Category Archives: A Meeting of the Minds

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.

Webinar: Occupational therapy, and co-design of technology

 

 

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

Register here…

 

About Jacki: Jacki Liddle is a research fellow and occupational therapist researching quality of life, participation and life transitions. She is particularly interested in understanding and optimising the community lives of people living with neurological conditions, older people and family caregivers. She is currently involved in codeveloping technologies with consumers to support communication and to monitor the impact of health conditions during everyday life. She developed the CarFreeMe program to help people remain active and engaged in their communities after stopping driving.

About the Webinar: This presentation will cover two topics that relate to ways of supporting continued participation in those things that are important to you while living with dementia. The first is an introduction to occupational therapy. I will talk about occupational therapy’s (OT) role in supporting the participation of people living with dementia and their care partners in occupations that are important to them. I will also give an overview of the evidence for occupational therapy interventions. The second topic is a look at the co-design of technology and how consumers can and should be involved in designing technology. I will look particularly at our experiences with co-design in the Florence Project at the University of Queensland. The Florence Project is co-designing technology to support communication with people living with dementia and their communication partners. I aim to have time for questions and discussion as I would love to hear people’s thoughts about these areas.

Wednesday, November 22, 2017 – times (USA/UK/EU/CA):

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

Thursday, November 23, 2017 – times (AU/NZ/JP/IND/TWN):

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

The webinar runs for up to 1.5 hours.

Register here…

Check your time using this link: https://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+November+2017+Webinar%3A+%22Ways+to+participate%3A+Occupational+therapy%2C+and+co-design+of+technology%22&iso=20171123T0730&p1=240&ah=1&am=30

YOUR DONATIONS ARE APPRECIATED, AND ARE OUR ONLY SOUCE OF INCOME. WITHOUT THEM, DAI COULD NOT PROVIDE THE MANY FREE SERVICES FOR ITS MEMBERS.

PLEASE CONSIDER DONATING HERE: https://www.dementiaallianceinternational.org/donate/

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 as it depends on each presenter.

DAI Webinar: “Peer support groups and assistive technology: An Italian perspective”

Please register for our next DAI online “A Meeting Of The Minds” Webinar, “Peer support groups and assistive technology: An Italian perspective”.

  • October 25, 2017: 3:30 PM Chicago (CDT) USA
  • October 26, 2017: 7:30 AM Sydney (AEST) Australia

This event is being hosted by Dementia Alliance International (DAI) and is available online as a Webinar. Although it it set in a number of time zones, it is only ONE event.

About the hosts:  Cristian Leorin is Co-Founder and President of Novilunio Onlus; Eloisa Stella is Co-Founder of of Novilunio Onlus. They are both passionate about empoweing and hearing the voices of people with dementia, and Eloisa has been a very active supporter for DAI, including providing many Italian translaions of our materials.

About the Webinar:  In this webinar, Eloisa Stella and Cristian Leorin, co-founders of Novilunio, will provide an overview of how dementia is experienced and perceived in Italy and their efforts to promote a culture of positive change in their country. Founded in 2014, Novilunio is a non-profit organization that offers online and offline resources and activities inspired by a humanistic approach to living with dementia.

The speakers will introduce Novilunio’s new network of online peer support groups for care partners of people with different types of dementia. A network of online groups specifically dedicated to individuals living with dementia – the first of its kind in Italy – is also slated to be launched in 2018 inspired by the good practices of DAI’s peer support groups.

The second part of the webinar will be focused on Novilunio’s approach to assistive technologies, which combines “calm technology” principles with person-centered and human rights-based approaches to supporting people with acquired disabilities within the context of the next generation of connected devices. Such methodology is currently been studied within the EU-funded project REMIND, carried out by a Consortium of 12 European partners, including Novilunio, and 3 universities from Colombia, Argentina, and South Korea.

Following DAI co-founder and Treasurer John Sandbloms’ recent visit to Italy as a keynote speaker to present in Milan, this will be an interesting follow up to DAI’s presence in Italy. We will publish a blog about John’s visit next week, followed by a blog on the great work of our members in Canada th week after.

World Alzheimer’s Month 2017

As most people who follow this blog will know it is now World Alzheimer’s Month 2017 #WAM2017. Each September we make our efforts more focused than usual on raising awareness and supporting people with dementia and their families, and many organisations are hosting activities that you can get involved with.

Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.

World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.

For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.

Currently, our work is at the global, national and grass roots level, and where possible, and we aim to support local groups of people with dementia and their families who are workign in their local communities. At the grass roots level, our online peer-to-oeer support groups, cafes and “A Meeting Of The Minds” Webinars continue to be well attended.

As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar.  Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.

Watch our latest Webinar on Preventing, stabilising or reversing dementia

Our very sincere thanks to Dr Dave Jenkins and his partner Miki Okuno for their efforts in presenting to our DAI members and supporters last week on the Bredesen Protocol. They are based in Bali currently, so it really was an effort, as it was 4am for them!

 

We understand there are a lot of people who see this approach as futile, especially if they have been diagnosed many years ago and their dementia has progressed. Perhaps some even see it as a scam.

However, for many of us diagnosed with dementia who have already worked hard changing our lifestyles and improving our health, and who also believe by doing so we may also have slowed down the progression of our individual dementias, it is still hopeful. Make up your own mind, but please do not discount new evidence.

This protocol is based on evidence based research, and hopefully one day, advice for people with dementia on improving our lifestyle, our diet and offering us appropriate disability support and authentic rehabilitation will become the norm, as it is already for most of the other chronic diseases.  Improving well being and quality of life, even if it is not a cure (and even if it does not reverse or stabilise dementia),  has to be a good thing…

It was a very lively Q & A Session following this webinar and which lasted over an hour, although for privacy reasons, we never show that part of the webinar publicly.

To listen to or be a part of the Q & A session, you always have to register for our Webinars and attend.  You can go to our Youtube channel to watch other videos, and go to our events page to register for our next webinar, Dementia 101, by Associate Professor Lee-Fay Low.

“Dementia 101”, by A/Professor Lee-Fay Low

This presentation will provide an overview of dementia including common types, epidemiology and treatments. It will also present highlights of current research into prevention and care, with the opportunity for Q & A.

Associate Professor Lee-Fay Low’s 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.

Lee-Fay has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice. She has attracted over 4 million dollars in research funding, authored over 80 peer-reviewed articles, six book chapters as well as two books (one co-authored with DAI Chair, CEO and co-founder Kate Swaffer) on dementia. She thinks that research is fun, and sometimes even admits to liking statistics.

To find out more information, and to see the time and date in your city, please go to our events page or the registration page here…

DAI in Kyoto, Japan

DAI members and many others with dementia had a very positive time in Kyoto for the ADI 32nd conference recently. We all  worked hard to ensure ALL people with dementia AND their families in ALL countries get better support, and DAI provided a platform via its workshop for many to have the chance to speak, who were not on the program.

As always, the deep bonds that the experience of being diagnosed with any type of a dementia, or supporting someone with dementia, brought people together in ways that are difficult to describe.  It is like being in a bubble of love and deep understanding, that others cannot fully understand, and even though as individuals we sometimes have differences of opinions, we are all facing the same things. Even without dementia, we are all going to die, so we are surely better off to just get on and work together anyway.

One of the valuable lessons DAI is learning, is that when a member passes on, or deteriorates to the point of not being able to be an active member, or moves on to do their own thing, we have many others willing to take on roles to support the global community of people with dementia and our local, national and global advocacy efforts. Sadly, because there is a new person being diagnosed with dementia  somewhere in the world every 3.2 seconds, this will always be the case!

DAI’s  workshop had more than 280 people in attendance, and about 13 people with dementia representing 6 or 7 countries, some with their care partners, presented at this event. The one thing that became very clear, as they were all sitting on the stage, is that no one could tell the difference between those of us diagnosed, or our care partners, in terms of who looked like they had dementia. The other things it highlighted as each person or couple told their stories, is that dementia effects everyone differently, and what is a good life to one person is different to another. the late Professor Tom Kitwood was right in talking in terms of person centred care, even though this is generally still rhetoric in care settings. The workshop panel Q & A session was also very interesting.

Informal feedback we received at the conference from many, was our workshop, and the one run by the Japan Dementia Working Group the next day, where I think they may have had more than 300 people attend, were the two best sessions of the conference.  We are  keen to see the formal feedback from the ADI survey that has just been sent to delegates.

We have no idea how to help 50 million people, but ONE step, ONE small action, EVERY day, EVERY week, EVERY month, one year at a time is what individuals with dementia, Working groups of people with dementia, Advocacy organisations, and DAI are all trying to do. Together, we are so much stronger, and the collective voices of people living with a diagnosis of dementia have also become louder, and perhaps much more demanding than ever before.

The  conference in Japan was made inspirational by the sheer volume of people with dementia, and the energy and charisma of the members of the The Japan Dementia Working Group. Their friendship and hospitality was incredible, a was that of their supporters.  They are also wanting to join DAI, collaborate with us, and work on the global human rights, as well as human rights in Japan.

After the conference ended, DAI also went to Osaka, and Christine Bryden, James McKillop, and I, and others, were there as part of a panel discussing dementia, and being filmed to raise awareness in Japan. Christine gave a keynote speech of what she has seen in her 22 years of living with dementia, and the changes in Japan since her first visit there. Christine started the advocacy work in Japan, and people with dementia are definitely running with their own advocacy efforts now. It is incredible to see the ripple effect now of the work of so many people, started by a few long before many of us were diagnosed or knew anything about dementia.

DAI thanks the early advocates, as without them standing up and demanding a voice and a seat at the table, we would not be where we are today.

As I wrote on Facebook after the conference, one young woman from Indonesia who was at the ADI conference told mentioned to me and John Sandblom (and his wife Cindy, her first time to an ADI conference) that is was because of meeting and listening to us and our speeches last year in Budapest, that she has decided to set up a global group for YOUNG carers. WOW, how exciting is that! DAI is going to work with her, to support that effort. This has been a dream of many members at DAI who live with YOD, and have seen our children face with with us, with little or no support.

There is much more to report, especially on human rights, but also we will share many of the presentations given by people with dementia in Kyoto once we have had some time to format them, including the DAI workshop, as well as adding a photo collage of our time together.

THANK YOU TO THE PEOPLE OF  JAPAN FOR YOUR CORDIAL HOSPITALITY, YOUR FRIENDSHIP AND LOVE, AND FOR CARING AND SUPPORTING US ALL SO VERY GENEROUSLY. MANY OF US HAVE LEFT A PART OF OUR  HEART WITH YOU ALL.
Finally, a reminder to register for our next Webinar with Rhonda Nay, on Sex, Death and Dementia… this is one you will not want too miss.