Most dementia-related authoritative medical sites available to laypersons focus on Alzheimer’s, the most common cause of dementia, though 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. Note that many have newsletters you can subscribe to, so that you 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
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, and has links to various national sites. The World Alzheimer’s report is downloadable from this site in English and other languages, including Hindi.
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 more information about the group, their work, and the prevalence of dementia worldwide.
As India is one of the countries participating in this research, the information in this section includes information on India, both qualitative and quantitative.
There is also very useful material available for both patients and carers. The site contains caregiver stories and resources.
A new and very innovative initiative of ADI is the I Can! I Will! project that collects ideas on dementia awareness and living with dementia 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 their ideas, stories, best practices, resources, etc., in this open sharing environment that aims to empower persons with dementia, carers and others, and to raise awareness of dementia and care. Ideas are collected as “books” for ease of navigation, and include contributors from a variety of backgrounds. The project is here (you can read more about it here). You can consider submitting your own idea here.
For persons in India, the following may be particularly useful:
- Page on ADI site with links to resources in other languages (including 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 on this page; click here: Dementia Information in Bengali, Gujarati, Hindi, Malayalam, Marathi, Punjabi, Tamil, Telugu, Urdu)
ADI also maintains a list of its various member countries (national Alzheimer’s associations of various countries), and their websites. Various national dementia bodies may be reached at: Alzheimer associations. Some of these are countries that are culturally similar to India and have common languages and customs, and 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 lots of medical information on dementia, particularly on Alzheimer’s Disease. Information on the latest medical research and findings is available here.
The site also offers several booklets for specific aspects of caregiving. Want to know what Alzheimer’s 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 and provides extensive information, including several free publications on dementia and caregiving. They have graphics that clearly show the brain damage, very useful if one is trying to understand the organic nature of the disease.
For example, see this General Information page at ADEAR, where Alzheimer’s Disease is explained. The lower part of the page explains dementia as well as 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 and 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 is rich with information on dementia and caregiving, with plenty of help sheets and practical tips. The site has information for both patients and caregivers. Another excellent resource.
As part of its “Information in other languages”, Alzheimer’s Australia even has information on dementia in Hindi! There are several leaflets here, on a range of topics such as understanding dementia, diagnosis, early planning, communication, changed behaviour, and so on. Read/ download here
One excellent resource on Alzheimer’s Disease is Mayo Clinic, which has a section on Alzheimer’s Disease. This section includes explanations of Alzheimer’s Disease (symptoms, causes, tests and diagnosis, treatment, coping, prevention, etcetera). It also has plenty of articles on various aspects like early onset and studies on risk factors; there are a couple of slideshows, expert answers, expert blogs, resources, and updates. Mayo Clinic also has a newsletter you can subscribe to. A downloadable guide is available. Click here to reach the Alzheimer’s Disease section on Mayo Clinic.
For those interested in knowing more about Lewy Body Dementia, here is a site to check out: Lewy Body Society
Caregivers who want to be able to care with love and compassion should check out the photo-exhibitions of Cathy Greenblat. These sensitively captured moments and expressions show that dementia patients are not the “empty shells” they are often stereotypically depicted as, and illustrate how, with quality health care, patients can sustain connections to others and to their own past lives. Cathy Greenblat’s site is here and more on her project, “Love, Loss and Laughter: Seeing Alzheimer’s Differently” can be checked here and here.
Old Age Solutions is a portal on Technology Initiative for Disabled and Elderly, an initiative of the Ministry of Science and Technology, and created by AIIMS, Delhi. The portal provides comprehensive 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 dementia caregivers need to understand how palliative concepts apply for dementia care in advanced stages. Persons with dementia are unable to communicate, and also prone to getting confused/ unhappy at interventions which they do not understand, such as tube feeding, and it is known that hospitalization can also be extremely disorienting to them. That is, the characteristics of dementia impact how patients perceive and respond to care choices. The following resources give a good overview to 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.
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,. Click here to reach the 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. A FAQ from an Indian resource, Institute of Palliative Medicine, is available here. (India based resources are available here.)
Alz.org has an online community that anyone can read, and that you can join for free and participate in. Click here for the link to access it. 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/ websites for dementia and caregiving managed by a caregiver. Bob DeMarco, the man behind the blog, has been a full-time caregiver for his mother Dotty who had dementia; he shares his experiences and insights about caregiving and also provides information on various aspects of Alzheimer’s, and updates form research and news. 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 more than 3200 subscribers and 34,000 monthly readers. It also has an active facebook presence at this link. Bob deMarco has also created a list of books he recommends for dementia/ caregiving, which is available at Amazon as a “listmania” list here: 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 who has been blogging about her caregiving experiences since July 2008. Her blog has over 100 entries on her experience of caregiving for her mother with dementia, and well as some of her experiences with other caregivers of dementia patients. 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. Her Facebook group is here.
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.
- Bengali: Booklet on dementia from Alzheimer's Society (UK). Bengali information booklet from Scotland: Dementia. 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 (links here, here, and here). 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 : Click here to download. (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. 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, What is dementia, Information on dementia and dementia events. 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"(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: Dementia. 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.
Disclaimer: The links provided here are intended for information and convenience, and are not in any way intended to be an endorsement for the resource. .
Some dementia patients have written books and spoken up about their experiences and feelings, and 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 here and also shares thoughts and memories on her blog
- 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.
[This page was last updated in December, 2014]