Category: 2018

My First Friendly Dementia Cinema

Last Thursday started cloudy, but by the time my Daughter Evelyn and I got to town, the sun was breaking through the clouds.

We got there early so we sat on The Moor in the sunshine until it was time to go in.

We went in the building where the cinema was and I met my first challenge, the Escalator. It was running slowly but as I went to step on it, the escalator went faster, which was disorientating and then another escalator which did the same thing.

In the waiting area were a couple of friends from the Dementia Cafe’sand the DEEP UK group I go to, so we sat with them. The manager of the cinema came along and welcomed us all and he organised the tea, coffee, cakes and biscuits in a side area.

We moved to the side area and had a coffee, some biscuits and cakes, meanwhile a few more people joined us and when it was time we all moved into the cinema.

The screen was a decent size and the seats reclined, with a table between some of the seats. At the front there were flat seats, which could be moved and behind them were recliner seats that could be moved to accommodate wheelchairs, which was useful as some of the people there were in wheelchairs.

The Light Sheffield 0

The film was Seven Brides for Seven Brothers, which was poignant as its comes around birthdays of and anniversaries of, the passing of my Grandmothers and my Parents, who all liked that film.

SevenBridesForSevenBrothersPoster

When the film started the lights weren’t turned off completely which meant you could see the steps if you needed the toilet but that didn’t interfere with the film.

Sadly, there were only 18 of us there, I only found out about it from friends, which is par for the course in Sheffield as elsewhere, where the signposting of what is available to the Dementia community is poor.

I enjoyed going, the only other downside was that they forgot to turn the sound down a bit, which is one of the selling points of Dementia Friendly Cinema, hopefully they will remember next month.

I would recommend giving it a go, if you can find one locally and hopefully it will continue in Sheffield. The tickets at £5 were reasonably priced and if you have a CEA Card it’s only £5 for the person with Dementia and 1 family member/carer.

Post-Diagnosis Support

This article will be gradually updated as I learn more.

If you talk to people reader, the overwhelming comment is the lack of a timely diagnosis, support and signposting of services from seeking a diagnosis, through the point of diagnosis and beyond.

Commonly there is a feeling likened to stepping off a cliff into a dark hole.

There is now a recognition of the importance of a timely diagnosis followed by post-diagnosis support, from the point of diagnosis, for the person living with Dementia and their family/carers.

The World Health Organisation has a Global Action Plan 2017-2015 for Dementia.

During the Alzheimer’s Society’s Dementia Action Week, Dementia Alliance International announced the formation of the Global Rehabilitation Alliance.

The Centre for Economic and Social Research in Ireland have published a report on Post-Diagnosis Support for People with Dementia and their Carers

Although my wife and I, haven’t had support from the NHS, apart from my Neurologist  or local Council, which should be equal to that of other Chronic Diseases, we received important support and empowerment from the A Good Life with Dementia Course, from my friends and organisations on Twitter and from Voluntary organisations like the Alzheimer’s Society, DEEP UK, Young dementia UK, Dementia Cafe’s et all.

“The Twitter Use of People Living with Dementia” Study – Part 1

Recently, saw me take part in my 5th Dementia Research Study.

Catherine Talbot, a PhD student from the University of Exeter Medical School, travelled up from Exeter to interview me for “The Twitter Use of People Living with Dementia” Study.

The Study takes a year, there will be 2 further interviews, one in six months and a final interview in twelve months time.

Catherine had already emailed me the consent form and questionnaires and an assessment of functional ability, which I had completed and posted back to her and she asked if she could record the interview.

We started with a Cognitive Assessment and then we talked for about 30 minutes about how and why I came to use Twitter. We then talked about the challenges (Trolls) and the benefits of using Twitter after a diagnosis of Dementia.

Some of the benefits are the support of peers who have been through a diagnosis of Dementia and organisations/charities that provide information and support. It can aslo be easier than talking face to face, especially on the foggy days, as I can type something out, change all the typos, something which is happening more and more, before posting.

The second part, again 30 minutes, was talking about some of my Twitter posts and retweets which Catherine had printed off. That done, it was time for Catherine to go and travel back to Exeter.

This was another example of how simple, taking part in research can be and another example of a simple activity we can benefit from by being engaged and may benefit future generations.

 

DEEP UK – Shindig Group

Recently, I went to my first DEEP UK meeting at the SHINDIG Group in Sheffield.
I was made very welcome and met lots of people, some I already knew from other groups.
We all sat chatting, enjoying tea, coffee, sandwiches and buns before the main part of the afternoon which was a presentation from South Yorkshire Ambulance.
After the presentation, we split into four groups, one for carers and the other 3 groups splits us into different stages of our Dementia.
We discussed different scenarios that South Yorkshire Ambulance wanted to us to look at and to get our views and  suggestions on.
One suggestion was that they put their Dementia training online and had a person with Dementia talk to staff about their experiences instead, which went down well with all, so hopefully the service will embrace such a change.
I enjoyed my afternoon and would recommend anyone joining their local DEEP Group.

Stepping Out of the Dark Hole

As 2017 came to a close and endless googling,  I turned to Twitter to see what I could learn about my new world of Dementia.

In January I took part in my first research study and Twitter became a source of information and support, which I am truly grateful for. Twitter was an empowering experience, which made me realise that the media perceptions of wrinkly hands and suffering didn’t apply to me and reignited my passion for good quality person-centred care, which had been my ethos throughout my time working in care.

Some of the “new” initiatives I read about made me smile, such as #EndPJParalysis, something I had practised since my first day working in a Care Home nearly 20 years ago. As the years went on, I am became an advocate for patients, enabling them to speak out and stand up for their rights and challenging Doctors and doing the best I could for the people I cared for.

Another turning point was at the beginning of April, I began to read about the “A Good Life with Dementia” course, which I was lucky enough to attend, even though it meant a 130 mile round trip and I had begun to write my blog by this time.

In my blog, I write about my journey, rights, Organisations amongst others to raise awareness and advocate for change.

At this time I also learnt that simple things like an app on my phone, so that my wife could track me and thereby reduce her worry, enabled her to allow me to get out more and feel like I was living not surviving. 3 more research studies followed and I am now a couple of months into a 1 year study.

Since then, along with Twitter and a new Facebook group, I have joined a number of organisations and campaigns, along with a Dementia Cafe , A Petition for a Carer’s Strategy , DEEP UK – Shindig Group , Coping Strategies amongst others.

Recently, I had discussions with Sheffield University and Dementia UK about bringing Admiral Nurses to Sheffield and next week I will be trying out a Dementia Friendly Cinema.

6 months into 2018, my lived experience is more positive. I seem to be in a much better place going forward and the path of learning, advocacy and raising awareness have given me the strength to continue fighting mine and for others Dementia for as long as I can.

My blog reader, as well as record of my journey, I hope, will perhaps empower someone going through the same journey as I started about four and a half years ago to put aside the negative stereotypes and look for ways to live their life with Dementia.

 

Part 4-The RADAR Alzheimer’s research study.

Recently, I was back at the Royal Hallamshire Hospital for the next part of the RADAR Alzheimer’s research study.

They had booked me a taxi and I got there in time for Grace to greet me and we went through to one of the research rooms.

After the usual questions and blood pressure, Grace took some blood for tests for the study to check different levels in my blood and checked any tablets left.

The appointment was three days early because of Bank Holiday Monday so I had 3 tablets left. I explained that I would prefer to have the appointments on a Monday in future so that I can manage my time better. Grace said that wouldn’t be a problem, all I needed to do was go back on Tuesday to check I had taken the last three tablets.

Another simple research appointment and once my Tablets arrived arrived from Pharmacy, I was free to go and I made my way down to the main entrance to wait for my Taxi.

 

First time at my Local Dementia Cafe

Last Tuesday was my first visit to a Dementia Cafe at St Thomas More Catholic Church in Parson Cross.

On arriving I recognised someone from last weeks Alzheimer’s Society Cafe and I went to the counter, bought a Coffee, sausage sandwich and sat down at one of the tables, where I found some more people from last week.

One of the organisers, came for a chat and she explained about the cafe and the different activities they have. I filled out a contact form and a consent form for Data Protection.

Over the next hour we all had a good old chat and there was plenty of laughter.

Then it was time for the second hour, a Mother and Son Duo singing 50’s songs. We all enjoyed it but it was so loud and by the 3rd or 4th son I started getting pains in my Temples and back of my head so I said goodbye and lesft with a somewhat painful and foggy head to make my way home.

I did enjoy it and will certainly go again, some of us will also be meeting up at a DEEP UK meeting next month but I will have to be selective about the activities I stay for in the second hour so some weeks I will only be able to go for the first hour.

Mobility Research at York University

Last Monday, following my visit to the A Good Life with Dementia course, Alastair Jordan kindly drove me to York St John University to take part in my 4th Research study, this time, looking into the differences in mobility between people with and without Dementia.

Alastair Jordan

We started with a consent form and questionnaires followed by the usual cognitive testing, then it was onto the research itself.

To start with, Alastair had to put a lot of probes from my waist to my feet for the computer to pick up when I walked. Then I did a test walk to see if all was ok.

WalkingResearch1

Once that was done, I did the main walk between two black lines, round a cone on each end, until Alastair had enough data.

Once the data is processed it look like this:

WalkingResearch2

The white dots down my legs, showing where the probes had been placed.

The data also produces video of this, which can be compared between different participants, initially to see if there are any differences in our walking techniques. If they find that there is a difference, it may lead to different exercises, walking aids, footwear etc.

York Station

Once the test was over and Alastair had completed the paperwork for the research, he drove me back to York station and I made my way home to Sheffield.

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 Time for Action & Not just Awareness

No more the silent sufferers, we are the vocal fighters for our rights.

During Dementia Action week,  a move away from Dementia awareness  to Dementia action, to improve our lives and those of our carers with Dementia gained momentum.

Innovations in Dementia posted an article Time for Action, not just awareness

and Dementia Action Alliance posted Dementia Words Matter – A Call to Action

Tuesdays Global Rehabilitation Alliance Announcement from Dementia Alliance International heralded the arrival of a group of 14 worldwide organisations which will campaign for Post-Diagnosis support

On Wednesday the BBC programme The Toddlers who took on Dementia showed that small things can make a difference and that a person with Dementia can be involved in day-to-day activities and showed that inclusion doesn’t mean big budgets.

On Friday, Dementia Alliance International posted an article about Day 5 of the World Health Organisations Conference including a Video of Kate Swaffer talking about how things are and should be and in her Dementia Alliance International blog, gives a little more detail.

In January, Phyllis Fehr of Dementia Alliance International writes in a 2 part blog:

I am a Person with Dementia and I am a Person with Rights

Like it or not reader, our Rights and our will to be heard, not ignored. We are now taking our wish to live as well as we can to the Health Bodies, Institutions and Governments to bring about change. You may not agree, that is your right, as it is our right to heard,  listened to and for change for the better to happen.

No more Guidelines and Awareness, it’s time for Policy and Action

We have moved on from surviving to living – suffering to fighting