The new faces of dementia

voices of dementiaThe 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

Norrms MacNamara a man livin gin Tirbay with younger osnet dementia, also co counder of the Purple Angel movement

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.

Shibley Rahman’s blog is another I would recommend, along with his site Living Well with Dementia. He too is a personal friend and colleague, who I am also lucky enough to have met in person!

Other useful links can be found here

13 thoughts on “The new faces of dementia

  1. Only just seen this Kate! Having a big reading session of lots of blogs, including yours – I have a bit of a backlog!! Massive thanks for including my blog in your list, honoured to be amongst such illustrious company. Very lucky to call you my friend too xx

  2. I always love reading your blogs Kate. As you know, YoungDementia UK website has a blogs listing – I think you may have used it to help compile your list above – but it was great to see some new blogs that we didn’t know about. I will get our page updated today. Loving the sharing of info. Keep up your inspirational work, Kate, YDUK xx

  3. Good morning from the UK Kate. What an inspiring title for your blog – simple yet says so much. We ‘New faces’ are a new generation of people living with dementia, almost in a way not felt possible before, as our common goal is to live positively. Since being diagnosed back in July I have learnt so much from people like yourself Kate, but mainly that I’m not the only one who thinks that you can carry on living! We are a new generation, with new thoughts and expectations.We don’t conform to the past images of people who have dementia.To all of you – thank you for being out there as distance no longer matters.

    • Thanks Wendy… no oubt it is a chilly UK now and getting cooler. I am so glad you are blogging, and have found mine and others helpful too. As you say, a new generation, with new thoughts and expectations… no longer willing to be locked up either! take care xx

  4. There is far more to be learnt from the lived experience than by the laboratory tests and ambiguous surveys. With such a wealth of information out there all that is needed is for the researchers to actually listen and learn, rather than imposing ideas for their next research paper or policy. To all those who take the time to write a blog, or even read them, thank you. xxx

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