): Living with Alzheimer’s .
For resources in India, check this page: Dementia Caregiver Resources across India.
For city-specific resources, check this page: City-wise/ region-wise resources.
For dementia and care related information in Assamese, Bengali, Gujarati, Hindi, Kannada, Konkani, Malayalam, Marathi, Punjabi, Tamil, Telugu, Urdu, check the links on this page: Dementia/ Alzheimer’s Information in Indian Languages. Also see our video resources page for links to videos 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.
Page/ post last updated on: May 4, 2017
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