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.
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.
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.
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.
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.
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.
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:
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.
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.
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.
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.
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:
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
On Monday, as part of Dementia Action Week, I posted a blog called Dementia Action Week 2018 – Post-Diagnostic Support – A Human Right
Yesterday, Kate Swaffer of Dementia Alliance International, posted her blog about her experiences of getting a diagnosis and the Human Rights breaches she has experienced on her journey.
Kate, also mentions her Dementia Family, something I can relate to. Over the last few months on Twitter I have met some wonderful people who, through their support, ideas, information and encouragement have empowered me to live a life well with Dementia, who I also refer to as my Dementia Family.
They have also opened up many opportunities for me to get out there and be more active, to access courses, groups and write this blog, to name but a few.
It is also good to see the Alzheimer’s Society week change from awareness to action.
It may be a forlorn hope but maybe Governments will take the societies lead and change their guidance and soundbites into action, time will tell.
Perhaps Governments need to read again the United Nations Convention on the Rights of Persons with Disabilities and the UK’s Equality Act 2010.
Dementia is recognised as a Disability by the UN & World Health Organisation and was the biggest cause of death in the UK in 2017, with heart disease at No 2 and Cancer at No 3, yet services and funding of the No1 cause are no where near No 2 and No 3 and therefore, do not respect the rights of people living with a diagnosis of Dementia or their carers.
What do you think reader ?
I’ll just sign off with a big thank you to my Dementia family, not just for the way you’ve all helped me but the many others you have helped.
Yesterday, as part of Dementia Action Week 2018, DEEP UK group, York Minds and Voices were at York Railway station to unveil their new banner, and raising awareness of the rights of people with Dementia.
They were joined by Philly Hare Rachael Litherland and Damian Murphy from Innovations in Dementia, Tony Husband, Ian Beesley, Wendy Mitchell, TMS York Brass group, the media and many others for the big reveal
“The right to a grand day out” is in part a reference to a day out by train that York Minds and Voices undertook recently and the challenges they encountered.
It’s “Dementia Action Week” this week and as Jayne Goodrick said yesterday at the Alzheimer’s Society Conference
“Everything has changed, and nothing has changed”
sad, but a true reflection on 21st Century Britain.
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
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:
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