Tag Archives: Editor: Kate Swaffer

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’, 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: “We 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.”

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: “The 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.”

Glenn Rees, Chair of ADI, outlines ADI’s urgent priorities: “We 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.”

Professor Graham Stokes, Global Director of Dementia Care at Bupa, supporters of the report, added: “The findings also highlight that the workplace is a unique place to tackle dementia. With almost half of the world’s 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.”

You can download the SUMMARY and the FULL REPORT here:

World Alzheimer Report 2015 Summary 2015

World Alzheimer Report 2015

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

RIP Richard Taylor PhD

OLYMPUS DIGITAL CAMERAThe members of Dementia Alliance International (DAI) are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer.

Richard 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 epitomised Richard, as his focus was on our continued humanity, and not on our deficits; everyone deserves a hello.

Richard was inspirational, and his influence 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 that care for us, paid and unpaid, around the world, was truly significant.

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 him appropriately through this group. It is a terrible loss, for each and everyone of us as individuals,  but also for the world.

Our deepest sympathy to his family and close friends is expressed here, and we hope they know how much he was loved and will continue to positively influence the dementia community.

 

Editor: Kate Swaffer

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.

Letter to DAI members

Slide1Dear DAI Members,

Firstly, we would like to welcome all new members who have joined us recently, and we sincerely hope we can get to know you and that you enjoy the many supports we have available to you.

We very much look forward to meeting you in our Support groups, on the Facebook groups, or at our Webinars.

It is now also possible for our blog readers to leave comments on our blogs, so we encourage you to do so, and look forward to the conversations there with you here as well.

As co-chairs, Jan and Kate  wanted to report on our sessions and presence at the recent World Health Organisation (WHO) meetings in Geneva.

The first WHO Ministerial Conference on Dementia

The first WHO Ministerial Conference on Dementia was held in March, and as an invited plenary speaker, Kate had the opportunity to express the concerns and wishes of people with dementia for improving the car of the stated more than 47.5 million people with dementia, and asked that the focus of research not only be for a cure, but for improved care including rehabilitation and prevention.

I thanked them for including us and stressed the importance of inclusion, in the same way as people with any other disabilities, are included as equal partners in the conversations about them. We implore governments to invest more money into research, but we would hope that there is a more balanced focus in research for improved care.

These are our three key pointsI made, which were included in the WHO Final Call to Action;

  1. Our human right to a more ethical pathway of care
  2. Being treated with the same human rights as others, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
  3. Research does not only focus on a cure, but on our pre and post-diagnostic care, and on rehabilitation in the same way a person following a stroke or any other brain injury.

Alzheimer’s societies and associations around the world, and people with dementia need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia; this is our basic human right.

ADI have a global charter I can live well with dementia and for this to have any traction, people with dementia believe we must all include these goals in our work. Yes, we all want a cure, but, we want a better quality of life for those currently diagnosed with dementia, where best practice is the not norm, but the exception.

The WHO Assembly in Geneva

Co-chair Janet Pitts (now Mrs. Ford) represented DAI at the May WHO Dementia Assembly in Geneva: My journey to The World Health Assembly annual meeting in Geneva, Switzerland was both educational and motivational. Although I did not have the pleasure of the company of others with dementia, I walked away with a lot of information.

One of the highlights of my trip was meeting with The Ambassador of Human Rights for the United Nations. The focus of the meeting was on the lack of availability of services in middle to low income countries. I was given the opportunity to introduce DAI, our vision, mission, current and future goals. We agreed there were many areas where our ideas over-lapped. Inclusion was discussed in detail and it was felt there may be some boards and committees forming that would greatly benefit from having people with dementia as part of the leadership. The ambassador was glad to know there was an international organization such as ours to speak out for people with dementia.

The Open Members meeting next week, June 9-10 

Regarding an update from the Board meeting this, we will provide you with a personal update next week at this meeting, but here is a basic agenda for the open members meeting next week on 9/10 June, to be hosted by us:

  • Welcome and outline of how the meeting will be run and meeting protocols and guidelines
  • Update from June Board meeting
  • Update from Work plan
  • The future of DAI
  • Open discussion

Fondest wishes to you all,

Co-chairs: Janet Ford (Pitts) and Kate Swaffer

Editor: Kate Swaffer

Copyright: Dementia Alliance International

 

 

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.

Mick Carmody presents at ADI2015

Day 4 Dementia Awareness Week UK 2015

For our blog on Day 4 of Dementia Awareness Week UK, we are publishing the presentation given at ADI2015 by Mick Carmody from Brisbane in Queensland, titled People can live well: even people with dementia. Mick is  Dementia Alliance International Circle of Friends member, and also hosts the online Tuesday support group run in the Australian/NZ/Japan time zones. His wife Sue took the video, and they have given DAI permission to publish it here and on our YouTube channel. Thanks Mick and Sue.

https://youtu.be/qw914-V0bNg

Below are his full speech notes, and the power point presentation slides as a PDF. Well done Mick, and thanks again for sharing yourself with us all.

People can live well: even people with dementia

By Mick Carmody ADI2015

People can live well-even people with dementia_Mick Carmody_ADI2015

Thank you for the opportunity to speak to you today.

It is an honour and pleasure to be here and share my experience of dementia with you.

We can live well with dementia and with your enabling help we will all live full lives.

In less than twelve months I have gone from  being bound by my own   insecurities, which  we all grow through, not leaving my comfort      zone. Now I have a reason to live. If I know I only have 6-12 months left, I am bloody well going to enjoy them. No time for that. Think positive, act positive, be positive.

I  am still here. I am still me!   

This is my story of living positively with

dementia, and about how I believe if we all work on making our communities dementia  friendly and accessible, more people will also be able to live well with dementia. It is also    about improving the care of people with  dementia, and an international advocacy    and support group of, by and for people with  dementia, that I am involved in.

HAVING   DEMENTIA DOES NOT MEAN MY  LIFE    BEFORE DIAGNOSIS NO LONGER MATTERS.           

I AM NOT DEFINED ONLY BY DEMENTIA.        

I have a Personal history!      

Born in Wangaratta ,Victoria, a normal family and    schooling to year   11,   one of five, mother       still alive, 88yrs old.       Moved to Corowa       NSW for 28yrs,  then Brisbane for   8yrs.

My careers in Hospitality Industry, sales       and a Truck driver.

Married   38yrs.    Wife    Sue, Daughter     Melissa     and Son in law Warren; Grandson,  William, and Son, Scott.  My hobbies are very amateur photography, and pre diagnosis was golf, and I enjoyed reading.

I sought medical advice due to memory,  cognition and balance issues, and some    unexplained     ‘episodes’.     After waiting six months to see a neurologist an episode caused me to be admitted to hospital where I was ignored by nursing and clinician staff which is due to lack of knowledge through education.

Twenty five days and two hospitals later a misdiagnosis. I should be happy that I did not have epilepsy was delivered by the       neurological     registrar. I was told it was all in my head.

After being referred to a geriatrician who  spent thirty minutes he said he believed it to be either Lewy Body’s or FTD. He sent me off     to have a PET scan.

Diagnosis: FTD.

He told me it was terminal. He told me to get   my end of life affairs in order sooner rather     than later then go out and enjoy myself!!   

What many people don’t know is that  dementia is a terminal progressive illness, and that there is only treatment for some       types of Alzheimer’s    disease.

There are over 20o types or causes of  dementias.  Currently there are 44.4 million  people with dementia in world, reported by     Alzheimer’s Disease  International in 2014.  Worldwide,  there is  1 new diagnosis  every 4 seconds.

There is NO cure. Therefore  we must be  supported to live well, for as long  as possible.

So I went home and gave up for 6-8 months. I went through the same as everybody else.   Poor me, I can’t have dementia. No. It’s not  me.

Then reality  steps in and “bang” on the back of the head. Not wanting to leave my comfort zone. Leave me alone; don’t ask me to get involved in anything. Boy oh Boy, did that change.

The early days consisted of guilt, anger at   myself, what have I done      wrong.  Can’t go    anywhere especially to a meeting with Alzheimer’s   Australia Queensland who only  offered limited help after I rang them because I did not know where to go or who to turn to.   A key worker for Younger Onset Dementia came out to see us, and she was really helpful in  making sure we had the right paper work in       place.

My wife is my full time carer. A huge job with little or no pay or recognition. Carers are “ANGELS IN DISGUISE. “I have been known to wander off and   not return. My family is like most. My eldest sister and brother in law who visit an know and understand. The rest, well, it’s their loss not mine

I have started writing poetry since my diagnosis I placed one on the AAQ YOD discussion forum. I was asked if they could use it in the AA news letter. Next thing I know my wife and I are on a plane to Melbourne to join an Alzheimer’s Australia consumer group where I became involved   with wonderful group of people in this organization. This really took me out of my comfort zone,

Then a lady I am proud to call my friend introduced me to the Dementia Alliance International. Again a group of people that welcomes you with open arms and they have the ability to bring you out of your shell.

With Kate’s help and push I now have a reason to live,  a reason to get out of bed in the morning.

Education   empowerment are the key if we are to reduce STIGMA. I am passionate about educating as many organisations, large and small about DEMENTIA FRIENDLY

We have all had someone say ” you don’t look like somebody with dementia, that’s only for old people”

My response is simply; “what does a person with dementia look like?

I now have the confidence to get out and spread the word about dementia friendly communities and also have the confidence to speak to you today. THANKS KATE.

Now I will read to you the poem that started everything.

WALKIN MY SHOES, IN MY SHOES

As I lay here in my bed awake still

Sleep I knowat some stage I will

Morning seems so far away

Sometimes I wonder if dementia will stay

I often wonder if I am really mad

Or, if this is real, it is really sad

Frontal temporal lobal dementia they say

Then younger onset dementia all  here to stay

Will get worse,  won’t get better, I am told

That there is no cure makes me go cold

I am amusing to my wife and family and all when I speak of long       lost past

Truth gets stretched a little as memory falls  from my grasp

It is about the only bright spot for my carer  my wife the love of my life

One day soon dementia will go away I say.

“oh I think its here to stay” says Suzie my wife

People stare and look at me strange, they don’t know or  care

If they understood they would not stare

Help me to make them see, it  is, it’s really me

Education is what is needed you see

Cognitive functions are getting harder each day

Simple tasks getting harder now, frustrated that this will stay

Always look forward, never look back

REMEMBER  to say I LOVE YOU every day,    could be the last     thing you get to say.

Dementia Alliance International is a group of  warm, caring, passionate people who are dedicated to the wellbeing of every person with dementia.

DAI has recently collaborated with Alzheimer’s Disease International (ADI) and have become the peak global   organisation    for people with dementia.

These people gave my life new meaning and gave me the confidence to speak out and be  heard. THANK YOU DAI

Dementia Alliance International  is a non profit  group of people with dementia whose vision is    “A world where  a person with dementia      continues to be fully valued.”

Dementia Alliance International  connects people diagnosed with dementia and    others who  are meeting  the  challenges of       dementia through Webinars, Master classes, Online Cafés, and support groups   — all accessible from the home or office through    the     Internet.  Contact them to learn more about    DAI, their programs and to inquire about the online support groups.

ADI’s Global Dementia Charter is: “We can    live well with dementia.”   

Members of Dementia Alliance International believe that.

I am living proof       it is possible. Thank you.