Following on from last weeks blog which was a short précis of the conference in Manila, I was thrilled to be able to show a short video of DAI member Veda Meneghetti: a story about dealing with dementia, as part of my Dementia Friendly Communities presentation during the DFC workshop on the last day.
Veda, supported by her partner Lynda, is a member of DAI and the Kiama Dementia Advisory Group, and part of the Kiama Dementia Friendly Communities Pilot Project. The round of applause was brilliant, and Veda and her partner Lynda should be very proud. You can see it here… Thanks you Veda for allowing us to showcase your story.
The last three days I have been representing Dementia Alliance International at an ADI Regional meeting and Philippine Neurology Association conference in Manila. In fact, getting here at all was a major challenge, as due to the terrorist attacks in Paris, and Mr Obama and other heads of countries being here for APEC, security was really increased, and the airport cancelled for all flights for over 12 hours, of course, on the day I was to depart from home. On top of that, there have been bushfires and a heatwave back home, with catastrophic bush fire warnings, and we have been unable to go home earlier than we initially booked!
Anyway, the hospitality in Manila has been exceptional, and the friendliness and hospitality of the people here truly spectacular. The dinner last night was a highlight, with all regions of the country putting on a performance, including the neurologists and other medical doctors. It was extremely competitive, and very entertaining.
The conference itself was perhaps more for neurologists, as it was hosted by the Philippine Neurology Association, and many of the speakers presented the scientific data and pharmaceutical side to dementia, but it was an important step for DAI to be represented here, and especially to encourage them to include people with dementia in their programs in the future.
After the Dementia Friendly Communities session today, which I presented at along with five other presenters from the region, including Japan who started this movement about 20 years ago, it was enlightening, and we all learnt a lot from each other.
The thing I am most pleased about, is that DAI will be able to support people with dementia in the countries represented here, such as India, Indonesia, Hong Kong and Singapore, and though this channel of support for each others work, we can give a stronger more global voice to people with dementia. We have had our first support group, for people with dementia in Nigeria, and I foresee there will be many more to follow all over the world. Mick Carmody, our support group facilitator and host and also a fabulous chap and poet, will certainly have a lot to get him our of bed every single morning!!
There has been a lot to take in, and it has been very tiring, but I will write up a full report especially on the DFC session today, for another blog.
“Dementia Friendly Communities Defined – Key Components for a Successful Start”
About our event: In England where there are over 60 towns and cities that are working towards becoming Dementia Friendly Communities, a large scale expert and public consensus process took place from 2014-2015 to define the common elements of what being “dementia-friendly” means. This process culminated in the publishing of the British Standard Code of Practice for the Recognition of Dementia-Friendly Communities in England developed by the British Standards Institute and the Alzheimer’s Society with funding from the Department of Health and launched in July 2015. The aim was that this code of practice would help to support existing communities and to inspire new communities. It provides recommendations on:
Who needs to be involved in setting up a dementia-friendly community
Aims and goals that should be central to all dementia-friendly communities
Areas to focus on and the processes needed for your dementia-friendly community to operate successfully
The positive changes for people with dementia that we would expect to see from a dementia-friendly community
About our Speaker: Nicole Batsch has over 18 years experience in developing and supporting ageing and dementia care programmes across the US and globally. She is currently obtaining her PhD from King’s College London and is a consultant with Alzheimer’s Disease International. In this role, she co-authored the World Alzheimer’s Report 2012: Overcoming the stigma of dementia which included a global survey of stigmatising experiences of people with dementia and family caregivers and serves as an adviser to the World Health Organisation on a family caregiver education programme. In this session, Nicole will be discussing her involvement with the British Standards Institute and the Alzheimer’s Society in developing the British Standard Code of Practice for the Recognition of Dementia Friendly Communities in England.
Date: Wednesday December 9 / Thursday December 10, 2015
Speaker: Nicole Batsch, PhD candidate from Kings College, UK
Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to suppport us and improve our lives.
We have needed to start to charge a fee for those who are working in the sector. You will be able to claim the cost of the tickets as a tax deduction. The fee for this service supports your education, and also supports our work which directly supports people with dementia.
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It is with great sadness that we inform you that a leading global dementia advocate Peter Ashley passed away on Tuesday 10 November 2015.
The members of Dementia Alliance International wish to pass on our condolences and deepest sympathy to Peter’s family and closer friends.
His advocacy has been significant; Peter is also acknowledged by Lisa Genova, in her book Still Alice as he was one of the people with dementia who contributed to her knowledge of the lived experience.
As a leading dementia advocate, and DAI member from the UK, many diagnosed for will have met him personally or online, and worked with him. Many of our members however may not have heard of Peter, and it is with thanks and a debt of gratitude that we remember him, as along with the late Richard Taylor and a few others, Peter was one of the first global advocates for people with dementia.
Those of us who are continuing to fly the flag as dementia advocates are greatly indebted to Peter, and we hope his family find some small sense of strength in the legacy he has left those of us also diagnosed with a dementia. R.I.P dear Peter.
In response, the Pan American Health Organization (PAHO) adopts landmark Regional Plan of Action on Dementia
London, 2 October 2015: The Pan American Health Organization (PAHO), the World Health Organization’s (WHO) agency for the Americas, has become the first region to adopt a Regional Plan of Action on Dementia.
The World Alzheimer Report 2015, launched by Alzheimer’s Disease International (ADI) at the end of August, revealed that there are over 9.4 million people living with dementia in the Americas region, expected to treble to 29.9 million by 2050. Central America is also expected to experience the highest increase in dementia costs between now and the middle of the century, a rise of 348%. The regional cost of dementia in the Americas is estimated at US $315 billion, comparable to the market value of Google (US $368 billion)*.
During the 67th Session of the Regional Committee of the WHO for the Americas, held earlier this week in Washington D.C., PAHO country representatives voted unanimously in favour of the Plan of Action.
The PAHO Regional Plan of Action on Dementia obliges countries to develop national dementia plans, including the promotion of risk reduction strategies through public health programmes, ensuring a rights-based approach to the provision of care and support for people living with dementia and better training for health professionals, as well as more funding for research.
National dementia plans remain the single most powerful tool to transform national dementia care and support and prepare for the global dementia epidemic. Within the Americas, national dementia plans are currently in place in Costa Rica, Mexico, Argentina and the USA, with Chile expected to announce their plan soon.
Much of the global increase in the prevalence of dementia will take place in the low and middle income countries. Today, more than half of all people with dementia live in low and middle income countries, and this will rise to 68% by 2050. In these countries, stigma, lack of support for people living with dementia and their families and lack of funding for health systems present major challenges.
Johan Vos, Deputy Executive Director of ADI commented: “As the number of people living with dementia worldwide increases, so too will the costs associated with providing care and support. Most governments are woefully unprepared for the seismic increase in dementia’s global impact. ADI is encouraged to see that PAHO has taken leadership on this issue, and hopes that other WHO regions will follow suit in taking action to help support people living with dementia and their families around the world.”
Carissa F. Etienne, Director of PAHO, added: “This plan is the first of its kind for any WHO region, and it could not have come at a better time. In Latin America and the Caribbean, the number of people over 60 is expected to double over the next two decades, and dementia is one of the greatest threats to their independence. We need to take action now to reduce the stigma surrounding this condition, to delay functional decline in people with dementias, and to improve their long-term care, including by supporting their caregivers.”
The adoption of this PAHO plan supports the ‘Call for Action’ agreed in March by 80 countries at the WHO Ministerial Conference on Global Action Against Dementia and for the WHO to put this on their agenda at the January 2016 Executive Board meeting.
*source: Forbes 2015 ranking
Source: Alzheimer’s Disease International
Editor: Kate Swaffer
There are some very important messages in the most recent book, Living Better with Dementia written by Dr Shibley Rahman, number two of his trilogy on improving the care of people with dementia and their families.
As part of his commitment to people with dementia, Shibley has put together a series of very succinct slides, with quotes from his books, which I am sharing here. Whilst he may have had a chequered history, although I’d venture to say most of us have, his willingness to share freely with the members of DAI and the dementia sector in general is extraordinary. We felt it worth sharing these short quotes for Day 28 of Dementia Awareness Month 2015.
Note from the editor: DAI does usually promote peoples ‘products’, but these books are truly ground breaking, and will go a long way to improving the care pf those of us diagnosed, and those people who are supporting us. They are already greatly influencing the dementia care sector, and the field of dementia in general, as evidenced by the BMW best book of the year award.
For Day 27 of World Alzheimer’s Month 2015, #WAM2015 and for a day off from dementia, we are sharing the beautiful YouTube recording of the late Luciana Pavarotti’s daughter. The relevance for this, is that although when he died, many thought the shoes of Pavarotti could never be filled, just like some have said of the late Dr Richard Taylor. There will always be people to take the baton, whatever the cause, or whatever the passion, e.g. music, art, racing car drivers, olympians, etc… Sit back and enjoy this wonderful young girls talent, following in the footsteps of her truly great father.
Petite fille de Pavarotti, Canta sislena ganadora tu vales
Dr Peter Gordon, a psychiatrist from Scotland, recently gave us permission to post this Vimeo he made, and had added to his tribute to the late Richard Taylor on his own blog. Peter I dedicated his film Primum Non Forgetful, posted below, to Richard.
Yet again, during another World Alzheimer’s Month, we have been blitzed by articles and stories in the print, radio and print media about dementia, many of them negative, stigmatising and demeaning, and focused on our deficits.
Yet again, many of the stories in the media have been of or by family care partners, researchers or health care professionals, taking about people with dementia, when the people who should be interviewed, are the people living with dementia themselves.
On World Alzheimer’s Day, the media should have been flooded with people with dementia, not people without dementia.
Sadly, it continues, far too often, to be “about us, without us”?
Yet again, people with dementia have been offended and insulted by the continuing use of terms like ‘dementia sufferer’, ‘suffering from dementia’, or being called ‘demented”. They would not call us retarded, we are 100% sure of that!
Yes, this happens even when the person being interviewed or who has set up the interview, has specifically asked the journalist NOT to use those terms.
I attended an event this week, where the journalist who was the MC, was given the dementia language guidelines ahead of the event, but still called us sufferers. When I spoke to her afterwards, she claimed she didn’t know about the guidelines. This is an all too common experience!
The journalists I know personally or have had online discussions with, all proclaim they are professional, yet far too many simply refuse to do the research about, and then actually bother to use, respectful dementia language.
As our advocacy organisations are pushing globally for dementia friendly communities, and using the media in part to promote these campaigns, the time is NOW, that everyone starts using respectful language.
These organisations must also insist the dementia language guidelines are referred to including in-house, if they really are advocating for people with dementia…
No-one can claim to be dementia friendly, if they continue to use language that disrespects the majority of us.
One of our members who also blogs regularly, Wendy Mitchell in the UK wrote about the importance of language recently, worth reading.
Advocacy organisations all over the world are publishing their own dementia language guidelines. Let’s hope they use them…
Oddly, Dementia language guidelines have been in existence since as far back as 2008, and yet, the media, the public, the health care sector, researchers, and the organisations who say they advocate for us, are still mostly, not using them…
The most comprehensive guidelines are downloadable here:
It is Day 24 of World Alzheimer’s Month 2015 #WAM2015, and human rights for people with dementia is a current global topic of interest to us all. This of course, includes society supporting our disabilities, caused through having this or that type of dementia, in the same way wheel chair ramps are provided. It is simply our legal right, but until recently the sector has not even been advocating for this.
We thank Peter sincerely for his advocacy in this area for people with dementia, and for his time and expertise in sharing with our members. With permission, we recorded the presentation and will share it today for those who could not attend the meeting, either due to being unavailable, or because of not being a member of DAI.