On Monday night this week, there was a television program in Australia (4 Corners) on the ABC which featured three couples with dementia. I had a reasonable idea it would be full of suffering, although it showed a lot of love and living as well as humanly possible as well, but from all accounts, it…
This is the most common thing I hear from people about my diagnosis of dementia, and is possibly the most common others with dementia talk about. Even some people with dementia say it to me; yes, even when they themselves know how insensitive it is to hear it said. It is an odd conundrum, and one…
One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning. I am not talking about physical functioning, as…
I’m re-blogging a post from a blog I read called Memory Issues, written by a loving and enabling husband Paul, who is the care partner for his wife Maureen. I really respect his willingness and creativity, to allow his wife to be as enabled to live her life, as well as possible. Often, what I see…
After my blog yesterday, talking about safety vs autonomy, and my feelings about the traditional styles of residential care, I felt it important to also say, there are many in the sector wanting to improve things for people with dementia and their families. There are, as highlighted in some comments, many family care partners who…
What can i say… well not that much today, but, I am delighted to report I have been in a teleconference for over an hour discussing a research project around the theory of Prescribed Disengagement™. Woo Bloody Hoo! I really do have a lot more to day on this, but this slide for now says…
Australia, and many other countries have until recently had no national guidelines for the post diagnostic support of people with dementia, which I see as more than a failing, but as unethical. However it is encouraging to be able to report that the national clinical guidelines recently drafted went out to the public for comment before they are to be finalised, hopefully by…
Yesterday I was invited to give a presentation at the Better Practice Adelaide 2015 conference held at the Hilton Hotel, and most of the time now when I present, I also always represent Dementia Alliance International in some way. The theme of this event was Quality – Through the looking glass: What’s new in 2015. One…
Many people over the last few weeks in the UK have gone up to my husband and said, things like; we know you as BUB… do you have a real name?! Peter, also my Back Up Brain or BUB, is my husband and one of my heroes, and I do have him up on a…
Alix Spiegel (@lmillernpr) and Lulu Miller (@aspiegelnpr) from NPR Invisibilia in an Episode titled How to Become Batman, published online on Friday 23 January 2015, examine the surprising effect our expectations can have on the people around us. Plus, hear the story of a blind man who says expectations have helped him see. This is extremely relevant to the way…
There is emerging evidence for non pharmacological interventions for dementia, and evidence for life style changes as a way of preventing a diagnosis of dementia. It is, for me and many others living better with dementia, in spite of the sector telling us to go home and give up, very exciting times! Who knows how many…
For six months now, I have been visiting and working in the Kiama area as part of the contracted consultancy role I have until this week with Alzheimer’s Australia, on the dementia friendly community Pilot Project with the local Kiama council, Alzheimer’s Australia and the University of Wollongong. The main challenge has been to involve and…
I often ponder on the various activities and forms of ‘behaviour management’ or recreation offered to people with dementia in the community, and then in residential care homes. Why not go skydiving, dancing or fishing instead of playing Bingo… I’d be happy to spend it on that! I suspect it is likely the reason activities such…
My darling husband and I were talking about how some of the roles have had to change between or for us, and how much easier it would be for him if he just took everything over for me. It would be easier for him. And it would be a darn site easier for me. But, it…
