Tag: A Good Life with Dementia Course

Final Thoughts on “A Good Life with Dementia” course

The year following my diagnosis was challenging dealing with my diagnosis, the loss of my father and finishing work, apart from Family and my Neurologist, no support. Things changed when I started doing research and connecting with people and organisations on Twitter.

I started seeing posts about a new Post-Diagnosis course in York called “A Good Life with Dementia” through Innovations in Dementia and York Minds and Voices, a DEEP UK group. I read Damian Murphy’s blog about the up coming course, for people living with Dementia and their carers, which made me curious and the next week I read Wendy Mitchell’s blog about week one of the course.

The following week I read Damian’s blog about week 2, my wife Sheila agreed it could be something that would work here in Sheffield. I contacted Damian to see if we could visit for a morning to which he agreed.

Week 3 of the course, turned out to be a turning point for my wife as well as she got a lot out of the morning as well. It was held at Lidgett Methodist Church

Church logo 2

where we all sat round a large table

Round Table

When we got home we talked about it and Sheila agreed that I could go again but this time on my own. Talking to Wendy Mitchell, who suggested using a phone app so that Sheila knew where I am and Sheila felt she could try it and see if she was happy with me going it alone, so I contacted Damian who agreed.

Going to Week 4 of the course was challenging going alone, the noise and busy stations were challenging but the session including perceptions made it worthwhile.

By Week 5 I had some in-ear Headphone which were ok but didn’t cut out all the noise and was an interesting morning based around a Market Place for 6 local organisation..

On Week 6 I had some over ear Headphones which were much better and the session on our rights was very enlightening..

The final session Week 7,  “Graduation Day”, a session reflecting on the course and was a mixture of happy and sad feelings. Happy that I had continued on the course, learnt so much and been able to do the 130 mile round trip on my own, sad that I had met so many wonderful people and I wouldn’t be meeting up with them for sometime.

The course is a valuable peer to peer post-diagnosis resource, for people living with Dementia and their carers, where we all learned from each other and of some of the things we can access. Talking face to face is so much more powerful than a video and someone at the front reading from a script. Websites are ok but its finding them and as one gentleman pointed out, he can’t use a computer anymore.

There weren’t just people at the earliest stages of Dementia, some were further on in their journey BUT they still had a lot to contribute and are going on to join York Minds and Voices along with their carers who were also took part in the course.

Damian Murphy has written a blog about comments by people on the course.

Rachel Fowler, a Student Nurse, was at the course each week helping out and herself learning, saying

“It’s opened up my eyes to a world I had never previously experienced and gave me a whole new understanding that will help me enormously in my nursing career.”

If this course can have that effect on a small group of people living with Dementia and one student Nurse, imagine reader,  if this course was run all over the UK and the world !

As the Alzheimer’s Society week has changed from Dementia Awareness to Dementia Action, it is time that our rights are no longer ignored and post-diagnosis support and Rehabilitation, from the point of our diagnosis of Dementia, should become the norm.

I wonder reader if locally and nationally, post-diagnosis support will become a reality for persons living with Dementia and their families.

This course has shown me that I can live within my limitations, knowing that as time goes on those limitations will become greater.

Whilst in the end stage of Dementia, there may be suffering for the person with Dementia and their family, society and the media should no longer put those of us in the earlier stages of Dementia into the media box of wrinkly hands and the state, regardless of where we are in our journey, should now put us on a par with other Chronic Diseases where they are referred to as fighters not sufferers.

On the 4th September 2018, Deep UK group “York Minds and Voices” including Damian Murphy of Innovations in Dementia CIC, were at the York Dementia Action Alliance Awards 2018, and won the award for Business, Charity an Community.



 

A Final Day In York

Monday was the last session of the “A Good Life with Dementia” course in York.

The taxi took me to the station, then onto the train, which was late owing to the new timetables that started today. The sun was shining in Sheffield but as we passed Doncaster it turned foggy but by the time I arrived in York, the sun was out and then it was on in a taxi to the course.

Damian Murphy opened the session by asking for our opinions on a 5 Point guide he had drawn up to signpost the 5 most common things people struggle to access after a diagnosis (Attendance Allowance, Council Tax rebate, the rest I have forgotten for now), that had been highlighted during the course.

It was then onto a summary of each session, which we were asked our opinions on, Wendy Mitchell and Damian Murphy have written more detailed articles on the mornings events.

Normally I would make a few notes to remind me how the session went on my way home. However, as Alastair Jordan from York St Johns University had arrived, at the end of Mondays session, to give me a lift to his research study on Mobility and Dementia  at York St John University, by Today, the details of Monday are lost in the fog of Dementia but the positivity I gained from my time in York will remain even when the fog of Dementia leads me into tougher times.

 

Dementia Action Week 2018 – A new International Association

Yesterday, on Day 2 of Dementia Action Week 2018, at the World Health Organisation Conference in Geneva, Kate Swaffer of Dementia Alliance International proudly announced a new International Association called

The Global Rehabilitation Alliance

This is to be a global association of 14 organisations to promote rehabilitation, hopefully,  from the point of diagnosis.

For too long, we receive a diagnosis of Dementia, are told to put our affairs in order and then there is nothing. In my experience and that of many others, as I walked out of the consultants room and it felt like I had stepped off a cliff into a dark hole.

For those readers who do not have a diagnosis, you feel that life as you know it has come to an end. Unlike some other Chronic Diseases, where you get a specialist nurse, OccupationalTherapist, Dietician, Speech and Language Therapist etc, with Dementia you are left on your own.

For me, that meant a year lost to Dementia. I had great support at work but because I wasn’t getting any other support and there is no signposting of services. There is the internet but during that time I couldn’t focus on endless searching. What I and we all need is that face to face contact with someone to guide us through our initial journey with our Dementia.

There is no one size fits all solution to a diagnosis of Dementia. There are over 100 types of Dementia, which have their own variants which is where rehabilitation comes in. The different specialities and others I mentioned earlier bring that face to face contact and have the skills to enable us to live well with Dementia.

In my own experience, it was taking part in Taking part in a Genetics of Alzheimer’s study and attending the 6 week  A Good Life with Dementia course in York which began my rehabilitation into living well with my Dementia. I should’t have had to undertake a 130 mile round trip to access the course as it should be available worldwide in every community affected by Dementia, that being said, I still do not have access to other services.

There are those in Government and Health Bodies who could make a huge difference through adequate funding, awareness and services and there are the medical professionals who mock us through journals and social media because we do not have wrinkly hands, (MRIs, Pet Scans and SPECT scans do not lie) and who will not see the benefits of rehabilitation.

Because of the system here in the UK, I had to stop working, I do not receive any benefits or pension. My PIP assessment was done by a young woman who didn’t have sufficient knowledge of Dementia and was obviously not a Neurologist. Because I didn’t look like I had Dementia, the PIP assessment bore no relation to what we discussed or the problems I was having with day to day living and I am not alone with this experience.

As with the Tories blatant disregard for disability, in the UK the news is full of Labour attacking the Tories for Austerity and the lack of funding of the NHS, it was Tony Blair’s Labour Government that turned a 40+ billion budget surplus into a 1.6 trillion deficit and mismanaged the banks and the Windrush scandal caused by the Labour Government of 1948 not issuing passports when these wonderful people arrived.

Before you shout in horror reader, I do not vote Tory, nor do I vote Labour or Lib Dem, I was just trying to balance my comments over the last two paragraphs.

To add further balance Katy Styles has been running a petition:

https://petition.parliament.uk/petitions/209717

asking for a Carers strategy UK wide, apart from her local MP, neither side of the House of Commons is actively supporting this and it doesn’t appear to be news worthy hence the low number of people who have signed it, bearing in mind there are millions of carers and cared for who will not have heard of her petition.

The point I am trying to make is

People living with young onset Dementia do not make good news stories,

there are no wrinkly hands. 

Those that have the authority to make rehabilitation from diagnosis happen need to stop paying lip service to our needs, stop playing political football with our lives and understand that

we have Human Rights to equal access to Post-Diagnosis Rehabilitation

 

Dementia Action Week 2018 – A Challenge

This week 21st to 27th May 2018 is Dementia Action Week in the UK and I have a challenge.

In the UK and around the world, there is little or no support at the point of diagnosis for Dementia compared with other Chronic Diseases.

Recently, I have travelled to York from Sheffield, weekly to the “A Good Life with Dementia” course which I have written about here A Rainy Day in York, which has been organised by Innovations in Dementia and Damian Murphy.

This course has opened up so many opportunities and has empowered my wife and I to live as well as we can with my Dementia. My only regret is that this course was not available to us last year when I was diagnosed.

So, How about it Theresa May, Jeremy Hunt, Jeremy Corbyn, Vincent Cable,  The NHS, Councils etc, if you truly care about improving services, the rights of people living with their Dementia, and understand the benefits of cost vs savings and the improvement of peoples lives after diagnosis:

DAW2018-1

George Rook has posted an excellent article including a letter to his local MPs etc

If you need to find out more try Dementia Diaries or take some time to watch Peter Berry’s videos

Take up my challenge for Dementia Action Week 2018

DAW2018-2

Another Day In York

Following on from last weeks A Good Life with Dementia , I was back in a warm York this morning for week 6 of the course.

A Taxi took me to the station and it was time to test out my new over ear headphones with noise cancellation as the in ear ones I tried last week weren’t very effective in reducing the effects of noise during that trip. By the time I arrived in York, I found that they had made a big difference and I was a bit clearer headed than before.

This week was about our rights and we were joined by Helen from Dementia Action Alliance. Damian Murphy gave a short presentation about rights and a few examples of peoples experiences around the country.

In our discussion there were many examples where our rights had not been maintained for example on a York Minds and Voices trip, they could only get on a train via a ramp at one end of the train, but had to go to the other end of the train to access their seats.

Another example was that with some Chronic Diseases, at the point of diagnosis you have access to all the support and services you need. In a lot of peoples experiences, when getting a Diagnosis of Dementia, you are given some leaflets and left to find your own way without any support.

mentalhealth.org.uk points out that :
People with dementia have the same civil and legal rights as everyone else.
The Human Rights Act 1998 (HRA) and European Convention on Human Rights
apply to everyone. Dementia is a disability under UK disability legislation (the Equality
Act) and human rights laws, and under the United Nations Convention on the
Rights of Persons with Disabilities (CRPD).

I arrived back in Sheffield, a little more relaxed as the new headphone had eased the noise and the resulting confusion that can occur, I didn’t expect them to cancel out all the noise but I was pleased with the result.

Maybe one day, with the hard work that a small group of people around the world are undertaking, all people with a Dementia will have equal rights to access support, services and funding.

Damian Murphy has written a blog about today in more detail.

Next week is the final week of the “A Good Life with Dementia” course.

 

A Hot Day In York

Continuing of from last weeks A Sunny Day In York yesterday I was back in York for week 5 of the “A Good Life with Dementia” course. This week I was trying out some new headphones to see if they would take away the background noises that can increase my confusion.

Week 5 was based around 6 different organisations around York that provides help and support for people with Dementia and their carers/family. At the start, they all introduced themselves and talked about the different ways people around York can access support and the types of information that was available.

One lady mentioned about a web site that was being developed which was like an online directory of services. The Gentleman sat next to me pointed out that he had never used a computer so he would not be able to access it and I pointed out that at the time of my diagnosis, I wasn’t in the right frame of mind to go searching on the internet and that it was only recently that I may have benefited from it.

A Gentleman sat next to me took issue with this, feeling that my wife could have done the searching but I pointed out that at that time my wife was unsure where to look for information and she was also dealing with other family and work problems at the same time after which he understood where I was coming from.

After the break we went into the main hall where the 6 organisations had set up displays and we were able to talk individually to the ones that were of interest to us which was a great idea as I firmly believe that face to face conversations have a greater long term benefit.

At the end Damian took me back to the station . The in ear headphones didn’t really work, I still has issues with noise, which combined with the stations being busy, losing direction weaving in and out of people made it a challenging journey both ways but I eventually found myself home.

Damian Murphy has written a more detailed account of  and next week is about rights.

 

A Sunny Day In York

Following on from last weeks A Good Life with Dementia course, I emailed Damian Murphy and he said we were welcome to come along the following weeks.

This time however was different. Last week we both got so much from being there, with our peers who had shared their experiences as the person with dementia and the spouses of the person with dementia that we took the decision that I should try making the journey alone this time. I think that Sheila being able to listen and talk to people about their experiences, reassured her that maybe for a time at least I might be able to make the journey alone

Thanks to Wendy Mitchell, we found out about a phone app that my wife could track me on, which my Grandson Lucas thought was great fun being able to track my journey while he was on his way to school. In addition I wouldn’t have to walk any where as I could get taxis to and from the station and thanks to Damian for the lift back to the station in York.

We started off discussing perceptions of dementia You Don’t Look Like You Have Dementia being a common one, media images and the effect these have on peoples perceptions. We discussed the language used about dementia Suffering being one commonly used by the media, today there were people at different stages of their Dementia journey, none of us felt we were suffering, if we had other diseases we would be Brave or Fighters etc, we are living as well as we can with Dementia

We talked about Dementia friendly places, how you can go into one shop and the assistant will point in the general direction of the item you want but go into another and they will take you to where the item is and if need be they would go in the back or order it for you. As Damian said Dementia-Friendly is just good customer service

We then spoke about support in the workplace, I mentioned that I had great support from the Hospital where I worked and my colleagues that enabled me to carry on working for a while but another person working in a charity shop wasn’t so lucky.

After a short break, coffee and more Liquorice Allsorts, sorry Wendy there were none left for you, perhaps Billy has some hidden away. We were introduced to Alastair Jordan from York St Johns University who gave us a lot of information on the benefits of exercise and he took us through our paces with a 6 minute walk test and checking our balance among others. Alastair also talked about the ‘Active Life Active Mind’ sessions that the University runs in York which are free activity sessions tailored to the individual persons needs.

Alastair also talked about a research project that he is involved with at the University, which I have agreed to take part in, looking at how people with and without a diagnosis of Dementia walk to better design aids and services for mobility.

It was good to have someone talk about the benefits of research. Most research may not benefit my generation because of the time it takes to get to new treatments, but it is a legacy we can all leave for future generations

At the end, Damian gave me a lift back to the station. It wasn’t an easy journey to and from York, the noise in the station and on the trains was challenging and if I had had to walk further than the taxi rank on my own I would have got lost. I know that it may be something I can do only for a short time but it gave me a sense of achievement.

Next week Damian has organised a Market Place in the Church hall for different groups and services in the York area.

Damian Murphy has written a more detailed accounts of Tuesdays session

A Rainy Day in York

Today we spent the day in a rainy York. In the morning, we spent time at the “A Good Life With Dementia” course, run by Damian Murphy co-director of “Innovations In Dementia CIC” and “York Minds and Voices”, including Wendy Mitchell and many others.

I took my notepad with me to make notes but in the end I only had time to write down 4 things:

Learning and sharing as equals, Fantastic peer sharing, Beacon of hope and Very positive

We were there for just over 2 and a half hours and the discussions were so inclusive of everyone that time flew by and it reinforced my view that this is an invaluable resource for a person receiving a diagnosis of Dementia and their families.

Learning from your peers can certainly be a much better way of developing the skills we are all learning to try and live with our diagnosis of Dementia as the person and the family and a course like this you cannot simply be put in a text book as we are all different and we cope in our own ways but we can learn from each other

When I was diagnosed last year, as I left the Consultants room, I felt like I was stepping off a cliff into a deep black hole. This is no bad reflection on my Consultant, who has been very supportive, but on the inequalities of the system and funding. Had this course been available to my family and I last year it would have made such a huge difference to us in dealing with the diagnosis.

I would like to see this course come to Sheffield and the rest of the UK, with the support of Government, the NHS and local organisations and I hope that this will one day become the norm.

25/04/18

I have received a lovely email from Damian Murphy thanking us for attending yesterday. Attached to the email was a copy of the letter that he sends to everyone at the sessions outlining how the day went and summarising the conversation everyone had, proving that inclusion and support for all is at the heart of this course.

26/04/18

Wendy Mitchell has written a blog about Tuesdays session, which gives a bit more information:

Please have a look at this and at the other pieces Wendy Mitchell has written.