Category: 2018

Moving Into the light

Things began to change ion the first half of 2018

and then in July I started to Leave the Dark Hole behind

Back to Woodbrooke for the Young Dementia UK Conference

In  october I was on an interview panel for a new part time and voluntary vacancies from Young Dementia UK in Sheffield

which has led to the setting up of a new Young Onset Dementia Support Group in Sheffield.

In October I wrote a letter for a\ website in Italy Una lettera a Eloisa Stella e al popolo italiano

and spent A Day at the Royal College of Psychiatrists

followed by a day in London for a Forum for the Long Term NHS Plan

My participation in research continued with “The Twitter Use of People Living with Dementia” Study – Part 2

Part 6 -The RADAR Alzheimer’s Research Study. 

and a Health-Related Internet Use by Individuals with Young Onset Dementia – A Qualitative Study

At the end of November I was at the UK Dementia Congress 2018

followed by the Trent Dementia – Life with Dementia Conference

and the Modelling Dementia Conference

Also in December my local Memory Cafe announced New Funding and Increased Services at the Parson Cross Forum in Sheffield

I also spent a day at the first DfID/BOND Partnership Forum in London, following being a delegate at the Global Disability Summit in July 2018 and I then went to Brussels for 4 days to attend a European Commission Conference on Cross Border Vulnerable Adults, both of which I have still to write articles on.

One of the new challenges I increasingly faced was issues with noise and you can read about it here

All in all, a busy 3 months and over Christmas the spectre of fatigue and tiredness was becoming a new challenge in 2019.


Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write these articles to hopefully enable some who follow, receiving their diagnosis.



 

The Journey Continues…

After the first 4 years of my journey with Dementia began in 2014, 2018 marked the beginning of change in my journey with Dementia.

As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities

By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself.

By the end of June, I had climbed out of the metaphorical Dark Hole  and begun to climb out of the black hole behind.


Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write these articles to hopefully enable some who follow, receiving their diagnosis.



 

Announcement – New Age UK Dementia Group Sessions starting 13 Nov 2018

A ground-breaking new concept in dementia support is being brought to Sheffield by Age UK.

The sessions have been developed by University College London psychologist, Dr Aimee Spector. They use an evidence-based Cognitive Stimulation Therapy approach which has been found to improve confidence and wellbeing for people with mild to moderate dementia.

Age UK Sheffield will be introducing the sessions starting in November. They will be delivered during evening periods, responding to feedback from carers that they have no regular respite opportunities outside of usual working hours.

Age UK Sheffield Chief Executive, Steve Chu, said: “We are delighted to be bringing this innovation to Sheffield and we’re now taking expressions of interest from people living with dementia and their carers. Our existing Wellbeing Centre for people living with dementia gets amazing feedback for its day centre provision and we are proud to be one of only a handful of local Age UKs who have been chosen to deliver these groups.”

For more details, or to register an expression of interest now, call (0114) 250 2850 or e-mail: enquiries@ageuksheffield.org.uk

Image may contain: 2 people, text

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.