Reflecting on my year as a Dementia Advocate 2014

Dementia friends Champion Training :

After my diagnosis we knew nothing about dementia, We thought how many people knew nothing also. We wanted to do something as regards dementia awareness, we heard about Dementia Friends Champions.
So we went to have a look at what they were offering, it really surprised me. It was a great info session expelling some of the myths and giving a bit of insight into what Dementia is.
It asks to turn understanding into an action no matter how big or small.
I now wear my badge with pride and use it to start conversations about what the word ‘Dementia’ really means.
Jayne and I have completed many sessions of our own now and have made over 300 dementia friends across the UK.
At the Champion training we attended is where we first met Peter Ashley, another dementia advocate and now a good friend.

Dementia Friends Launch in Wales :

We were asked to attend and speak at the Launch at the Millennium Centre, Cardiff, S.Wales on behalf of The Alzheimer’s Society.
We were very proud to be asked to do this as the Society have been a big help to us, we appeared on stage with Sue Phelps, director for Alzheimer’s Society, WALES and actress Ruth Jones.
I spoke about the importance of the initiative coming to WALES and the importance of understanding Dementia.
Sue Phelps read out on of my poems and did it proud, it was well received.

NHS Expo, Manchester :

We did a Dementia Friends Session with one of the hosts and then took part and spoke on behalf of Gill Phillips of ‘whose Shoes’.
We also met up with the great Tommy Whitelaw ( tommyontour) and the lovely campaigner and blogger Beth Britton.

Wrexham Dementia Awareness Event, N.Wales

Ian Lucas MP and his wife arranged an awareness event in the Guildhall; local businesses, Councillors and some of the Services were invited.
I did a talk along side two good friends of ours, Anita Moran and Chris Hodge ( who are both PA ambassadors) to those present, explaining about dementia and the need for more awareness to reduce stigma and give more support to folk with dementia.

Sheffield, England, Dementia Arts Exhibition :

Held every year in the University, art, poetry and models by anyone that has dementia is put on display. I was asked to bring some of my poetry along by the lovely Natasha Wilson, who a lot of you know on Twitter.
It was a great honour to show my poetry there along side some really talented and great work by pwd.

Dementia Friendly Communities conference, Leeds :

This conference was supported by DEEP, Dementia Engagement and Empowerment Project, They bring together groups of people with dementia from across the UK, they then support these groups to try to change services and policies that affect the lives of people with dementia.
They offered Jayne and I a free place at the conference and funded our expenses.
Because of them, 5% of attendees there, had a diagnosis of dementia and had a voice and a story to tell, I listened intently and was inspired.
I made my mind up what I now wanted to do. I also, I wanted to share my story and be an advocate for dementia, I realised that I too had a voice ! Thank you very much Steve Milton and Rachael Litherland for supporting me with my advocacy.
It was also the launch of ‘Dear Dementia’ a fantastic little book by
Ian Donaghy, our thanks to Ian for including us in his book.

The Alzheimer’s Show, Manchester :

This is where we supported Carers Call To Action,who Support the needs and rights for family carers of people with dementia through a shared vision.
We were honoured and humbled to support such a worthy cause, we spoke about our experiences, what support we all, carers and diagnosed, require and how the CCA are helping us to achieve this aim.
Thank you for looking after us so well, Rachel and Louise xx
We met, for the first time and spoke with, my Twitter friend Tommy Dunne and his lovely wife Joyce. Later we all listened to ‘meet the author’ Shibley Rahman, who was also a great friend from social media, talking about his book ‘Living Well With Dementia’. We all had a coffee with Natasha Wilson and Anna Tatton.
Thank you to Nigel Ward for a great show.

The Big Meet Up, Colwyn Bay, Conwy, N.Wales :

Pam Luckock, who actually lives down the road from us, (small world!) and Fran Ohara got in touch for us to speak at their big meet up.
It was full of professionals and service users (or citizens as they were called there) to ‘ join ‘ us up and get people talking to each other, sharing experiences to make services better for everyone, great day, met some lovely people.

Denbighshire County Council EMH Project workers Strategy Meeting :

We were asked to attend their meeting to give our views on the services that they provide and asked us to let them know how they could be better !
Our county is a bit of a success story where services are concerned and here is my chance to take my hat off to them !
Thank you Denbighshire !
Since talking to them and with their and our help, we have a new social group meeting, (in a pub of course like grown ups ! ) on a bus route, with a new one starting soon at the other end of the County very soon, a Cinema group and coming in the new year, A ‘mobile Memory Cafe’ joining up Rural areas and getting isolated people and carers together, something I’m very proud of instigating after a round table workshop discussion in the CCA conference !

The Halton General Hospital, Warrington :

We were asked to view and give some input to their brand new showcase Acute dementia Ward with my great friend Tommy Whitelaw !
what an honour !
It was amazing and Lee Bushell, the Estate manager, had done fabulous job !
Using colour schemes and lots of common sense, and the staff being given ‘permission to act’ it’s one of the best wards in the UK, Our thanks to Karen Dawber, Mel Pickup, the other Board members, and of course Lee for a great visit.
Also our great thanks to the Board of Governors for inviting us to host a Dementia a Friends Session for them.

Peer Reviewer Training, MSNAP, London :
(Memory Services National Accreditation Program)

My friend, Beth Britton gave me the heads up that MSNAP were looking for
PwD and their caregiver/spouse, relative to train as peer reviewers for the accreditation of Memory Clinics in the UK.
An excellent day, thank you Sophie and Emma, a great pleasure to see lots of other PwD attending too, a great turnout ! And nice to meet a new friend Chris Norris.

‘To whom I may concern ‘Online Program :

To Whom I May Concern (TWIMC) is an interactive theater program designed to give voice to people who have recently been diagnosed with a progressive brain illness such as Alzheimer’s disease. Using their own words and scripting, these individuals share their stories and experiences.
Thank you to Maureen, Laura and Stephen for giving us a voice and my great thanks to my friends David, Syvia, Teresa and Charee for sharing your experiences and lives with me.
This production can be seen on you tube.

Dementia Alliance International.org :

“Nothing about Us without Us” and “Of, for, and by people with Dementia” an international group of PwD who have got together and made their own group, promoting a world where a person with dementia continues to be fully valued, to build a global community of people with dementia that collaborates inclusively to:
1:Provide support and encouragement to people with dementia to live well with dementia.
2:Model to other people with dementia and the wider community what living well and living with purpose with dementia looks like.
3:Advocate for people with dementia, and build the capacity of people with dementia to advocate for themselves and others living with the disease.
4:Reduce the stigma, isolation and discrimination of dementia, and enforce the human rights of people with dementia around the world.
I have made some great friends for life in this group, Kate Swaffer, John Sandblom, Susan Suchan and Truthful Kindness amongst the many.
It was my great honour when I was asked to become and accepted to be,
a Board Member in the Summer.

Dementia Mentors .com :

A real pleasure to be a contributor to the site designed and run by Gary LeBlanc and Harry Urban, an excellent site with a great video section where PwD put up videos to help others, and where a mentoring service is available. I have the honour of hosting one of their online virtual cafes.

Young Dementia Uk Conference, Oxford :

YDUK are a national source of young onset dementia information and are always happy to promote other organisation’s news and events.
They have a full events listing of both national YDUK events and regular social events in Oxfordshire.
They are a huge voice and supporter of young onset dementia.
They provide some great services of their own too.
So it was an honour when Kate Fallows asked me to come speak for them, it was a great conference where I met up with old friend Ken Howard and some other friends, new and old, thanks to all involved for a great day.

Carers Call to Action Conference, Government House, London :

Always an honour to support CCA and the DAA, it was at this workshop we came up with the Mobile Memory Bus ! A great conference, always good to hear Alistair Burns, Clinical lead for Dementia in England talk.
A great varied conference where they had, including ourselves, an array of speakers with personal experiences, well done CCA !
Thanks to Our fiend Shibley for coming to support us and thanks to Louise, Peter,and Rachael for looking after us. It was great to meet Suzy Webster too, a great lady x

Alzheimer’s Society Annual conference, cardiff, S.Wales :

Our pleasure to speak for the society ( I am also an media volunteer for them) about the importance of Dementia Friendly Communities.
Lovely to catch up with Sue Phelps and Jenna, and to meet Jeremy Hughes CEO.
Thanks to Helen For looking after us.
The talk from us both was very well received and it was great to hear of all the fantastic things that are going on in Wales.

Alzheimer’s Europe Conference, Glasgow, Scotland :

Our big thanks to Life Changes Trust for their help in attending this major conference and for looking after us, we couldn’t have attended without you.
What can I say ! An excellent conference, 44 PwD dementia in attendance, meeting Helga Rohra and Agnes houston were our highlight, they both work so hard. Great to meet Peter Gordon too, a mutual friend of Shibley and mine from Twitter, along with lots of others old and new.
Our thanks to all the other great people we met, it certainly was a friendly conference and very informative.

‘Week in Week out ‘ program for BBC WALES :

Our thanks to the BBC and their Producer Tim Jones who put my mind at rest about the program and did an excellent job with it giving folk an insight into living with Dementia. Thanks also to the Alzheimer’s Society for recommending us, thank you to all of the nice people who got in touch afterwards.

Alzheimer’s Brace Research Conference, Bristol :

” A Hope for the Future” was the title of the conference, a very successful and well attended day conference hosted by Martyn Lewis.
We were invited to appear on a panel with Beth Britton to give some insight into dementia and discuss the importance of research.
Our thanks to Beth, Martyn Lewis and Mark Poarch the organiser.

WALES audit office Conference, Cardiff :

A conference and workshop bringing together service users and professionals. It was a real honour to hear the other side of service production and planning.
We gained a lot from working face to face with senior leaders from all over Wales and that they too gained an insight into how we access their services and where they can improve the services they offer.We did some filming for this which was used to promote discussion, later I was asked to come on stage and spoke to the conference to finish a very interesting day.
Our thanks to Mark Woods for his great help with the filming and to
Laura Young for looking after us on the day so well.

The UK Dementia Congress, Brighton :

The UK Dementia Congress, took place at the HILTON BRIGHTON METROPOLE, The conference covered areas like Evidence-Based Practice And Innovation, As Well As a Full Discussions Of Obstacles, Problems And Pitfalls.
DEEP groups made a huge contribution at their venue, DEEP joined together with the Carers Call To Action to lead the opening plenary session of the conference. Members of both networks talked about their experiences of dementia and what they needed from the audience. A film ‘Make a point about dementia’ enabled many more people with dementia and family carers to have their voices heard by the whole conference.
The members who spoke were Suzy Webster, Keith Oliver, Tommy and Joyce Dunne and ourselves, “you lot” as Norman Lamb spoke about us.
I later spoke about dementia as a disability and how our rights as such are not being met in a DEEP workshop.
It was an excellent conference, our thanks to the two Rachael’s, Louise and Peter Watson. Also thanks to Richard Hawker publications and all his staff.

Dementia Action Alliance UK, Central Hall Westminster, London :

Organisations who are committed to transforming the lives of people with dementia and their carers.
The Dementia Action Alliance is a movement with one simple aim: to bring about a society-wide response to dementia. It encourages and supports communities and organisations to take practical actions to enable people to live well with dementia and reduce the risk of costly crisis intervention.
It was an honour for us both to speak and close a very informative conference. It was very emotional at the end when we had a standing ovation.
Great to catch up with friends such as Shibley Rahman, Keith Oliver, Chris Norris and Peter Ashley. It was good to finally meet Ken Clasper who actually gave me a lot of inspiration early in my diagnosis.
Our thanks to Sarah Tilsed for looking after us.

Our upmost thanks to all the great folk I’ve met this year, virtual and real ! Very sorry if I’ve forgotten to mention anyone above that maybe I should have.
Thank you to all the people that have listened to our story and hope changes might be made because of it.
A big thanks to all the people that have attended our Dementia friends sessions ( nearly 300 of you)
Last but not least, thanks to Dr.Shibley Rahman and Ian Donaghy for including us in their books.
‘ Living Better with Dementia’ and ‘Dear Dementia’
Thank you to all that have helped and supported us throughout the year.

Talking about your diagnosis to your family and friends

Dealing with your diagnosis is hard – not just for you but also for those around you. When a person is diagnosed with dementia it falls on the whole family, even touching friends.
it may feel be easier not to talk about it. But talking about it can also help the way you feel about things. It’s the old saying, sharing is caring and if you want or need support there has to be a level of understanding.
A diagnosis of dementia often comes as a shock or sometimes even relief just because you now have a label, you now know why you are having problems.
Even if you have been half expecting the diagnosis it can still be a worrying and upsetting time. It will also be hard for those close to you, maybe even harder, This is the time to collect all the facts and info you can, give all of your family a scrap of paper to write down any questions that they might have, organise a group or family meeting.
You will still or should, want to remain as independent as you can for as long as you can. You will need a certain amount of help and support as the dementia progresses, so you need to make your wishes know and it is important to make sure that other people don’t take over your life when you can still manage it. Make sure that you are consulted on all matters that concern you. Make your own choices for as long as you can, you still need to feel able to retain your confidence and dignity, by explaining this your family and friends, they won’t overcompensate, which can be very easy to do.
You will need to discuss plans for the future with those who are close to you and with certain professionals.
If your family and friends do not already know about your diagnosis, you really need to tell them sooner better than later, it won’t get easier ! Try to tell them as soon as possible. At first, they may not want to believe you, would you ? I put a status on face book explaining what diagnosis I’d just had and difficulties I might encounter, I got to tell lots of friends almost immediately, email is good too.
If they get upset by the news. Try to be calm, maybe try and pick who you consider to be the calmest person in the family, tell them first and get some one on side as it were !
Try to chat about your own wishes for the future, but don’t ask people to make promises now that may be difficult for them to keep later. A good idea is to write your wishes down.
You may want to talk about end of life care, do so ! It’s very important to discuss this difficult subject. Pick your moment, be light hearted and reassure your family that you are not being morbid, you just want to share your thoughts to make it easier for them when the time comes.
Ask them what are their ideas on some of the stuff you’ve talked about, more minds are better than one, they might come up with thoughts that you haven’t.
It may even help if you can talk about your feelings to someone you trust outside the family, get an unbiased veiw, it can help immensely.
There are some good books out there that can help you explain to your family, you tube has lots of videos that explain dementia very well, stuff like this can only help, the more your family and friends understand the better.
Talking to your children or grandchildren may seem a more daunting, but you do need to explain what is going on in your life.
They may worry less once they understand what the problem is, which is all the more reason to have a discussion, it may help you clear things in your own mind too. Try to be honest, although they may find the news quite sad, they need to know that any changes you might experience are likely to be because of your illness, they may have completely got the wrong end of the stick so to speak, they might also think that it may be something they’ve done wrong, so you speaking and explaining may help more than you know.
A child can often cope better with the truth than most adults.
Children deal with difficult situations remarkably well, as long as they can understand what is going on and as long as they have your support, and support from other adults around them.
As I’ve said just be as honest as you can but don’t dwell to much on anything distressing and allow your children or grandchildren to ask as many questions as you can.
Children from the age of eight or nine can understand very difficult concepts, more than you’d sometimes give them credit for, I know mine did. They may ask very difficult questions but encourage them to do so, if they are talking or asking, keep communication open, listen to what they say, and try to answer them truthfully, If you don’t know what to say or can’t answer, just tell them you aren’t sure but you’ll find out and get back to them, but please do so, children don’t have bad memories 😊.
You may have to watch that their school work doesn’t suffer, concentration may suffer, so a good idea is to keep in contact with their teacher, so as you see, this need to know basis is getting bigger !
Sometimes a child will try to hide their feelings. They may have bad dreams or behave badly, these could be ways of coping and they maybe need a bit more support so just try to keep chatting, always ask if they have questions.
I’ve said or mentioned children a lot but with a bit of common sense most of what I’ve said can apply to teenagers, my 16 year old, once educated in what way my illness might limit me, never once ever told me again that I was repeating what I said, which really helped me, I personally don’t want reminding.
It’s things like this that can help you personally, because it is so individual, things need to be said, so that with understanding will come an action or reaction. Grief,sadness, loss, anger, irritation and impatience are also common reactions for anyone, adults and children.
But one has to remember that younger people or children maybe less skilled than adults at coping with these emotions. Try not to be upset if anyone in your life shows these emotions, it’s only going to cause upset to everyone otherwise, easier said than done, I know only to well.
Older children, in particular, may appear not to react at all. This may be because of embarrassment, or because they just don’t want to upset anyone. Just try to encourage them to talk, this will help them.
But never force the issue, some people just need more time, as will yourself sometimes. Everyone will need time to come to terms with new difficulties.
Don’t be afraid to use humour. We use humour a lot in our house, it really helps and costs nothing. Dementia can seem a very bleak and unfunny prospect but humour can keep many people going, we speak a lot about what Mr.Alz has done in our house.
By simply talking about dementia to your family, friends, neighbours and colleagues, you can help more people become aware of it and understand the condition. I know that when I was diagnosed, none of my my family understood it, so the wife and I are now big advocates for awareness, giving dementia a voice !
It also helps dispel common myths and misconceptions, for example, many people think dementia is a natural part of growing old, that it’s all about memory loss, most have heard of dementia but don’t really understand at all.
So with continued support and understanding from family, friends and various support services, people with dementia can have a full, rewarding and productive life. You don’t suddenly become in later stages, there is a beginning and middle to the illness too.
There is much that you can do in the early stages that will help make life easier and more enjoyable, for now and in the future.
I’m not saying any of this will be easy, we’ve had many ups and downs regarding family and friends, we’ve shed tears and still do, it’s a big learning curve for everyone !
Some friends have fallen by the roadside, but most I don’t see because I don’t visit them either, out of sight out of mind ! So don’t blame the illness on everything, but enough, I think living well with dementia is a story of it’s own.
So please have that talk with your family and friends,
the sooner the better ! 😊

Becoming a Dementia advocate

Here is something I wrote for my good friend Thomas Whitelaw, tommy-on-tour-2011.blogspot.com

When you get diagnosed with an illness that will lead to dementia your whole world gets turned upside down, after medication has been discussed, power of attorney put in place, wills made or remade, you suddenly realise you have so many questions,but the time you had to ask has been and gone.
Your whole family is affected, relationships become strained, the whole family share the diagnosis.
It’s so hard to explain how you feel, what’s going and more important what isn’t going on ! You can start to feel so alone, it almost becomes us and them !
There is lots of information out there if you look hard enough, lots of support for folk helping to care and help you, if, again you look hard enough.
I and my wife became very involved in dementia awareness and promoting education and understanding because for a really well known word, everyone has heard of dementia, we couldn’t believe how little most folk know about.
We became dementiafriends.orgDementia Friends Champions, we do it together as a pair, as a couple because that’s what we are, a team ! Especially since I don’t drive of cross roads very well on my own any more, but as a team my wife helps me to give the 45min session, we’ve yet to see folk that attend not being interested.
But I still thought yes there is room for more help for the person living with dementia, I then came across two Americans on the internet, Harry Urban, who has Alzheimer’s and Gary LeBlanc, who cared for his father.
They were thinking just the same and came up with a website aimed at folk with dementia, dementiamentors.commade the whole site very user friendly, in fact it’s excellent.
They recruited a few folk that had various illnesses that came under the dementia umbrella and asked us to make small 3min video’s on subjects that might of help to others. These are shown for a month then archived, then different ones are shown. The knock on effect is that one day you can feel quite useless, then make a video that helps others and you get your confidence back, you are now making a difference.
This has now led to three online virtual memory cafés a week using a software called zoom, that is so easy to use, and you’ve then got people from all walks of life, from lots of different countries chatting and helping each other, all of a sudden you are not alone any more.
This website, which was aimed at diagnosed, is also a great source of insight for all, family members, professionals and cafe staff etc, it helps one to understand what is going on in our lives, bug the biggest message is ‘ you can live well ‘ or at better with the right support , you get that support with understanding.
folk only think of the late stages, well there is also a beginning and middle !
Please vist dementiamentors.comand if you have dementia, please get involved, you aren’t alone

My carer ? My driver, my partner, my child !

Since my illness has come galloping into our lives, we’ve had to adjust, adapt and organise our lives so much ! From white boards to digital clocks that tell me what day it is, but that’s just objects and subtle changes.
It’s the other major things,
things that others who aren’t involved in my day to day life won’t or can’t see.
It starts in the morning, I wake up and sometimes can’t remember what comes next, i lie there racking my brain, trying to remember, sometimes I shout my wife and she has to explain and hint about getting up, gentle reminders to shower, to dress, to put on clean clothes.
Otherwise without these reminders I wouldn’t remember to shower and dress in clean clothes. I forget to eat, I forget what I’ve actually eaten.
I have to be helped to get dressed sometimes if there are lots of buttons etc. If, when leaving a room and my hands are full with cups, etc or something similar and the door in front of me is shut, I CANT GET OUT ! The first time this happened I just sat down and cried, I actually sobbed ! My wife came in and she cried too. How we must of looked to the outside world, both stood there crying, me with my hands still full .
Watching tv, losing the plot and having to ask and repeat myself until I get bored watching and all the while my patient family just keep answering and helping me. At 53 years old I can’t ever go anywhere on my own ever again, I don’t drive and I can’t cross roads, who has to accompany me, guide me and protect me ? My close family ! I was supposed to protect them, look after them !
But enough about me, it’s my poor family that have stand by and watch their husband, their father, and their grandfather slowly forget, slowly disappear. It shouldn’t be my children’s job to tell me my pants have fallen down cos I haven’t buttoned them up, or remind me I haven’t put my pants on at all. My youngest, aged 16, shouldn’t have to pick me up from a care home, shouldn’t have to stand there and see my future, see what’s to become of me.
My whole family have dementia not just me, they all become unpaid carers, who are on call 24 hrs a day. This can’t be right !
Even when I’ve forgotten, they will remember, they will never forget ! They don’t have that luxury.
Believe the saying ‘ that one mans killer is another mans saviour’ !
The biggest changes, the biggest problems,have all mostly been for my family, I don’t even notice some, because some changes are subtle, but my family do ! My children do, My unpaid carers do ! Every day ! !
We all laugh together and we all cry together, we try to have fun with Mr.dementia, humour is so important, it’s the last thing I’ve got that hasn’t changed.
So for carers week please remember the 1000’s of folk that care, that care 24’hrs a day,
the carers that are so emotionally involved, the carers that cry, the carers that try to laugh, the carers that one doesn’t see and especially the young carers that should never be !
These full time carers and volunteers that never get paid, that never get recognition !
The carers that will never, ever have the luxury of being able to forget !

Diagnosed with vs suffering from dementia

An excellent blog and post by Kate Swaffer, who has dementia herself

Dementia Expert Chris Roberts UKThere has been a lot of noise on social media and other places about the use of the word ‘sufferer’ in the last few weeks when referring to a person with dementia. Last week, I received a reply by someone willing to change the term  to a person diagnosed with dementia, with acceptance and grace. Such a welcome change from most users of this offensive term, respectful and gracious. Interestingly, the people are the most impolite about it, and who refuse to think we actually have no right to be offended by it, when they are not, are journalists and professionals. Not all, for sure, but many. And also family carers, who my husband and I believe are the ones more likely to be suffering than those of us diagnosed with dementia.

So, does ‘I am suffering from… dementia, arthritis, cancer, MS etc sound more negative and less empowering than…

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