A lot of the online information about dementia is either quite simplistic, overly technical or use negative language. However, there are also many great resources about dementia which are both entertaining and fascinating.
Here is a list of our Top 12 Online Resources about Dementia.
In our interview, Alison described Kate Swaffer as a “dementia activist”. Swaffer, who herself has dementia, certainly campaigns tirelessly to improve the media’s choice of language when talking about people with dementia. She also has a highly interesting blog. She was a major contributor to Alzheimer Australia’s Dementia Language Guidelines, which are available for all to use:
Dementia Language Guidelines: https://fightdementia.org.au/sites/default/files/full-language-guidelines.pdf
Despite the name, the Alzheimer’s Reading Room is a great place for information about all types of dementia. This particular post gives 10 tips on how to communicate with someone with dementia.
Frontotemporal dementia (FTD), of which Pick’s disease is a type, often affect young people of under 65 years. It affects a person’s personality and judgement long before it affects their memory. This page has some fascinating stories from people with FTD themselves on what it is like to live with this type of dementia.
There is really a huge wealth of information about dementia online. This list of 20 blogs about Alzheimer’s and dementia are a great place to start.
Young, or Early, Onset Dementia starts before a person is 65. This UK charity provides support for people and carers, but also publishes people’s stories and links to personal blogs of people with dementia.
Personal Blogs from People with Dementia
It is not so common to hear from people with dementia themselves. However, the voices of people living with dementia can be found, if you only choose to look. These personal blogs give unique insights into the lives of people with various types of dementia in their own words. We recommend to read through the archives of these blogs, as some of them have been more active in the past than they are now.
Silverfox’s blog is sometimes funny, sometimes touching and always insightful about the challenges of having this type of dementia.
Kris has been blogging about her life with early-onset Alzheimer’s for 12 years now and still writes as elegantly as she did at the beginning. Her words are a true testament to how far from being “gone” people living with dementia are.
@mason4233 has diagnoses of both vascular dementia and Alzheimer’s. His blog features poignant snapshots into his life as well as guest posts and reposts from other writers.
Ken Clasper is an Ambassador for the Lewy Body Society and posts to his blog with both personal stories from his life with dementia and also about recent developments in research.
Another person with Lewy Body Dementia, this blog has been going for two years now. She not only posts about her own life, but also regularly links to creative work by other people with dementia symptoms.
Communities for People with Dementia
These two communities are good online meeting places for people with dementia. They are closed groups, specifically for people with dementia and their carers.
This Facebook group was founded in 2010 by Rick Phelps, who was diagnosed with Early Onset Alzheimer’s Disease. It is still going strong today and is a dedicated closed group which provides no-nonsense support for people with dementia and their carers.
Howard Glick has done lots to promote the online community of frontotemporal dementia through his FTD Support Group and has launched a dedicated Facebook group only for people with FTD. This is his blog, which gives instructions on how to join. He doesn’t hold anything back with this journal of his life with FTD.