I know that even Scotland have a long way to go but they are so much further on than the rest of us and I don’t understand why? Is this my imagination or reality?
During August I had the pleasure of spending 2 days at the University West of Scotland in Hamilton near Glasgow. I was there to speak at the conference with Dr Louise Ritchie. I took part in her research Project while I was still at work around the challenges faced by those with dementia in their lives and still at work.
Louise met me at the station and we had a great catch up in the car. The sun I’d ordered to get there ahead of me had arrived as planned and Louise used her air con for the first time this year! They’d only just turned off the heating in Scotland last week, such has been the lack of summer. I’d had a great Twitter conversation with Dr Karen Watchman about what to pack – it ended with ski jacket, hat, scarf, T shirt and sunscreen…………
When we arrived we went and saw the lecture theatre in the silence…….the last time there was silence as lunch was amongst 150 people as that was how many were attending and lunch was first…..Who waved at me at lunch but the lovely Agnes Houston. She’s managed to get a last minute place after seeing me tweet about the conference so it was lovely to get a catch up with Agnes.
The lecture theatre was very noisy but proceedings eventually started with an introduction by Professor Debbie Tolson – Director of the Alzheimer Scotland Centre for Policy and Practice. Dr Karen Watchman, a Twitter friend from the Uni then introduced each speaker..starting with the University West Scotland perspective by Ross McNaughton Head of HR there. The talks would all centre around being employed and having dementia in your life.
Bernard from the Alzheimer Scotland Carers network – he cared for his mum – then spoke of his experience of someone working and caring for someone with dementia. He emphasised what helped him was having an approachable, caring employer and the value of being open with them. He tried to arrange appointments around working hours – employers value employees who try to arrange things at the beginning or end of the day as it causes least disruption to all. He quite rightly said that it needed to be a 2 way partnership – if the employee does all he can the employer will do the same in return. That’s what it should be like everywhere! He also spoke of sharing funny experiences with colleagues as you also need the support and understanding of colleagues. Great talk.
Stewart Black a retired engineer living with dementia, was then up next – he was in conversation with Louise. He worked for Rolls Royce and pre diagnosis kept a black book of things that weren’t right – we all need a ‘black book’!. He employer was very supportive – good on you Rolls Royce! – as jobs became more difficult, they would move him to jobs he was still capable of but, ‘ I got to the stage where I was feeling worthless.I felt I was taking money off them for nothing’. He and his wife talked about it one weekend and decided it was time to go –‘ I went in on Monday and gave my notice’. He went when he decided the time was right – that’s how it should always be. ‘Rolls Royce were brilliant’
It was then my turn. Amongst other things I spoke of my shock at the lack of knowledge and awareness in the NHS – the one place you’d least expect…I spoke of my connecting with NHS Employers and the production of the Toolkit which is now available for all managers to access to enable them to support employees and my speaking at the launch of the Alzheimer’s societies Guidelines for Employers. It seemed to go ok.
Louise then spoke. Her research was funded by Alzheimers society and she worked alongside Professor Debbie Tolson and Prof Mike Dansen. She was able to gather 17 case studies – each story is being completely different.
What she did find from us all is that continuing employment is possible post diagnosis. Some people are pushed out of the door. Employers thought they were doing their best but had a total lack of awareness. Appropriate support and adjustments were needed at the right time to enable the maximum benefit for employees and employers.
Benefits of continuing to work for those living with dementia was it helps keep the brain working. It becomes more than the financial well being. For me personally, it was a matter of principle. At the time I was still able to function and contribute well at work. It was up to me when to retire, not my employer. But for those wanting to retire, an appropriate support plan should be in place to retire if and when they want to.
This was such a valuable piece of research and I do hope they manage to get the funding they need to continue as this issue is only set to increase as earlier diagnosis along with later retirement age will increase numbers affected.