Category Archives: Dementia

Eulogy and tributes to Richard Taylor PhD

Remembering Richard Taylor PhD

https://youtu.be/oxT1QWSqdQE

The following notes are of the Eulogy given representing the members of Dementia Alliance, and from the heart of Kate Swaffer, current chair, co-founder and editor of DAI.

Hello.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles (Christopher Reeves)

Richard will continue to be one of my heroes.

I had hoped to write an Obituary to honour Richard, but when I looked up on how to write one, I was directed to all sorts of suggestions, and as I don’t know many of the more personal details of Richards pre dementia life such as birthplace and personal family history which was suggested should be included, I realised the best I could do was to write from my heart.

And so, I decided I would begin with a Haiku version of an Elegy about Richard.

So often, less is more.

Richard

Kind, intelligent
Passionate, real and feisty
Deepest heart and soul

The members of Dementia Alliance International are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer, and we extend our sympathy and condolences to his wife Linda, son Jason and his whole family, and closer friends. We hope you know how much he was loved and will continue to positively influence the dementia community.

As current chair of DAI, it is an honour and privilege to lead DAI, and to represent our members today in remembering and honoring him. I was privileged to work with him, and call him a friend, and was lucky enough to be in attendance at those early breakfast meetings he encouraged ADI to host during their conferences in 2012, 2013, and 2014.

In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”

Richard always began his videos and presentations with: “Hello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer’s type.”

Hello is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, and not on our deficits, and everyone deserves a hello.

Richard was inspirational, and his influence was significant on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those people that care for us, paid and unpaid, around the world.

He was a founding member of DAI, and had the dream for this group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.

As current chair, and also a co-founder, I can only hope we will continue to honour Richard appropriately, as individuals, and through our work in this group.

It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community.

Like hundreds even thousands of people around the world I too had a personal friendship with Richard. I first met Richard online late in 2008, having found excerpts of some of his writing via Dr Google. We communicated regularly after that, via email and even before we met, both said we felt like kindred spirits, on the same journey. Richard led the way for me, as he was the first person with dementia who not only spoke up for living beyond the diagnosis of dementia, he also he showed me it was possible.

His writings were the first I had discovered by a person living with dementia, and in many ways I feel his words ‘saved my life’. By that, I mean he saved me from continuing down the very slippery slope of doom and gloom of dementia, the pathway the medical doctors, health care and service providers also send you upon diagnosis. I had not heard of anyone living so well with dementia, and although I was referred to other books and writing, we were we basically told it is not possible to live beyond the diagnosis of dementia, and these other books whilst very helpful, did not really teach me it was possible.

Richard Taylor taught me that.

Mr Google had become my friend, and back when I was first diagnosed, there was very little being written by people with dementia available online or anywhere, and certainly not about living well with it.

Richard Taylor inspired me not to continue on the downward spiral of Mr Dementia with grace, and with determination to fight for my life and the human rights of all of us facing a diagnosis of dementia, but also to learn to ‘live’ in spite of dementia, and indeed beyond the diagnosis. Richards’s writings were the catalyst for me to start to write about my own experience, and ultimately to find meaning on this wild ride, and his support and friendship kept me going when the ride seemed too rough.

Reading excerpts of his writings was like reading my own story. He helped me find the words to express my own experience. He encouraged me to write, as a way of healing, and of making sense of dementia. He also showed me the way in teaching others, and although I was already standing up and speaking out, Richard kept me going on the days I wanted to give up. He inspired, motivated, and loved us all, and I feel quite sure loved us all as much as we loved him.

Before I met Richard in person, we often said we were kindred spirits. I know he has said that, and felt that with so many. But for me, meeting in person sealed that between us. He was a man of the people, and always opened his arms and heart to us all, without concern for any personal cost to him.

We all loved him, and will miss him greatly.

Just like Richard, finding a cure for any of the dementias has never been my priority. Research into improving the lives of the more than 46.8 million people already diagnosed with dementia is to me, equally important as a cure.

The big Pharmaceutical companies have almost total control of the research industry, and also many of the advocacy organisations, and there really is big money in dementia, which is not always helpful to those of us already diagnosed.

As with any critical illness, and I know we agreed strongly on this point, and we both spoke up for research into improving the care and outcomes for people already diagnosed with dementia.

We must never forget the people who are living with dementia NOW, currently almost 47 million of us.

Our needs are just as important as the need to find a cure, and research into living beyond the diagnosis of dementia, and interventions such as lifestyle strategies, non-pharmacological and positive psychosocial interventions and care and support that focuses on improving quality of life are equally important.

Helping people in the future must not be at the cost of the needs of those of us living with dementia today.

Thank you Richard Taylor.  We sincerely hope your family and very close friends get some idea today of the sense of love we all felt for you, and get some comfort in that. Our sympathy and sincere condolences go out to them, and to each other.

Finally, many have asked is who will take Richard’s place in this fight for equality, and who will be the voice for people with dementia?

I am one person who will do that.

Everyone here today will, I am sure, also fight for equality, autonomy and inclusion. People with dementia, and people without dementia, will do this.

Just like Richard did, Dementia Alliance International wishes to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!

And I feel very confident there are literally hundreds or thousands of others living with dementia, or caring for people with dementia, who have accepted this call to action, that he so genuinely and proudly began after his own diagnosis of dementia, probably of the Alzheimer’s type.

Together, we can and will change the world for people with dementia.

DAI Member, Leo White made a poignand and personal tribute,  ending with reading this famous and apt poem by John Donne

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Tributes from members and friends who were unable to attend the online memorial:

To begin, I am starting out with a tribute by a dear friend or Richards, Bettina Hackel from Switzerland, who attended the online tribute, but for reasons unknown, missed out  on the chance to participate. Our very sincere apologies Tina, we know how much you loved Richard. Tina posted this on her Facebook page yesterday, and with permission, we are adding it her.

Bettina (Tina) Hackel, Switzerland

THIS IS MY TRIBUTE to yesterday’s Meeting HONORING RICHARD TAYLOR.

For some unknown reasons Gmail refused to send my replies to DAI, so I didn’t make it to Kate’s list. Thank you, Kate, for this wonderful meeting; I could have listened to stories about Richard all through the night!

Hello,

My name is Bettina, from Switzerland. I lived in Florida for ten years with my late husband Alex, who was diagnosed with dementia. I cared for him at home, supported by wonderful and informed Florida folks.

Back in Switzerland I felt miserable. No one wanted to hear from Alex, his dementia, our experiences in Florida.

“Now leave Alzheimer’s behind! Start a whole new life!” so I was told.

In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor – and there it was, my whole new life!

Richard in his empathetic ways pulled me out of my dark hole.

I found the automated German translations on his website, including his archived Newsletters, bad, even useless. So I offered Richard to translate them for him, and his assistant would publish them in German. This didn’t work very well, and sometimes Richard had no assistant.

So Richard decided to introduce me to the service he used to manage his Newsletters. But first he wanted to know much more about me. He wanted us to work together as friends. There was my new purpose in life!

After a year of communicating online, Richard appeared on my laptop screen with a broad smile:

“Surprise, surprise!” he announced, “we’re coming to Berne! I’ll have a few days, we can meet and spend time together!”

So we did. On our first day we made a roundtrip to the lake of Geneva and through alpine regions. On a stop Richard bought himself a large bottle of Coke.

How did I feel in Richard’s presence for a whole day, as a guide, an admirer and friend to be …

Nervous I was, overwhelmed and happy all at the same time. I felt, Richard was scanning me, highly present and focused.

Richard opened his bottle of Coke and took a good sip.

Then he offered: “Would you like some, too?”

Startled I stammered: “Oh – yes – thanks – but – the whole bottle?!”

“Well, I hope not!” Richard replied with an amused smile.

So I took the bottle and got a sip and passed it back – and Richard calmly gave it to me again – until the bottle was empty. It was a ritual. YES! Now we were friends!

When Richard was back from Europe, I got an email: “YES! I’ll call you today!”

He taught me how to edit and publish the Newsletter, both in English and in German. Sometimes there was an assistant in his office, sometimes not.

When we were alone, we enjoyed to tell each other stories, to talk about our dogs, share experiences and dive into philosophical issues … these were peak moments.

Richard asked me to write a column in his Newsletter. He used Skype when he was on the road to introduce me to friends, and invited me to join online meetings and webinars.

Richard wanted me to become an activist for and with German language people with dementia.

Thank you, Richard!

Tina

Dr Jennifer Bute, FRCGP, UK

I read Richards book ‘Alzheimer’s from the Inside out’ soon after my diagnosis at a time when I read all the books available on the subject and his was the only one that inspired me. Most of the others were unutterably depressing beyond words I was also inspired that he used his past skills to learn from his daily frustrations and communicate them in a way that was familiar other in order to help and inspire others. This was a real inspiration to me to do the same thing with my past training medical experience and teaching skills. I shall be ever grateful to him.

I remember reading in his book about one incident where his family had completely misunderstood something he said. They certainly loved him dearly but they had completely missed the point. I was struck in such a way that I have never forgotten. We must not assume others understand what we are saying even it is obvious and makes perfect sense to us. it is the misunderstanding of what we say that they are rejecting not us!

I first met Richard 3 years ago in London at the ADI conference when he Kate and I shared the same platform. We became friends and he had the amazing ability to make all his ‘friends’ feel special. He always replied to emails and was always encouraging and interested in what others were doing.

I loved his frustration with the  ‘big pharma’ as he called them and agreed with him,  also in his stance with the charities that were apparently more concerned with a future impossibility of a single cure (whenever was there one cure for cancer?) than in enriching the lives of those already living with dementia

His cancer inevitably caused a dip but he made an amazing recovery for a time, which said a great deal about his attitude and he always continued to care for others and was involved until the end. I last ‘saw’ him in a video message at a meeting  (with Kate) in London when we already knew time was running out.

He was an amazing man and his legacy will certainly live on. Thank you Richard.

Keith OIiver, UK

Kent and Medway dementia Service User; Envoy and Alzheimer’s Society Ambassador

Whilst there is a growing number of people coming forward to express what living with dementia is really like, no one has done so with the eloquence, humility and positive impact which Richard brought to the cause.

In preparing today for a radio interview I was mindful of Richard, and turned as I do from time to time to his remarkable book “Alzheimer’s From the Inside Out”. The book is like the man – inspiring. When I first met Richard at the ADI conference in London in March 2012 we immediately “hit it off”. His comment written to me in his book which I eagerly purchased said it all when he wrote,

“To Keith, we are kindred spirits. It is my honour to meet you. Best wishes on your journey. Thank you for making a friend of me. Richard.” The honour was entirely mine, and it was to Richard I turned when Reinhard Guss and I were setting up the Forget Me Not group in Kent. Richard’s advice then was as always, clear, direct, relevant and thoughtful and extremely helpful.

Richard and I also shared the background of being teachers, he in University and me in Primary/elementary schools. Age of student may have been different but we shared the desire to make a positive difference to those in our care, those who were on a learning journey. Although Dementia brought both our careers to a halt it could never fail to halt this desire, and it is to the world of dementia where his skills were so brilliantly applied.

As I often say, one door closes and one door opens, thank you Richard for helping to prise the door ajar, and then to help push it open wider for those of us with dementia.

Brenda Avadian, USA

Unfortunately, we lost one of the great voices with dementia last month (July 25) –Houston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer’s from the Inside Out.

Freda Collie, UK

‘ Altho’ you, Richard, have never met me, your online friendship, encouragement, support and information, plus your awareness-raising in the community and amongst medics, have helped me and other people with dementia and carers to keep calm and carry on – even tentatively (or confidently) to take up the baton and run for a little way!

Your newsletter and groups, the webinars etc, your humour, even the FB games occasionally, helped to bring that vital human contact here in my very quiet little one-person residence!
Travel in peace. With our thoughts and prayers.

Thankyou!

Freda

Lilia Mendoza, Mexico

I have met Richard through his book Alzheimer from inside out, we found a Mexican Printer to publish his book in Spanish, I had the privilege to review the translation. In that way we were connected. I admire his concepts, wisdom & most of all his sense of humour. He was really some one very, very special. We all with or without dementia are going to miss him enormously, but he showed us the path & we will follow it. Peace to a very special soul!

Kiki Edwards, Nigeria

How do we make the world a better place? We do so just the way Richard did – by infusing empathy into every individual we encounter. Did Richard know how much of an impact he had and continues to have on Nigeria? I know he saw how I religiously re-posted his messages, all of which were in turn re-posted. Words of wisdom, all of them. An insight into his duel with the fiend called Dementia. In his last posts, it was evident he was struggling, but he still managed to put his thoughts across. I waited for comments. None came. I guess everybody was just like me. Lost for words. Then I remembered some of his postings and videos I saw in the past.  People, friends shy away because they don’t know what to say, how to act around people diagnosed. At the end of the day, Richard is still Richard, irrespective of his diagnosis, was his message. I can’t remember my exact comments to his last posts. It was my usual one-liner. I just wanted him to know we were there with him and for him. Then minutes later the comments started flooding in like a deluge! Yes, we all paused, froze, even. We all tried to visualise what he was going through. We all remembered his “teachings”. We all saw him speaking in our head – “I am still Richard”.

Richard Taylor PhD, I, and Nigeria thank you.

Please note: Prior the recording of the online Tribute to Richard Taylor, it was announced that with permission from the family, this would be uploaded for others to view, everyone in attendance was given the opportunity to turn off our cameras.  Richards family has given consent for us to upload it on our YouTube Channel and share it here. Thank you.

Tribute to Richard Taylor PhD

Screen Shot 2015-08-11 at 8.12.22 am

Please join us in remembering Richard, in an online memorial for Dementia Alliance International members and all others who knew him, loved him, or whose lives were impacted by him in some way.

His reach was global, and his legacy will be carried on.

This is YOUR opportunity to share how he changed your life, your experience of living with dementia, or your experience of caring for someone with dementia. We have a very big set of shoes to fill.

Register here…

DATE:
Wednesday, August 19, 2015 (USA, Canada, UK, Europe) and Thursday, August 20, 2015 (Australia, NZ)

GUEST SPEAKERS:
Mr Glenn Rees, AM, Chair, Alzheimer’s Disease International
Dr Al Power, Geriatrician, author, educator
More to be announced.

Richard Taylor PhD was a founding member of Dementia Alliance International, and has been an advocate and global voice for people with dementia for more than ten years. Sadly, Richard passed away at his home on July 25th, due to cancer.

Richard was 58 years old when he was diagnosed with dementia, probably of the Alzheimer’s type. He always began his videos and presentations with: “Hello. My name is Richard, and I have dementia, probably of the Alzheimer’s type.” “Hello” is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, especially that of people with dementia, and not on our deficits.

The members of DAI send their deepest sympathy to his family and close friends, and we hope they know how much he was loved and will continue to positively influence the dementia community.

This Tribute to Richard is your opportunity to remember Richard amongst others who also loved him.

There will be a number of speakers, including Dr Al Power paying their respects to Richard, followed by the opportunity for you to express in your own words (max 2 minutes), the influence Richard had on your life.

Start Time:

North America, UK and Europe: Wednesday, August 19
3:30 p.m. Pacific Time (San Francisco) and Arizona (Phoenix);
3:30 p.m. Mountain Time;
4:30 p.m. Central Time;
5:30 p.m. Eastern Time;
10:30 p.m. in the UK;
11:30 p.m. in Paris and Budapest

Australia, New Zealand, Indonesia, Japan: Wednesday, August 20
7:00 a.m. Adelaide;
7:30 a.m. Brisbane;
4:30 a.m. Jakarta;
9:30 a.m. Auckland;
6:30 a.m. Tokyo

The Tribute to Richard will run for two hours.

Register here…

You will receive an email confirmation that contains instructions on how to join the event.

Please note: Unfortunately, we have had some IT issues with Eventbrite sending out incorrect dates and times to some people, so please, refer to the times listed here.

Dementia is selfish, by Susan Suchan

Screen Shot 2015-12-24 at 11.28.42 amA couple of weeks ago during one of our Thursday weekly online “Richards Thursday Support Group”, I was interested in a comment made by one of our dear members Susan Suchan, about dementia being selfish.

At the time, I asked Susan if she would write about it and she then sent me the article below. I then asked if we could share it, and she replied saying: “Of course, feel free to use it  and I hope it can open a discussion or at least thoughts for others”, giving us permission to publish it on our weekly blog here to our dementia family (DAI members) and supporters.

Thank you Susan.

“I am told by my children and my family, how giving and generous a woman and mother I have always been. I am flattered and mystified. I now search my heart and soul for what that looked like.

I have been unemployed, outside of the home for I believe 3 years now, my children have children of their own and my world as I once knew it is much different than I had ever imagined it would be.

I have never been one to sit still for too long, so after finally coming to terms with the inability to properly keep my business running, I have moved in with my sister and brother-in-law.

I have been busy reinventing my life and as I do this, I find that my new friend are those living with a dementia diagnosis, just like me. I am satisfied and inspired by the abilities I hear and see coming from my new friends. I want to be strong and brave, forward thinking and as inspiring as they. I busy myself with new projects for a world that can be more effective for those of us living with a chronic disability.

All of this is true is what keeps me moving forward, the hopes that with our combined brilliant minds, we will set the stage for change. And then I have trouble remembering to show up for a chat group, remembering names of what are familiar faces and I am reminded that dementia likes to take it’s fair share of my time too. Far too much time in my opinion!

I with my 5 lovely grandchildren are kept short, so grandma doesn’t get overwhelmed and confused, possibly even a bit cranky. Dementia dictates how long my visits are. Organizing a family dinner, preparing a meal, dementia has selfishly borrowed my skills as well as my sense of smell and taste. I don’t remember birthdays, holidays or even how old I am. Dementia is keeping that last bit of information, safely tucked away from me!

My home has always been open to friends and family, filled with music, impromptu meals and sleep overs by the grandkids. I would give you the shirt off my back if that’s what you needed. These ideas have been robbed by dementia. Some days, I feel more apt, more aware of the life I aspire to and I thank dementia. Thank you dementia for thinking of me less. But because is a selfish prankster, it reappears and takes the spark of ideas I felt so confident of and steps right up front and leaves me feeling unbalanced and unsure again. 

Dementia is selfish, it has taken my relationships and stolen my lust, leaving some people to suggest I am cold, hard, noncaring and distant. Dementia is not just an inconsiderate friend who,  borrows something and forgets to return it, o, dementia takes my time, my abilities and on some days, my sense of self.

My family is loving and supporting and for this I am grateful. Without them, I may turn sour and entrenched is only the losses. My new friends are pushing forward, initiating and compensating just like the thousands of other people living with dementia.

I am learning this game dementia plays and the rules it would like to make for my life. I have become selfish as well. Dementia will take, but not without it’s having to recognize my keen ability to compensate and reinvent myself. If my old friends could take the time, they would meet a new, improvised and pretty darn good functioning woman, who now hopes to use my experiences living with dementia, for the betterment of those to come.

Yes, dementia is selfish, knowing that, arm yourself for its manipulative ways, learn from those that have come before you and use this newly created mind, to continue the fight for better  understanding and living with the selfishness of dementia.”

I agree with Susan and feel what she has written is insightful, and incredibly helpful. Dementia is selfish, in the sense that we have no choice in the many things it changes in us, and we must be ‘armed’ to fight it. The other thing it highlights of rme is about the way others subconsciously often ‘blame’ us for those changes.

It is Mr Dementia who is changing us, and definitely not something we would ever choose for ourselves. As our needs change, which they do without our permission, we  need others to modify the way they treat us and speak to us, and we need them to work with us for ways that do suit our ever changing needs. 

Author: Susan Suchan 2015
Editor: Kate Swaffer
Copyright: Susan Suchan and Dementia Alliance International 2015

Belated update

Screen Shot 2015-07-28 at 10.18.21 amHello.

This month, as Editor of DAI, it has not been physically possible to keep up with the many commitments I have had in this group, and many others, so I would like to apologise for missing three weekly blogs.

What we can’t do alone, we can do together, but there simply have not been enough helpers to ensure even the basics of our organisation happen this month.

Tribute to Richard Taylor

The passing of Dr Richard Taylor, one of our founding members, and a long time advocate and activist for improving the lived experience of dementia, has also take its toll on our members, and the global dementia community, and to help members, Laura Bowley provided a Zoom chat room on Tuesday; thank you Laura for doing this, it was a good opportunity for people to share their grief.  DAI also continued with Richard’s Thursday support group to allow people to express their feelings and talk about their own memories of Richard.

Keep this date free:

  • August 19 (USA/Ca/UK/EU)
  • August 20 (AU/NZ/Japan/Indonesia)

DAI will be holding a Tribute to Richard Taylor event as part of our A Meeting of The Minds Webinar series.

Details including times will be sent out ASAP.

July 2015 Member update

As far a a July Members update, we were unable to hold the Open Members meeting in July, and I have not written a report to publish here, but suffice to say, there is actually little to report, and so we will provide a two month update at our Open Members meeting in the third Tuesday/Wednesday of August.

Again, our apologies and we hope to see you at the August Open Member to give you an  update, and to hear your views. I’ve not even had time to write up the survey results either, but hope to have that done by this update as well.

Thank you for supporting Dementia Alliance International.

Kind regards,
Kate Swaffer
Chair, Editor, Co-founder

What is dementia friendly?

Screen Shot 2015-07-05 at 4.51.01 pmThe Alzheimer’s Society UK’s Dementia Friends programme is:

“The biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.

Whether you attend a face-to-face Information Session or watch the online video, Dementia Friends is about learning more about dementia and the small ways you can help. From telling friends about the Dementia Friends programme to visiting someone you know living with dementia, every action counts.”

Small actions do count and everyone can make a big difference.

With incredible generosity, their CEO Mr Jeremy Hughes has made this programme available, free of charge, to any Alzheimer’s organisation who wishes to support the dementia friendly work in their country.

It is a wonderful initiative, and it is leading the field, and is making a difference to the lives of people with dementia and their families, friends and supporters.

Being dementia friendly means more than being friendly

From the perspective of people living with a diagnosis of dementia, it is less about being friendly, and so much more than awareness of what dementia is.

It is so much more than professionals and interested others (without dementia) working together to make OUR community more friendly and accessible.

It is more about;

  • Respect
  • Human rights
  • Non discrimination
  • Full inclusion
  • Our right to citizenship
  • Autonomy
  • Equality
  • Equity
  • Access
  • Dementia Enabling Environments
  • Support for disAbilities

Being dementia friendly means including us.

By not including us, the stigma, discrimination, myths of dementia and isolation are continued, and often, by the very organisations and service providers claiming to advocate for us.

Not one or two of us, but a lot of us, and this is why:

  • People without dementia cannot really know what it means to live with dementia; we are the experts of the lived experience
  • People with dementia can inform people without dementia on what it actually means [to us] to be dementia friendly
  • So that is is no longer ‘about us, without us’. This has become a catch phrase, a tick box for organisations, in the same way person centred care is in care plans, but not in action

The dementia friends campaigns being run by advocacy and other organisations need to educate, not just raise awareness.

They need to be respectful and empowering to people with dementia, and very importantly, they need to promote, and use, respectful and empowering language.

If they engage with the media, and ask people with dementia to engage with the media, they must insist on the language being used to be aligned with the most recently updated dementia language guidelines, which can be found here, and without using them, the media, and the organisation, will never be dementia friendly.

Dementia Friends campaigns must never focus on our deficits

If our deficits are what are focussed on, then we will never transform the way the nation thinks, acts and talks about the condition. 

Therefore, Dementia Friends campaigns, campaign material, and campaign media, must never focus on our deficits.

Our disAbilities need to be fully supported, and employing us to work on the dementia friends initiatives is also important. After all, if we were setting up a disAbled friendly community, we would employ people with disAbilities, who really know what it means to be disabled, and what would support them to live in their community independently.

Any organisation, wanting to work on something new, would contract or employ experts.

People with dementia are the experts of the lived experience, and would [and should] significantly and positively impact this work.

In reality, especially in the earlier stages, people with dementia are simply living with disAbilities, that can be supported, in the early stages of the disease. Yes, it is a terminal illness, and yes, it may not be a fun experience all of the time, but it is possible to live much better, for much longer than the expectations and perceptions.

We still have a lot to contribute to society, and our own lives.

As suggested in a recent blog, there are many groups of people working on their own Dementia Friends campaign, excited about what they might be able to achieve, how they might be able to improve the lives of people with dementia and our families, and talking about ways to support us better to live well, and to live in our communities for longer.

Alzheimer’s Disease International have a  Global Charter I Can Live Well with Dementia. Everyone must start including us in this work, it is personal, and not including  us simply means we have less change of ever achieving this goal.

If it’s about us without us, it is not dementia friendly. 

Dementia Alliance International has representation in more than ten countries, which means we can ask members to assist in this work at a global and at some local levels, but we don’t reach all regions.

Therefore, each Alzheimer’s advocacy organisation and Dementia Friends Working Group needs to set up and support their own Dementia Advisory Group, to properly guide, lead and inform the work being done.

What’s missing in the Dementia Friends campaigns?

Some key things  currently missing in the dementia friendly communities work and campaigns are;

  1. Each country, each city, each community working on becoming dementia friendly, must set up their local/regional/city/country Dementia Working/Advisory Group. This is because every single community is different, and because the work must be led by people with dementia, not as it is now, which is by people without dementia.
  2. To be dementia friendly themselves, advocacy organisations must start employing or contracting people with dementia, or an organisation like DAI, to work on their dementia friends campaigns. People with dementia should be treated with the same respect any other consultant is, and paid for the expertise.
  3. They must also themselves, be audited on whether they are operating within their [which should be our] dementia friendly guidelines, and being audited by people with dementia is the first place to start.

Join the global Dementia Friends movement

We ask that everyone join the global Dementia Friends movement, start your own local, regional, city or country Dementia Friends campaign, and support people with dementia, but please, always fully include us in this work.

Each country, each community, needs it’s own Dementia Advisory/Working Group of people with dementia, to lead, guide, and properly inform this work.

And finally, it should not be a marketing tool for organisations to promote themselves, which is what person centred care very quickly became.

Copyright: Dementia Alliance International 2015

Dementia Beyond Disease: Enhancing Well-Being

Last week DAI members and others were privileged to have Dr Allan Power present a session, Dementia Beyond Disease: Enhancing Well-Being as part of our A Meeting of the Minds Webinar series. Thank you Al, your effort, and deep commitment to improving the lives of people with dementia is appreciated.

Dr Allen Power is an internist, geriatrician, and clinical associate professor of medicine at the University of Rochester, New York, and is an international educator on transformational models of elder care, particularly for those with changing cognitive abilities. Dr. Power is the author of two books, Dementia Beyond Drugs, and the newly released Dementia Beyond Disease. He has served as an advisor and educator for the US government for their antipsychotic reduction initiative. Dr. Power is also a board member and educator for The Eden Alternative, the world’s largest culture change movement for elder care.

You will find his presentation enlightening, and hopefully, if you work in dementia care, culture changing.

Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world that seeks to represent, support, and educate others living with the disease, and an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

See the recording of his session here. Apologies it has not been edited to improve the quality.

Dementia Beyond Disease: Enhancing Well-Being

https://www.youtube.com/watch?v=42DvFgXEPKk

We will post his power point slides here as soon as possible but due to my current poor internet connection, they won’t download here!

For those who want to follow Dr Power’s schedule, see his website here http://www.alpower.net/gallenpower_schedule.htm

Membership of Dementia Alliance International is free, and is exclusive to those with a medically confirmed diagnosis of a dementia. Join us at http://www.joindai.org

If you do not have a diagnosis of dementia, but are interested in our work, you can subscribe to our weekly blog or visit us at www.infodai.org

As an unfunded advocacy and support group for people with dementia, we appreciate all donations, and are thrilled to have received one following this last webinar. Thank you.

Research and news: June 2015

Slide6This weekly blog is late, due to time constraints caused by travels of the editor, and various other issues taking precedence which I will write about very soon. Please accept our (my) apologies.

However, there are a couple of interesting research reports I felt would be of interest to members this week, and a recently released ADI newsletter, the first one that DAI has a full page in as a regular feature.

Global Perspective Newsletter June 2015

Firstly, the Alzheimer’s Disease International Global Perspective Newsletter is out, with the first full page insert of news by Dementia Alliance International.

You can download the full newsletter here:  ADI Global Perspective Newsletter June 2015. DAI is featured on page 7.

Younger Onset Alzheimer’s disease

Reported on 28 May 2015 by Dr Ian McDonald in Dementia News, currently the Science Communicator at Alzheimer’s Australia, is another interesting research report: Younger Onset Alzheimer’s disease – new research reiterates it is not just about memory loss.

It is common to associate a diagnosis of Alzheimer’s disease with memory loss and while this is the case for many, new research has suggested that younger people (i.e. less than 65) with a diagnosis of Alzheimer’s disease will more commonly have problems associated with judgement, language and/or visual and spatial awareness, rather than memory loss.

This result was published in the Journal Alzheimer’s and Dementia and suggests a need for a greater awareness of the different symptoms associated with Alzheimer’s disease. This is something that Alzheimer’s Australia and other dementia advocacy groups around the world are committed to doing.

The study, which was undertaken in the UK and led by researchers from the University College London, analysed data from 7815 people in the US National Alzheimer Coordinating Centre database. Each participant had a diagnosis of Alzheimer’s disease, and a record had been made of the symptoms they had first noticed in the early stages of the disease. The average age of the group was 75, with the youngest person aged 36 and the oldest aged 110.

The results found that younger people with a diagnosis of Alzheimer’s disease more commonly displayed non-memory cognitive impairments (i.e. judgement, language, etc.), however the results also showed that the odds of depression and behavioural symptoms also increased with younger age. In comparison the odds of having psychosis (confused thinking) but no behavioural symptoms increased with older age.

Source: Alzheimer’s Australia Dementia News

ADI Report: Women and Dementia

ADI have also published an important report, Women and Dementia, with the purpose of this report is to understand the main issues affecting women in relation to dementia from an international perspective. The report examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal caregiving role for someone with dementia.

Key findings

Across all regions of the world, dementia disproportionately affects women.

More women live with dementia than men. The prevalence is higher for women than for men; women are more at risk of developing dementia and the symptoms they live with are more severe.

Women provide a substantial proportion of informal care to people with dementia, with around two thirds of primary caregivers overall being women.

This figure is significantly higher in LMICs, areas which will account for 71% of the global prevalence of dementia by 2050.

The formal care workforce is predominantly female, providing the majority of health and social care in the community as well as in hospitals and care homes.

There is currently very little research focusing on the gender issues of living with, or caring for, someone with dementia and on the long-term impact of dementia on women as family and formal caregivers.

 

The report recommends that:

All countries need to understand the current and predicted prevalence and acknowledge that dementia disproportionately affects women. Accordingly, policy makers should review what support is currently available and what is required to meet future needs.

There is also a need for skilled care competencies for health and care staff and professionals working with people living with dementia with complex needs and co-morbidities.

In all regions people should be able to access appropriate information and support in place, enabling women across the world to continue to provide care, and to feel cared for themselves.

Source: Alzheimer’s Disease International

Read the full ADI report Women and Dementia-Full report or the summary Women-and-Dementia-Summary-Sheet

Open members Meeting Notes: June 2015

Screen Shot 2015-10-28 at 6.54.05 amDuring the week, we held our first Open Members Meeting, with about ten members present. Due to some IT challenges, it was a difficult meeting for us all to hear each other, and I kept being cut off, so as the host, it was less than perfect!

Although this open members meeting it is a change from the system we first started in 2014 where we had open Board meetings, I truly believe it will give our members a better chance of having your say, and will impact more positively on the way you want DAI to exist. The method of being part of the Board meeting, with no real voice, and no voting rights, for many, did not allow you to have a voice at all, because, as with all groups, there are those with stronger voices who sometimes speak at the cost of others. That is never intentional, and may also happen in this forum, but we are really hoping we can give you a stronger voice. If it does not work out to be a better system, we will review it with you, as we will always work towards improving our methods and services.

We welcomed everyone and thanked them for making the time to join us. I cannot easily express how important it is and how much it means personally to me that members made the effort to attend this meeting, because after all, we are only existing because of our desire to support and advocate for people with dementia.

DAI needs your voice.

I had wanted to start with power point slides but the iPad I was limited to using did not support this, or, I did not know how to work that on an iPad!!!

We went over the meeting guidelines and protocols,  and did not record the meeting, so I hope we can manage to report it here now! If I fail in this, we may need to record it next time. To those of you present, please let me know.

The main guidelines or protocol for the meeting is that we do not interrupt someone when they are speaking, and we ask members to please indicate when they wish to speak, rather than talk over someone else. Nothing complicated at all.

As there had been some significant news since the Board meeting was I held, I began the meeting with a newsflash.

Newsflash

Since the last Board meeting, we have had two people resign from the Board. Janet Ford (nee Pitts) resigned for personal reasons, and Sid Yidowitch resigned mainly due to changes in his health.

Representing the DAI membership and Board, I would like to thank them both for their incredible passion and commitment to the group, especially Jan as a co-founder who has also been a co-chair for almost 18 months, and who represented us so well in Geneva in May. They have both worked hard and represented people with dementia well, advocating strongly for us all.

Updates from Board meetings:

May Board meeting

It was decided in May that in line with our DAI vision and mission, and with what it clearly states on our website and all documentation, that membership of DAI must be exclusive to people with a medically confirmed diagnosis of dementia, and we can not accept members without this, therefore MCI is not sufficient to be a member. This has meant we have lost at least one member, whom we will always welcome back if a diagnosis of dementia is ever confirmed. However, the rationale is that, we do not want DAI to be taken over by people without dementia as happened with DASNI. And for example, as MCI does not always lead onto a dementia, it is not appropriate therefore, to break the membership criteria.

Getting a medically confirmed diagnosis is incredibly difficult for almost everyone, and we realise there needs to be a support group set up to support this group, but it is not currently the mandate of DAI; we barely have funds to operate for members who have a confirmed dementia.

June Board Meeting

In June we held the first closed Board meeting, and we reported the following to members, directly from the minutes from that meeting;

1. ADI has agreed to make a donation to DAI of £1000, based partly on some donations made at the conference in Perth, and partly because I did not claim my speakers travel bursary allowance. This will ensure our running costs are covered for the year, allowing us to continue to fund the Zoom meetings, support groups and other events.

2. We had been asked to provide a work plan for the next fiscal year to ADI, and after much discussion agreed to start with the following:

Three publications:
• Consumer Empowerment
• Communicating with PWD
• I’ve just been diagnosed: What next?

We still need to determine conference attendances, but we believe ADI2017 and WHO meetings on dementia are a ‘must attend’ for as many members as we can find funding for.

3. Jan had reported on the WHO assembly she attended saying it was an excellent conference. One if the highlights meeting the Ambassador of the UN on human rights, and hearing about their focus on lower and middle class countries; language barriers discussed; Jan discussed DAI, past current and present. Speech went over well, very receptive re rehabilitation and individualised person centred plan to keep people in the community; in the same way as has happened in the disability sector.

4. I gave an update on members survey – it was decided 10 questions should be the limit, as more than that may be too difficult for us to complete, and also more than 10 would mean we had to pay a service fee. A few members trialled the draft survey I initially set up, and found it reasonably easy to do. Kate and John sent it to our members. Whilst the survey was not perfect, in part due to being limited to a FREE one, we have received feedback for a significant number of members, and after another 2-3 weeks, I will evaluate and report on it. It will be open a little longer, if you still wish to send in your thoughts.

5. DAI is a member of Global Alzheimer’s and Dementia Action Alliance, although there was nothing to update as we still do not have the minutes from the first face to face meeting held in Geneva in March. We are also a member of LEAD, although again there was little report.

Finally, we spoke about the Dementia Friends Canada campaign video 

Many who have seen this believe it has taken our advocacy efforts back 30 years, and that potentially it increases stigma, discrimination and FEAR. It stereotypes us indicating ALL people have the same symptoms, and focuses ONLY ON OUR DEFICITS.

If you haven’t seen it, and wish to send your feedback or comment in any way, here is the link.

In no way does it line up with ADI’s global charter of living well with dementia.

Some feedback we received said: “it should be a video to explain what the Dementia Friends initiative is and how one becomes a Dementia Friend and perhaps some examples of how someone in the community who is living with dementia might be assisted, not a video that, if I didn’t already know so many people with dementia, I’d be more afraid of someone with dementia than ever!!! The fact that all one has to do to become a “friend” is watch that dumb video is appalling.”

Many of us agree with these comments. The Board has also agreed to send a formal letter to Alzheimer’s Canada.

Please note: Since the open members meeting, I have had a conversation with their CEO who has explained their rationale for it.  That is not to say we will support it, but we do need to thoughtfully and properly respond. I did suggest our members could be a resource for Alzheimer’s Canada i the future, and hope we are taken up on this offer.

Members open discussion

After I was cut off from the meeting, Susan Grant hosted it it was a good discussion where everyone introduced themselves more personally, talking about how long diagnosed and of what their passion was in campaigning and how this could assist DAI.  Members present talked more about why they joined DAI and how they would like to contribute. Everyone was keen to share e mails and face book accounts.

The meeting finished around 22:40pm, and everyone appeared happy energised and ready to assist the DAI BOARD in any way they could.
Thank you for attending, and please, if you were not able to make this one, bring yourselves and your voice to the July Open Members meeting.
Kate Swaffer, Editor and Co-chair
Copyright: Dementia Alliance International 2015

 

John Sandblom presents as ADI2015

Slide01Co-founder and current Treasurer of Dementia Alliance International, and past co-chair (2014), John Sandblom presented on behalf of our membership at ADI2015 in Perth recently.

The presentation presented by John Sandblom titled Finding Our Voice was accepted for oral presentation was written by John, and co-chairs Janet Pitts and Kate Swaffer,  was well received, and very timely. John has given us permission to add the slides and notes from his speech, although unfortunately, no-one managed to record it, so we cannot upload a video of it. Thanks John, you did an excellent professional job or representing our members and organisation.

Abstract:

This presentation will review the first year of a global advocacy and support group, of, by and for people with dementia called Dementia Alliance International. Our vision, “A world where a person with dementia continues to be fully valued” is being realised, as more people with dementia connect around the world, and speak up for their basic human rights. We speak up for full inclusion and a place at the international dementia table; as people with dementia we believe that without full inclusion at the conversations about the very things that affect our lives and futures is imperative. The stigma, discrimination, prejudice, myths of dementia and isolation are simply being exacerbated, by the organisatons or researchers purporting to improve our lives or advocate for us, without us. We will discuss the technology being used to support our work, allowing us to progress rapidly as an organisation with no funding, and with representation from a number of countries. We will also review the Master Classes run during Dementia Awareness Month 2014, and the value of the sharing of the lived experience of dementia. Finally, we will discuss how collaboration has been the key to our success, as well as allowing us to support the work of other people with dementia in individual countries such as the Scottish, European, Australian, Irish and Japanese Dementia Working Groups, rather than work against each other or in isolation. In its first year, DAI has become the peak advocacy body, supported by ADI, of by and for people with dementia.

Presentation slides and notes:

Slides: Finding Our Voice_John Sandblom_ADI2015

Notes: John’s personal introduction including diagnosis and current position with Dementia Alliance International and including his role as a founding member.

Please note: The content of this presentation and our website represents our opinions (however well-informed they may or may not be) and should NOT to be considered medical advice, it is not medical advice. Medical advice should only be obtained during conversations with your own medical doctor.

DAI started as a dream by many people with dementia, all of the founding members having varying versions of that dream, but it was driven by the desire for change, and the desire to increase awareness, education and most importantly, connecting with others people living with dementia all over the world. It is about people with dementia finding their voice, and being fully included.

Our vision is “A world where a person with dementia continue to be fully valued.”

Through empowering members to work on projects, speak out, and get involved in support groups, we believe the value of improving the quality of life for people with dementia is tremendous, and often life altering. Even when people are no longer employed, they can still be meaningfully involved and contribute to society.

People with dementia have an indescribable instant bond, perhaps because we are at great ease with one another, but mostly because you know the other person knows what it is to live with dementia, not questions necessary. Many people doing advocacy work on their own have now joined to work together with other DAI members.

What we can’t do alone, we can do together.

Through strong advocacy, we have collaborated with ADI, and are now the peak body globally representing people with dementia. Whilst we are an advocacy and support group, of, by and for people with dementia, with no ongoing funding, and some voluntary administration and other support, we still need to work towards finding regular funding, and finding volunteers willing to support our work.

All organisations require funding and manpower support, and Dementia Alliance International is no different.

We speak up for full inclusion and a place at every international dementia table… Nothing about is without us.

In finding our voices, we are continuing with the mission of DASNI and The Scottish Dementia Working Group, whose mantra was NOTHING ABOUT US WITHOUT US: Full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination and isolation.

Like everyone else, we make mistakes and we may not be able to function at the same level as people without dementia, however that is no reason to no include us. We need to be allowed to fail, just like everyone else.

By not including us, the stigma, discrimination, prejudice, myths of dementia and isolation are being exacerbated by the organisations, researchers and service providers purporting to improve our lives or advocate for us.

NOTHING ABOUT US WITHOUT US will ultimately mean full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination, isolation and other negative experiences of dementia.

What we do:

  • Website, weekly blog, newsletters
  • Weekly online support groups
  • Advocacy and speaking roles
  • Master Classes
  • Monthly Webinars: A Meeting of the Minds

Supported by technology:

  • Zoom platform for online
    • Board meetings
    • Events
    • Educational webinars
    • Master Classes
    • Weekly support groups

Collaboration is the key to our continuing success.

DAI is a global voice

  • We advocated for a person with dementia to become a member of the World Dementia Council
  • A member was invited to present at the World Health Organisations first Ministerial Conference on Dementia in March

Living better with dementia… It is possible.

But the attitudes of, and support from researchers and health care professionals need to change on this.

The language of dementia also needs to change to language we find empowering, enabling and respectful. Please see Alzheimer’s Australia updated language guidelines – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

“People will forget what you said; people will forget what you did… But people will never forget how you made them feel.” (Mayo Angelou)

“People will forget what you said; people will forget what you did…
But people will never forget how you made them feel.” (Margaret Meade)

 

Membership of DAI

  • Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN icon on our website
  • Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK icons

www.infodai.org/membership/

@DementiaAllianc

www.facebook.com/DementiaAllianceInternational

[email protected]

You can all sign up to receive our weekly blogs when they are published by clicking on the BLUE button on the left had side of the website.

Thank you.

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.