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, Punjabi, Tamil, Telugu, Urdu
- Voices of dementia patients
Note that information on these sites is specific to the country the site belongs to, and for us in India, some of the information may not be relevant, such as the legal suggestions, health insurance, and ways to handle medical care. For Indian sites and resources, click here.
Also, as most available material assumes a different cultural context and level of support systems, you can refer to the following articles while considering how to apply the advice in the context of India: 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
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, and also links to resources in other languages (including Bengali, Gujarati, Hindi, Punjabi, Tamil, Urdu)
Alzheimer’s Association (Alz.org) and ADEAR
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 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 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
Other Sites on various types of dementia/ Alzheimer’s Disease/ related caregiving
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.
Portal for old age solutions
Old Age Solutions is a portal for Technology Solutions for the Elderly, an initiative of TIE (Technology Interventions for the Elderly) of the Department 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.
Other Sites covering related topics such as palliative care and ethics
Information about the Indian Institute of Palliative Care can be found at their website, which also has a list of their centres.
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.
Blogs and Communities
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, is a full-time caregiver for his mother Dotty who has 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.
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.
Some other blogs by caregivers are Laura Bramly’s ElderCareTalk and 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.
Dementia Information in Bengali, Gujarati, Hindi, Malayalam, Punjabi, Tamil, Telugu, Urdu
- Bengali: Dementia: What you need to know from Alzheimer’s Scotland, Several booklets on dementia, including understanding memory loss, diagnosis and assessment, communicating, dealing with aggressive behaviour, and handling legal and financial aspects, from Alzheimer’s Society (UK). Also, call/ email ARDSI Calcutta Chapter for availability of printed booklets on dementia/ care in Bengali.
- Gujarati - Several booklets on dementia, including understanding memory loss, diagnosis and assessment, communicating, dealing with aggressive behaviour, and handling legal and financial aspects, 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, and the site also includes links to Hindi material available from other websites across the world and to available videos and other resources in Hindi. Several videos and downloads are also available. Queries to this site can be sent in Hindi or English and will be answered in the same language.
- 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)
- Punjabi - Several booklets on dementia, including understanding memory loss, diagnosis and assessment, communicating, dealing with aggressive behaviour, handling legal and financial aspects, from Alzheimer’s Society (UK)
- Tamil - An explanation of dementia from Vision Age, Chennai, An introduction to dementia from Lanka Alzheimer’s Foundation; Several booklets on dementia, including understanding memory loss, diagnosis and assessment, communicating, dealing with aggressive behaviour, handling legal and financial aspects, from Alzheimer’s Society (UK) . 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, Chennai, Ph: 044 -26412030, 044 – 26267282, email: dr_v_s_natarajan@yahoo.com .
- Telugu - Help for caregivers, from ARDSI Hyderabad Deccan chapter, What is dementia, from ARDSI Hyderabad Deccan chapter, Information on dementia and dementia events, from ARDSI Hyderabad Deccan chapter.Also, call/ email ARDSI Hyderabad Deccan Chapter for availability of printed booklets on dementia/ care in Telegu.
- Urdu - What is dementia, from ARDSI Hyderabad deccan chapter ,What is Alzheimer’s, from Alzheimer’s Pakistan, Dementia: What you need to know from Alzheimer’s Scotland, Several booklets on dementia, including understanding memory loss, diagnosis and assessment, communicating, dealing with aggressive behaviour, handling legal and financial aspects, from Alzheimer’s Society (UK) . Also, call/ email ARDSI Hyderabad Deccan Chapter for availability of printed booklets on dementia/ care in Urdu.
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. .
Voices of dementia patients
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
- 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.
