Category Archives: Dementia Alliance International

NEWSFLASH: Dr Laura Booi presents at our next Webinar

We are thrilled to announce Laura Booi, PhD, member of the World Young Leaders in Dementia (WYDL) and Atlantic Fellow with the Global Brain Health Institute, Trinity College Dublin, has agreed to present at our February Webinar. Thank you Dr Booi!

“The World Young Leaders in Dementia: Collaboration Across Disciplines and Countries Among the Next Generation of Dementia Leaders”

Presented by Laura Booi PhD

 

 

 

 

 

 

  • Wednesday, Febuary 27, 2019 (USA/CA/UK/EU)
  • Thursday, Febuary 27, 2019 (AU/NZ/JP/SGP/TWN)

Please note: this will be one event, set in a number of different time zones.

Register here…

About the Webinar: World Young Leaders in Dementia (WYLD), a network of young professionals in the field of dementia. WYLD members represent over 300 individuals, under the age of 40, from 30 countries, spanning across 6 continents, who are working together across disciplines and borders to develop innovative dementia solutions.The network supports the work of the World Dementia Council as well as other NGOs. WYLD offers opportunities for professionals in the dementia space to connect and learn from others across disciplines and geographic boundaries. For more information please visit www.WYLDementia.org and attend this webinar.

About Laura: Laura Booi, PhD is a Gerontologist from Vancouver, Canada. For over the past decade her research has focused on improving the lives of those live with dementia, as well as those who support them. Her doctoral thesis used ethnographic methods to explore the lived experience of care assistance in long-term care settings. She has also conducted large-scale projects examining the role of dementia related stigma within retirement communities. Laura is an outspoken advocate for people living with dementia and one of the the co-founders of the World Young Leaders in Dementia (WYLD). She is currently living in Ireland as an Atlantic Fellow for Equity and Brain Health with the Global Brain Health Institute at Trinity College, Dublin.


Wednesday, February 27, 2019 (USA/CA/UK/EU):

10:30 am  Honolulu
12:30 pm  Oregon Portland/San Francisco USA/Vancouver CA
2:30 pm    Des Moines/Chicago USA
3:30 pm    New York USA/Toronto CA
8:30 pm    London/Glasgow/Dublin UK
9:30 pm  Paris, Munich, Amsterdam, EU

Thursday, February 28, 2019 (AU/NZ/JP/SGP/ASIA):

7:00 am    Adelaide AU
6:30 am    Brisbane AU
8:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:30 am    Perth AU/Taipei TWN/Beijing
5:30 am    Tokyo, JP
9:30 am  Auckland, NZ

The Webinar runs for up to 1.5 hours. 

Check your time here if not listed above.

See you there!

COST TO ATTEND: 

  • DAI Members or their care partners: FREE
  • Employed people: $50:00 USD
  • Full time Students: $25:00 USD

Register here…

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 400.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI

Become a DAI Associate or Strategic Partner today

Volunteer for DAI

THANK YOU

 

CERTIFICATES OF ATTENDANCE: If you are still waiting on a certificate of attendance from any of our educational webinars, please email us at [email protected]

OPTION: Our event ticketer, Eventbrite, charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Reminder from the late Susan Suchan

In case you or any of your advocate friends are struggling to stay on track, to keep speaking up, banging your (our) heads against the wall for a better world and support for all people with dementia, the late Susan Suchan reminds us well on why we MUST keep going, and how easy it is.

INCLUSION and the funding and disability support to be fully included,  must be the way forward.

For example, no one with dementia should ever see a conference program without people with dementia as invited keynote speakers at the same time as all other speakers, and who are not there in person (as opposed to via zoom or Skype), especially if the event is promoted as being about them or including them.

Alzheimer’s from the Inside Out, by Dr Richard Taylor

It would have been the late Dr Richard Taylor‘s birthday today (perhaps tomorrow if you are in the USA), and to honour his memory, and his influence on the lives of so many people with and without dementia. we are re-posting a video of him speaking at the first ADI conference DAI members attended, in Puerto Rico in 2014.

Alzheimer’s from the inside out

Watch and listen at the 53 second point of this video…  Richard talks with sincerity, but also with some cynicism about why he believed he was offered an award and invited to speak at the awards event. This is still happening to most people with dementia  today.

His speech notes are on the original DAI blog published after the conference

The Joy of DAI and Dementia, by Tamara Claunch

The first month of January is almost at an end! Wow, where did it go?! This month has definitely passed quickly, and for DAI, it has included a lot of celebrations for our 5th birthday.

We even have one more DAI event in January to attend, which you still have time to register for!

But, back to our birthday!

Who would have thought someone would be jealous of having dementia?

Our 5th birthday party was held in lieu of our regular Cafe Le Brain and members meeting, with a high attendance. It was an open session, with everyone being welcome, and access details made publicly available.  Most of our events last for up to 90 minutes; this one went for 2.5 hours, and only ended as those of us who were there the whole time we exhausted! People dropped in and out as they were able to, and everyone had a lot of fun.

Today, we are delighted to share a guest blog, written by one of our newest friends and supporters Tamara Claunch, who attended the celebration, and who has also agreed to volunteer for DAI. We will be sharing some exciting news about that in another blog very soon!

The Joy of DAI and dementia

By Tamara Claunch, written on Janauary 17, 2019

Yesterday I experienced being jealous of having dementia for the first time. If I had dementia, I would be allowed in the club. Yes, the club is that good.

Dementia Alliance International celebrated their fifth birthday recently.

I, along with other professionals, friends and family was invited to join the online, global celebration. It lasted longer than expected and was very well attended. Over 80 people called in on video from all over the world and the facilitators did a fantastic job of recognizing all attendees and making sure all had a chance to introduce themselves and say a little about DAI.

As I listened to the attendees speak, what struck me was how each member of DAI evidenced a lightness of the spirit, an openness that comes with wisdom and gratitude. Wisdom because they’ve experienced intense trauma and loss.

Gratitude because they’re together.

At least this is my interpretation of the energy in that communal space; I would not presume to know how it feels to be them.

At first, I was reminded of Alcoholics Anonymous: the old timer success stories inspire the freshly baptized-with-fire newcomers. They befriend and teach and support one another. As the group gets bigger, it adjusts – more local support groups, more online support groups, more specific support and study groups.

Absolute inclusion. Like AA, there’s only one criterion for joining: you must have the same “condition” as everyone else in the group.

How must it feel to being newly diagnosed with Alzheimer’s, frontal lobe or Lewy body dementia and given less than five or ten years to live? To believe the majority of those years will be spent dependent upon others?

Imagine then how it might feel to meet dozens of people all over the world who are living beyond dementia. People who are fighting their illness and defying expectations. People who are still independent, social and active a decade or more after diagnosis.

At the birthday party, I saw new DAI members experiencing hope for the future, perhaps for the first time since their diagnosis. As one member put it, “I can fight this and make it [the time] count”.

I saw “old” DAI members reconnecting and seeing each other for the first time in a while.

People laughed and joked, empathized and encouraged. They held a moment of silence for members who are no longer around.  All appeared to have a sense of purpose and community and to feel that they are part of something bigger than themselves.

While the members of DAI were uniquely individual, as were their stories, I perceived some common threads running through the tapestry of lively conversation and heartfelt congratulations:

  • They are all immensely grateful for DAI and the impact that it has had on their lives.
  • It’s okay to make fun of dementia, only if you have it.
  • Every journey has a purpose.

For a brief time, I was able to experience the humor and humanity and open lightness that exists within these people and between them.

Contrary to how the media, some caregivers and the medical establishment portray dementia, these people are not dumb. They are not dull. They are not incapacitated. They are funny and bright and witty and inclusive.

They are, simply, humans being human. As one member said, “Individually, we have deficits but as a whole we are magnificent.”

As an Integrative Wellness & Life Coach, speaker and writer, I specialize in working with people who have dementia. I am an advocate, a partner and a champion of persons with dementia. But all my passion and all my expertise did not prepare me for what I experienced during DAI’s 5th birthday party.

It ended up being one of the most present, precious experiences of my life.

If only the world could see these people and hear their stories then maybe, just maybe, the world would start to treat them as human beings deserving of dignity, respect, and inclusion.

So while I may not long for a diagnosis of dementia, I would love to belong to an organization like Dementia Alliance International. They have a lot of fun and they do a lot of good for others. They make a real difference in the lives of people all over the world and I am grateful to be a supporter and friend of the group and its members.

Copyright: Tamara Claunch 2019

About Tamara: Tamara Claunch, MEd, is an Integrative Wellness & Life Coach and the Founder of VitaV Wellness in Aging. She has worked extensively in partnership with the Center for Applied Research in Dementia. Her main areas of expertise are dementia risk-reduction and alternative, nonpharmacological interventions for those living with symptoms of dementia and Mild Cognitive Impairment (MCI). She has extensive experience working with individuals, families and the broader medical community to enable independence, dignity and equality in the lives of people living with dementia. Her passion in life is helping others find purpose in their journey, wherever it may take them and whatever it looks like.

Thank you Tamara for this beautful reflection, and thank you Fei Sun for the image below of some of the people who joined us. 

Image source: Fei Sun

Webinar “DAI: 5 years on”

 

Please note: this is one event, set in a number of different time zones.


“Five years on: Why DAI? Where have we been? Where are we going?”

 

ABOUT THE WEBINAR: With a new diagnosis of dementia every 3 seconds, it is not surprising that DAI has continued to grow since its launch five years ago. Our presenters, John Sandblom and Kate Swaffer are both co founders, and are also co hosts of peer to peer support groups and very active board members. They are both often asked why and how DAI was set up. In this Webinar, they will cover the history of DAI, provide an overview of what DAI has achieved to date, and discuss where they see the future of DAI.

The most imporant part of DAI’s work is the weekly peer to peer support groups for members, and the global advocacy for claiming our human rights and disability rights. This webinar will also be an opportuntity for members, families, as well as our sponsors, supporters, academics and professionals working in the field to tell us what they would like to see in terms of DAI’s future direction.

By working together collaboratively, we are all stronger, and can achieve even more than what the original founding members first dreamed of. We welcome everyone to register and join us for this EXCITING Webinar. Without you all, DAI would not be where it is today.

PRESENTERS: Kate Swaffer & John Sandblom

John and Kate are co founders of DAI, and have been active board members from day one of this organization. They were also very in the setting up of DAI prior to the launch on January 1, 2014.

John has lived in central Iowa, in the US for all of his life except for college which was eastern Iowa at the University of Iowa. He spent the majority of his working life in business-to- business sales, first print advertising followed by television advertising and then telecommunications sales. He was diagnosed with Younger Onset Atypical Alzheimer’s Disease at the age of 48 in 2007, by a gerontologist that specialized in dementia.

Kate grew up on a farm in rural South Australia, and has lived in Adelaide Australia since 1977. She commenced her professional career as a nurse, specialising in dementia and aged care, and then worked in operating theatres. She has also worked as a chef, and also in health care sales. She is very active globally for DAI, has published two books on dementia, two poetry books, and is involved in research into dementia at three universities. Kate was diagnosed with younger onset dementia (svPPA) aged 49 by a neurologist in Adelaide.

Register here…

DATES/TIMES:

Wednesday, January 30, 2019 (USA/CA/UK/EU)

10:30 am Honolulu
12:30 pm Oregon Portland/San Francisco USA
12:30 pm Vancouver CA
2:30 pm Des Moines/Chicago USA
3:30 pm New York USA
3:30 pm Toronto CA
8:30 pm London/Glasgow UK
9:30 pm Paris, Munich, Amsterdam, EU

Thursday, January 31, 2019 (AU/NZ/JP/SGP/TWN/CHN)

7:00 am Adelaide AU
6:30 am Brisbane AU
7:30 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei TWN/Beijing
5:30 am Tokyo, JP
9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Apologies for some of the early or late times; it is really difficult to host one event which suits all time zones; we will record this presentation for those who are unable to attend.

Check your time if not listed above by opening this link.

We hope to see you there!

DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE, AND E INVITE YOU TO MAKE A DONATION.  

WITHOUT DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 400.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE… 

CERTIFICATES OF ATTENDANCE: If you are still waiting on a certificate of attendance from any of our educational webinars, please email us at [email protected]

OPTION: Our event ticketer, Eventbrite, charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Thank you.

Join us soon for our 5th Birthday Party

Please join us for DAI’s special 5th birthday celebration, which starts soon.  

We are really looking forward to sharing this special event with everyone; DAI members, our family, friends, supporters and professionals.

Today we will show vignettes of our founders speaking at events or conferences and share cake and coffee (or champagne) virtually. It may seem a little excessive to have sent out another blog about our birthday today, especially as we sent a recent newsletter, but many members of DAI really are very excited!

  • Tuesday January 15, 2019 (USA/CA/EU)
  • Wednesday January 16, 2019 (AU/NZ/CHN/TWN)

Join the online celebration here: https://zoom.us/j/476273211
For your exact time to join us, please scroll down.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)

I suspect many people (including some the founders!) doubted we could do it in the early days, and we are sure that without dreams, and perseverance, and most iportantly, working together, we have made it!

Five years is a major milestone, and we want to share it with you all; without everyone, not just our members, DAI would not be where it is today! Thank you.

PLEASE NOTE: THIS IS ONE EVENT, SET IN MANY TIME ZONES

Tuesday, January 15, 2019 (USA/UK/EU/CA):
11:00 am  HST Honolulu
1:00 pm    PST Oregon Portland/San Francisco USA
1:00 pm    PST Vancouver CA
3:00 pm    CST Des Moines/Chicago USA
4:00 pm    EST New York USA
4:00 pm    EST Toronto CA
9:00 pm    GMT London/Glasgow UK
10:00 pm CET Paris, Munich, Amsterdam, EU

Wednesday, January 16, 2019 (AU/NZ/JP/IND/TWN):
5:00 am    CST Beijing, China
7:30 am    ACDT Adelaide AU
7:00 am    AEST Brisbane AU
8:00 am    AEDT Sydney/Melbourne/Canberra/Tasmania AU
5:00 am    AWST Perth AU/Taipei TWN
6:00 am    JST Tokyo, JP
10:00 am NZDT Auckland, NZ

The celebration runs for up to 2 hours. Check your time if not listed above. 

If you can’t join using zoom, join via:

One tap mobile
+16699006833,,476273211# US (San Jose)
+16468769923,,476273211# US (New York)
Dial by your location
+1 669 900 6833 US (San Jose)
+1 646 876 9923 US (New York)

Meeting ID: 476 273 211

Find your local number: https://zoom.us/u/adK37bjU6o

Rehabilitation for dementia: evidence and opportunities

For those of you who missed our latest Webinar presented by Associate Professor Lee-Fay Low, Rehabilitation for dementia: evidence and opportunities, it is now available to view here and on our YouTube channel. Thanks again to Lee-Fay for her continued support for DAI.

About the Webinar: The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Watch the presentation below, and download the slides here…

Happy New Year & Happy 5th Birthday DAI

Today is January 1, 2019! It  is not only New Years Day, it is the celebration of the 5th Birthday of Dementia Alliance International!

We therefore also wish everyone a safe and peaceful New Year, as well as a meaningful and productive year ahead, and really hope you will join us for our 5th Birthday Celebration and Webinar later this month.

The eight founding members who set up DAI, decided the organization  should be a global advocacy and support group, of, by and for people with dementia. The original Vision was for “A World where people with dementia are valued.”

DAI’s Vision now is: “A world where people with dementia are valued and included” and we are proud to also be global, well beyond the three countries the original co founders are from.

Although there were and still are many Alzheimer’s organisations, their missions started with support for families and care partners, and the founding members of DAI believed that peer to peer support specifically of, by and for people with dementia was needed. The eight founding members also noticed that too often, people spoke for us and about us, but rarely invited us to speak for ourselves. The first few years that people with dementia spoke at ADI conferences, they usually had to submit abstracts and pay to attend.

It is very likely most of the founding members did not have the goal or vision for the amount or level of global advoacy and activism DAI has become involved in, nor any sense of who we would be collaborating or in relationships and partnerships with, but in five years, we have worked hard, and collaborated to work with many leading organisations including the United Nations and the World Health Organisation.

Yesterday was the last official day of active service as members of the Board of Directors for Phyllis Fehr, Ian Gladstone, and Agnes Houston, and we thank them sincerely for their service. Our incoming 2019 Board of Directors will meet next week for their first official board meeting, and we will more formally introduce you to them board soon. By attending our birthday party or our January Webinar, you will also get to meet them online.

Our official celebration of our 5th Birthday will be held on January 15/16, 2019. DAI Members will be sent the login details separately and everyone else will be receive registration details to attend soon.

DAI’s January “A Meeting Of The Minds” January Webinar: “5 years on: Why DAI? Where have we been? Where are we going?” will be held on January 30/31, 2019. The presenters are DAI’s Chair & CEO Kate Swaffer and Treasurer John Sandblom, two of the original co founders. You can read about it and register for it here…

Check out our 2019 Board of Directors

Kate Swaffer (Chair/CEO)
Jerry Wylie (Vice Chair)
Eileen Taylor (Secretary)
John Sandblom (Treasurer)
James McKillop
Maria Turner
Alister Robertson
Christine Thelker
Michael Belleville
Bill Turner (Image not available)
Howard Gordon
Carole Mulliken

Seasons Greetings

We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.

As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.

From those early days of eight (8) founding members with dementia representing three countries, we have come a long way.  Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.

For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.

One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.

DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of “A world where people with dementia are valued and included.”.  

That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.

In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested. 

DAI is very proud to have recently partnered with Dementia Australia (DA), which you can read more about in our Media Release. They are the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.

In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.

We congratulate Dr Jennifer Bute on the recent release of her first book, Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year Somebody I Used to Know continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs. 

DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.

Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and on receiving her Honorary Doctorate from the NUI Galway.

DAI continues to make submissions to governments on our rights, on dementia plans,  on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.

We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people. 

The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:

  • 2000: Dementia Advocacy Support Network International (DASNI)
  • 2002: Scottish Dementia Working Group (SDWG)
  • 2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
  • 2012: Highlands Dementia Working Group (HDWG)
  • 2012: European People with Dementia Working Group (EUPDWG)
  • 2013: Dementia Australia Dementia Advisory Committee (DADAC)
  • 2013: Irish Dementia Working Group (IDWG)
  • 2014: Dementia Alliance International (DAI)
  • 2014: Japan Dementia Working Group (JDWG)
  • 2014: Southern (Kiama) Dementia Advisory Group  (DAG’s)
  • 2014: NZ Dementia Advisory Committee (NZDAC)
  • 2015: Ontario Dementia Advisory Group (ODAG)
  • 2016: Dementia Advocacy Awareness Team (DAAT)
  • 2017: 3 Nations Dementia Working Group (3NDWG)

It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.

Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.

There are only 15 days left to make Christmas REALLY COUNT, through the PayPal fee-free + 1% Christmas Donation deal. 

 

 

 

 

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” ( 2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the launch of the first UN Flagship Report on Disability and Development on the “Realization of the Sustainable Development Goals by, for and with persons with disabilities”The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.