Tag Archives: World Alzheimer’s Month 2015

Support: of, by and for people with dementia #DAM2015 Day 29

DAI-nothing-without-us

 

 

Very slowly, the world is coming to grips with the fact that many people with dementia can still live good lives. Yes, lives that are productive and where a contribution to society can still be made. It is Day 29 of World Alzheimer’s Month #WAM2015, and our membership os growing. As such, we need to accommodate new members needs.

Dementia Alliance International (DAI) is an organisation where we are living, and hopefully teaching this reality, and our members are encouraged to speak up for themselves, and to contribute as best they can, in any way they wish, and in spite of the varying and changing disabilities imposed on all of us by a dementia. DAI has only been operating since 1 January 2014, but we now the peak body for people with dementia, through collaboration with Alzheimer’s Disease International.

Indeed, we are also bringing to reality, the “nothing about us, without us” slogan.

DAI Membership is growing

Membership of people with dementia in Dementia Alliance International is growing, and therefore, the services and support groups we currently provide have needed to grow two match our increasing membership numbers. Of course, this may mean, sometimes what we have to offer, unfortunately may clash with another organisations services.

Life is like that, but if we are to properly serve our members, we have to hold things at times suitable to them, not us. Naturally, some things we plan may not always suit everyone. It is also why some of us get up for meeting at 5am, or stay up for late meetings at midnight.

DAI is not in business, nor in competition with anyone else. It is, quite simply, an advocacy and support group, of by and for people with dementia. And as our membership continues to grow, we could end up with support group meetings in the same country or region, all being held at the same time, if that is when members want them.

This is especially likely as  the rate of diagnosis is going up at one new diagnosis every 3.2 seconds, and as we have placed a limit on numbers attending support groups at a maximum of 12 people.

DAI is unique

Our uniqueness is that all of our services and support are provided by people with dementia, for people with dementia, whereas other organisations are owned and run by people without dementia. This can be a weakness for us, but it is also one of our strengths.

DAI was set up, in part, because the organisation knows as DASNI, which was originally for people with dementia, was taken over by people with out dementia, and it now offers little for people with dementia, and in fact 2/3 of membership are family care partners.  This is ultimately, the main reason DAI was set up. People with dementia want to run their own race, and DAI did not spring from DASNI, but rather, because they were not necessarily serving what a group of us including the late Richard Taylor, felt were the real needs of people with dementia. We wanted autonomy.

There are many organisations, professionals and interested people, who do not have a diagnosis of dementia, who also run groups and services for us, and for this we are obviously grateful. We cannot do it all, but conversely, nor can they. The advocacy organisations around the world say they have services for people with dementia, but still, most of them are for family care partners and not specifically for us.

People with dementia have felt for a long time that they need their own groups and organisation, and more importantly, need to feel our needs are being met. As we grow in membership, we are simply providing an organisation, that has services including support groups, for our members.

Our point of difference will always be, is that Dementia Alliance International is an advocacy and support group, of, by and for people with dementia, the one thing no other organisation is offering.

In global campaigns to promote dementia friendly communities, having organisations supporting us to ‘do for ourselves’ seems the logical next step, and is also dementia friendly. We may have disabilities, but we will be able to manage our lives independently for longer with support for them, in the same way any other person with any other disability is supported to do so.

DAI support groups

Mick Carmody from Brisbane in Australia is working tirelessly to host and promote support groups for people with dementia all around the world, and he already running them at 5.30 in the morning, and very soon, 6pm at night. Please join him if you would like to be part of a fun group for people with dementia, or support him in his work. Our groups are about supporting each other, about helping newly diagnosed people see their lives are not over, and that they are not alone. They are social as well as support groups, that take place in the privacy of your own home, helping to reduce stigma and isolation. Mick would love to host or set up one for you.

DAI promotes there is life behind a diagnosis of dementia for everyone, and provides a forum for sharing that is like no other in the dementia care sector, or at least that we know of.

Finally, if you from a non English speaking country;

DAI is able to provide the platform for you to run support groups in your own countries, in your own languages. All you need are people with dementia to become members of our organisation.

Oh, and membership, and our services including the support groups, are free.

Copyright: Dementia Alliance International 2015
Editor: Kate Swaffer

“Dementia is not just about old people” #DAM2015 Day 28

Image source: Amazon.com.uk
Image source: Amazon.com.uk

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.

In fact, his first book, Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing in this trilogy has just been awarded the first prize British Medical Association  Book of the Year Award. I have read both books, and can highly recommend them as very readable for anyone who is not an academic or who has a health background.

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. 

Source for all images in this gallery: Shibley Rahman © 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.

Screen Shot 2015-09-28 at 1.01.15 pm

Passing the baton #DAM2015 Day 27

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

The rights of people with disabilities, including people with dementia #DAM2015 Day 24

Professor Peter Mittler, member of  and advisor to Dementia Alliance International on the rights of people with dementia to be included in the UN Convention on the Rights of Persons with Disabilities presented to our members at our Open members Meeting earlier this week.

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.

https://youtu.be/ZZfhtN1-SLU

Editor: Kate Swaffer

The Myths of dementia (2014), by the late Dr Richard Taylor

In honour of the late Dr Richard Taylor, we are posting another of the webinars he hosted for DAI last year, as part of our Master Class series during World Alzheimer’s Month. It is already Day 23 of #WAM2015, and the myths of dementia are still very much there, and our awareness campaigns are still not getting the message through well enough. We do hope this webinar helps to change that.

https://youtu.be/dUNjCCFxf0A

Journey into ‘ALZHEIMERLAND’ by Peter Mittler

Screen Shot 2015-09-22 at 8.21.47 amAs part of our celebrations for World Alzheimer’s Month 2015, or Dementia Awareness Month as we have been calling it, we are proud to publish an excerpt from a chapter in a book, written by one of our members in the UK, Professor Peter Mittler.

Peter Mittler is Emeritus Professor of Special Needs Education at the University of Manchester. He trained as a clinical psychologist, and devoted his career to championing the rights of people with intellectual and developmental disabilities to education and citizenship. He is a former President of Inclusion International, a UN consultant on disability and education and is active in promoting the UN Convention on the Rights of Persons with Disabilities.

He was diagnosed with ‘early, very mild Alzheimer’s’ in 2006, and the article which follows is an updated and revised version of an invited editorial which first appeared under the same title in the journal Dementia [i].

 

JOURNEY INTO ALZHEIMERLAND

In Whitman, L. (ed) People with Dementia Speak Out. London: Jessicca Kinglsey Publishers. 2015

Then

I would probably not have asked for a referral to the local memory clinic if I had not had previous experience of assessing people for dementia in my first job as an NHS clinical psychologist. I remember my discomfort at that time in realising that test findings did not necessarily reflect what people could or could not do in real life situations. That lesson is now part of my own story.

I went to the clinic because my wife and I were concerned about an increasing number of memory lapses, such as not bringing home the right shopping and forgetting to do routine things like switching off lights and closing cupboard doors. I knew that early diagnosis was important and that drugs were now available which could at least slow down the deterioration associated with the disease.

The experience of being on the ‘other side of the table’ at the age of 76 was a bit strange at first, especially when I realised that I had used some of the same memory tests 50 years earlier. My psychological test results showed average or above average functioning in most areas, with the significant exception of tasks involving immediate recall of strings of unrelated words or pictures. I half expected this finding, because when my children were small they could always beat me at games requiring the recall of large numbers of upturned pictures, but a series of brain scans also revealed a greater degree of cortical atrophy (‘holes in the head’) than might be expected at my age. After reviewing all the evidence, including a detailed account of the concerns expressed by my wife, the consultant told us that although Alzheimer’s could only be fully confirmed at autopsy, the balance of probability lay with a diagnosis of “early, very mild Alzheimer’s Disease”. I trusted his experience, politely declined his offer of a second opinion and arranged to donate what was left of my brain to the Brain Bank research programme.

When I first told people about my diagnosis, most were incredulous, dismissing examples of my memory lapses as mere ‘senior moments’ and capping them with more serious examples from their own experience. However, the fact that I do not display ‘obvious’ symptoms of dementia does not mean that the diagnosis is wrong – that I am a ‘false positive’, in the medical jargon.

Now

The good news is that eight years later, the rapid deterioration which I was expecting has not materialised. My psychological test results have not changed over many re-assessments: in fact, the most recent reflects a slight improvement on the first. Even the tests of immediate recall on which I feel I do very badly are now just within the average range for my age.

My day to day functioning in most areas seems to me to be about normal for my age and background. I still sometimes forget to shut drawers or put things back where they belong but claim to get it right more often than not. I can look after myself if necessary and undertake complex journeys.   I feel reasonably competent in driving in familiar areas but am now more watchful and slower at decision making and worried about the annual renewal of my licence.

In many ways, my intellectual and cultural horizons have expanded since I retired from full-time university work 20 years ago. My reading has been enriched to include twentieth century history and politics, as well as travel books and modern literature and I now have a fuller appreciation of music and the visual arts, especially since acquiring a second home in Florence. I have published a memoir[ii], edited a selection of my papers for publication[iii] and contributed several new papers to academic and professional journals on the implementation of the new United Nations Convention on the Rights of Persons with Disabilities which could greatly improve the quality of life and support for all disabled people, including those living with dementia[iv]. Nevertheless, I have decided to stop academic writing because I now find it more difficult and because it takes up too much time which can be better spent in more rewarding activities.

An A* in GCSE Italian in 2008 provided welcome independent evidence that I could still learn, while the high marks that I later received for an Open University degree level module in Italian did more for my self-esteem than my doctorate several decades earlier. Despite my good examination marks and competence in reading and speaking Italian, my ability to understand and follow a conversation is disproportionately low, even under ideal acoustic conditions when I am wearing headphones to listen to a studio-recorded disc. This could be due to Alzheimer’s, old age, or some complex combination of the two. Be that as it may, it is frustrating for me and confusing for Italians who assume that because I can speak the language, they can talk at their normal speed – and all at once.

It is difficult to draw a clear line between the effects of ‘normal ageing’ and Alzheimer’s disease for people at my end of the dementia spectrum. The difficulty is overshadowed in my case by severe deafness which now deprives me of some 70 per cent of normal hearing. My particular combination of dementia and deafness is more than doubly debilitating because it affects the quality of my life and relationships. Although digital hearing aids can amplify sound, they are not yet able to strike a balance between essential foreground information and background noise in social situations and restaurants.   Irrelevant and intrusive music makes it particularly difficult for me to follow a story line on radio or television, though I can still do so in reading.   It is also difficult for me to use the telephone because although I may be able to hear the speaker, it takes me much longer to understand what is being said. Worst of all, even one-to one conversations in quiet conditions can become frustrating because I have misheard or misunderstood what has been said when I thought I had been listening hard to avoid communication breakdowns. These ‘processing difficulties’ are associated with dementia but there is very little knowledge or understanding about their impact on people who also have a significant hearing loss.

Nevertheless, there are times when dementia does seem to be the most likely explanation of behaviours which are completely out of character. One notable example occurred in Italy several years ago when I forgot to move our car from the town square before market day, only to come across it the next morning surrounded by fruit and vegetable stalls and with a policeman bearing down on me, notebook in hand. I had always remembered to move the car in good time, so this lapse was quite uncharacteristic. Furthermore, I had already spent some time in another part of the market that morning without anything triggering a reminder that I should have moved the car on the previous evening.

These episodes are mercifully rare, and I do what I can to prevent them by making a list of day to day tasks. But there are times when a new mistake makes me wonder whether the deterioration slope is about to become steeper, even precipitous, as happened with a friend of ours. Examples include the misreading of a timetable which caused us to arrive at a railway station an hour too early and another day when I made five small mistakes, each of which could be mistaken for ‘professorial absent-mindedness’ but which, taken together, might be the first sign of a more rapid decline.

Next?

Like autism, dementia is on a spectrum. I am fortunate to be at one end of that spectrum but how long can this continue? Annual health checks show that apart from hearing, all my other systems are functioning well for my age but how long will my addled brain be able to keep pace as I go through the second half of my 80s or 90s? When I put this question to my consultant after four years, I was encouraged by his statement that there was no reason why the next four years should be any different. I was sceptical about this prediction but relieved that it seems to have been confirmed.

Although I am now more interested in prognosis than diagnosis, I later asked him if he had considered the alternative classification of ‘mild cognitive impairment’ which was by that time beginning to be more widely used. I also asked him to imagine a scenario in which he is acting as an expert witness on my behalf in a court of law where I am on a serious criminal charge. What evidence would he use to support his diagnosis of Alzheimer’s disease against another expert witness who insisted that I was within normal limits for my age and therefore fully responsible for my actions? After reviewing my tests and brain scans, he stood by his diagnosis, adding that I had “plenty of reserves in my spare tank” and that the medication which I have been taking deserves some credit for the absence of deterioration.

What about the next four years? Time will tell.

References:

[i] Mittler, P. (2011) Editorial – Journey into Alzheimerland. Dementia: the international journal of social research and practice, 10, 2: 145-147 reproduced by kind permission of the editor and Sage Publications.

[ii] Mittler, P. (2010). Thinking Globally Acting Locally: A Personal Journey. Authorhouse and Amazon. www.mittlermemoir.com

[iii] Mittler, P. (2013) Overcoming Exclusion: Social justice through Education. London: Routledge World Library of Educationalists.

[iv] Mittler, P. (2015) The UN Convention on the Rights of Persons with Disabilities: Implementing a Paradigm Shift. In Iriarte, E., McConkey, R. & Gilligan, R. (eds.) Disability in a Global Age: A Human Rights Based Approach. London: Palgrave MacMillan (in press, available from author).

 

Dementia-friendly street party #DAM2015

For Day 19 of World Alzheimer’s Month 2015, or as we have been calling it Dementia Awareness Month 2015, #DAM2015, we wanted to share the fabulous idea of a dementia friendly street party, from one of our members Edie and her partner Anne based in Victoria, Australia.

Image source: Screen shot from http://www.dementiadaily.org.au/novel-idea-dementia-friendly-street-party-to-de-stigmatise-condition/#.VfpXvZfFGjY.facebook
Image source: Screen shot from http://www.dementiadaily.org.au/novel-idea-dementia-friendly-street-party-to-de-stigmatise-condition/#.VfpXvZfFGjY.facebook

The article, Novel idea – dementia-friendly street party to de-stigmatise condition was posted on Dementia Daily, an Alzheimer’s Australia online newsletter.

“Edie and Anne are a couple from Victoria. Edie is living with younger onset dementia. Edie and Anne are calling for the “more informed” among us to take action and assist in spreading helpful and positive messages to de-stigmatise dementia and create more dementia-friendly communities.

And what better way to celebrate than with a big dementia-friendly street party? #ItStartsWithYou

Read the full article here…

Let’s all think about organising a dementia friendly street party soon, or at least as part of our Christmas celebrations?

 

Dementia: Global Perspectives and Priorities #DAM2015

Glenn Rees 1050 x 525

 

 

For Day 18 of World Alzheimer’s Month 2015, #WAM2015, we which have also been calling Dementia Awareness Month #DAM2015, Dementia Alliance International hosted a Webinar for members and supporters, with eminent guest speaker, Mr Glenn Rees, AM, Chair of Alzheimer’s Disease International.

You can read his speech notes below, and view the recording of the session on our YouTube channel, also embedded here;

https://youtu.be/kyRcIg-qnIk

Presentation by Mr Glenn Rees, AM, Chair of Alzheimer’s Disease International:

WORLD ALZHEIMER’S MONTH 2015 #WAM2015

DEMENTIA ALLIANCE INTERNATIONAL WEBINAR 16/17 SEPTEMBER 2015

DEMENTIA: GLOBAL PERSPECTIVES AND PRIORITIES

 

THANK YOU FOR THE OPPORTUNITY TO TALK WITH YOU IN WORLD ALZHEIMER’S MONTH. SLIDE 2 A LOT IS HAPPENING DURING THE MONTH AND I WOULD BE INTERESTED IN YOUR VIEWS ON THE THEME AND THE ACTIVITIES.

IT GAVE ME GREAT PLEASURE DURING THE LAST HALF OF 2015 TO ADVOCATE FOR ADI TO ENTER A PARTNERSHIP WITH DAI RATHER THAN ESTABLISH AN ADI GROUP.

I HAVE BEEN AROUND LONG ENOUGH TO KNOW THAT, HOWEVER WELL-INTENTIONED, GROUPS THAT ARE SET UP WITHIN ORGANISATIONS ARE SUBJECT TO CONTROL WHICH OVER TIME LEAD TO FRUSTRATION AND TENSION

EQUALLY IT IS IMPORTANT NOT ONLY THAT DAI HAS POSITIONS OF ITS OWN BUT THAT ADI TOO HAS THE CAPACITY TO PURSUE ISSUES IN THE WAY IT THINK BEST, FOR EXAMPLE IN RESPECT OF THE BUSINESS MODEL FOR CONFERENCES OR THE MOST EFFECTIVE WAY TO PROSECUTE GLOBAL ADVOCACY.

SO PARTNERSHIP BASED ON MUTUAL RESPECT IS THE BEST WAY FORWARD AND SLOWLY I THINK WE ARE DEVELOPING A PLATFORM FROM WHICH PEOPLE WITH DEMENTIA WILL BENEFIT

A START HAS BEEN MADE. DAI HAS DETERMINED PROJECTS WHICH ARE A PRIORITY FOR SUPPORT BY ADI AND ESTABLISHED A BASIS TO DEVELOP CONFERENCES RUN BY PEOPLE WITH DEMENTIA THEMSELVES, STARTING WITH THE REGIONAL CONFERENCE IN NEW ZEALAND NEXT YEAR

I DETECT NOTHING BUT SUPPORT WITHIN THE BOARD AND THE ADI OFFICE FOR THE PARTNERSHIP AND CLEARLY THERE ARE ALZHEIMER ORGANISATIONS LIKE ALZHEIMER’S SCOTLAND AND NEW ZEALAND WHO HAVE A DEEP COMMITMENT TO THE PRACTICAL IMPLEMENTATION OF HUMAN RIGHTS FOR PEOPLE WITH DEMENTIA.

I WANTED TO START WHAT I SAY TO YOU IN THAT WAY BECAUSE IT IS IMPORTANT THAT YOU UNDERSTAND ADI WELCOMES THE POTENTIAL OF DAI TO GROW AS A FORCE IN ADVOCATING FOR THE RIGHTS OF PEOPLE WITH DEMENTIA. I DOUBT I CAN UNDERSTAND THE MANY FRUSTRATIONS MANY IF NOT ALL YOU FACE IN YOUR DAY TO DAY LIFE BUT IT IMPORTANT YOU UNDERSTAND THAT ADI REGARDS DAI AS AN EQUAL PARTNER.

SLIDE 3 WHAT I WILL TALK ABOUT TODAY IS:

  • THE 2015 WORLD ALZHEIMER’S REPORT THE GLOBAL IMPACT OF DEMENTIA
  • THE OPPORTUNITIES FOR ADVOCACY OVER THE NEXT 12 MONTHS
  • THE PRIORITIES THAT ADI WILL BE SEEKING TO INCLUDE IN A GLOBAL CALL FOR ACTION AT THE WHO NEXT YEAR
  • THE DRIVERS FOR CHANGE

SLIDE 4 I AM NOT GOING TO TEST YOU ON THE 80 PAGES OF THE 2016 REPORT BUT I DO HOPE YOU HAVE HAD AN OPPORTUNITY TO LOOK AT IT. IT IS A WELL RESEARCHED DOCUMENT THAT PROVIDES AN EXCELLENT BASIS FOR POLITICAL ADVOCACY AT THE GLOBAL LEVEL. IT IS PROBABLY AS WEARYING FOR YOU AS IT IS FOR ME TO PLAY THE NUMBERS GAME BUT IT IS THE IMPACT OF DEMENTIA ON HEALTH AND CARE SYSTEMS THAT WE HAVE TO GET ACROSS AS WELL AS THE HUMAN COST.

THE KEY FINDINGS ARE THAT THERE HAS BEEN A 12-13 % INCREASE IN THE GLOBAL ESTIMATES OF PEOPLE WITH LIVING WITH DEMENTIA SINCE THE 2009 REPORT WITH MUCH OF THE INCREASE TAKING PLACE IN LOW AND MIDDLE INCOME COUNTRIES. THE NUMBERS ARE EXTRAORDINARY

  • SLIDE 58 MILLION PEOPLE WORLD WIDE ARE LIVING WITH DEMENTIA IN 2015. THIS NUMBER WILL GROW TO 131.5 MILLION BY 2050
  • SLIDE 6 THERE WILL 9.9 MILLION NEW CASES OF DEMENTIA IN 2015
  • SLIDE 7 THE TOTAL ESTIMATED COST OF DEMENTIA IS US $813 BILLION, A FIGURE PROJECTED TO INCREASE BY 2018 TO US $! TRILLION – THAT IS A NUMBER WITH TWELVE ZEROS – A BIT OUTSIDE MY COMPREHENSION!

SLIDE 8 THERE IS A GREAT DEAL OF ANALYSIS IN THE REPORT BUT TWO ISSUES ARE WORTH A SPECIAL MENTION

FIRST, THE AUTHORS ASSUME IN THE PROJECTED FIGURES THAT THE PREVALENCE OF DEMENTIA WILL NOT VARY OVER TIME AND THAT IT IS THE AGEING OF THE POPULATION THAT ALONE DRIVES THE PROJECTED INCREASES. IN REALITY OF COURSE THE PREVALENCE COULD BE AFFECTED BOTH BY A CHANGING NUMBER OF NEW CASES AND LENGTH OF LIFE.

FOR EXAMPLE THE TREND IN HIGH INCOME COUNTRIES TO LESS SMOKING, LOWER CHOLESTEROL, LOWER BLOOD PRESSURE AND PHYSICAL EXERCISE MIGHT REDUCE RATES. ON THE OTHER HAND THE PREVALENCE OF DIABETES AND OBESITY IS INCREASING.

IN LOW AND MIDDLE INCOME COUNTRIES THE RATES MAY MOVE ADVERSELY AS TRENDS IN CARDIOVASCULAR DISEASE MOVE IN AN ADVERSE DIRECTION.

THE RESEARCHERS CONCLUDE AT THIS STAGE THAT THE RESEARCH BASE IS NOT SUFFICIENT TO MAKE CHANGES IN RISK FACTOR PROFILES

SECOND, THE AUTHORS NOTE WITH CONCERN THAT THE REVISED GLOBAL BURDEN OF DISEASE ESTIMATES FAIL TO CAPTURE THE FULL IMPACT OF CHRONIC DISEASES AND ESPECIALLY DEMENTIA ON DISABILITY, NEEDS FOR CARE AND ATTENDANT SOCIETAL COSTS. THIS FAILURE IS IMPORTANT BECAUSE IT MAKES GLOBAL ESTIMATES AN UNRELIABLE BASIS FOR PRIORITISING RESEARCH, PREVENTION AND HEALTH OR SOCIAL CARE AMONG OLDER PEOPLE.

I HOPE THE RPEORT IS HELPFUL IN YOUR ADVOCACY. WHILE SOME OF YOU MAY FEEL THE FIGURES CAN TRIVIALISE THE ISSUES I KNOW FIRST-HAND WHAT THE POLITICAL REACTION WAS IN AUSTRALIA TO THE US $1 TRILLION FIGURE. SOUND BITES ARE IMPORTANT.

SO WHAT ARE THE OPPORTUNITIES FOR ADVOCACY?

WE CAN I THINK BE WELL PLEASED WITH THE INCREASED GLOBAL RECOGNITION OF DEMENTIA AS A HEALTH PRIORITY WHILE BEING REALISTIC ABOUT THE TIME IT WILL TAKE TO RESULT IN IMPROVEMENTS IN QUALITY OF LIFE FOR THOSE WITH DEMENTIA AND THEIR FAMILY CARERS.

AFTER ALL IT HAS TAKEN MANY YEARS FOR SOME HIGH INCOME COUNTRIES TO MAKE DEMENTIA A FOCUS FOR NATIONAL PLANNING OR ACTION.

I REMAIN OF THE VIEW THAT AT THE GLOBAL AND LOCAL LEVEL THE NEED IS FOR REVOLUTION AND NOT EVOLUTION IF WE ARE TO TACKLE STIGMA AND THE ENDURING VIEW THAT DEMENTIA IS AN INEVITABLE PART OF AGEING RATHER THAN A CHRONIC DISEASE.

SLIDE 9 SO WHAT ARE THE POSITIVES AT THE GLOBAL LEVEL?

FIRST, THE ESTABLISHMENT OF AN EVIDENCE BASE. THE WORK OF MARTIN PRINCE AND THE 10/66 RESEARCH GROUP TOGETHER WITH ADI IN PUBLISHING WORLD ALZHEIMER’S REPORTS HAVE ENSURED A BASIS FOR SHARING GLOBALLY KEY INFORMATION.

THE INFORMATION BASE IS MATCHED IN IMPORTANCE BY A CHANGE IN LANGUAGE THAT EMBRACES DEMENTIA AS A PUBLIC HEALTH ISSUE, DEMENTIA AS A CHRONIC DISEASE, THE LANGUAGE OF PREVENTION AND REHABILITION AND THE RECOGNITION THAT DEMENTIA IS AS MUCH A SOCIAL AS MEDICAL ISSUE.

THE FIRST VICTORY IN ANY REVOLUTION IS TO HAVE OTHERS USE YOUR INFORMATION AND LANGUAGE. WE ARE NOT THERE YET BUT A GOOD START IS BEING MADE.

SLIDE 10 SECOND, THE MULTIPLICITY OF CHANNELS THROUGH WHICH TO PROSECUTE THE ISSUE OF DEMENTIA. TO MAKE THE POINT LET ME LIST THEM QUICKLY IN WHAT I PERCEIVE TO BE SOME ORDER OF IMPORTANCE

  • THE WORLD HEALTH ORGANISATION AND THE RECENT MINISTERIAL DEMENTIA MEETING WHICH RESULTED IN A DECLARATION
  • THE WORLD DEMENTIA COUNCIL ESTABLISHED AS A PLATFORM FOR GOVERNMENTS, INDUSTRY, NGOS AND PEOPLE WITH DEMENTIA TO SET THE AGENDA FOR TACKLING DEMENTIA
  • THE PAN AMERICAN PACIFIC HEALTH ORGANISATION AND ITS WORK ON AN ACTION PLAN TO SUPPORT LOWER AND MIDDLE INCOME COUNTRIES IN THE REGION OF THE AMERICAS
  • THE 2014 GLASGOW DECLARATION AND THE ADVOCACY OF ALZHEIMER’S EUROPE ON A EUROPEAN DEMENTIA STRATEGY
  • THE WORK BEING DONE BY THE ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT ON AGED CARE INCLUDING THE QUALITY OF CARE
  • THE WORK OF THE NON COMMUNICABLE DISEASE ALLIANCE IN ESTABLISHING A BASIS FOR COOPERATION ON PREVENTION ACROSS THE MAJOR CHRONIC DISEASES
  • THE GLOBAL ALZHEIMER’S AND DEMENTIA ACTION ALLIANCE FORMED IN RESPONSE TO THE G7 INITIATIVE BY INTERNATIONAL NGOS TO ENHANCE GLOBAL EFFORTS TO COMBAT STIGMA, EXCLUSION AND FEAR
  • MECHANISMS TO IMROVE ALL ASPECTS OF DRUG DEVELOPMENT
  • INCLUSION OF DEMENTIA WITHIN THE CONVENTION ON THE RIGHTS OF PEOPLE WITH DISABILITIES (CPRD)

THE CRPD CONVENTION IS A WIDE-RANGING AND COMPLEX DOCUMENT BUT SOME OF THE PROVISIONS THAT RELATE TO DEMENTIA ARE

  • ARTICLE 2 ON EQUAL RECOGNITION BEFORE THE LAW E.G. SUPPORTED DECISION MAKING THAT RESPECTS THE PERSON’S CAPACITY)
  • ARTICLE 19 (ON LIVING INDEPENDENTLY AND BEING INCLUDED IN THE COMMUNITY AND,
  • ARTICLES 24, 27, 28 AND 30 WHICH INCLUDE COMPREHENSIVE ACCESS TO SERVICES INCLUDING EDUCATION, WORK, PARTICIPATION IN RECREATIONAL AND SPORTING ACTIVITIES

THE BOARD OF ADI HAS ASKED THE CEO TO APPROACH ALZHEIMER’S SCOTLAND WITH A VIEW TO WORKING TOGETHER ON DEMENTIA AND HUMAN RIGHTS.

THE CHALLENGE WHICH I WILL COMEBACK TO LATER IS HOW TO SUSTAIN THIS INTEREST, AVOID DUPLICATION OF EFFORT AND ACHIEVE COORDINATION.

SLIDE 11 THIRD, THE INCREASING RECOGNITION OF DEMENTIA AS A PUBLIC HEALTH ISSUE AND WITH THAT THE POTENTIAL OF PREVENTION.

TWO OF THE MOST IMPORTANT CHANGES IN MESSAGING IN THE TIME I WAS CEO OF ALZHEIMER’S AUSTRALIA WERE THAT DEMENTIA IS NOT A NATURAL PART OF AGEING AND THAT IT MAYBE PREVENTABLE.

THIS OFFERS SOME HOPE OF ACTION WHILE THE LONG WAIT CONTINUES FOR MEDICAL TREATMENTS.

THE OTHER MESSAGE IS THAT DEMENTIA IS AS MUCH A SOCIAL AS A MEDICAL ISSUE – HENCE THE IMPORTANCE OF S11 OCIAL ACTION TO COMBAT STIGMA.

FOURTH, THE PRIORITY GIVEN AT THE GLOBAL LEVEL TO THE IMPORTANCE OF RESEARCH FUNDING IN ORDER TO IDENTIFY THOSE AT RISK OF DEMENTIA, TO FIND NEW TREATMENTS AND TO TRANSLATE RESEARCH INTO PRACTICE.

THE RESULT IS INCREASED RESEARCH FUNDING IN RECENT TIMES. HOWEVER, IT IS WELL BELOW WHAT IS REQUIRED IF IT IS TO BE TAKEN AS SERIOUSLY AS IS FOR EXAMPLE CANCER AND CARDIO VASCULAR MEDICAL RESEARCH.

BUT WHATEVER OUR DOUBTS THE COMMITMENT MADE BY THE THEN G8 TO FIND A CURE FOR DEMENTIA BY 2025 IT IS A USEFUL POLITICAL HOOK.

SO HAVING GOT TO THE POINT OF CAUTIOUS OPTIMISM ABOUT PROGRESS AT THE GLOBAL LEVEL OVER THE LAST 18 MONTHS IN GETTING DEMENTIA ON THE POLITICAL AGENDA I SUGGEST TWO KEY QUESTIONS REMAIN.

SO HOW DO WE FOCUS THE GLOBAL AGENDA?

SLIDE 12 I ASKED YOU ALL TO LOOK AT THE CALL TO ACTION IN PARAGRAPH 7.5 OF THE 2015 REPORT BECAUSE I BELIEVE IT SETS OUT IN SHORT SPACE WHAT ADI SHOULD BE SEEKING TO ADVOCATE FOR OVER THE NEXT 12 MONTHS.

THE ELEMENTS WE HAVE INCLUDED AS ELEMENTS FOR PLANNING FOR DEMENTIA AT THE GLOBAL AND COUNTRY LEVEL HAVE THE OBJECTIVE OF SUPPORTING THE PERSON WITH DEMENTIA TO STAY IN THE COMMUNITY FOR AS LONG AS POSSIBLE INCLUDE

  1. AWARENESS RAISING OF DEMENTIA
  2. CREATION OF DEMENTIA FRIENDLY COMMUNITIES THAT REDUCE STIGMA ASSOCIATED WITH THE DISEASE
  3. PROMOTION OF RISK REDUCTION MEASURES
  4. MEASURES TO IMPROVE DIAGNOSIS AND REDUCE THE AVERAGE LENGTH OF DIAGNOSIS
  5. SUPPORT FOR FAMILY CARERS INCLUDING THROUGH INFORMATION, SOCIAL SUPPORT , RESPITE AND COUNSELLING
  6. ACCESS TO LONG TERM COMMUNITY AND RESIDENTIAL DEMENTIA CARE SERVICES AND TO ENHANCED CARE FOR PEOPLE DEMENTIA IN HOSPITALS
  7. SLIDE 13 A COMMITMENT TO PERSON CENTRED CARE AND TO CARE THAT MINIMISES THE USE OF MEDICAL AND PHYSICAL RESTRAINT
  8. WORKFORCE STRATEGIES INCLUDING TRAINING
  9. THE USE OF TECHNOLOGY TO ASSIST THE PERSON WITH DEMENTIA IN THE HOME AND TO EXTEND SERVICE REACH IN RURAL AREAS
  10. RECOGNITION THAT DEMENTIA DESERVE GOOD QUALITY END OF LIFE CARE WITH RESPECT TO THEIR DIGNITY AND PERSONAL WISHES

THERE IS OF COURSE A RECOGNITION TOO OF THE NEED FOR INCREASED DEMENTIA RESEARCH FUNDING.

SLIDE 14 LET ME MAKE THREE OBSERVATIONS ABOUT HOW WE SHOULD APPROACH ADVOCACY

FIRST TO EMPHASISE THE NEED FOR DEMENTIA PLANS – PREFEREABLY WITH FUNDING BUT EVEN WITHOUT THEY ARE A FIRST STEP IN RECOGNITION OF THE ISSUES. ADI EXPECTS 25 COUNTRIES TO HAVE PLANS BY THE END OF THISYEAR.

SECOND TO INSIST ON SYSTEMIC CHANGE THAT TOUCHES ALL PARTS OF THE HEALTH AND CARE AND SOCIAL SUPPORT. WE ARE NOT GOING TO SUCCESSFULLY TACKLE DEMENTIA FOR EXAMPLE IN RESPECT OF TIMELY DIAGNOSIS AND DEMENTIA IN HOSPITALS IF WE DO NOT TAKE A SYSTEMS WIDE APPROACH. IT IS ONLY BY CHANGES SYSTEMS THAT PEOPLE WITH DEMENTIA WILL BE ABLE TO EXERCISE THEIR RIGHT TO CARE AND SUPPORT AS ALZHEIMER’S SCOTLAND ARE DEMONSTRATING

THIRD TO INSIST THAT THE MISTAKES OF HIGH INCOME COUNTRIES ARE NOT REPLICATED IN LOW AND MIDDLE INCOME COUNTRIES BY GIVING PRIORITY TO RESIDENTIAL CARE AT THE EXPENSE OF COMMUNITY BASED CARE AND SUPPORT THAT ENABLES THE PERSON WITH DEMENTIA TO STAY IN THE COMMUNITY FOR AS LONG AS POSSIBLE.

I WOULD WELCOME YOUR RESPONSE IN DISCUSSION THE PRIORITIES THAT HAVE BEEN ADVANCED BY ADI FOR A CALL TO ACTION

SLIDE 15 SO FINALLY WHAT ARE THE DRIVERS OF CHANGE?

FIRST, WE NEED POLITICAL LEADERSHIP OF THE KIND UK PRIME MINISTER CAMERON HAS DELIVERED THROUGH THE G7 GLOBAL DEMENTIA CHALLENGE. BUT IT HAS BEEN CIVIL SOCIETY THAT HAS HELPED SHAPE THAT INITIATIVE BEYOND RESEARCH AND STREAMLINING THE REGULATION OF MEDICINES TO INCLUDE PEOPLE WITH DEMENTIA, DEMENTIA CARE AND PREVENTION.

IF WE WANT FUNDING AND ACTION WE NEED TO BROADEN OUT THE POLITICAL COUNTRY SUPPORT FOR THE GLOBAL CHALLENGE BEYOND THE UK. THIS IS THE MISSING PIECE OF THE PUZZLE. WHAT OTHER COUNTRIES WILL STEP UP TO THE PLATE?

THE 2015 REPORT FLOATS THE POSSIBILITY OF A TRANSFER OF POLITICAL LEADERSHIP TO THE G20 GROUP OF NATIONS ASSUMING CONTINUED COMMITMENT AND ENGAGEMENT OF THE G7 GROUP OF NATIONS. THIS IS CRITICAL IN MY VIEW AS THE G20 ACCOUNT FOR ABOUT 80% OF THE WORLD’S POPUATION OF PEOPLE WITH DEMENTIA

SECOND, AMONG THE INTERNATIONAL ACTORS THE WORLD HEALTH ORGANISATION IS KEY. THE WORLD HEALTH ORGANISATION IS POSITIONED TO DO WHAT NO OTHER CAN DO IN DRAWING TOGETHER MEMBER COUNTRIES TO DISCUSS AND PRIORITISE ACTION IN PUBLIC HEALTH POLICY. THE RECENT MINISTERIAL COUNCIL IS EVIDENCE OF THAT AND MADE A GREAT START IN PRODUCING A WELL WORDED DECLARATION – BUT THAT WAS WHAT IT WAS, WELL WORDED WITH NO HINT OF ACTION.

SO ADI THROUGH OUR CEO IS WORKING WITH GOVERNMENTS FOR A RESOLUTION IN 2016 AT THE WORLD HEALTH ASSEMBLY TO LAY THE BASIS FOR A CALL TO ACTION.

WE WILL GET THIS COMMITMENT ONLY IF WE HAVE COUNTRIES TO SUPPORT DEMENTIA AS A HEALTH PRIORITY.

THIRD, ON ANY GLOBAL SCENARIO WE NEED A STRONG ADI AND STRONG ALZHEIMER’S ORGANISATIONS. IT IS THE EMOTIONAL ENERGY AND COMMITMENT OF PEOPLE WITH DEMENTIA AND THEIR FAMILY CARERS THAT HAVE CREATED AWARENESS OF DEMENTIA AND THE NEED FOR REVOLUTION OVER DECADES.

AS THE CHAIR OF ADI I CAN SAY IT IS A MIRACLE THAT ADI HAS MAINTAINED SUCH A FORCEFUL PRESENCE AT THE GLOBAL LEVEL OVER THE LAST 18 MONTHS WITH SUCH LIMITED RESOURCES. AND THESE RESOURCES ARE ALSO REQUIRED TO SUPPORT NEW AND EMERGING ALZHEIMER’S ORGANISATIONS IN LOW AND MIDDLE INCOME COUNTRIES.

THE WORK OF ADI NEEDS TO BE SUPPLEMENTED BY NEW PARTNERSHIPS THROUGH THE WORK OF THE GLOBAL ALZHEIMER’S AND DEMENTIA ALLIANCE AND ALZHEIMER’S ORGANISATIONS.

INDIVIDUAL ALZHEIMER’S ORGANISATIONS CAN PLAY A ROLE WAY BEYOND THEIR BORDERS. FOR EXAMPLE, AS ALZHEIMER’S AUSTRALIA DID BY ADVOCATING FOR DEMENTIA TO BE A PRIORITY ON THE BASIS OF ECONOMIC AND SOCIAL ANALYSIS, AS ALZHEIMER’S SCOTLAND HAS DONE IN CONSUMER ADVOCACY AND MORE RECENTLY IN MANDATING POST DIAGNOSTIC SUPPORT AND AS JAPAN AND THE UK HAVE DONE MORE RECENTLY IN IMPLEMENTING DEMENTIA FRIENDLY COMMUNITIES AND DEMENTIA FRIENDS.

THERE ARE NO PROMISES IN ADVOCACY ONLY HARD WORK AND COMMITMENT. MY DREAM IN THE NEXT 12 MONTHS IS TO ACHIEVE IN THE GLOBAL ADVOCACY OF ADI A CALL FOR ACTION IN THE WHO AND THE ATTENTION OF THE G20.

THANK YOU AGAIN FOR THE OPPORTUNITY TO SPEAK TO YOU AND I LOOK FORWARD TO SOME DISCUSSION NOW.

The powerpoint is also available here DAI World Alzheimer’s Month webinar and here:

DAI World Alzheimer’s Month webinar (Converted)