Category: 2018

Leaving the Dark Hole behind

Having finally Stepped Out of the Dark Hole the fight against the injustices following my dual diagnosis of Dementia and the continuing fight to live my life with my Dementia had begun .

In July, I attended The University of Sheffield’s Dementia Futures 2018 Conference a showcase for PhD students to present their Dementia research in plain English as a member of the South Yorkshire Dementia Research Advisory Group where we judged the on-stage presentations and the posters for their clarity for people living with Dementia.

Towards the end of July I attended the Global Disability Summit in London as a delegate and I wrote an article about my time their for Dementia Alliance International

I continued taking part in research My Research and The Angela Project – Improving the Diagnosis of Young Onset Dementia Study


One day in August, I put some eggs on to boil, yes reader, I know I’m not supposed to touch the cooker, but I was trying to help.

I went to the shops to get some milk and when I got back my wife told me that some cardboard boxes were next to the cooker and had caught fire, luckily my wife noticed before it took hold.

I wrote an article about The United Nations Convention on the Rights of Persons with Disabilities (CRPD) an important tool to fight against the abuses of people living with Dementia.

I continued taking part in Research including Sinage Research , Part 5 -The RADAR Alzheimer’s Research Study. and Technology Research

I was also in Birmingham for my second visit to Woodbrooke for a Dementia Diaries Meet Up


September was a busy month and brought World Alzheimer’s Month and on the 21st, World Alzheimer’s Day

On the 5th of September, The Mental Capacity Amendment Bill reached the committee stage a piece of legislation that could have a major impact on people living with Dementia.

During September I wrote about The Campaign to Ban BPSD , also about it in Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It and Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It .

I attended my second South Yorkshire Dementia Research Advisory Group meeting, was a judge for the dementia Friendly Awards and I was also back at Woodbrooke for the Young Dementia UK conference.

At the end of September I spoke at a Dementia Action Alliance meeting in Sheffield and attended my first Alzheimer’s Society, 3 Nations Work Group meeting as a Steering group Deputy in Manchester.


A busier time than previously and more evidence about how enabling post-diagnosis support could be.

You may say reader, how can you do all these things with a diagnosis of Dementia.

Others certainly do, they question our diagnosis, say things like “you don’t look like you have Dementia” or “that happens to me” but we do not choose to have a diagnosis of Dementia and have our rights abused.

At this time I am able to do these things but they come at a price afterwards. It is both tiring and the fog of Dementia has it’s revenge.



 

Applications Closed 16 October 2018 – Exciting new part time and voluntary vacancies from Young Dementia UK in Sheffield

I live in Sheffield reader and because I am under 65 there has been no post diagnosis support, services assessments or rehabilitation, even over 65 the support is limited.

It is so important to support to support people and their family from the point of diagnosis.

These vacancies provide an exciting opportunity to make a difference.


Exciting new vacancies – Group Coordinator & volunteers, Sheffield

In response to the inadequate support for people with young onset dementia in most areas of the UK, YoungDementia UK is developing a programme of national initiatives including piloting local service opportunities.  There are approximately 150 younger people living in Sheffield with dementia and 100s more family members providing support.

We are currently recruiting a part-time Group Coordinator to work for us 8 hours a month who will develop, market and coordinate a peer support group for people living with young onset dementia and their family members in Sheffield.  The group will offer opportunities for people to meet, share experiences and socialise.

Applicants should have prior experience in developing and facilitating groups as well as excellent organisational and communication skills.

Download Job Description  |  Application form  |  Diversity form

Deadline for applications is 16 October 2018.  Please note we do not accept CVs.
Completed applications should be sent to donnachadwick@youngdementiauk.org 

We are also looking for three volunteers to support the Group Coordinator.  

Download Volunteer Application form

If you would like further information about these vacancies please contact Donna Chadwick, National Development Manager – donnachadwick@youngdementiauk.org



 

Coping Strategies – Self Esteem

This is the fourth of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

One important part of any coping strategy is to maintain the persons self esteem through their appearance and finding simpler ways of doing things.

Hair Washing – This can be seem claustrophobic, frightening, or recall the memory of childhood bath time or other event. There are shower caps and no rinse hair shampoo’s available like the one I use

HairShampoo

Liquid Soap – These may be easier for some to use.

Roll on Deodorant – These may be safer than aerosol versions

Bed Rail – One part goes under the mattress and gives the person something to hold onto as they get in and out of bed

Bed Rail

Leg Lifter – A simple device helps getting legs into bed or even a car that the person can do themselves if able

LegLifter

Grabber – If the person drops something on the floor they may be able to pick it up themselves

Grabber

Hair – A Hairdresser/Barber is essential, you may find a mobile one locally or the person may prefer to still go to the one they have used for years if appropriate.

Signs – Putting signs on doors to show what is in the room. Signs for toilet’s can be important as the person may get embarrassed asking where the toilet is.

ToiletSign

Raised Toilet Seat – For safety and also helps if they struggle getting on or off or they need help.

Raised ToiletSeat

I am not paid or induced in any way to mention any products.

Coping Strategies – In the Kitchen

This is the third of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that my suggestions may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

In the Kitchen it is all about safety and enablement.

Cooker – I cannot use the oven or hob as I wander off and forget that there is something cooking or turn the gas on without lighting it.

Microwave – For now I am able to get a meal out of the freezer when my wife is at work and put it in the microwave.

Electric Steamer- using an electric steamer with a timer, I cannot cut up veg but I can put them in the steamer.

ElectricSteamer

Slow Cooker – Good for doing many things including joints of beef.

SlowCooker

The steamer and slow cooker combined, enable me to take part in cooking a Sunday lunch, my wife prepares the veg, does roast potatoes, carving meat and Yorkshire puds but I can do the rest.

Cleaning Products – In the future my wife may have to move all cleaning products or put a lock on the door,  in case I confuse them with something to eat or drink.

Sharp Knives – I cannot use sharp knives, I cannot use them properly any more and previously I have tried to cut things with the blade upwards.

Ceramic Knives – You can get ceramic knives and they can be quite sharp. I’m not sure whether everyone would be happy using them, some might feel they are being treated like a child (remember reader, we don’t always think logically, we may have gone back to our childhood etc), my personal choice, thinking forward, is that it is safer for me not to use any sharp knives.

Perching Stool – As time goes on I may need a perching stool in the kitchen to enable me to continue to help in the kitchen, even if it’s just doing the washing up.

PerchingStool

Adapted Cutlery – In the future I may need adapted cutlery, not just for eating meals but to enable me to do simple things like make a cup of coffee whilst I am still able to do so.

Adapted Cutlery

Whiteboard – We have a whiteboard on the fridge door, for messages, reminders, shopping lists etc.

Cupboards – In the future, I may need photographs on cupboard doors to show what is in the cupboard.

With small changes a person with Dementia can still be empowered to be safely involved in the kitchen.

Next time, I will write about Self Esteem

I am not paid or induced in any way to mention any products.

Coping Strategies – Going Out

This is the second of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

Going out the house can present numerous challenges. I use technology to try and overcome some of it.

Technology

Microsoft One Note – I use this when I am going somewhere. I set up a page like this:

The Light Cinema

9, 24 The Moor, Sheffield S1 4PF. Phone: 0114 213 4531

TheLightCinema03

The Light Sheffield

TheLightCinema02

I then have the name, address, telephone number, a mini map and pictures of where I am going.

In the future as my Dementia becomes more challenging, my wife can use this app to show me where we are going maybe adding a picture of inside.

The Light Sheffield 0

Google Maps – The first time I went to the Dementia Cafe in Hillsborough, I got lost and wandered off in the wrong direction. I was off the mini map I had in “One Note” so I opened the Google Maps app which has GPS tracking on it and was able to find my way back.

Find Friends – (Phone only) It enables my wife to know where I am at all times and if I were to get lost, she would be able to hopefully guide me back or direct someone to find me. I know someone who is a long distance carer, who feels this will give them some reassurance.

Taxi App – (Phone only) The app enables me to pre-programme addresses and a debit card in it so for instance their is my home address in it, so if I got lost, could remember the app was there and could remember how to use it, I could find my way home that way.

Headphones – I have noise reducing headphones to off set things like traffic noise, voices etc. When I travelled to York, it could be disorientating/confusing navigating my way through the station, negotiating my way round people and contending with the noise from trains, tannoys and people talking. Busses can also be challenging along with the main road near where I live.

Other

Shoe Laces – In her blog today, Wendy Mitchel writes about a simple solution to tying shoe laces

Next time, I will write about In the Kitchen

I am not paid or induced in any way to mention any products.

Coping Strategies – Day to Day

This is the first of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

Technology

Memory Clock – I have a Memory Clock which doesn’t just tell the time as you can see below:

DementiaClock

It also has alarms with preset labels including Meals, Medication and appointments.

Phone, PC and Tablet  All have access to the same apps and they all work basically the same.

Most days I find it easier to put in new information via my PC, even though that can be challenging but the bigger buttons on the keyboard help. Some of the apps are:

Calendar – The Calendar app is where I put reminders:

for Birthdays/Anniversaries

to take my medication (I set this half an hour after the alarm on my Memory Clock)

to have meals (I set this half an hour after the alarm on my Memory Clock)

for appointments

when I’m expecting a phone call

and for anything else I may need reminding of.

Smart Watch – I have a cheaper version of a FitBit which apart from the time, tells me how many steps I have done, monitors my Heart Rate and my sleep and which links to an app on my phone.

Social Media – previous readers of my blog will know the importance of social media to me climbing out of the metaphoric dark hole my diagnosis put me in. To begin with, I made new friends and got a lot of support, now hopefully I am able to support others and raise awareness.

Shopping – There are many online shops and supermarkets and whilst maybe you should always try to get out to the shops you may not be able. The shopping, supermarket apps could also be useful for long distance carers as most allow alternative delivery addresses.

Busses – Companies like Stagecoach have an app where as long as you are near your bus route you can see where the next bus is.

Long Distance – Ordering ready meals through an online supermarket can be cheaper than using the companies that Hospitals recommend.

Presents – Places like Amazon will gift wrap a present so if you can’t travel for someones birthday, they will wrap it for you with a message for an extra charge.

Other apps – Banks, eMail, News, Text Messaging etc that can put most of what you need in one place.

Other

Front/Back Door – Fit Door alarm, chain and put up a curtain to cover the doors at night.

Night Light –  Plug a night light into plug sockets at top and bottom of stairs, there are LED ones that switch on when it starts to get dark and turns off at dawn automatically.

Calendar – Have a calendar on the wall with appointments/things you have planned.

Audiobooks – The person may no longer be able to read a book but may enjoy audiobooks.

Music – Even if the person cannot express a wish to listen to music, you may get a positive response when they do and can also improve mood.

TV/Films – Watching old TV programmes and Films can be a pleasurable experience for the person with Dementia.

Noise – Try to keep TV/Music volume a little lower unless the person has a hearing deficit, loud noises can be a problem.

Memory Book/Wall –  A memory book with photographs and newspaper cuttings can be a valuable reminiscence tool, as can having photographs on the wall. With a memory book you can put names, dates and how they are related, plus a little about the photograph if room.

Activities – Anything that the person is interested in or you can introduce them to, doesn’t have to be a physical activity.

Support Groups – Not easy to find but they benefit the person and their carer/family.

Carers – Make time for yourself, you need time away from the persons Dementia.

Involve family and accept help – No shame in this, does not mean you are a failure.

Next time, I will write about going out.

I am not paid or induced in any way to mention any products.

 

 

 

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.

“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.