Category Archives: A Meeting of the Minds

Wishing you a spectacular 2016

Screen Shot 2016-01-02 at 9.47.32 amWe would like to welcome you into the new year firstly with a message to wish you all a safe, productive, healthy (as much as  humanly possible) and truly peaceful 2016.

Dementia Alliance International (DAI) has a new Board of Directors whom we will introduce to you in our January e-News sent out later this month.

We would also like to remind you we have two special events this month as well.

  • On January 13/14, we are hosting an online zoom room event, to celebrate the 2nd birthday party of DAI. DAI Members will receive the invitation in your¬†inboxes very soon.
  • The next DAI A Meeting of The Minds Webinar, Living with dementia: new perspectives,¬†is with Dr Al Power, whom many of you have already registered for. Please register now if you haven’t already, as we already have a large number of registered attendees.¬†You can register here…
Reminder to our supporters registering for our monthly DAI A Meeting of The Minds educational Webinars: 

We rely on an honour system for our online registration process, and if you are not a member of DAI, and therefore a person with a medically confirmed diagnosis, and you are not a non professional carer/care partner who is not in paid employment, we do charge a small fee of $35.00 for you to register. This is our only form of income, and helps us to help people support themselves, and to live more independently. Thank you for your understanding.

Welcoming new members and supporters at all times

People with a medically confirmed diagnosis of a dementia can join for free, and attendance at all events and for services, is also free.

Once you become a member, you can get involved in many ways, including joining an weekly online support group, or our private Facebook groups, as well as our events and online cafes, all for no fee.

Anyone else can subscribe to our e-newsletters and weekly blogs, also for free.

Best wishes,
Kate Swaffer

DAI A Meeting Of The Minds, with International speaker Nicole Batsch

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Wednesday December 9 (USA/UK)

Thursday December 10 (AU/NZ)

“Dementia Friendly Communities Defined – Key Components for a Successful Start”

About our event:¬†In England where there are over 60 towns and cities that are working towards becoming Dementia Friendly Communities, a large scale expert and public consensus process took place from 2014-2015 to define the common elements of what being “dementia-friendly” means. This process culminated in the publishing of the British Standard Code of Practice for the Recognition of Dementia-Friendly Communities in England developed by the British Standards Institute and the Alzheimer’s Society with funding from the Department of Health and launched in July 2015.¬† The aim was that this code of practice would help to support existing communities and to inspire new communities. It provides recommendations on:

  • Who needs to be involved in setting up a dementia-friendly community
  • Aims and goals that should be central to all dementia-friendly communities
  • Areas to focus on and the processes needed for your dementia-friendly community to operate successfully
  • The positive changes for people with dementia that we would expect to see from a dementia-friendly community

About our Speaker: ¬†Nicole Batsch has over 18 years experience in developing and supporting¬†ageing and dementia care¬† programmes¬†across the US and globally.¬†¬†She is currently obtaining her PhD from King’s College London and is a¬†consultant with Alzheimer’s Disease International. ¬†In this role, she co-authored the World Alzheimer’s Report 2012: ¬†Overcoming the stigma of dementia which included a global survey of stigmatising experiences of¬†people with dementia and family¬†caregivers and serves as an¬†adviser to the¬†World Health Organisation on¬†a family caregiver education programme. ¬†In this session, Nicole will be discussing her involvement with the British Standards Institute and the¬†Alzheimer’s Society¬†in developing the British Standard Code of Practice for the Recognition of Dementia Friendly Communities in England.

Date: Wednesday December 9 / Thursday December 10, 2015

Speaker: Nicole Batsch, PhD candidate from Kings College, UK

Register here…

Wednesday December 9 Start Time (USA/CA/UK/EU):

  • 12.00 p.m. Pacific Time (San Francisco);
  • 1.00 p.m. Mountain Time (Denver);
  • 2.00 pm Central Time (Chicago)
  • 3.00 p.m. Eastern Time (Washington DC);
  • 10.00 a.m. in Honolulu, Hawaii;
  • 8.00 p.m. in the UK, London;
  • 9.00 p.m. in Paris and Budapest.

Thursday December 10 Start time (Australia/NZ/Japan/Indonesia):

  • 6.00 a.m. in Brisbane;
  • 7.00 a.m. Sydney, Canberra, Melbourne, Hobart;
  • 4.00 a.m. in Perth;
  • 6.30 a.m. in Adelaide¬†;
  • 9.00 a.m. in Auckland, New Zealand;
  • 3.00 a.m. in Indonesia;
  • 5.00 a.m. in Tokyo, Japan

The WEBINAR¬†will run for 1.5 hours.¬†To find out the start time in your city,¬†click here…

Register here…

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to suppport us and improve our lives.

We have needed to start to charge a fee for those who are working in the sector. You will be able to claim the cost of the tickets as a tax deduction. The fee for this service supports your education, and also supports our work which directly supports people with dementia.

Certificates of Attendance are available for professionals and students.¬†If you need a certificate of attendance, please email us at¬†[email protected]

People with dementia, and their care partners, are usually no longer in paid employment, and therefore tickets remain FREE. 

Donations are always appreciated.

Your donations do make a difference:
  • $US 5.00¬†covers the cost of our some bank or PayPal fees
  • $US 49.00¬†covers the smallest cost of our monthly Zoom subscription fee.¬†This varies from $49-$150/month, which is dependent on the numbers registered to attend our evends – if they don’t show up, we still have to pay the fee.
  • $US 100.00¬†covers the approximate monthly cost of the MailChimp subscription
  • $US 300.00¬†covers the approximte cost of three months of website management fees
Option: Your donation is securely processed by our nonprofit partner, PayPal, with transaction fees required to cover credit card fees, bank fees, and other processing costs. Please consider chipping in an additional amount so 100% of your donation amount goes to us. Thank you for your support.

DAI “A Meeting Of The Minds”, with Professor Steven Sabat

This week, we have been privileged to have Professor Steven Sabat deliver a presentation to our members and supporters, and we thank him for his commitment to people with dementia and our families, and to our work at Dementia Alliance International. If you missed it, you can now watch the recording here.

Understanding the selfhood of people with a dementia: context is key

By Professor Steven Sabat, presented to DAI members and supporters on October 28/29, 2015.

A PDF of his power point slides can be downloaded here: Steven Sabat: Understanding the selfhood of people with dementia РContext is the key

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.

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;

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‚ÄôS 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 ‚Äď THAT IS A NUMBER WITH TWELVE ZEROS ‚Äď 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‚ÄôS 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‚ÄôS 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‚ÄôS 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 ‚Äď 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 ‚Äď 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 ‚Äď 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)

Featuring Psychologist, Denise Craig

Denise Crain in Adelaide with DAI member, Ian Gladstone
Denise Craig in Adelaide with DAI member, Ian Gladstone

On the 19th of June this year,   we were privileged to have Denise Craig, a Senior Psychologist and Dementia Advisor,  present at a Café Le Brain in Australia hosted by Dementia Alliance International to discuss her place in the world of dementia care and advocacy. Denise also wanted to receive feedback from the group about post-diagnostic care.

A little background from Denise and a¬†pr√©cis¬†of her session…

I came to my dementia advocacy role through my mother‚Äôs untimely experience with what would turn out to be a combination of Alzheimer‚Äôs Disease and Vascular Dementia. At the time of Mum‚Äôs changed behaviours and noticeable memory difficulties I was a mature aged uni student (studying psychology), working part time and raising four children. Mum ‚Äėdid everything right‚Äô in that she exercised, had a great diet, enjoyed no more than the occasional social alcoholic drink, she was active, socially well connected, she loved travelling, and she was staunchly Catholic and grateful for life‚Äôs many blessings.¬†

Her illness was unexpected and through us living the nightmare of visiting specialist after specialist (usually to be told we’d need another scan, test, opinion, result, scan, test, opinion, more time etc) I came to the realisation that some things are done well in dementia care and some things are not. I decided then and there that perhaps beyond raising my children, my vocation in life would be in supporting people with dementia to navigate the complexities brought on by illness.

Once qualified I achieved my dream job as Psychologist providing dementia support for people diagnosed with dementia in Cairns. 

Through my role I came to know people living with Young Onset Dementia who often experience a multitude of additional challenges on account of their younger age and life stage. In 2012 (as a private undertaking) I established¬†The Young Onset Dementia Support Group on Facebook¬†as a means of helping to put young people with dementia in contact with each other and also to invite consumers to have their say. I had noticed the difficulty people can have in being heard and I could read the frustration and imagine the angst that would result from the sense of not being believed. It often happens that once a diagnosis of dementia is made, the person has difficulty ‚Äėhaving a voice‚Äô and may feel as though they are being left out of their own health and lifestyle decision making. This needed addressing.

In an age of Social Media which is readily accessible to many of us, I established the page and although it has disappointing limitations (such as posts by followers to the page are harder to see than posts by administrators) the posts do reach a broad readership very quickly. 

Feedback tells me it has been effective in some arenas and it has certainly helped increase connection of people diagnosed with dementia worldwide. It has also facilitated a host of qualitative responses which have reached peer consumers, care partners and health professionals. Many of the most profoundly powerful messages to the page occur via private messages. Private messages are one way consumers can access the type of support they most want, which is a priority of the page.

Amongst the inspiring advocates I have had the pleasure of getting to know, Kate Swaffer and Christine Bryden have taught me much. I now use all learnings and feedback to tackle aspects of dementia care from within the public service sphere where systemic change can be fostered. My goal of course is to support broad spectrum change in the way we think about dementia and the ways in which we encourage the best possible health and lifestyle for people diagnosed, their care partners and families.

Translating knowledge into practice is essential. After lengthy discussions with Kate and Christine about rehabilitative or ‚Äėenabling‚Äô strategies, it has become clear that knowledge about post-diagnosis options are sadly lacking.¬†

People diagnosed cannot be expected to see their own way clear of their grief and confusion to advocate for themselves and pursue new strategies that might help. Instead, health professionals could help enormously by facilitating this support during and after diagnosis. 

Enabling support could come from an Occupational Therapist who provides advice about ways to maintain independence, a Psychologist who provides counselling, a Speech Pathologist who supports language difficulties, a Dietician who can advise on dietary recommendations, a Social Worker who can support legal matters and counselling, and so on. 

All too often health professionals are either unaware of the potential benefits of an enablement approach, they don’t know how to reach the help, or the help is simply not available at all.

To be fair, access to available help is extremely complex: it depends on where you live, the funds you have, your age, the expertise of people in your area, whether or not your doctor or another referrer is aware of the availability (which is constantly changing), your mobility and transport and so on. 

Certainly, during our zoom chat the group reported frustrations over the lack of ‚Äėa list‚Äô of service providers and this happens in part because once a list is made it is almost immediately out of date ‚Äď so it is well recognised that an up to date national information bank is long overdue. A ‚Äėfood for thought‚Äô post-diagnosis care pathway document gives a goal to work towards.

To address the knowledge about the benefit of enabling support, I have achieved assistance via the Dementia Training Study Centre National Fellowship Program. Through the Fellowship I am striving to pilot a post-diagnostic care pathway tool. The pathways document is being completed by a multidisciplinary team of health¬†professionals¬†and our consumer member Christine Bryden. During 2015-2016, General Practitioners in Cairns will be approached to use the document to guide the ‚Äėwhere to from here‚Äô question which consumers ask when they return to their doctor with a dementia diagnosis.¬†

With excitement it seems that the Kiama Dementia Friendly Communities project is also motivated to pilot the pathways plan and their involvement will increase the feedback from stakeholders and help lead to a better result for people with dementia.

The bottom line for me is that I hope to add my voice and energy to the justification of enabling support after a diagnosis of dementia. 

Not everyone diagnosed will choose to engage with external support but at the moment the lack of awareness of its potential value is a major hurdle. 

For people diagnosed with dementia, my sense is that respect and access to support is overdue and I have to hope that the drive to encourage enablement will lead to an increase in access to needed intervention.

I enjoyed our time together and thank Kate Swaffer and Mick Carmody for inviting me to share my piece of the puzzle and to canvas ideas from the group.

Author: Denise Craig, Senior Psychologist

Note: We loved having Denise share her expertise and experience with our members, and thank her for her time and deep commitment to improving the lives of people with dementia.

Eulogy and tributes to Richard Taylor PhD

Remembering Richard Taylor PhD

The following notes are of the Eulogy given representing the members of Dementia Alliance, and from the heart of Kate Swaffer, current chair, co-founder and editor of DAI.

Hello.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles (Christopher Reeves)

Richard will continue to be one of my heroes.

I had hoped to write an Obituary to honour Richard, but when I looked up on how to write one, I was directed to all sorts of suggestions, and as I don’t know many of the more personal details of Richards pre dementia life such as birthplace and personal family history which was suggested should be included, I realised the best I could do was to write from my heart.

And so, I decided I would begin with a Haiku version of an Elegy about Richard.

So often, less is more.

Richard

Kind, intelligent
Passionate, real and feisty
Deepest heart and soul

The members of Dementia Alliance International are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer, and we extend our sympathy and condolences to his wife Linda, son Jason and his whole family, and closer friends. We hope you know how much he was loved and will continue to positively influence the dementia community.

As current chair of DAI, it is an honour and privilege to lead DAI, and to represent our members today in remembering and honoring him. I was privileged to work with him, and call him a friend, and was lucky enough to be in attendance at those early breakfast meetings he encouraged ADI to host during their conferences in 2012, 2013, and 2014.

In his final newsletter, he started with, ‚ÄúHello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.‚ÄĚ

Richard always began his videos and presentations with: ‚ÄúHello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer‚Äôs type.‚ÄĚ

Hello is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, and not on our deficits, and everyone deserves a hello.

Richard was inspirational, and his influence was significant on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those people that care for us, paid and unpaid, around the world.

He was a founding member of DAI, and had the dream for this group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.

As current chair, and also a co-founder, I can only hope we will continue to honour Richard appropriately, as individuals, and through our work in this group.

It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community.

Like hundreds even thousands of people around the world I too had a personal friendship with Richard. I first met Richard online late in 2008, having found excerpts of some of his writing via Dr Google. We communicated regularly after that, via email and even before we met, both said we felt like kindred spirits, on the same journey. Richard led the way for me, as he was the first person with dementia who not only spoke up for living beyond the diagnosis of dementia, he also he showed me it was possible.

His writings were the first I had discovered by a person living with dementia, and in many ways I feel his words ‚Äėsaved my life‚Äô. By that, I mean he saved me from continuing down the very slippery slope of doom and gloom of dementia, the pathway the medical doctors, health care and service providers also send you upon diagnosis. I had not heard of anyone living so well with dementia, and although I was referred to other books and writing, we were we basically told it is not possible to live beyond the diagnosis of dementia, and these other books whilst very helpful, did not really teach me it was possible.

Richard Taylor taught me that.

Mr Google had become my friend, and back when I was first diagnosed, there was very little being written by people with dementia available online or anywhere, and certainly not about living well with it.

Richard Taylor inspired me not to continue on the downward spiral of Mr Dementia with grace, and with determination to fight for my life and the human rights of all of us facing a diagnosis of dementia, but also to learn to ‚Äėlive‚Äô in spite of dementia, and indeed beyond the diagnosis. Richards‚Äôs writings were the catalyst for me to start to write about my own experience, and ultimately to find meaning¬†on this wild ride, and his support and friendship kept me going when the ride seemed too rough.

Reading excerpts of his writings was like reading my own story. He helped me find the words to express my own experience. He encouraged me to write, as a way of healing, and of making sense of dementia. He also showed me the way in teaching others, and although I was already standing up and speaking out, Richard kept me going on the days I wanted to give up. He inspired, motivated, and loved us all, and I feel quite sure loved us all as much as we loved him.

Before I met Richard in person, we often said we were kindred spirits. I know he has said that, and felt that with so many. But for me, meeting in person sealed that between us. He was a man of the people, and always opened his arms and heart to us all, without concern for any personal cost to him.

We all loved him, and will miss him greatly.

Just like Richard, finding a cure for any of the dementias has never been my priority. Research into improving the lives of the more than 46.8 million people already diagnosed with dementia is to me, equally important as a cure.

The big Pharmaceutical companies have almost total control of the research industry, and also many of the advocacy organisations, and there really is big money in dementia, which is not always helpful to those of us already diagnosed.

As with any critical illness, and I know we agreed strongly on this point, and we both spoke up for research into improving the care and outcomes for people already diagnosed with dementia.

We must never forget the people who are living with dementia NOW, currently almost 47 million of us.

Our needs are just as important as the need to find a cure, and research into living beyond the diagnosis of dementia, and interventions such as lifestyle strategies, non-pharmacological and positive psychosocial interventions and care and support that focuses on improving quality of life are equally important.

Helping people in the future must not be at the cost of the needs of those of us living with dementia today.

Thank you Richard Taylor.  We sincerely hope your family and very close friends get some idea today of the sense of love we all felt for you, and get some comfort in that. Our sympathy and sincere condolences go out to them, and to each other.

Finally, many have asked is who will take Richard’s place in this fight for equality, and who will be the voice for people with dementia?

I am one person who will do that.

Everyone here today will, I am sure, also fight for equality, autonomy and inclusion. People with dementia, and people without dementia, will do this.

Just like Richard did, Dementia Alliance International wishes to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!

And I feel very confident there are literally hundreds or thousands of others living with dementia, or caring for people with dementia, who have accepted this call to action, that he so genuinely and proudly began after his own diagnosis of dementia, probably of the Alzheimer’s type.

Together, we can and will change the world for people with dementia.

DAI Member, Leo White made a poignand and personal tribute,  ending with reading this famous and apt poem by John Donne

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Tributes from members and friends who were unable to attend the online memorial:

To begin, I am starting out with a tribute by a dear friend or Richards, Bettina Hackel from Switzerland, who attended the online tribute, but for reasons unknown, missed out  on the chance to participate. Our very sincere apologies Tina, we know how much you loved Richard. Tina posted this on her Facebook page yesterday, and with permission, we are adding it her.

Bettina (Tina) Hackel, Switzerland

THIS IS MY TRIBUTE to yesterday’s Meeting HONORING RICHARD TAYLOR.

For some unknown reasons Gmail refused to send my replies to DAI, so I didn’t make it to Kate’s list. Thank you, Kate, for this wonderful meeting; I could have listened to stories about Richard all through the night!

Hello,

My name is Bettina, from Switzerland. I lived in Florida for ten years with my late husband Alex, who was diagnosed with dementia. I cared for him at home, supported by wonderful and informed Florida folks.

Back in Switzerland I felt miserable. No one wanted to hear from Alex, his dementia, our experiences in Florida.

‚ÄúNow leave Alzheimer‚Äôs behind! Start a whole new life!‚ÄĚ so I was told.

In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor ‚Äď and there it was, my whole new life!

Richard in his empathetic ways pulled me out of my dark hole.

I found the automated German translations on his website, including his archived Newsletters, bad, even useless. So I offered Richard to translate them for him, and his assistant would publish them in German. This didn’t work very well, and sometimes Richard had no assistant.

So Richard decided to introduce me to the service he used to manage his Newsletters. But first he wanted to know much more about me. He wanted us to work together as friends. There was my new purpose in life!

After a year of communicating online, Richard appeared on my laptop screen with a broad smile:

‚ÄúSurprise, surprise!‚ÄĚ he announced, ‚Äúwe‚Äôre coming to Berne! I‚Äôll have a few days, we can meet and spend time together!‚ÄĚ

So we did. On our first day we made a roundtrip to the lake of Geneva and through alpine regions. On a stop Richard bought himself a large bottle of Coke.

How did I feel in Richard’s presence for a whole day, as a guide, an admirer and friend to be …

Nervous I was, overwhelmed and happy all at the same time. I felt, Richard was scanning me, highly present and focused.

Richard opened his bottle of Coke and took a good sip.

Then he offered:¬†‚ÄúWould you like some, too?‚ÄĚ

Startled I stammered:¬†‚ÄúOh ‚Äď yes ‚Äď thanks ‚Äď but ‚Äď the whole bottle?!‚ÄĚ

‚ÄúWell, I hope not!‚ÄĚ Richard replied with an amused smile.

So I took the bottle and got a sip and passed it back ‚Äď and Richard calmly gave it to me again ‚Äď until the bottle was empty.¬†It was a ritual.¬†YES! Now we were friends!

When Richard was back from Europe, I got an email:¬†‚ÄúYES! I‚Äôll call you today!‚ÄĚ

He taught me how to edit and publish the Newsletter, both in English and in German. Sometimes there was an assistant in his office, sometimes not.

When we were alone, we enjoyed to tell each other stories, to talk about our dogs, share experiences and dive into philosophical issues … these were peak moments.

Richard asked me to write a column in his Newsletter. He used Skype when he was on the road to introduce me to friends, and invited me to join online meetings and webinars.

Richard wanted me to become an activist for and with German language people with dementia.

Thank you, Richard!

Tina

Dr Jennifer Bute, FRCGP, UK

I read Richards book ‘Alzheimer‚Äôs from the Inside out’ soon after my diagnosis at a time when I read all the books available on the subject and his was the only one that inspired me. Most of the others were unutterably depressing beyond words I was also inspired that he used his past skills to learn from his daily frustrations and communicate them in a way that was familiar other in order to help and inspire others. This was a real inspiration to me to do the same thing with my past training medical experience and teaching skills. I shall be ever grateful to him.

I remember reading in his book about one incident where his family had completely misunderstood something he said. They certainly loved him dearly but they had completely missed the point. I was struck in such a way that I have never forgotten. We must not assume others understand what we are saying even it is obvious and makes perfect sense to us. it is the misunderstanding of what we say that they are rejecting not us!

I first met Richard 3 years ago in London at the ADI conference when he Kate and I shared the same platform. We became friends and he had the amazing ability to make all his ‚Äėfriends‚Äô feel special. He always replied to emails and was always encouraging and interested in what others were doing.

I loved his frustration with the ¬†‚Äėbig pharma‚Äô as he called them and agreed with him, ¬†also in his stance with the charities that were apparently more concerned with a future impossibility of a single cure (whenever was there one cure for cancer?) than in enriching the lives of those already living with dementia

His cancer inevitably caused a dip but he made an amazing recovery for a time, which said a great deal about his attitude and he always continued to care for others and was involved until the end. I last ‚Äėsaw‚Äô him in a video message at a meeting ¬†(with Kate) in London when we already knew time was running out.

He was an amazing man and his legacy will certainly live on. Thank you Richard.

Keith OIiver, UK

Kent and Medway dementia Service User; Envoy and Alzheimer’s Society Ambassador

Whilst there is a growing number of people coming forward to express what living with dementia is really like, no one has done so with the eloquence, humility and positive impact which Richard brought to the cause.

In preparing today for a radio interview I was mindful of Richard, and turned as I do from time to time to his remarkable book “Alzheimer’s From the Inside Out”. The book is like the man – inspiring. When I first met Richard at the ADI conference in London in March 2012 we immediately “hit it off”. His comment written to me in his book which I eagerly purchased said it all when he wrote,

“To Keith, we are kindred spirits. It is my honour to meet you. Best wishes on your journey. Thank you for making a friend of me. Richard.” The honour was entirely mine, and it was to Richard I turned when Reinhard Guss and I were setting up the Forget Me Not group in Kent. Richard’s advice then was as always, clear, direct, relevant and thoughtful and extremely helpful.

Richard and I also shared the background of being teachers, he in University and me in Primary/elementary schools. Age of student may have been different but we shared the desire to make a positive difference to those in our care, those who were on a learning journey. Although Dementia brought both our careers to a halt it could never fail to halt this desire, and it is to the world of dementia where his skills were so brilliantly applied.

As I often say, one door closes and one door opens, thank you Richard for helping to prise the door ajar, and then to help push it open wider for those of us with dementia.

Brenda Avadian, USA

Unfortunately, we lost one of the great voices with dementia last month (July 25) ‚ÄďHouston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer‚Äôs from the Inside Out.

Freda Collie, UK

‘ Altho’ you, Richard, have never met me, your online friendship, encouragement, support and information, plus your awareness-raising in the community and amongst medics, have helped me and other people with dementia and carers to keep calm and carry on – even tentatively (or confidently) to take up the baton and run for a little way!

Your newsletter and groups, the webinars etc, your humour, even the FB games occasionally, helped to bring that vital human contact here in my very quiet little one-person residence!
Travel in peace. With our thoughts and prayers.

Thankyou!

Freda

Lilia Mendoza, Mexico

I have met Richard through his book Alzheimer from inside out, we found a Mexican Printer to publish his book in Spanish, I had the privilege to review the translation. In that way we were connected. I admire his concepts, wisdom & most of all his sense of humour. He was really some one very, very special. We all with or without dementia are going to miss him enormously, but he showed us the path & we will follow it. Peace to a very special soul!

Kiki Edwards, Nigeria

How do we make the world a better place? We do so just the way Richard did – by infusing empathy into every individual we encounter. Did Richard know how much of an impact he had and continues to have on Nigeria? I know he saw how I religiously re-posted his messages, all of which were in turn re-posted. Words of wisdom, all of them. An insight into his duel with the fiend called Dementia. In his last posts, it was evident he was struggling, but he still managed to put his thoughts across. I waited for comments. None came. I guess everybody was just like me. Lost for words. Then I remembered some of his postings and videos I saw in the past.¬† People, friends shy away because they don’t know what to say, how to act around people diagnosed. At the end of the day, Richard is still Richard, irrespective of his diagnosis, was his message. I can’t remember my exact comments to his last posts. It was my usual one-liner. I just wanted him to know we were there with him and for him. Then minutes later the comments started flooding in like a deluge! Yes, we all paused, froze, even. We all tried to visualise what he was going through. We all remembered his “teachings”. We all saw him speaking in our head – “I am still Richard”.

Richard Taylor PhD, I, and Nigeria thank you.

Please note: Prior the recording of the online Tribute to Richard Taylor, it was announced that with permission from the family, this would be uploaded for others to view, everyone in attendance was given the opportunity to turn off our cameras.  Richards family has given consent for us to upload it on our YouTube Channel and share it here. Thank you.

Tribute to Richard Taylor PhD

Screen Shot 2015-08-11 at 8.12.22 am

Please join us in remembering Richard, in an online memorial for Dementia Alliance International members and all others who knew him, loved him, or whose lives were impacted by him in some way.

His reach was global, and his legacy will be carried on.

This is YOUR opportunity to share how he changed your life, your experience of living with dementia, or your experience of caring for someone with dementia. We have a very big set of shoes to fill.

Register here…

DATE:
Wednesday, August 19, 2015 (USA, Canada, UK, Europe) and Thursday, August 20, 2015 (Australia, NZ)

GUEST SPEAKERS:
Mr Glenn Rees, AM, Chair, Alzheimer’s Disease International
Dr Al Power, Geriatrician, author, educator
More to be announced.

Richard Taylor PhD was a founding member of Dementia Alliance International, and has been an advocate and global voice for people with dementia for more than ten years. Sadly, Richard passed away at his home on July 25th, due to cancer.

Richard was 58 years old when he was diagnosed with dementia, probably of the Alzheimer‚Äôs type. He always began his videos and presentations with: ‚ÄúHello. My name is Richard, and I have dementia, probably of the Alzheimer‚Äôs type.‚ÄĚ ‚ÄúHello‚ÄĚ is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, especially that of people with dementia, and not on our deficits.

The members of DAI send their deepest sympathy to his family and close friends, and we hope they know how much he was loved and will continue to positively influence the dementia community.

This Tribute to Richard is your opportunity to remember Richard amongst others who also loved him.

There will be a number of speakers, including Dr Al Power paying their respects to Richard, followed by the opportunity for you to express in your own words (max 2 minutes), the influence Richard had on your life.

Start Time:

North America, UK and Europe: Wednesday, August 19
3:30 p.m. Pacific Time (San Francisco) and Arizona (Phoenix);
3:30 p.m. Mountain Time;
4:30 p.m. Central Time;
5:30 p.m. Eastern Time;
10:30 p.m. in the UK;
11:30 p.m. in Paris and Budapest

Australia, New Zealand, Indonesia, Japan: Wednesday, August 20
7:00 a.m. Adelaide;
7:30 a.m. Brisbane;
4:30 a.m. Jakarta;
9:30 a.m. Auckland;
6:30 a.m. Tokyo

The Tribute to Richard will run for two hours.

Register here…

You will receive an email confirmation that contains instructions on how to join the event.

Please note: Unfortunately, we have had some IT issues with Eventbrite sending out incorrect dates and times to some people, so please, refer to the times listed here.

Belated update

Screen Shot 2015-07-28 at 10.18.21 amHello.

This month, as Editor of DAI, it has not been physically possible to keep up with the many commitments I have had in this group, and many others, so I would like to apologise for missing three weekly blogs.

What we can’t do alone, we can do together, but there simply have not been enough helpers to ensure even the basics of our organisation¬†happen this month.

A Tribute to Richard Taylor

The passing of Dr Richard Taylor, one of our founding members, and a long time advocate and activist for improving the lived experience of dementia, has also take its toll on our members, and the global dementia community, and to help members, Laura Bowley provided a Zoom chat room on Tuesday; thank you Laura for doing this, it was a good opportunity for people to share their grief.¬†¬†DAI¬†also continued with Richard’s Thursday support group to allow people to express their feelings and talk about their own memories of Richard.

Keep this date free:

  • August 19 (USA/Ca/UK/EU)
  • August 20 (AU/NZ/Japan/Indonesia)

DAI will be holding a Tribute to Richard Taylor event as part of our A Meeting of The Minds Webinar series.

Details including times will be sent out ASAP.

July 2015 Member update

As far a a July Members update, we were unable to hold the Open Members meeting in July, and I have not written a report to publish here, but suffice to say, there is actually little to report, and so we will provide a two month update at our Open Members meeting in the third Tuesday/Wednesday of August.

Again, our apologies and we hope to see you at the August Open Member to give you an ¬†update, and to hear your views.¬†I’ve not even¬†had time to write up the survey results either, but hope to have that done by this update as well.

Thank you for supporting Dementia Alliance International.

Kind regards,
Kate Swaffer
Chair, Editor, Co-founder

Dementia Beyond Disease: Enhancing Well-Being

Last week DAI members and others were privileged to have Dr Allan Power present a session, Dementia Beyond Disease: Enhancing Well-Being as part of our A Meeting of the Minds Webinar series. Thank you Al, your effort, and deep commitment to improving the lives of people with dementia is appreciated.

Dr Allen Power is an internist, geriatrician, and clinical associate professor of medicine at the University of Rochester, New York, and is an international educator on transformational models of elder care, particularly for those with changing cognitive abilities. Dr. Power is the author of two books, Dementia Beyond Drugs, and the newly released Dementia Beyond Disease. He has served as an advisor and educator for the US government for their antipsychotic reduction initiative. Dr. Power is also a board member and educator for The Eden Alternative, the world’s largest culture change movement for elder care.

You will find his presentation enlightening, and hopefully, if you work in dementia care, culture changing.

Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world that seeks to represent, support, and educate others living with the disease, and an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

See the recording of his session here. Apologies it has not been edited to improve the quality.

Dementia Beyond Disease: Enhancing Well-Being

We will post¬†his power point slides¬†here as soon as possible but due to my current poor internet connection, they won’t download here!

For those who want to follow Dr Power’s¬†schedule, see his website here¬†http://www.alpower.net/gallenpower_schedule.htm

Membership of Dementia Alliance International is free, and is exclusive to those with a medically confirmed diagnosis of a dementia. Join us at http://www.joindai.org

If you do not have a diagnosis of dementia, but are interested in our work, you can subscribe to our weekly blog or visit us at www.infodai.org

As an unfunded advocacy and support group for people with dementia, we appreciate all donations, and are thrilled to have received one following this last webinar. Thank you.