Tag Archives: Copyright Dementia Alliance International

We are changing the world!

Screen Shot 2016-06-17 at 11.28.44 AMThis week is yet another watershed moment for people with dementia and is another milestone achievement for Dementia Alliance International, who does represent people with dementia globally.

Without waiting for people without dementia or organisations who say they represent us (including to be invited to events like this), we ourselves ensured participation at this global United Nations event, and Professor Mary Radnofsky, through persistence and a passion that it is our absolute right to have a voice there,  was given the opportunity to speak on behalf of DAI. Well done Mary!

Below is the short speech given by Mary at the UN yesterday, where she worked incredibly hard and persistently until she received this opportunity to be able to represent Dementia Alliance International and all people with dementia formally at this event, to all attendees.

My name is Mary Radnofsky. I’m here to represent the Dementia Alliance International, DAI. I am American.

All the members of DAI are people with intellectual [cognitive] disabilities, specifically, dementia — including myself.

We ARE the voice of dementia; we speak for ourselves. Although I was diagnosed many years ago, I’ve just come out 2 months ago.

Systemic discrimination against people with intellectual disabilities in certain cultures, including America, isn’t necessarily intentional but it contributes to the problem of stigma, especially regarding dementia.

My question is: How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt we’ve had to hide our condition rather than deal with our society’s stigma?”

Here is the link to the audio and a photo of me speaking before the entire body at the UN Conference of States Parties on the final day of the meeting.

https://www.dropbox.com/s/vysxcd0fg4m802h/DAI%20question%20to%20CRPD.mov?dl=0″

Thank you Mary, for representing us so well, and for braving the trains and traffic and the huge crowds of strangers in spite of living with dementia, for us all. We understand too well the impact and effect being there alone must be having on you physically and emotionally, and are truly indebted to you.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)

Footnote:  The term Intellectual disabilities was used, rather than cognitive disabilities, as this is the term the UN audience would understand. Our next job is to teach them (and others) that dementia does not cause intellectual disabilities in the same way as others living with intellectual disabilities, but is a disease of the brain, causing cognitive impairments, and whose symptoms cause people with dementia varying disabilities, some of them cognitive and some physical disabilities.

Communication Challenges – Being Curious, Cautious, and Courageous, by Teepa Snow

In March, we hosted a Webinar with Teepa Snow, which was informative, and very well attended. This week, as part of our Dementia Awareness Week UK #DAW2016 activities, we are adding the recording of it here. Our gratitude to Teepa for her time ad wisdom, and deep knowledge about how to support people with dementia.

Together, we earn from each other, and together respecting and listening to each others unique view points, we can all make a difference.

Please do consider donating, especially if you are employed as you would have paid $45 USD to have attended to listen to Teepa on the day. Our current fundraising campaign can be accessed here…

Your donations help people with dementia support themselves to live with a higher quality of life, and more independence, as well as reducing stigma and discrimination.

Watch the video of Teepa here:

Download the slides here: Teepa Snow: Communication Challenges – Being Curious Cautious and Courageous

 

Dr Al Power – Living with dementia: New perspectives

This week we are adding the recording from the webinar by Dr Al Power held in January this year. Al discusses information and his thoughts about drug use and misuse, and he challenges the “BPSD” concept, and shares so much more. You will find it enlightening, perhaps confronting if yo work in dementia care, but extremely informative. Our sincere thanks to Al for his continuing support of people with dementia.

You can download the power point slides here Dr Al Power DAI A Meeting of the Minds Webinar 27-28 Janury 2016

DAI Webinars and events are held to support everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

If you are in paid employment, please consider donating the registration fee of $35.00 that you would have been asked to pay if you had attended on the day.

Susan Suchan on living with dementia

This week we ar sharing the first of our video series of our members speaking out about living with dementia, about how they feel, and how others can better support them. Special thanks to Susan Suchan for sharing this with us. You can read more of her story here.

Featuring DAI member, Chris Roberts for #DAM2015 Day 9

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

For Dementia Awareness Month Day 9, we are featuring one of our members, Chris Roberts and his work and blog, which says he is a ‘Dementia survivor so far’. Chris comes from Wales, and is married to the lovely Jayne Goodrich, and has a lovely family as well, one daughter who some of us have met. They are all intensely proud of his advocacy work, and his attitude to living with a dementia, which is a chronic, progressive terminal disease.

Chris has a healthy CV, since being diagnosed with dementia, and is a member of DEEP (UK), a MSNAP Peer Reviewer, a Dementia Friends Champion (UK), an Alzheimer’s Society UK Ambassador, is a Dementia Research Champion, an Alzheimer’s Society UK Advisory Group member, a Member of Dementia Action Alliance, a founder of the FB group; Dementia Information, does extensive media work as a Media Volunteer for Alzheimer’s Research UK, is aBoard Member of Dementia Alliance International, and most recently was appointed to the NICE Committee Member, representing people with dementia. I cannot tell you all of the meanings of the abbreviations used for most of those groups, but can add them at another time if requested!

Please, head over to his blog and read some of his insightful posts about living with dementia, and of the work he is doing. Congratulations Chris, for showing the way to so many others as well. We are all proud of you as well.

Editor: Kate Swaffer
Copyright: Dementia Alliance International

Cafe Le Brain Australia and our online Support groups

Screen Shot 2015-05-15 at 8.17.48 amCafe Le Brain Australia is re-commencing on the third Friday of May which is May 15th, being run again on a monthly basis from 1pm (Brisbane, Queensland time).

All DAI members will be sent the link to join as soon as it is back up on our Events calendar. For May, we will have a guest speaker, yet to be confirmed, but who will present on a topic of interest to people with dementia and their friends and family, and who will be available for questions.

Please keep May 15th free to join Cafe Le Brain Australia. 

DAI member, Mick Carmody from Brisbane in Australia, continues to host the weekly online support groups at a time suitable to those members living in Australia, New Zealand, Japan an other countries in time zones similar to them. Well done and thank you Mick for your dedication and enthusiasm. The details for this regular support group is below;

Online Support Group for people with dementia in Australia

Hosted by Mick Carmody on  Tuesdays 1:00pm – 2:30pm
at ZOOM Online video (map)
This support group is run by people with dementia, for people with dementia, and is a meeting place for people diagnosed with all dementias including Alzheimer’s disease or cognitive impairment under review. It is a confidential forum, not for professionals or interested others to attend, and the rule on confidentiality is that anything said in the group, stays in the group. Respect and dignity for all, as well as providing a safe and empowering environment are some of our goals.
Please contact [email protected] to register for this support group. The link to the group will be emailed to you the day before the support group meeting.
Go here for information about all of the DAI events and support groups.

Copyright: Dementia Alliance International

DAI update on the first WHO Ministerial Conference on Dementia

Source: WHO
Source: WHO

It was significant and pleasing for our members that we were represented at this very important  World Health Organisation Ministerial Conference  on Dementia.  DAI Co-chair Kate Swaffer gave a key note speech on Day 2, and two DAI members Hilary Oxford from the UK, also a member of the World Dementia Council, and Michael Ellenbogen from the USA were part of a panel ‘The People’s Perspectives’ at the end of Day 1.

Alzheimer’s Disease International have reported on the event here, (the webcast of the DAI presentation is no longer available), and below is the transcript of the speech. Here also is the the power point presentation  WHO_17 March 2015_ppt for those of you interested.

Speaker notes: Day 2 Plenary Presentation

(Kate Swaffer, 8 minutes)

Slide 1: Distinguished guests, Ministers, ladies and gentlemen.

Thank you for the invitation to speak today; it is an honour and privilege to represent the members of Dementia Alliance International, and the global community of over 47 million people living with a diagnosis of dementia. It is important that people with dementia, in the same way as people with any other disabilities, are included as equal partners in the conversations about them. This is our basic human right.

Slide 2: In collaboration with Alzheimer’s Disease International, Dementia Alliance International has become the peak body for people with dementia globally, also working together with the Dementia Working Groups around the world. We also advocated for the World Dementia Council to invite at least one person with dementia onto the Council, and we are thrilled Hilary Doxford from the UK is a member. We welcome and appreciate this significant appointment.

I believe the People’s Perspectives session yesterday in many ways set the scene for people with dementia, because our lived experience is as important as finding a cure, and although I won’t share very much of my personal story, I have been a family carer for a number of family and friends with dementia, now deceased and am also a care recipient of services for people with dementia due to my own diagnosis. To say I have a very vested interest in dementia is perhaps an understatement!

We applaud the World Health Organisation for holding this conference, and the work of the World Dementia Council as well as ADI and everyone in attendance. Like you, we implore governments to invest more money into research, as that will save in the future, but we would hope that there is a more balanced focus in research, and not only the one after the golden egg, which is a cure. That focus excludes and denies the 47 million people currently diagnosed with dementia of better services, treatment and care.

Slide 3: The discussions yesterday were illuminating and of great interest to people with dementia, although it was interesting to note that rehabilitation and living well with dementia were not mentioned.

ADI have a charter “I can live well with dementia’ – for this to have any traction, people with dementia believe we must all include this goal in our work.

Slide 4: As someone suggested yesterday, we all may have many issues important to bring to this meeting, but three of topics of significant importance to people with dementia are;

  1. That we have human right to a more ethical pathway of care
  1. Being treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
  1. That research does not only focus on a cure, but on our pre and post-diagnostic care, and on pre and post vention including rehabilitation.

When I was diagnosed with dementia at the age of 49, I was told to get my end of life affairs in order, to give up work, to get acquainted with aged care, and to go home for the time I had left. I term this Prescribed Disengagement, but chose to ignore it and with support from the disability sector, engaged in authentic brain injury rehabilitation and other non-pharmacological and positive psychosocial interventions for dementia, including advocacy.

If I had been treated after a stroke, there are ethical and rehabilitative national and international guidelines; this needs to happen for dementia and thanks to ICHOM being led by Alastair Burns, this is in progress and I hope that rehabilitation becomes part of the guidelines.

It may not be a cure, but it will ensure we have a better quality of life, and I believe, research will ultimately emerge to prove it can slow the progression of dementia. If it only keeps people with dementia out of residential care for 12 months longer than we experience now, it will save governments billions of dollars. Many established mechanisms for development and assessment of clinical interventions have not been adapted to population ageing or to dementia. The time for this is now.

New, sustainable models of care that balance the role of family and government, and that overcome gender inequities, are urgently needed. Advances in information and communications technology, assistive devices, medical diagnostics, and interventions also offer much promise and it is promising that the World Dementia Council has this as part of their focus.

I have worked hard on re-empowering other people with dementia to reclaim their pre diagnosis lives, and on policy and research for dementia, on dementia friendly community initiatives in Australia, and have a particular focus on a more ethical post diagnostic pathway or model of care.

Yes I want a cure, but more importantly, I want a better quality of life for the more than 47 million people currently diagnosed with dementia, where best practice is the not norm, but still the exception. In rich western countries, this is especially unacceptable.

People with dementia also need to be at the heart of the conversations about them. We may not be able to march in front of our respective Parliament houses, but we are marching online in large numbers for inclusion, research, better care, and against discrimination and stigma. This is our human right.

We do not yet know whether people are living longer and healthier lives or are simply experiencing extended periods of morbidity.

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. ADI in their 2012 report quite rightly highlighted this out.

It is our human right not only to person centred care, and ethical care plans, which currently we are not often offered until we need palliation – if then, in some countries – but to a system and world that stops discriminating against us. The current system of care is unpalatable and unethical, and we deserve much more.

Thank you. (Kate Swaffer)

The full notes are also available to print here WHO Ministerial Conference on Dementia_17 March 2015_Kate Swaffer

Dr Shibley Rahman has also published a blog about it here…

Copyright: Dementia Alliance International

Editor: Kate Swaffer

Research wrap-up #2

Slide2Dementia Research Wrap Up – February 2015

Author:  Dr Ian McDonald, Science Communicator, Alzheimer’s Australia

Since my last wrap up in December a lot of new research has been making its way into scientific publications and also the mainstream media. In this short wrap up I thought I’d focus on a few of the studies I found interesting but as always if you want to delve more into it, you can visit the Dementia News blog at http://dementiaresearchfoundation.org.au/blog which is updated regularly.

New research, published in the Journal of Clinical Investigation has revealed that fully functioning microglia can prevent neurodegeneration in mice, moving researchers one step closer to figuring out how to delay or even prevent Alzheimer’s disease onset. Next question – what are microglia? Well microglia are specific types of supportive brain cells that constitute about 10-15% of total brain cells. They assist in maintaining normal brain function and help stave off neurological disorders, such as Alzheimer’s disease. When microglia lose their ability to function, amyloid beta proteins can build up in the brain, inducing toxic inflammation which may lead to Alzheimer’s disease. Therefore it is suggested that people with Alzheimer’s disease have a steady decline in the normal functioning of microglia cells.

It is known that microglia function well in young people but tend to function less effectively as people age. This degeneration is predominately due to a protein that triggers inflammation, known as EP2. In this most recent mouse study, the researchers found that blocking the action of the EP2 protein restored the ability of microglia to do their job. More specifically, they found that blocking the EP2 protein reduced brain inflammation and cleared toxic markers which cause cell death, as well as prevented cognitive decline in Alzheimer’s-afflicted mice.

I also came across another interesting study published in the International Journal of Alzheimer’s Disease which was looking at dementia within twins. To be eligible for the study, one twin had to have been diagnosed with a form of cognitive impairment or dementia and the other not. One of the research questions they were looking at was whether playing a musical instrument in later life was a protective factor against dementia, and it turns out that is just might be. Of the 157 sets of twins (i.e. 314 individuals) the researchers had in the study, 31 individuals identified that they played a musical instrument. When they delved further into these 31 musicians, 27 were found to be cognitively healthy, while four had dementia. So when the researchers analysed this specific group of twins (controlling for gender, education, and physical activity) they found that those participants who played an instrument in older adulthood had a 64% lower likelihood of developing a cognitive impairment or dementia. This result certainly provides more evidence that learning a new hobby (such as a musical instrument) may be able to stimulate your brain and reduce your risk of dementia. Plus it is well known that music can also be used to help improve the quality of life and behaviour for those who are living with dementia.

Another study, published in the journal JAMA Internal Medicine stated that ‘anticholingeric medications’ may increase your risk of dementia. Anticholinergic meds include things like hay fever tablets, sleeping pills, asthma drugs and anti-depressants and they are designed to block a neurotransmitter called acetylcholine, which is involved in transmitting information between nerve cells. In this study, the researchers analysed the medical records of 3,434 participants (65 years or older and all without dementia at the beginning of the study). Over a ten year follow up period, 797 participants (23 percent) developed a form of dementia, and those who were taking high doses of prescription anticholinergic medications for more than three years were at a greater risk compared to those who were not taking these types of medications. It is important to stress that the current results do not suggest that these medications cause dementia, nor does it suggest that a specific type of anticholinergic medication is linked to a higher risk. More research is required to answer these questions. The researchers also stress that these results do not suggest that people who are taking either over the counter or prescription anticholinergic medications should cease to do and if concerned, suggest talking to your general practitioner, pharmacist or a health professional about the risks and benefits of the medications, particularly if alternative medications may be available.

Thanks for reading the February 2015 Dementia Research Wrap Up.

Thank you for writing it for DAI Dr McDonald, and at a generous pro bono rate.

 

Master Class 2: My Conversation with My Doctor

It has been an extraordinarily busy time so far during Dementia Awareness Month 2014, and the second Master Class is now available to view here and on YouTube. Congratulations to DAI members, John Sandblom, Jennifer Bute and Dave Kramer for sharing your experience and wisdom with our members and in fact, the world! Eventually!

Published on our YouTube channel September 11, 2014

In this webinar, our panel shared their experiences of sitting on both sides of the table – physician and patient — and talked about how to make the most of your visit to your doctor, how to get the information you need, how to understand what the physician is telling you, and how to advocate for yourself.

You can register here for Master Class 3 on September 17: Advocacy and Speaking Out. Click here for class times, class description, and to register.

MEDICAL DISCLAIMER: Information and other content included on this Site or in this video (Master Class 2: My Conversation with My Doctor) is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. This site and video does not provide medical advice. You may not use or rely on any information contained on the Site or in the Video for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on www.dementiaallianceinternational.org or viewed or heard in a video on this Dementia Alliance International YouTube channel.

 

Setting up Dementia Alliance International: A roller-coaster-ride!

see the personIt is time once again for the DAI weekly blog, and as I haven’t received any stories from members, old or new, to share with you, I thought as the Editor I’d better come up with something! Needless to say, my own blog was very short today, and I am also still far behind in my personal writing and overdue uni work, but as I made this committment to DAI, I wanted to follow through.

So onwards and upwards through the fog towards the stars and clouds…

We must all rise above dementia in our own ways, and doing this is one thing that helps me. My goal and passion to give an authentic voice to people with dementia, and to support and advocate not only for them, but to teach that it is possible, keeps me focused and reasonably positive most of the time too.

The challenges of setting up a global, online support and advocacy group, of by and for people with dementia have been extraordinarily rewarding, and also very stressful at times. Personally the last seven months – yes we have been going seven months as of the end of July – have brought me personal joy, but also tears and frustration.

Setting up DAI has been what I can only describe as one heck of a “roller-coaster-ride”.

We are a group of people living with this or that type of dementia. Due to our dementia, each of us have varying types and levels of disabilities caused by the symptoms of dementia. They are not always compatible with being productive, nor with being focused, and on some days, prevent us from doing anything at all.

On top of that, our disabilities are always changing, or getting worse, and so we can feel like we are constantly at sea on a small raft, being thrust into whatever the weather decides to send us.

Sometimes, a diagnosis is changed, or taken away, and the emotional roller coaster that sends the person on is tumultous. It is hard enough being told you have this or that type of dementia, but for those people where it keeps changing, or is ‘taken away’, it takes its toll.

Mr Dementia has a way of getting in the way of living well and in  being productive, and without a lot of focus and support, it is challenging to achieve the activites we embark on or dream of, and DAI wants to break that mould, and teach others with dementia that with support and enablement, and the breaking down of stigma and discrimination we can all live better lives.

Importantly, we do not have to act as if we are in the end stage upon diagnosis, nor accept the Prescribed Disngagement dished out to us by our health care professionals. We can and should continue to live our pre-diagnosis lives for as long as possible, in the same way we would if diagnosed with another terminal illness.

DAI has had to cope with resignations of Board members for health or personal reasons, and this is always sad, but also very unsettling as it makes us question what we are doing. We also know that DASNI was the first group in the world of by and for people with dementia, but as it has not remained exclusive to people with dementia, the reason why a number of us felt DAI was still needed. In no way did we mean to offend any of the people who set up DASNI, but rather to complement what they had done, and build on that work.

We have also had to contend with the angst of a few others feeling as if DAI was their original idea, and feeling upset they were not one of the original co-founders.  I’m not sure whose idea it was first, but know I have talked about a group like it with other people with dementia for over four years, and the original DASNI members obviously thought about it long before then. In some ways, this has been a stumbling block as it may have held back our membership.

There is always competition for whose idea it was first, and now with the internet being so accessable, it is easy for other groups to emerge; and other groups have emerged since we started, causing us to have to rethink our position, and wonder if they are in competition with us, or simply providing another service.  But question it we do, and it brings with it various negative and positive emotions, and takes time away from more productive activites. Life is like that, so it stands to reason setting up a new group is going to have its challenges!

Since 1 January 2014, and without any funding, Dementia Alliance International has achieved a lot, and I thought it was a good time to remind ourselves and our members (people with dementia), as well as our supporters, on what we have already achieved.

Firstly, I would like to achkowledge we have a very committed volunteer and friend, without dementia, Laura Bowley, who has worked hard to support our efforts, and enable us; she helps to run meetings, often writes up the minutes, co-hosts the Webinars, is involved in the Memory Cafe and a number of other things as required. Thank you Laura. There is no way we could have done it without your support and hard work.

  1. We have a website, although it is still in progress with updates and work to improve it, run by members.
  2. We set up our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia woud also want.
  3. Virtual support groups.
  4. Facebook page.
  5. Twitter account.
  6. YouTube channel.
  7. We are building on the Webinars at A Meeting of The Minds.
  8. We now have a blog, this one being the 12th of our weekly series.
  9. We have a quarterly newsletter:The Advocate.
  10. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
  11. An active Board, including a few new members who have just joined.
  12. A “Circle of Friends” – members (just a reminder, they are all people with dementia) who have started meeting to work on projects, e.g. educational resources and material.
  13. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
  14. These funds also allowed us to purchase a banner and purchase t-shirts for members and supportes, to assist with marketing and fund raising.
  15. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
  16. Our By Laws are almost complete.
  17. Our Strategic Plan is in progress.
  18. Our 501c status as a not for profit organisation based in the USA is in the final stages, which will allow us to focus on fundraising. This is mostly thanks to Richard Taylor PhD one of our co-founders and an original Board member.
  19. A small group of “DAI Associates” – people without dementia, who have committed to volunteering some of their time and professional expertise to help develop the activities of the group, or to support and enable people with dementia who feel they need assistance for their disabilities. This is not so that they can promote themselves or highlight commitment to people with dementia, but instead to provide support for, and enable us; we need to build on this group in other countries, so they can support new local Alliances of by and for people with dementia.

Looking ahead, we are currently collaborating with others to set upsome very exciting projects, and as we develop our skill sets, commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia. We will be adding resources and finding  funding, and will achieve our current goals and beyond.

I for one don’t want to go it alone any more. Living with dementia is already a desperately lonely experience, and trying to achieve change on my own is nowhere as much fun.  Perhaps it is not as productive either. Even though some days I feel frustrated, as if we are not achieving very much, or not quickly enough, writing this over the last few days has made me realise just how much we have achieved, and what we have in the pipeline for the future.

It is very exciting, and I ask you continue supporting us, either through membership, referrals, or finding people who can offer us professional support or funding.

It is no longer, “If it is to be it is up to me (or you)” but rather “what we can’t do alone, we can do together”.

 

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2014