Living our own lives

Ok, I think I might be getting back into the swing of more regular blogging. There has certainly been enough ‘material’ around to give me ideas, and in going through my sent emails in a private gmail account, I found a large number of emails I’ve sent to myself on another email for blog topics! This is one note I sent to myself a few weeks ago! And the screen shot is of a quote I added to Facebook when I posted an article about Glenn Campbell’s latest (possibly final) album.

With the subject line ‘For a blog’, I wrote: I have a human right to be free, to have autonomy and to the same respect and disability rights as all others. I want health care to offer rehabilitation and proactive disability support at the time of diagnosis for us all. Most of all, I want others to believe our doctors… no one would choose to have dementia, nor lie about it. It’s important that we are supported to live with an optimum quality of life where we can be productive and happy, in spite of dementia, for as long as possible.

Glenn Campbell has, since his diagnosis of dementia, been supported proactively to continue to live his own life, not to assume a pseudo death and sit home and wait to die, or sent to a nursing home to pay Bingo or some other ‘activity’. Why is the system not supporting the rest of us to do this?

Those advocates like me all say they have found a new life and sense of meaning and purpose in what they do, and this has given them hope and a reason to get out of bed each day. However, the number of dementia advocates is small in contrast to the more than 50 million estimated to have dementia.

Therefore, let’s stop the Prescribed Disengagement® and start empowering and supporting EVERYONE diagnosed with dementia to keep living their own life.

8 thoughts on “Living our own lives

  1. Hi Kate, This is Jan (not Alan). I am reading your book at the moment and I say ‘all power to you’. I SO wish I had read it before my brother-in-law was diagnosed with vascular dementia. He lived in UK and ended up in care and medicated because he was ‘angry’. Well, why not?? I would be! We were only able to see him once a year (we live in Australia) and it was heartbreaking. He sadly died last year. He was such a wonderful man, a civil engineer, an historian who documented all the many little laneways in Surrey around his village. Of course he wanted to ‘wander’! Kate, your contribution to your own and others’ lives is invaluable. What a legacy!


  2. I’m in the process of moving cross country and have been looking for new doctors, including a neurologist. I was floored when my insurance told me that because of my diagnosis (dementia) it was considered a behavioral problem! I couldn’t believe it! I think research has shown that this is not just “something in our heads”. I will continue with all my advocacy activities with even more fervor, but I think we are still in the dark ages in many ways. I am glad you are back to writing Kate. We still have a long way to go to educate people (including insurance companies)!


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