Follow on from yesterday’s blog

I had another thought following on from the workshop in London which I spoke about yesterday……..

During the discussions, the researchers still seemed to be in the realms of the ‘elderly’ when they spoke of dementia and the types of trials they were undertaking.

Whilst the elderly are undoubtedly a signficant group, I highlighted the fact that, an ageing workforce, combined with younger people being diagnosed, would pose different challenges for the future and it would make sense to start asking those questions now. It will be a whole new generation of people with different needs and requiring different types of research. For example, more studies are needed on ‘working well’ with dementia and the needs, not only of those working with dementia, but also a need to support those who are trying to juggle work and look after someone with dementia. You may or may not remember but I’m due to meet with NHS Employers with regards to two Toolkits they are working towards – one to support employees with dementia and the other for carers. The meeting is now taking place at the beginning of February so watch this space………..

I’m currently part of the research being carried out by Dr Louise Ritchie from the University of the West Of Scotland into dementia in the workplace and they’re in the process of asking for more funding for this to develop further. I hope they’re successful. There are lots of good engagement projects coming out of Scotland.

I also think my generation will have different expectations of care homes in the future and this could also make for a very interesting study in preparation for future needs. The fact that the National Institute for Health Research is planning to consult with those affected by dementia can only be good and may bring about more ideas and thoughts on future needs.

We’re heading in the right direction but so much more needs to be done, but this can’t be achieved without more talented individuals being attracted into dementia research and people with dementia openly being offered the chance to take part in research.

People with dementia making a positive contribution to change – Part 2

A continuation of my blog from yesterday about my first visit to my local dementia forum last week – a group for people with dementia who want to make a difference – a voice for those with dementia.

They often invite guest speakers. At this meeting there were 2 students from Hull University who are just embarking on their journey into dementia research. They were there to promote their research but also to look for volunteers from York. They have chosen to do their research on positive aspects of living with dementia – how refreshing 🙂

Helen had chosen the topic of ‘exploring the shared experience of humour in people with dementia and their partners’ and Kirsty is working on ‘a study of positive experiences whilst living with dementia’. Needless to say, they got their volunteers……and they promised to return once they’d completed their research.

I hope they found our enthusiasm infectious as it’s refreshing to have fledgling students focus on the positive aspects of living with dementia. We must do all we can to encourage young students into the field of dementia research as they are our future

There was also a psychologist from our local memory service. After hearing all our comments and experiences of the service he acknowledged that the service was far from perfect and was in need of a revamp. He has asked us to work with them in the redesign – a very positive outcome.

This meeting only lasted 90 minutes, but I came out full of hope and admiration for the work achieved so far and look forward to being part of their future involvement in bringing about changes in our community.

Never one to miss an opportunity, I’d also taken leaflets for all around signing up to Join Dementia Research as this was useful for those with the condition, the students and the psychologist from the memory clinic….

www.joindementiaresearch.nihr.org.uk

 

People with dementia making a positive contribution to change – Part 1

I went to my local dementia forum for the first time last week. It’s held during the day, so last week was the first opportunity to attend as I was on leave from work.

I arrived late (I’m never late!) as I had trouble finding the cafe but once inside I felt like I’d always been there – another WOW moment:) The session is for people with dementia who want to make a difference – a voice for those with dementia. It was led by Emily Abbott who is heavily involved in dementia awareness, and the forum is part of DEEP – The Dementia Engagement and Empowerment Project – advertised as a ‘growing band of over 40 dementia involvement groups across the UK’:

http://dementiavoices.org.uk/

The people, as always, were wonderful and it soon became apparent that their voices had not only been heard but listened to. York City Council had consulted them on new signage for tourists for the city. They’d thrown out their first offering as they were too confusing for anyone, let alone those with dementia. But their views had been listened to and their second offering was much clearer and user friendly. The council have now asked the group to offer up suggestions as to the best place to place to position the signs.  Because we know the city so well we have invited a similar group,  the EDUCATE project in Stockport, Greater Manchester, which encourages people with dementia to get involved in awareness-raising in the local community and beyond.

http://www.stockport.gov.uk/2013/2996/41143/sdct

It will not only give us a chance to meet another similar group of like minded people but will provide a better test of the maps for getting around the city.

What a fine example of including users in decision making:)

Wrong bus, wrong bus driver!

I got on the wrong bus at the weekend – I’ve only just started using local buses as I now have a bus pass (another advantage of having Alzheimer’s – ha!). However, sometimes I get confused by numbers and I think one number is another. Some of our buses don’t stop at every stop. I rang the bell as usual, got up and went to the front of the bus, and it went sailing past my stop. I panicked and rang the bell again and said to the driver that I needed to get off. Little did I know that Mr Jobsworth was on bus driving duties that day. I said I’d got confused with the numbers and would he mind stopping on this occasion. It would have been really simple – I realise they don’t usually stop but there are many bus stops so it wasn’t as if it was dangerous……….

He was downright rude and no way was he going to stop the bus until he got to his destination 2 miles further on. He was even rude when I got off and said I should take more notice next time. ………………..York is aiming to be a ‘Dementia friendly’ community. Most bus drivers are brilliant in York but the driver was obviously off work the day he was suppose to have training.  I’m grateful that my mind is still in a state where I can cope with such attitudes and remained standing for the remaining 2 miles, but I was still confused about where we would end up.

At the side of me was a young man in his twenties. He picked up on the situation and could see I was confused and began to talk to me. He asked me if I was okay and not to worry as he’d show me where to get the bus back when we got into town. I told him I had Alzheimer’s and got confused sometimes and we had a laugh and a joke about him and me. Just by talking to me, this young man made me feel calm again.

Am I the only one who believes we should all show kindness and patience to one another whether or not dementia is the cause of confusion? We’re all individuals but let’s just be nice to one another and tolerate each others quirks.

I may have been someone who hadn’t ventured out for weeks. After that experience I may not have ventured out for many more weeks.

There’s a paper out for public consultation at the mo regarding a code of practice for dementia friendly communities. The deadline for comments is November 14th. I realise you’re all busy people but if you’re interested please have a look and send any comments to dementiafriendlycommunities@alzheimers.org.uk.

Code of Practice draft: click here

An quick and easy way to show your support is to send an email to the above address simply stating that you support the code of practice.

All it should really take for businesses and services is good customer care – it should be an automatic response to anyone in difficulty. All those providing a service should be of that disposition and if they’re not they shouldn’t be in that job. I’ve been helped by simple kindness from people of all ages so it’s not age related.

As for it not being a legal obligation for those working with dementia patients to have dementia training, well that’s a whole new conversation and I’ll leave that for a future blog.

Since diagnosis it’s made me realise that not doing anything gets you nowhere. It’s a shame but often the case. I’ll step off my soap box now and think calm thoughts:)

Billy has no trouble thinking calm thoughts