In August 2019, Dr Noelannah Neubauer presented a #DAI Webinar, “The changing face of dementia and missing person incidents: The International Consortium on Dementia and Wayfinding”. Watch her presentation here:
The number of lost and missing person incidents involving those living with dementia has been on a rapid incline in recent years. Despite the increasing number of available strategies to lessen this issue, research focusing on managing and preventing lost incidents among those living with dementia is limited and few key stakeholders, such as persons with dementia have been involved. International collaborations looking at this issue from a global scale has also yet to be explored. This has led to the formulation of an international consortium on dementia and wayfinding.
Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positilvey than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.
In our October 2019 “Meeting Of The Minds” Webinar our two speakers talk about the value of assistance dogs for people with dementia.
Professor Kevin McVilly presented on a project on Assistance Dogs for people with Young Onset Dementia; 3-year study. This project documented the experience of 14 people with Young Onset Dementia and their families, over a 3-year period, of having a trained assistance dog.
Phil Hazell shared his personal expeience of Living with Sarah: the value of assistance dogs for people with dementia, and his story of being diagnosed with younger onset dementia, and the value of having an assistance dog. His presentation considered the benefits such as increased Self Esteem, Purpose in Life, Independence, Freedom and importantly, increased quality of life and well-being. Phil also discussed some of the challenges, or what he calls a ‘reality check for those considering an assistance dog, and the joys.
Please note: this is one event, in a number of time zones.
About the Webinar: In this session, Professor Brandão will talk about her journey as a Speech-Language Therapist in becoming a clown facilitator for promoting communication and wellbeing. She will tell the story of the clowning group of older adults living with aphasia with whom she works with in Brazil. Professor Brandão’s presentation will also explain the value of nonverbal communication. Additionally, she will outline the key elements that made her choose active clowning as a medium to promote the experience and expression of communicative empowerment. Finally, Lenisa will provide an overview of her professional plans in working with clowning and older adults who live with aphasia and/or dementia.
About Professor Lenisa Brandão: Speech Language Therapist, Doctor in Psychology, Posdoc in Cognitive Science and Psycholinguistics. Senior Atlantic Fellow at the Global Brain Health Institute. Herthesis was about how people living with Alzheimer’s disease (AD) tell personal stories and how that relates with their cognitive abilities. Lenisa’s posdoc study was about how visual and verbal prompts can help people with AD maintain topic and express more ideas in conversations. Her recent work concentrates in the use of theatre and clowning as a medium of expression for people who survive stroke and live with aphasia.
Lenisa’s personal experience: her father lives with normal pressure hydrocephalia and her grandmother (a great story teller) had aphasia in the last years of her life.
Please note: Whilst we usually publish the recording of the event on YouTube afterwards, it does not include the Q & A sessions, and occasionally, we do not publicly publish recordings of your online Webinars at all, so if you don’t register to attend, you may miss seeing our events.
Kate Swaffer, Chair and a co founding member of Dementia Alliance International recently presented to the Houston Senior Resource Conference, a 4-day online event. Her presentation titled “From dying, to living positively with dementia” is available to watch now.
Our newly appointed Finance Officer, Tamara Claunch also presented at this event, which will be available to watch here soon.
DAI is very pleased to introduce the 2020 Board of Directors, and to inform you of DAI’s updated Governance structure.
This year, we have included two positions for people who are not DAI members, which is not different to other organisations who have staff, except that ours are not yet able to be paid. One day, we aspire to have paid roles, for staff, including members.
2020 Board of Directors:
Chair/CEO, Kate Swaffer, Australia
Vice Chair, Alister Robertson, New Zealand
Treasurer, John Sandblom, USA
Eileen Taylor, Australia
Wally Cox, USA Christine Thelker, Canada James McKillop, Scotland, UK Bobby Redman, Australia Bill Turner, Australia
Two new non member (volunteer) positions: Secretary, Sarah Yeates, Australia Finance Officer, Tamara Claunch, USA
Most other organisations usually have many staff in paid roles, but due to a lack of funding, DAI is still not in a position todo so. We remain indebted to both Sarah and Tamara for their willingness to give of their time freely, for the benefit of members and supporters of DAI.
Three Working Committees:
Within these committees, there is a permanent Finance and Fundraising Sub committee, an Action group, a Membership sub committee, and other teams (or committees) as required.
Professional Advisory Council:
This new group consists of a number of global dementia experts, researchers, medical doctors, an attorney, a CPA and others, to be announced soon.
Please note, our updated By Laws will be added to our website as soon as they have been finalised.
Finally, our Annual General Meeting (AGM) is to be moved to June each year, and the new board positions elected at this meeting will be effective in the next fiscal year. All of these changes have been approved in ine with our By Laws, and to improve our governance.
About our new Vice Chair: Alister is from Napier in New Zealand was diagnosed with younger onset Alzheimer’s in 2014. Soon after his diagnosis he was fortunate enough to attend a day programme run by Dementia Hawkes Bay, which he now attends three days a week. Alister has become an active member of DAI, having been involved in our Action Group and Board. This week, at our AGM, he accepted the nomination as Vice Chair in 2020. He is also a very active advocate for raising awareness of dementia in NZ and globally.
DAI members also wish to thank our strategic partners and sponsors, and every single person who so generously makes a donation to DAI. Without your donations and sponsorship, we could not continue to provide free membership and services to our members and supporters.
Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
DAI held its first Capacity Building Workshop in Las Angeles in July
DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
A second volunteer, Tamara Claunch from Houston Texas joined long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
Updates to many of our Governance documents and By Laws, soon to be announced and shared
It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
We have two formal publication in progress, finally, to be released sometime in 2020
Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.
DAI wants to hear ALL of the voices of dementia, and invites YOU to have YOUR say. This includes, but is not limited to:
People with dementia
Advocacy organisation staff
Health Care Professionals
Dementia Alliance International (DAI) wants to hear from you about your experience being involved in advocacy, research or policy. If you are a person with dementia, a supporter or family member, a researcher, or dementia policy maker- please consider completing our short survey and help shape the future of dementia advocacy.
In many countries, policy makers, researchers and service planners are increasingly valuing the inclusion of lived experience advocates with dementia and care partners in projects. At the same time, there continues to be challenges in understanding what involvement should mean, who should be involved and how their involvement will be supported.
This research will help to identify the next steps in ensuring meaningful and valued participation and involvement of people with a lived experience of dementia. DAI will be releasing a publication mid-next year which will include recommendations about next steps.
Don’t miss your opportunity to have a say and be part of this important work.
As December arrives I wonder yet again where the year has gone; it seems I have lost much of what’s happened over the past year that we have arrived already to the place that will bring it to an end.
I’m grateful, it looks like I will make it to see another year in. It’s a time to reflect, to sit in quiet peacefulness; I don’t dare look too far beyond today, as Dementia has taught me we never know what tomorrow is going to look like.
This past year has seen many changes for me, I feel the decline, I know I am functioning different than a year ago, but I also know staying active, being engaged, are helping me to maintain in a better fashion that I might otherwise.
Every day, I marvel that my term as a DAI board member has been completed, where has the time gone, and am honoured to sit for another term. I’m not always sure if people understand the magnitude of commitment and belief I have in DAI and all that it provides. I will be forever grateful to the founders who worked hard to create a truly unique and necessary platform for people living with Dementia.
I live alone so it truly is a life line for me, and I was thrilled that in this past year DAI has added the living alone support group, it’s a great place for people living with dementia who are on their own to talk about their particular types of challenges and have support for those sharing them.
Over the last year, I have worked hard to reach out to has many people As possible and encouraged them to join DAI, and with everyone’s continued efforts and support we are seeing DAI continue to grow. This does my heart an soul a lot of good.
I also attended a capacity building event in L.A along with other DAI members, it was a great workshop, and we have since seen and continue to see DAI evolve. The DAI board is transitioning into a governing board, which is good for the organization as a whole going forward. We have more committee’s working which engages more of our members, which is also great to see….
Together we are stronger, and as people take on new and varied rolls the diversity will keep us a healthy organization.
I’m truly proud to be part of such an organization.
I have also taken part in our continued efforts to advocate at all levels and was honoured to take part and present at the United Nations 12 annual COSP event, and then while there has been the opportunity to make a statement at the Ford Centre at the Woman and Disability Side Event. I left both of these events forever changed, and more determined to use my voice for as long as possible, and I’m so proud of the work that DAI does on behalf of all those living with Dementia in this regard.
I continue to write my blog, I have a book being published in 2020, and continue in my efforts to make a difference for all living with dementia, my next stop will be in Singapore at the Alzheimer’s Disease International Conference where I will do an Oral presentation as well as a poster presentation.
I’ve also become actively involved with Dementia Advocacy Canada as well and am thrilled that they are such strong supporters of DAI and are directing people with Dementia to DAI. I’m also involved with Trec, (which is a research program focused on developing solutions for improving the quality of care provided to nursing home … and four other research groups in an ongoing effort to make a difference.
My world is shrinking and yet growing at the same time, my life is nothing as it was, but it is rich and full because of the opportunities I have received through DAI. The friendships I have gained through DAI are some of the best I’ve ever had.
So, as Christmas approaches, I reflect. With gratitude and appreciation for all that Dementia has provided me rather than focus on all that is lost. As I reflect and look back, I realize that for all the days and times that I sit feeling like I’m not doing anything or that I’m not doing enough, in part because I forget what I’ve done, I have to remember, I do have dementia and what any of us do individually and collectively is nothing short of miraculous.
In closing I want to wish you all the very best of this holiday season and thank you for the privilege of serving such a great organization. I think 2020 is shaping up to be a year of great accomplishment for us all.
December 12 is International Universal Health Coverage Day, a day where we must remind governments AND health care providers that everyone has a right to health.
As background on the history of this day, in 2014, the Universal Health Coverage Coalition started to celebrate 12 December as Universal Health Coverage (UHC) Day, commemorating the date on which the UN General Assembly officially recognised the importance of UHC. It is a United Nations-designated day, which was officially resolved on 12 December 2017.
Since then, the day has become the annual rallying point for the growing global movement for #Health4All.
Every person—no matter who they are, what health condition they have, or where they live, should be able to get the quality health coverage and services they need without facing financial hardship.
DAI knows that most people with dementia do not receive full health coverage, nor adequate post diagnostic support to live with dementia; instead, they are too often only advised to go home and prepare to die. And for those people with dementia and their families who choose a different pathway, the cost is often crippling.
Three months after the historic high-level meeting the the United Nations General Assembly on universal health coverage (held on 23 September 2019), we understand that dementia was not specifically included in discussions, in spite of the many years of global advocacy by DAI and ADI.
This is not a positive outcome for the more than 50 million people currently livign with dementia!
This high-level meeting, held under the theme “Universal Health Coverage: Moving Together to Build a Healthier World,” aimed to accelerate progress toward universal health coverage (UHC), including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.
Yet, we know that people with dementia are still being denied access to health care, all over the world.
Let’s all rally together to ensure everyone, including people with dementia are not left behind in the 2030 Sustainable Development Goals Agenda!
On this day on which we celebrate Human Rights Day in 2019, DAI and ADI wish to invite you to join us for a webinar in 2020. The United Nations celebrates ‘tremendous activism’ of the world’s young people. DAI especially celebrates the activism of everyone who is working towards rights for people with dementia and their families. This includes many young people, as many have to care for a family member with dementia, especially in low and middle income families. Let us all celebrate everyone’s human rights. Listen to DAI Chair, Kate Swaffer on why rights are everyone’s business.