Tag Archives: 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

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)

Diabetes type 2 and dementia #DAM2015 Day 17

Dr Chris Moran
Dr Chris Moran

For Day 17,  Dementia Awareness Month 2015, #DAM2015, we thought the following article about some new research would be of interest to our members and supporters. The rise of Type 2 diabetes is increasing, and it is one disease that is very modifiable through diet and exercise.

Monash researchers confirm link between diabetes and Alzheimer’s disease

Type 2 diabetes may be associated with brain changes that occur in Alzheimer’s disease according to latest research at Monash University.

Published today in Neurology, the medical journal of the American Academy of Neurology, this collaborative research study was conducted by researchers at the Stroke and Ageing Research Group, Monash University and Monash Health, together with researchers in Tasmania and Western Australia. The researchers looked at the relationship between type 2 diabetes and the loss of brain cells and their connections.

“For the first time, we’ve shown that type 2 diabetes is associated with increased in-vivo levels of a biomarker also found in Alzheimer’s disease,” said Geriatrician and study author Dr Chris Moran.

The study found that people with diabetes had greater levels of a protein called tau in their spinal and brain fluid.

Read the full report here…

Editor: Kate Swaffer

“I have a dream”, says Mick Carmody #DAM2015 Day 16

One of our newly co-opted Dementia Alliance International Board members, Mick Carmody has been writing poetry since his diagnosis of dementia, something that is new for him, and one of the gifts of his diagnosis. He has written for us, to share as part of our daily blog series for Dementia Awareness Month 2015.
Mick Carmody on ABC television, 2015
Mick Carmody on ABC television, 2015

Mick writes today especially for DAI members and our supporters:

“Having Dementia is challenging enough for most of us to endure. The thought of what is yet to come can become life consuming to those who choose to let it be that way. Many forms of dementia present different challenges for all who live with this disease.
People invariably ask me about my positive attitude towards something that will eventually see me and my family go through hell. Do I think about it? What stage are you at? You know there are seven stages?
You certainly are remarkably brave and strong is often said. If it is important to one and all what stage I am at I will ask my Geriatrician at my next visit. How can you possibly be so positive knowing what is coming, I often get asked, don’t you get scared.
I am human like everybody else and I would not be if I did not from time to time feel sad, depressed and wonder if all of this is really worth it. I feel that remaining positive is like running as fast as you can to always stay in front of the fog that envelopes you if you stop or slow down.
I have feelings like everybody else and some comments do cut straight to the bone, but, as my experience grows I choose to answer these comments so as to turn the situation around and leave them with something to think about while their mouth is open catching flies.
I am and always will be positive and strong choosing not to dwell but get off my butt and spread the word about people living with dementia and how we can live a life that is full and set our own goals and destiny.
No longer will the public have a perception of us sitting in the corner, dribbling and staring at the ground.
We will take our rightfull place on each and every board and have full inclusion of every decision made for us and about us. We will stand up and be heard.”
Mick closed with this quote:
I HAVE A DREAM  (Dr Martin Luther King Jnr)
The image above of Mick was taken by his daughter of him during an interview played on ABC television earlier this month. Also, listen to the  612 ABC Brisbane radio interview and below,  you can watch the television interview  have been given permission to publish as a fuller version than shown on television, here:

Author: Mick Carmody
Editor: Kate Swaffer

The value of speech pathology, Anne Kavanagh #DAM2015 Day 15

With permission, for Day 15 of Dementia Awareness Month 2015 #DAM2015, we are posting an article first shared on the Young Onset Dementia Support Group Facebook Group, run by psychologist Denise Craig. It was written by a speech pathologist,

Anne Kavanagh is an experienced speech language pathologist working with people with various neurological conditions in the Cairns community, including people with progressive conditions such as Parkinson’s Disease, Motor Neurone Disease, Dementias, and people with acquired neurological conditions such as stroke and brain injury.

Source: YoungOnsetDementiaFacebookSupportGroup
Source: YoungOnsetDementiaFacebookSupportGroupAnne Kavanagh writes:

Anne writes:

“What do I need the Speechie For?

You’re sitting in your doctor’s room and she’s told you she wants to refer you to a Speechie! “Why?” you ask, “I can talk just fine!”

A Speechie is a Speech Language Pathologist, an allied health professional whose university training includes how to assess the way people use language to let others know what they’re thinking and to understand what people are saying. Writing and speaking aloud our thoughts, thinking about and planning for the future, is what separates us from our animal coinhabitants.

Our communication is what humanises us, and large portions of our brain are devoted to it.

When you think about it it’s pretty obvious that we need to have a store of words and their meanings in our memory. We begin to build that store, our vocabulary, in early childhood and we continue to expand it throughout our lives.

Speech itself is a complicated muscle activity, so to say our words aloud we also need to have a programme of sound patterns stored within our brain to produce each sound we make (ie. how and where to move our tongue, and our lips, to shape the breath vibrating through our vocal cords into sounds). Then we have to sequence all those sounds together into a word. Next we need to string together words into sentences, according to the grammar rules of our language, so that people around us can understand what we’re trying to tell them. While all this is going on, inside our minds we are formulating the next idea to convey, and it all happens in milliseconds! When Dementia hits there will be a point in time when any, or even all, of the brain functions that are involved in your ability to tell people what you are thinking, and understand what they are saying, will be affected.

Not all Dementias are the same so for one person their ability to put together their thoughts well enough to express their ideas may be affected, while for another they may not recognise or remember the name of objects or people with whom they are familiar but can still carry on a conversation using “small talk”.

So when your doctors tells you they think it’s a good idea to see a Speech Language Pathologist, they are recommending an assessment of your speech and language skills to determine what part of your communications are affected, and what can be done to help you manage it. Your doctor may have noticed some or all of the following:

• Difficulty comprehending spoken or written language, particularly single words

• Difficulty comprehending word meanings

• Difficulty naming objects

• Difficulty retrieving correct words in speech

• Frequent pauses in your speech while searching for words

• Slow speech

• Difficulty repeating phrases or sentences

• Difficulty speaking

• Hesitant, halting speech

• Making errors in speech sounds

• Difficulty understanding sentences

• Using grammar incorrectly

When a Speech Language Pathologist determines which parts of your communication skills are working well and which are not, you may then be prescribed some activities or strategies that could help you maintain, improve or manage within your abilities.

Some ideas are:

• Use your writing skills to record information. For example appointments in a diary; keep a journal of an event or activity that you can then share with your partner, children, family or friends; prepare your questions for your doctor ahead of your appointment.

• If your visual skills are stronger than writing then keep photo journals. In these techno times use the tools available to your advantage, like the camera on your phone to “snap” a scene that will help you recall and then communicate an experience. If you can’t work the camera then ask for help…most “youngies” would know how to work it!

• Perhaps your auditory skills are stronger so record spoken information and listen back. Another advantage of our techno times is easy access to recording apps. Be diligent with labelling your recordings to help you find the stored information you need. Get help if that labelling is difficult for you.

• Stimulate your vocabulary any way you can by using written, picture, photo or auditory exercises to help you recall the items, events and people you want to. Practice speaking those words and phrases.

• Talking about the meaning of a word can help if you can’t recall the actual word as sometimes it’s easier to give the clues and let others provide the name if it helps a conversation continue.

• Make a list of all your medications, including vitamins and supplements. Photograph them if you need to and make up a visual schedule to help you remember when to take them, or to help you fill your medication dosette.

• Take a family member or friend along to help you communicate if you feel you need them.

• Ask for important information to be written down, and take brochures if they are available.

Losing the ability to communicate is distressing and incredibly frustrating. Friends and family members can make communication easier by:

• Paying close attention to you and your gestures and facial expressions

• Giving you feedback about the need for clarification

• Providing you with more time for communication

• Confirming information with you

• Keeping their statements relatively brief

• Offering reduced numbers of choices per statement so you can consider them one at a time

• Supplementing their speech with gestures

If you have children and are concerned about your communications with them then try to:

• Find activities you can enjoy together.

• Stay engaged and talk with your children honestly about what you’re experiencing.

• Make your child’s school counsellor and/or social worker aware of your condition and problems with communication. Let them know the best way to provide you with information.

• Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They’ll appreciate your sharing your wisdom and memories.

Speech Language Pathologists are important members of the team of professionals who are there to help you understand and manage the many challenges of dementia and communication.

You know that annoying problem you may be having with drinks seeming to go down the wrong way, making you cough, splutter and get watery eyes? Well Speech Language Pathologists also specialise in swallowing problems, but that topic will have to wait until the next blog”.

Our sincere thanks to Denise and Anne for their permission to share this information here with our members, and to Anne for generously sharing her wisdom.

Editor: Kate Swaffer

 

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

No evidence you can ‘catch’ Alzheimer’s disease #DAM2015 Day 13

Many in the media continue to write and therefore spread harmful and hurtful misrepresentations about dementia, stories about the causes, the very inaccurate ‘soon to be here’ cures, and most of the time, usually using offensive language.

For Day 13 of Dementia Awareness Month 2015, we thought we should talk about one such article, from last week. There has been a lot of confusion about a number of articles from last week, claiming you can catch Alzheimer’s Disease, so with their permission, I have added the easily understandable response from Alzheimer’s Scotland to this sensationalist and irresponsible journalism.

Screen Shot 2015-09-12 at 6.39.25 amToday’s story on ‘catching’ Alzheimer’s disease

 Published by Alzheimer’s Scotland on Thursday 10 September 2015

“A study was published today (in Nature) which stated that the protein beta-amyloid was found in the brains of eight people who had been who had previously injected with human growth hormone. It was suggested that these people would have therefore gone on to develop Alzheimer’s disease. The protein was observed in seven of the eight brains examined.

Some of today’s headlines have suggested that people can ‘catch’ Alzheimer’s disease, that it is in some way contagious, or that it can be caught through medical or surgical procedures. 

There is no evidence of this. 

Alzheimer Scotland are deeply disappointed by the sensationalist and irresponsible nature of much of today’s coverage.

While this study is interesting, it is far too small to draw any conclusions.

Go to their website to read the full response to this irresponsible journalism.

Editor: Kate Swaffer

Living with dementia, by Nina Baláčková

For Day 12 of Dementia Awareness Month 2015, we are featuring Nina Baláčková from Czechoslovakia. Thank you Nina for sharing your story of living with dementia with our other members and supporters.

Nina Baláčková and Kate Swaffer at ADI Taipei 2013
Nina Baláčková and Kate Swaffer at ADI Taipei 2013

Nina writes: When I was diagnosed with Alzheimer’s Disease in 2007 I fell into depression for several months. Thanks to antidepressants, support of my family, friends, strong will, and faith I started to train my memory, to attend exercise and English courses again.

Since that time I have got a new way of life.

Sometimes more difficult – for me and my family too, but still happy way.

I found that I need to manage my time very well. Sometimes my husband helps me. For example: I promised my daughter to take care of my granddaughter. But I didn’t write it into my diary. The next day some organisation invited me for the same day to speak about dementia. Fortunately, my husband heard it and told me that it was not possible that I had to be with Veronika…

So I divide time between our four grandchildren, raising awareness of dementia, Church activities, visiting relatives and friends. Sometimes we go to concert or exhibition. We are all the time very busy.

In 2009 I decided to be active in raising awareness of dementia. I started to offer discussions My life with Mr.Alzheimer. Later I took an interview for various magazines, cooperate with TV, radio named Before sunset. This documentary was prepared for three months. The reporter made it in our house in various situations – for example washing, cooking. He went with me to one old man with dementia who I was training. When I asked his wife for permission to include her husband into this documentary, she didn´t want it. Only when I promised her not to say his name, she agreed.

So, we can see that many people are too shy to speak about the dementia to their love ones.

The reporter and I wanted to bring closer life of people with dementia  to others. After this documentary on the radio, people were calling there and asking questions to me and my husband. This documentary won second place in competition The best  radio Czech document 2013.

I realize that dementia makes me more humble as I need more help from others, or speak up at first time about my dementia was hard for me. Believe me, that for many people it is not easy to ask others for help in various situations.

I had some strange psychological test recently. One of the questions was:

What positives has dementia brought you?

I was very surpised by this question. But later I found:
 
1. I have more time for our grandchildren who live in three different towns because I don’t work

2. I was able to see my mother in law every week. We were walking and training memory together as she had AD too. She passed away this year in her nineties.

3. I can share my knowledge and opinions with others which makes me useful and happy

I wish to close by this quote:

Time is not only a gift, but a big change too.

Author: Nina Baláčková  © 2015
Editor: Kate Swaffer

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

Featuring Wendy Mitchell, Day 6 #DAM2015

It is Day 6 of Dementia Awareness Month 2015 #DAM2015 and rather than reinvent the wheel the next few days, I thought we should highlight some of the other wonderful blogs by people living with dementia around the world.

Screen Shot 2015-09-06 at 3.02.13 pm

Starting with Wendy Mitchell, whose blog titled Which Me AM I today, is definitely worth reading.

The header she uses on her blog, pictured above is wonderful.

There are definitely days, when one is living with dementia, that we wonder who we are, who we are becoming, and which parts of our old selves are missing in action! It is a strange phenomenon, and although we change every day, and we change after other illnesses and personal crises, the changes brought on be dementia ‘feel’ a bit different.

Many people with dementia get involved in being interviewed for the media, and Wendy wrote about her involvement with them this week;

Media – the good and frustrating elements.

Wendy closed her blog with this:

The audience are unaware of what I want to say and didn’t. The kind comments that people take the trouble to email, contact through the blog or Tweet make it all worth while. One such comment from the many this time made the frustrations of this media appearance very worth while…….

“I don’t feel quite so scared now. Thankyou. I will be following your blog”

The final quote from someone who had heard her speak, is why so many of us STAND UP AND SPEAK OUT.

Please do go to Wendy’s blog and read her personal stories of living with dementia. She was diagnosed with younger onset dementia when she was 59 years old.