After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……
Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.
They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.
The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!
Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.
Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…
Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window
An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.
Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!
Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:
“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”
And I finished off by reading an extract from my book about my glider flight.
There were many lovely questions, one of which was:
“if you had to choose one type of support from the moment of diagnosis what would it be?’
My immediate response was peer support – the opportunity to talk to people going through what I was.
People were very kind in their support.
Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.
“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!
It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.
The participants were solely from the Salford area.
The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.
People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:
“If I keep moving the dementia can’t catch me”
Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….
She showed a great summary slide
Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.
There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.
unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…
Now time for a cuppa tea👍
Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.
It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!
After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!
I’m sure there was lots more but……🙄
Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.
I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.
On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..