Informational websites on dementia / caregiving

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.

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

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:

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Alzheimer’s Association (Alz.org) and ADEAR

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.

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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 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

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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’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.

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Portal for old age solutions

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.

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Other Sites covering related topics such as palliative care and ethics

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.)

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Blogs and Communities

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.

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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.

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Voices of dementia patients

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.

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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.

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[This page was last updated in December, 2014]

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