Housing needs for those living with Dementia”…..

All Party Parliamentary Groups still continue during these odd times and I was asked to contribute to one via zoom yesterday on housing. I was asked by Lord Best who is a British social housing leader and member of the House of Lords to speak for 8 minutes, the same time given to all, about my experience.

Katey Twyford had emailed me asking if I would be interested – she is the External Research Associate at the Centre for Loneliness Studies (University of Sheffield), and Housing LIN Associate (Co-lead for Dementia and Housing). I’ve tried to find out what the LIN stands for but have failed miserably…..

I was actually nervous, waiting for the time to come to log in. No playmates or familiar faces to greet me, just strangers on a screen, something I’ve done a million times before in person and never been nervous, so why now? I spent the half hour before sat watching the birds in my garden simply to calm down

Whenever it’s a zoom invite that I’m not familiar with, something always goes wrong. Usually I click the link and hey presto, I’m there or inside a waiting room until someone lets me in…but I knew from the link provided that this wasn’t a normal link….

Katey had asked if I wanted to meet via Zoom beforehand just to say hello and hear the format, but I knew that wouldn’t help with the on the day technology, so we exchanged txt numbers instead for when the problems arose….and they did..🙄

I couldn’t get in and it simply kept saying, ‘Internal meeting, please log in as your company”.
Luckily there were some very helpful people on hand. They told me to log into my own Zoom account and then use the details they’d sent. Easy…unless you can’t remember your password 🙈…Stress levels rising, I clicked the button saying I’d forgotten my password and sat waiting for the email reset to arrive. Time was ticking and I was speaking near the beginning….I decided to give up and send Katey my speech for her to read out on my behalf, but was very disappointed, when suddenly the email popped through and I reset my password, logged on, entered the details they’d sent and appeared in the waiting room.

Suddenly I was on screen with lots of unfamiliar faces, scrolled across to see many others, including the familiar face of Dawn Booker from Worcester University. There were architects, MP’s Researchers, Housing Trusts and many more in attendance over several screens…here’s a piccie someone posted on Twitter of 1 screen….

Messages had come on screen saying hello as well as on my phone. Suddenly Lord Bell, welcomed me and it was my turn…😳…..luckily I’d typed everything out so could simply read the words otherwise I’d have been a right numpty….

Part of what I said was:

Me and my daughters didn’t realise at the time that I wasn’t capable of choosing an appropriate house. I’d always relished moving in the past and taken on projects and done all the work myself. Suddenly I chose a house because of the big picture window that overlooked an old paddock, ignoring the 2 gardens to maintain, the steps up to the front door and at the back of the house, the 3 bedrooms I didn’t need. But we are where we are and now I adapt it as dementia throws challenges at me.”

I also mentioned our Dementia Enquirers project – ‘Living alone versus living as a couple’ as there are many difference in housing needs coming up but also mentioned how we’ve a long way to go….

It seemed to go down well and there were lots of questions afterwards. One about the cost of the adaptions I make. I said small things often cost little but make a huge difference, for example, painting a dark blue border round all my light switches so I can see where they are better…and many more..

After me was Ruth Eley from the Life Story Network, who raised some really good points from her work over in Liverpool, especially around the complications of applying for services. I added:

We don’t know what we don’t know. Services may exist that would be very good for lots of people but if we don’t know of their existence they’re pointless” so we all agreed that communication needs to be improved especially post diagnosis.

After Ruth was someone from Stirling University, but sadly her presentation went over my head and I couldn’t take it in. I’m sure some very good points were made but not for me as an audience. I picked up one interesting piece of data, which said how the house builders are building less 1/2 bedroom houses in comparison with the percentage needing them…..

The presenter showed one slide of a building, designed for people with dementia that had won awards. I was quite surprised as the first thing I noticed was floor to ceiling windows and I would have found those distressing. Whenever I’ve been in a room with floor to ceiling windows I’ve wanted to walk straight through them and felt as though I would fall off the edge. It looked aesthetically pleasing, as so often is the case, but it mustn’t replace practical safe space. You need small pockets of differences in these buildings as one design doesn’t fit all and dementia friendly design is no exception to this….

It was a really well spent 90 minutes. Some very kind, very approachable people on the call and some lovely comments and thanks. Lord Bell said how they hoped to have a paper by March next year along with recommendations, so hopefully the work will be ongoing and the outcomes useful for many.

I pot the kettle on having survived the stress and watched the birds once more….

Me think, this pigeon looks like I felt…confused and a tad lost but glad to be on the ground….🙄

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

14 thoughts on “Housing needs for those living with Dementia”…..

  1. I imagine the point was also made that, although many variations are suitable for many people with differing dementias and varied caring situations, one size will not fit all. When you have met one person with dementia, you have indeed met one person with dementia. And as with you preferring light switch plates with added emphasis, many things which work well for people with limited vision and for those with vision loss at the brain level (which is often aimed at reducing visual clutter), may also be appreciated by those with a range of styles of dementia.

    I like the idea of pockets of difference in a building, though we often don’t actively notice diffent floors in an office having a different colour scheme, we do use it as much as a notice saying floor 3.

    Liked by 1 person

  2. Hi Wendy,

    It’s good to see that you can still be an advocate for dementia online, without all the travelling by train. The life you are leading in your Yorkshire village is very attractive–close to people and nature, although challenging in the face of Covid-19. I quite understand why you are unsure on what to do as lockdowns are eased up. It is not an easy decision at all about whether it is safe to travel on the village bus. One helpful point would be to know how many cases of infection there were in in the local area, but this may not be possible. You can enter your postcode into a government website that will tell you how many cases there are. I think if you ask Google, etc. “How many infections are there is x?” you will get an answer.

    Take care . . . and congratulations on your testimony to the House of Lords parliamentary committee.


    Liked by 2 people

  3. Well, Wendy, Congratulations! So nerve-wracking but you did it, and I have no doubt that you opened a great many eyes to lots of things to do with living with dementia, that most people just don’t realise. Very well done, I’m proud of you!

    Liked by 2 people

  4. Well done Wendy. Technology can be daunting at times and easy to give up on it but you kept at it and made a useful contribution in behalf of many. Likewise, proud for you.

    Liked by 1 person

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