Category Archives: A Meeting of the Minds

#Hello from 49 people with dementia in NZ, Day 3 #WAM2019

Whilst we highlight many  individual voices of people with dementia through our #Hello blog series this month, in todays post, we share our “Meeting Of The Minds” Webinar from June, Living with dementia in New Zealand.

The research involved listening to the voices of 49 people diagnosed with dementia in New Zealand, and we thank Liz and Alister for their contribution during the Webinar. The slides and the Dementia Declaration are available to download below the video.

Download the power point slides

Download the NZ Dementia Declaration

September Webinar: Step Up For Dementia Research

DAI’s monthly “Meeting Of The Minds” Webinars focus on a variety of topics, and provide an opportunity for people with dementia to connect with the wider community of those living with the disease or working in the area of dementia, and vice versa.

In September, we are pleases to announce we will hear from Yun-Hee is the Susan and Isaac Wakil Professor of Healthy Ageing at the Sydney Nursing School, The University of Sydney. Yun-Hee  is passionate about improving quality of care for older people and dementia care and involving the public at all stages of research.

Register now for our September 2019 “A Meeting Of The Minds Webinar”,  on Step Up For Dementia Research

  • Wednesday September 25,  2019 (USA/CA/UK)
  • Thursday September 26,, 2019 (AU/NZ/ASIA)

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

About the Webinar: There is no systematic way for people with dementia to get involved in research, and limited support is available to facilitate a broader public engagement in dementia research. Recruiting participants in dementia research is costly and time consuming. In partnership with University College London and University of Exeter, a team at the university of Sydney has been working to tackle the challenges in Australia through StepUp for Dementia Research. This presentation will focus on what this new initiative aims to deliver and how it will achieve its goal to improve recruitment efficiency and public engagement in dementia research. The session will conclude with Q&A, and time permitting the participants will be given opportunity to sign up in real time.

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed persons: DONATIONS APPRECIATED

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 300.00 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

Register now for DAI’s July Webinar: Dementia as a Disability

We invite you to register now for DAI’s “A Meeting Of The Minds” Webinar, July 24/25, 2019, with presenter and DAI Board member, Christine Thelker from Canada.

 

 

 

 

 

 

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

About the Webinar: DAI recently held a Side Event at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). This webinar will highlight the event, focusing on why dementia must be managed as a disability and why people with dementia are rights bearers as all others, such as universal heath care including rehabilitation. The panel included a group of eminent speakers, and was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD

The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.

Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.

As an organisation DAI continues to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.

About our speaker: Christine Thelker, a current board member of DAI, is from Vernon, British Columbia, Canada and at 59 says, her sense of humour has grown, since her diagnosis of dementia. She is a Board member of Dementia Alliance International, and previously worked for the Interior Health Authority for 13 years in various sites, including in dementia care and of life care. She advocates for families and patients and for better training for workers in dementia care. She also advocated for better working environments for the employees. Christine designed and taught a program to nursing students at the local colleges on end of life care and dementia care, and designed a program on unattended sorrow, which was in relation to all the deaths workers saw and the cumulative effects. She believes it has many similar effects on people diagnosed with dementia and doing more work around that. Widowed at 47 and then diagnosed with Vascular dementia at 56, Christine is still advocating, using her voice to help others. She loves working with Dementia Alliance International (DAI) and believes whole-heartedly that it helps keep her living well with her dementia. Her motto since being diagnosed is “I’m not done yet”.

Register here…

Wednesday, July 24, 2019 (USA/CA/UK/EU):

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, July 25, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours. Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…

Donations are appreciated.

“Staying engaged without driving”

In April 2019 DAI was delighted to host one of our “A Meeting Of The Minds”  Webinars on an important topic, “Staying engaged without driving”, presented by Dr Jacki Liddle and Dr Theresa Scott, both from Queensland.  Our sincere thanks to them both for giving up their time and sharing their expertise on this topic.

About the webinar: Some people say that stopping driving is the “hardest thing” they face in living with dementia. Our research has explored people’s experiences related to stopping driving, the involvement of health professionals and key times when support is needed. The talk will draw on this to cover ways to prepare, decide and adjust emotionally and practically to life without driving. It will highlight ways to stay engaged in the community and in meaningful activities. It will also show advice for health professionals and family members for ways they can assist people who are retiring from driving. The CarFreeMe program is an example of an education and support program helping people with stopping driving, and we will give an overview of this and ways people could get involved.

Watch the recording of this important presentation here:

Download the slides here: How to stay engaged without driving 

About the speakers:

Jacki Liddle is an Occupational Therapist and Research Fellow. She is involved in researching life transitions, ways of supporting community engagement and ways of measuring meaningful outcomes. Her research with people living with dementia includes codesigning technology and supporting community mobility, particularly after driving cessation.

Dr Theresa Scott is an NHMRC-ARC Dementia Research Development Fellow and a Psychologist at The University of Queensland. Her fellowship research is focused on the complex issues around dementia and driving. She is particularly interested in how driving cessation might be better managed in primary care settings and in supporting people living with dementia who are transitioning to retirement from driving

Collaboration across disciplines and countries, by Dr Laura Booi

Dr 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. In our February 2019 “A Meeting Of The Minds” Webinar, she highlighted the work of the World Young Leaders in Dementia (WYLD). We thank Laura for her time, support of DAI, and expertise.

This is 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.

Laura’s slides are available to download here: WYLD Webinar_Laura Booi PhD_DAI

For more information please visit www.WYLDementia.org

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.

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

Register now for DAI’s May #DFC Webinar

“The Dementia-friendly Kiama Project: The Challenges & successes in improving the dementia-friendly features of a small community and their replicability to other communities”

 

  • Wednesday, May 23, 2018 (USA/CA/UK/EU)
  • Thursday, May 24, 2018 (AU/NZ/JP/SGP/TWN)

Presenters: 

Dr Lyn Phillipson: NHMRC-ARC Dementia Fellow, School of Health and Society | Faculty of Social Sciences and Australian Health Services Research Institute, University of Wollongong NSW 2522 Australia.

Dennis Frost: Chair Southern Dementia Advisory Group, Member Dementia Australia Dementia Friendly Communities Advisory Group & Dementia Advisory Committee

Nick Guggisberg: Manager Community & Cultural Development, Kiama Municipal Council.

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

You can read more about it on our website under DAI Webinars, or Register now on the Eventbrite page.

DAI Webinar: “Social health: an opportunity to improve your cognitive reserve?”

Please join us for our next DAI “A Meeting Of The Minds” Webinar, presented by Professor Myrra Vernooij-Dassen.

  • Wednesday, March 28, 2018 – times (USA/UK/EU/CA)
  • Thursday, March 29, 2018 – times (AU/NZ/JP/IND/TWN)

 

 

 

 

 

 

About Professor Vernooij-Dassen: Professor Myrra Vernooij-Dassen has been trained as medical sociologist and was director of the Radboud Alzheimer Centre. She is affiliated to Radboud University Medical Centre in Nijmegen, the Netherlands. She has performed a large body of research in psychosocial dementia and palliative care. She supervised 32 PhDs. She published more than 250 (inter)national peer reviewed articles. She is chair of INTERDEM, a pan-European research network on detection and timely INTERvention in DEMentia. She is a member of the Scientific Advisory Board of the European Joint Programme Neurodegenerative Diseases (JPND).Professor Vernooij-Dassen is visiting professor at the Gadjah Mada University in Yogyakarta, Indonesia and honorary visiting professor of the School of Health of Bradford University.

Myrra received the Dutch royal honor to be officer in the order of Orange-Nassau and the IPA 2016 distinguished service to field psychogeriatrics award

About the Webinar: Within the dominantly biomedical dementia research the place of social health and its integration within dementia research is underexplored. How can social health contribute to a better life with dementia? Social health reflects the influence of social interactions on people’s capacities. Social health might contribute to brain reserve and be crucial in optimally using the plasticity of the brain. This can be done by through active facilitation and utilization of social resources individuals possess. Evidence is accumulating for the impact of social health, in terms of social support, functioning and participation, on the occurrence and progression of cognitive impairment and dementia. On the other hand there is emerging evidence indicating that excluding people with dementia exacerbates the sense of ‘being an outcast’. This might affect their feelings of loss and diminishing identity. Social health is dynamic and can be improved by considering both the negative and positive influences social interactions might have. This represents a huge potential to contribute to living well with dementia.


Wednesday, March 28, 2018 – times (USA/UK/EU/CA):

  • 1:30 pm San Francisco USA
  • 3:30 pm Des Moines/Chicago USA
  • 4:30 pm New York USA
  • 10:30 am Honolulu
  • 4:30 pm Toronto CA
  • 1:30 pm Vancouver CA
  • 9:30 pm London/Glasgow UK
  • 10:30 pm Paris, Munich, Amsterdam, EU

We apologise for the late time in the EU, UK and Scotland which are due to daylght savings in some countries

Thursday, March 29, 2018 – times (AU/NZ/JP/IND/TWN):

  • 6:30 Brisbane
  • 7:00 am Adelaide
  • 7:30 am Sydney/Melbourne/Canberra
  • 4:40 am Perth/Taipei
  • 9:30 am Auckland, NZ

The webinar runs for up to 1.5 hours.

Check your time using this link…


COST TO ATTEND:

  • FREE for DAI members and their care partners
  • $25 USD for all others
  • DONATIONS (as you can afford)
  • $50 The cost of this ticket will be used exclusively to support people with dementia to attend ADI CHICAGO 2018

THE SMALL FEE FOR SOME ATTENDEES OF THIS EVENT, THE ATTEND CHICAGO OPTION, AND YOUR DONATIONS ARE APPRECIATED.

DONATIONS ARE OUR ONLY SOURCE OF INCOME.

WITHOUT THEM, DAI COULD NOT PROVIDE THE FREE SERVICES IT PROVIDES 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 300.00 covers the current cost of 3 months of website management fees

You can either DONATE HERE or as part of registering for the event: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please email us at [email protected]

Note: the Q&A session at the end of our webinars are never recorded, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

Thank you.