Category Archives: Alzheimer’s Disease International

Dementia Awareness Month 2015

Glenn Rees 1050 x 525Welcome to World Alzheimer’s Month!

However, as with some countries, Dementia Alliance International has chosen to call it¬†Dementia Awareness Month 2015,¬†as that covers all of our members, many of whom have a dementia other than Alzheimer’s Disease.

We are aiming to have more activity here than usual, and are kicking off this special month with your invitation to our September A Meeting of The minds Webinar.

Our eminent guest speaker¬†is¬†Mr Glenn Rees, AM, Chair of Alzheimer’s Disease.

Please register here for your free tickets…

 

The topic is: Global Perspectives of Dementia: what are the priorities?

The 2015 World Alzheimer’s Report sets out a call to action and some conclusions and recommendations, found at the end of the report under Final Conclusions and Recommendations in the report.

How should people with dementia think about these? What are the priorities from a consumer perspective? 

The objective of this presentation and discussion is to help frame some thoughts, which will guide ADI and DAI in their partnership and work.

You will have the opportunity to ask questions and join the conversation after Glenn’s presentation, and we look forward to seeing in you at this event.¬†

Your donations are sincerely¬†appreciated; they do make a real difference to¬†the lives of people with dementia through¬†supporting the work of Dementia Alliance International. Please¬†donate here…

Image source: Alzheimer's Disease International
Image source: Alzheimer’s Disease International

 

World Alzheimer’s Report

Media release from Alzheimer’s Disease International:

GLOBAL COST OF DEMENTIA SET TO REACH US $1 TRILLION BY 2018

World Alzheimer Report 2015 estimates that someone in the world develops dementia every 3 seconds.

London, 25 August 2015: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends‚Äô, released today, has found that there are currently around 46.8 million people living with dementia around the world, with numbers projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050.

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

The report shows that the current annual societal and economic cost of dementia is US $818 billion, and it is expected to become a trillion dollar disease in just three years’ time. The findings show that the cost of dementia has increased by 35% since the 2010 World Alzheimer Report estimate of US $604 billion. This means that if global dementia care were a country, it would be the 18th largest economy in the world, and would exceed the market values of companies such as Apple (US $742 billion) and Google (US $368 billion)*.

The report updates Alzheimer’s Disease International’s (ADI) data on dementia’s global prevalence, incidence and cost, highlighting dementia’s increasing impact on low and middle income countries (LMICs). It is estimated that 58% of all people living with dementia today reside in LMICs, a proportion that is anticipated to rise to 68% by 2050, driven mainly by population growth and an ageing global population. It is also expected that by 2050, nearly half of all people with dementia globally will live in Asia.

The updated estimates are based on new research led by Professor Martin Prince from King’s College London’s Global Observatory for Ageing and Dementia Care**. These new findings take into account both the growing numbers of older people (population ageing), and new and better evidence on the number of people living with dementia, and costs incurred.

Professor Martin Prince notes: ‚ÄúWe now believe that we underestimated the current and future scale of the epidemic by 12-13% in the 2009 World Alzheimer Report, with costs growing more rapidly than the numbers of people affected.‚ÄĚ

In light of the findings, the report calls for a specific global work stream from all stakeholders focused on assisting LMICs to develop programmes to raise awareness and improve access to early diagnosis and care. ADI is urging policy makers around the world to approach the issue with a broader agenda and a wider representation of countries and regions, particularly those in the G20 group of nations. A key recommendation of the report calls for a significant upscaling of research investment into care, treatment, prevention and cure.

Marc Wortmann, Executive Director of ADI, commented: ‚ÄúThe rising global cost of dementia will pose serious challenges to health and social care systems all around the world. These findings demonstrate the urgent need for governments to implement policies and legislation to provide a better quality of life for people living with dementia, both now and in the future.‚ÄĚ

Glenn Rees, Chair of ADI, outlines ADI‚Äôs urgent priorities: ‚ÄúWe must use the findings of this report to advocate for action in international forums to fight back against the stigma of dementia and encourage the growth of dementia-friendly communities and countries. This action should include timely diagnosis and post-diagnostic support and improved access to support and care, especially in low and middle income countries.‚ÄĚ

Professor Graham Stokes, Global Director of Dementia Care at Bupa, supporters of the report, added: ‚ÄúThe findings also highlight that the workplace is a unique place to tackle dementia. With almost half of the world‚Äôs population in employment*** and people staying in work for longer than ever before, employers have a responsibility to act as they have the potential to make a huge difference. They can support people living with dementia and their carers, and also encourage healthy lifestyle changes which may reduce the risk of dementia.‚ÄĚ

You can download the SUMMARY and the FULL REPORT here:

World Alzheimer Report 2015 Summary 2015

World Alzheimer Report 2015

Eulogy and tributes to Richard Taylor PhD

Remembering Richard Taylor PhD

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, ‚ÄúHello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.‚ÄĚ

Richard always began his videos and presentations with: ‚ÄúHello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer‚Äôs type.‚ÄĚ

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 ‚Äėsaved my life‚Äô. 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 ‚Äėlive‚Äô in spite of dementia, and indeed beyond the diagnosis. Richards‚Äôs 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.

‚ÄúNow leave Alzheimer‚Äôs behind! Start a whole new life!‚ÄĚ so I was told.

In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor ‚Äď 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:

‚ÄúSurprise, surprise!‚ÄĚ he announced, ‚Äúwe‚Äôre coming to Berne! I‚Äôll have a few days, we can meet and spend time together!‚ÄĚ

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:¬†‚ÄúWould you like some, too?‚ÄĚ

Startled I stammered:¬†‚ÄúOh ‚Äď yes ‚Äď thanks ‚Äď but ‚Äď the whole bottle?!‚ÄĚ

‚ÄúWell, I hope not!‚ÄĚ Richard replied with an amused smile.

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

When Richard was back from Europe, I got an email:¬†‚ÄúYES! I‚Äôll call you today!‚ÄĚ

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‚Äôs 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 ‚Äėfriends‚Äô feel special. He always replied to emails and was always encouraging and interested in what others were doing.

I loved his frustration with the ¬†‚Äėbig pharma‚Äô 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 ‚Äėsaw‚Äô 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) ‚ÄďHouston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer‚Äôs 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‚Äôs type. He always began his videos and presentations with: ‚ÄúHello. My name is Richard, and I have dementia, probably of the Alzheimer‚Äôs type.‚ÄĚ ‚ÄúHello‚ÄĚ 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.

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‚Äôs 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 ‚Äėabout us, without us‚Äô. 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

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‚Äôs disease ‚Äď 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