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.[read disclaimer]
Below is a list of select sites. Many have newsletters you can subscribe to, so that you can get regular updates from the sites.
- Alzheimer’s Disease International.
- Alzheimer’s Association (Alz.org) and ADEAR.
- HBO’s Alzheimer’s Project.
- Alzheimer’s Australia.
- Other sites on various types of dementia/ Alzheimer’s Disease/ related caregiving.
- Portal for old age solutions.
- Other sites covering related topics such as palliative care and ethics.
- Blogs and Communities.
- Dementia Information in Bengali, Gujarati, Hindi, Malayalam, Marathi, Punjabi, Tamil, Telugu, Urdu.
- Voices of dementia patients.
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. To see how to apply the advice in the context of India, see the following articles: Applying available dementia/ caregiving material to the Indian context and The Cultural Context of India and its Impact on Dementia Care.
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 the World Alzheimer’s Report every year. This is downloadable from their site in English and some other languages.
The ADI site also includes a section for the 10/66 Dementia Research Group. To quote,
The 10/66 Dementia Research Group are researchers who are redressing the fact that less than 10% of all population based research into dementia has been directed towards the 66% of people with dementia who live in developing countries, hence “10/66″.
The group encourages active collaboration between research groups in different developing countries and between developed and developing countries.
The 10/66 Dementia Research Group section of this site has information about the group, their work, and the prevalence of dementia worldwide.
India is one of the countries participating in this research. The 10/66 section includes qualitative and quantitative information on India.
The site also includes other material for patients and carers. For example, the site contains 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. Ideas are collected as “books” for ease of navigation. See the I Can I Will project page (you can read more about it at the About page of I Can I Will). You can submit your idea here.
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. Unfortunately some links on this page are not working (checked December 2014), but you can check in case they have been updated. Meanwhile, Dementia Care Notes has collected and presented information on possible dementia/ care resources in multiple Indian languages here: Dementia Information in Bengali, Gujarati, Hindi, Malayalam, Marathi, Punjabi, Tamil, Telugu, Urdu)
- ADI maintains a list of its member countries (national Alzheimer’s Associations) and their websites. Various national dementia bodies may be reached at: Alzheimer associations. Some countries are culturally similar to India and have common languages and customs. Their sites may have information and stories relevant to persons in India. Examples are: Bangladesh, Nepal, Pakistan, and Sri Lanka. Their respective national websites are:
Alzheimer’s Association (USA)‘s site has 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 these, including downloadable files written for a range of possible readers (children, caregivers, medical professionals, patients).
Alz.org also has an online caregiver community.
Alzheimer’s Disease Education and Referral Center is part of the National Institute on Aging (US National Institutes of Health) site. It provides extensive information, including several free publications on dementia and caregiving. They 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.
For example, this General Information page at ADEAR explains Alzheimer’s Disease. The lower part of the page explains dementia and also mild cognitive disorder. Similarly, the Alzheimer’s Association page that explains Alzheimer’s also explains that Alzheimer’s is the most common form of dementia . It links to a page on related dementias.
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.
The Alzheimer’s Australia site has information on dementia and caregiving. It includes help sheets and practical tips. The site has information for both patients and caregivers.
As part of its “Information in other languages”, Alzheimer’s Australia even has information on dementia in Hindi! There are leaflets on topics such as understanding dementia, diagnosis, early planning, communication, changed behavior, and so on. Read/ download here
One excellent resource on Alzheimer’s Disease is Mayo Clinic’s section on Alzheimer’s Disease. This includes explanations of Alzheimer’s Disease (symptoms, causes, tests and diagnosis, treatment, coping, prevention, etcetera). It has articles on aspects like early onset and risk factors. There are slideshows, expert answers, expert blogs, resources, and updates. Mayo Clinic has a newsletter you can subscribe to. A downloadable guide is available. Also, check: the Alzheimer’s Disease section on Mayo Clinic.
To know more about Lewy Body Dementia, check: Lewy Body Society
Some caregivers find it inspiring to see the photo-exhibitions of Cathy Greenblat. Her photography captures moments that show heart-touching moments and expressions from the lives of persons with dementia. They illustrate how, if given suitable care, patients can remain connected to others and to their own past lives. Cathy Greenblat’s site is here. View more on her project, “Love, Loss and Laughter: Seeing Alzheimer’s Differently” at Seeing Alzheimer’s Differently and Love, Loss, and Laughter.
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.
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 patients 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).
The Nuffield Council on Bioethics is an independent body that examines and reports on ethical issues in biology and medicine. Its reports are intended for advising policy makers and stimulating debate in bioethics. The council has published a set of reports on dementia. Check: the Nuffield page that offers highlights and download options.
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.)
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. Alz.org is also linked to the blog of Lisa Genova: the blog is here.
Alzheimer’s Reading Room is one of the major blogs for dementia and caregiving. It is managed by Bob DeMarco, who was a full-time caregiver for his mother Dotty who had dementia. He shares his experiences and insights about caregiving. He also provides information on various aspects of Alzheimer’s, and updates from research and news. He includes entries by others on such topics, According to Bob, “The website focuses on those suffering from Alzheimer’s disease and dementia, Alzheimer’s care givers, and the art of Alzheimer’s caregiving.”
Alzheimer’s Reading Room has several thousand monthly readers. It also has an active Facebook presence at this link. Bob deMarco has suggested a list of books for dementia/ caregiving as an Amazon “listmania” : Alzheimer’s, Dementia, and CareGiver Reading List.
Another community that has information and FAQs is Alzheimer’s Discussion Forum.
Swapna Kishore is a caregiver-blogger in India who has been blogging about her caregiving experiences since July 2008. Her blog has over 200 entries on her experience of caregiving for her mother with dementia. It also includes some of her experiences with other caregivers of dementia patients, and as a volunteer in India. Check it here: http://swapnawrites.wordpress.com
Hendi Lingiah, a psychologist who has been actively supporting caregivers, shares news updates on dementia and caregiving activities in India through http://alzheimerdiseaseinindia.blogspot.com. Also, check Hendi’s Facebook group: Alzheimer’s Disease in India.
Another useful blog is Lori LaBey’s Alzheimer’s Speaks.
For those on Facebook, a closed forum of patients, caregivers and advocates is available (membership by approval only) at: Memory People. This is an excellent online community on dementia.
- Bengali: Booklet on dementia from Alzheimer's Society (UK). Bengali information booklet from Scotland: Dementia booklet in Bengali (PDF file). Also, call/ email ARDSI Calcutta Chapter for availability of printed booklets on dementia/ care in Bengali. A new and comprehensive resource for dementia/ care information in Bengali is the website of Alzheimer's Association of Bangladesh. This website has several pages in Bengali that explain dementia as well as related caregiving aspects. Also, Old Age Solutions, a portal with information and resources for the elderly (from the Govt. of India and AIIMS), has a Bengali version ; this includes a webpage on cognitive impairment and dementia.
- Gujarati - Booklet on dementia from Alzheimer's Society (UK).
- Hindi - A full-fledged site with dementia and caregiving information in Hindi is available at Dementia Hindi. This site has over 40 detailed pages explaining dementia and how families can handle the caregiving. The site also includes links to Hindi material available from other websites across the world and to available Hindi videos and downloads (e.g.: for our Hindi presentations, videos, and documents, for other Hindi videos, and for various other Hindi resources from across the Internet). Queries to this site can be sent in Hindi or English and will be answered in the same language. Hindi videos on dementia/ care are available at: Youtube channel of Dementia Care Notes. There is also a Hindi blog on dementia and caregiving .
- Malayalam - A dementia caregiver manual in Malayalam, first edition, is available courtesy Dr. Shaji : Download the Malayalam manual (PDF file). (caution: this is only a general guideline and does not substitute professional advice which should be obtained from the doctor who examines the patient with dementia)
- Marathi: Old Age Solutions, a portal with information and resources for the elderly (from the Govt. of India and AIIMS), has a Marathi version ; this includes a webpage on cognitive impairment and dementia.
- Punjabi - Booklet on dementia from Alzheimer's Society (UK) . Punjabi information booklet from Scotland: Dementia booklet in Punjabi (PDF file). A video explaining dementia (Atiq Hassan, UK) at: Punjabi - Introduction to dementia from Atiq Hassan, Dementia Adviser.
- Tamil - An explanation of dementia from Vision Age, Chennai. Also available in Tamil: Booklet on dementia from Alzheimer's Society (UK). Several booklets from Alzheimer's Australia in Tamil (topics include what is dementia, diagnosing, early planning, communication, taking a break, changed behaviours). Some documents on dementia and its assessment and possible activities etc. are available (may need special font installed): from Lanka Alzheimer's Foundation. You can also call/ email Vision Age for availability of printed booklets on dementia/ care in Tamil. A book written by DR.V.S.Natarajan (136 pages) is available: contact Dr.V.S.Natarajan, Adiparasakthi Clinic, A book written by DR.V.S.Natarajan (136 pages) is available: contact Dr.V.S.Natarajan, Adiparasakthi Clinic, Chennai, Ph: 044 -26412030, 044 – 26267282, email: firstname.lastname@example.org . For resources and information useful to the elderly, Old Age Solutions, a portal from the Govt. of India and AIIMS), has a Tamil version.
- Telugu - Documents from ARDSI Hyderabad Deccan chapter: Help for caregivers (PDF file), What is dementia (PDF file), Information on dementia and dementia events (PDF file). Also, call/ email ARDSI Hyderabad Deccan Chapter for availability of printed booklets on dementia/ care in Telugu. Another resource is Old Age Solutions, a portal with information and resources for the elderly (from the Govt. of India and AIIMS), which has a Telugu version ; this includes a webpage on cognitive impairment and dementia.
- Urdu - "What is dementia" (PDF file)(from ARDSI Hyderabad Deccan chapter), Summary page on dementia and downloadable Urdu booklets ("What is Alzheimer's" and "Booklet for caregivers") from Alzheimer's Pakistan, booklet on dementia from Alzheimer's Society (UK). Urdu information booklet from Scotland: Urdu document on Dementia from Scotland (PDF file). Also, call/ email ARDSI Hyderabad Deccan Chapter for availability of printed booklets on dementia/ care in Urdu. Also, a video explaining dementia: Urdu - Introduction to dementia from Atiq Hassan, Dementia Adviser.
Also see our video resources page for links to videos in Indian languages.
Some dementia patients have written books and spoken up about their experiences and feelings. They have described their problems, confusion, frustration, and reduction in abilities.
- Richard Taylor, PhD, an early onset patient, describes his experiences on his site and has written a book called: Alzheimer’s From the Inside Out. He also speaks about his situation and publishes newsletters.
- Norm McNamara’s blog describes his life and emotions. Norm has written books and also published poems.
- Kris, an early onset AD patient and an Alzheimer’s advocate, had documented her story on Living with Dementia and also shares thoughts and memories on her blog, Creating Memories
- The website, Living with Alzheimer’s,chronicles the life of Rick Phelps thru his daily videos that he is making to bring more light to the fight against Alzheimer’s.
- Susan Parish, and early onset AD patient, describes her journey here: Susan Parish: My Journey with Alzheimer’s
- Ken Clasper, a person with Lewy Body Dementia, blogs about his experiences and feelings here, and also gives his suggestions for how others can interact with him: : Living well with Lewy Body Dementia.
- Christine Byrden, patient and advocate, has written books on her experience with dementia, and been an active advocate. Her site is here: Dementia From an Insider’s Perspective, Christine Bryden
- The blog, Living with Alzheimer’s, is Joe Potocny’s chronicle of his journey with Alzheimer’s. The blog also includes a link to his book.
- Some more stories: Ted’s Story, Sandy’s Story, and Pete’s story.
For resources in India, check this page: Dementia Caregiver Resources across India.
For city-specific resources, check this page: City-wise/ region-wise resources.
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.
[This page was last updated in December, 2014]