The incidence of dementia is actually slowing down in some countries, and increasing in others, and although there is some evidence to support this, today is not about research. Don’t get me wrong, I have a very healthy respect for research and academics, perhaps am even becoming one, but it is now always about research.
There is a story online of The New Faces of Dementia, and it is interesting reading and viewing. It is the story of younger people being diagnosed with dementia.
We are the new faces of dementia, and as more younger people are diagnosed, and even people newly diagnosed with older onset dementia, if they are baby boomers, they are much more likely to speak up for their basic rights, about what and how they want services to provide for them, and about their diagnosis.
There are a number of blogs being written by people with dementia, some I have been following for some time, and a few new ones that I wanted to list here; these people are the new faces and voices of dementia, joining forces with those of us who have been speaking out for a while. It is not exactly as much fun as having a birthday party, but I say welcome to them all, to our world of advocacy and human rights.
If you know of any other blogs written by people with dementia, please let me know as I’d love to highlight them here as well. My site is predominantly about the lived experience, and is not the voice of carers, service providers or researchers, but rather, I hope in some small way here we can better inform them about our lived experience, and the impact of dementia, good and bad, on our lives.
Of course, I have to start with Dementia Alliance International, the advocacy and support group, of, by and for people with dementia.
Which Me Am I Today? Blog by Wendy, a person with dementia from the UK, who featured on the DAI blog recently.
Journey of Discovery by Mick Carmody in Queensland Australia
Richard Taylor, PhD Richard Taylor is an amazing man living well with dementia, and an advocate for people with dementia.
Creating life with words: Inspiration love and truth My daily blog about living well with dementia, as well as occasional bursts of humour, positive living and poetry.
Helga Rohr lives with younger onset dementia, and is the Chair of the European Dementia Working Group
EarlyOnsetAtypicalAlzheimers John Sandblom writes about his experience of living with younger onset dementia.
Living well with Lewy Body Dementia Ken Clasper is 66 and has lived with young onset dementia with Lewy bodies since his mid-50’s. He writes a regular blog.
Dementia Survivor… so far Chris Roberts is in his early 50’s and has been diagnosed with young onset Alzheimer’s disease. He writes a regular blog.
Truthful Kindness 56yo woman, living with diseases including Celiac, Lyme, Babesia, Osteoporosis, FMS & probably Lewy Body Dementia; began Aricept Jan 2014.
Bruce Bane is an American author and blogger. His blog Living with dementia details the effect frontotemporal dementia has on his life.
Wise Words Lost for Words is a blog written by Valerie Blumenthal who was diagnosed with PCA Alzheimer’s disease in her early 60s.
Alexandra Boothby was diagnosed with Huntington’s disease at the age of 24. Six members of her family have died from the disease and her diagnosis inspired her to start writing a blog, Living With Passion.
Ken Clasper is 66 and has lived with young onset dementia with Lewy bodies since his mid-50s. He writes a regular blog Living well with Lewy Body dementia.
Barry Pankhurst was diagnosed with mixed dementia with Alzheimer’s disease at 58 and writes a blog called Faces of dementia. He lives in Indonesia with his wife and writes candidly of his life with the condition without having conventional support available locally.
Chris Roberts is in his early 50s and has been diagnosed with young onset Alzheimer’s disease. He writes a blog called Dementia Survivor.
Early Onset Atypical Alzheimer’s Disease is a website and blog written by American John Sandblom. He has young onset Alzheimer’s disease and was diagnosed at 48.
Truthful Kindness is a blog written by a 56 year old married woman about her experience of living with dementia with Lewy Bodies.
Wise Words Lost For Words I AM STILL ME. Living with PCA Alzheimer’s, by Valerie Blumenthal.
While I Still Can by Rick Phelps, who was diagnosed in November of 2010 with Early Onset Alzheimer’s disease, at just the age of 57.
George Rook: Living well with dementia diagnosed aged 63
These blogs are not written by people with dementia, but are definitely worth reading:
Dementia: Stuck In Between is an American blog written by the adult children of people with dementia, many of whom have young onset dementia.
D4Dementia is a blog written by one of the UK’s leading dementia campaigners, Beth Britton. Beth’s father had vascular dementia for 19 years, it began when she was 12 years old. He died in 2012, aged 85. I am a great admirer of Beth’s work and am lucky enough to call her a friend, who I have met in real life.
Other useful links can be found here