Informational websites on dementia / caregiving

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.

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.

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:

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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.

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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.

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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

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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.

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Portal for old age solutions

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.

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Other Sites covering related topics such as palliative care and ethics

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.)

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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, 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.

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Dementia Information in Bengali, Gujarati, Hindi, Malayalam, Marathi, Punjabi, Tamil, Telugu, 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. .

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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.

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[This page was last updated in December, 2014]

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City/ region wise resources

City/ region-wise resources for dementia care: Bangalore, Mysore,   Chennai, Coimbatore,   Guwahati,   Hyderabad,   Kolkata,   Manipur,   Pune,   Delhi,   Goa,   Kerala cities,   Mumbai,   Others Also: Resources across India and Informational websites.

Extensive blog on dementia care

Swapna writes blog Swapna Kishore writes about her personal experiences of caring for her mother, and also shares observations as a resource person for dementia care in her blog here.