Tag Archives: Dementia Awareness Month

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: 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)

Dementia friendly: who is doing it well? #DAM2015 Day 14

Screen Shot 2015-09-14 at 9.52.31 amFor Day 14 of Dementia Awareness Month 2015, it seemed important to talk about the dementia friendly communities initiatives going on around the world. Being dementia friendly is less about being ‘friendly’ – we should all be friendly and kind – and more more about:

    • Human rights
    • Respect
    • Non discrimination
    • Full inclusion
    • Our right to citizenship
    • Autonomy
    • Equality
    • Equity
    • Access
    • Dementia Enabling Environments
    • Support for disAbilities

Becoming dementia friendly is not rocket science, and to begin with, organisations who are promoting the dementia friends messages and campaigns, need to start within, so that they too, are actually walking their own talk.

The only community that DAI knows of, authentically working on their own community becoming dementia friendly, is the Kiama Municipal Council, south of Sydney.

You can read it in full on their website, but why they are unique, is due to their willingness and commitment to set up a Local Dementia Advisory Group, made up of people with dementia and their support partners if needed.

The Kiama Dementia Friendly Communities Pilot Project:

The project partners, together with people living with dementia and their supporters, as well as interested members of the Kiama community, developed the Kiama Dementia Action Plan in 2015. The plan was informed by people living with dementia in Kiama via research undertaken by the University of Wollongong (see below).

Two local groups formed to develop and implement the Action Plan.

  • The Dementia Alliance includes people with dementia and their supporters, and relevant stakeholders (e.g. members from Kiama council, transport services, and aged services)
  • The Dementia Advisory group which is made up exclusively of people with dementia and their supporters. They will oversee the activities of the Dementia Alliance, as well as develop their own activities.

Go to the DEMENTIA Illawarra Shoalhaven website for their full article on their efforts towards becoming dementia friendly. It is admirable, and we, people with dementia, are waiting for the rest of the world to catch up by setting up their own Local Dementia Advisory Groups in their own DFC projects and initiatives.

Without that, this work continues to be, mostly, “about us, without us.”

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2015