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.
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.
The International Day of People with Disability (IDPwD) is a United Nations-sanctioned day, celebrated internationally on 3 December, with the aim to increase awareness of gains to be derived from inclusion of people with disability in every aspect of political, social, economic and cultural life. It is imperative that persons with dementia are included in these campaigns.
The theme this year is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.
It focuses on the empowerment of people with disability for inclusive, equitable and sustainable development as anticipated in the 2030 Agenda for Sustainable Development.
We must ‘leave no one behind’
We must recognise disability as a cross-cutting issue, and
To celebrate the International Day of People with Disability this year, and as we work towards claiming our rights, alongside all other people with any disabilities, let’s watch the first DAI Side Event from the CoSP in June 2019 again.
This week, in our “Meeting Of The Minds” Webinar, we were honoured to listen to Dr Al Power on the urgent need to stop using the framework known as Behavioural and Psychological Symptoms of Dementia (BPSD), and to reframe how we view, and treat people with dementia. Thank you Al.
Note: Al’s slides were too large to upload on our website, so please contact us if you would like a copy emailed to you.
Join us for our next DAI “Meeting Of The Minds” Webinar, with Dr Allen Power on looking Beyond BPSD (Behavioural and Psychological Symptoms of Dementia).
Please note: this is one event, set in a number of different time zones. Register now…
About the Webinar: In this session, Al will frame his overall view and approach to dementia and explain how the framework of ‘Behavioural and Psychological Symptoms of Dementia’ is inadequate to meet the needs of people living with the diagnosis, and actually leads to use of potentially harmful medications. Al will show how an approach focused on various aspects of well-being provides insights into root causes of distress and provides a pathway to more sustainable, drug-free approaches. Al will share stories from his experience that support the approach and also some significant data of its success in a state-wide initiative in the US.
About Al: Dr. Allen Power is an internist, geriatrician, and Schlegel Chair in Ageing and Dementia Innovation at the Schlegel—University of Waterloo Research Institute for Ageing in Ontario, Canada. He is also clinical associate professor of medicine at the University of Rochester, NY, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities.
Dr. Power’s book, Dementia beyond Drugs: Changing the Culture of Care was named a 2010 Book of the Year by the American Journal of Nursing. His second book, Dementia Beyond Disease: Enhancing Well-Being was released by Health Professions Press in June 2014 and the second edition of Dementia Beyond Drugs was released in 2017. Dr. Power also has a 20-year history working in culture change in aged care. He led St. John’s Home in Rochester, New York to become the world’s largest Eden Alternative member home, and also helped develop St. John’s Penfield Green House homes—the only community-integrated Green House homes in the US.
Wednesday, November 27, 2019 (USA/CA/UK/EU):
10:30 am Honolulu
12:30 pm Pacific
1:30 pm Mountain
2:30 pm Central
3:30 pm Eastern
8:30 pm London/Glasgow/Dublin UK
9:30 pm Paris, Munich, Amsterdam, EU
Thursday, November 28, 2019 (AU/NZ/JP/SGP/TWN/CHN):
6:30 am Brisbane, AU
7:00 am Adelaide AU
7:30 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei//Beijing
9:30 am Auckland, NZ
The Webinar runs for 1.5 hours. Check your time if not listed above with this link.
Well, almost everywhere. We have members in 49 different, and a great many are very busy locally, nationally and internationally.
DAI members attend meetings and events at the United Nations in New York and Geneva, the World Health Organisation in Geneva, and meetings or specific advocacy events in Lausanne, Washington, Sydney, Canberra, London, and quite literally, cities and towns all over the world. There are simply too many to list!
The voices of all people impacted by dementia matter, and our advocacy, and for some, activism is important and is increasing, both in terms of the numbers of people with dementia and/or their families becoming involved, and the ‘volume’ of our voices.
We are being heard, but little has changed:
People with dementia are still being advised to ‘get their end of life affairs in order’, and offered little if any support to live positively and independently, for as long as possible.
The style of language being used in all forms of the media remains persistently negative, disabling and disrespectful; there has been little change in terms of language in the clinical and academic sectors either.
Researchers and health care professionals still do not manage dementia as a condition causing cognitive and other disabilites, many even insisting on th medical model of post diagnostic care. This is in spite of the fact that the World Health Organisation Factsheets on Dementia have stated for some years now that “Dementia is a major cause of disability and dependnce in older persons.”
People with dementia are still not provided with disability assessment or support soon after diagnosis.
Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
When talking to people more recently diagnosed with dementia, it is clear the Dementia Friendly initiatives have done little to change what happens for them at the time of diagnosis, or after. In the broader context of civil society including health care professionals, they have rarely changed attitudes, and have barely, if at all, decreased the stigma or discrimination still being experienced.
Attitudes to dementia have not changed
In the recent ADI World Alzheimer’s Report on Attitudes to dementia, some of the key findings of the report include:
Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia.
35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.
Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
40% of the general public think doctors and nurses ignore people with dementia.
These findings, in particular number 4, are deeply disturbing, and are likely a further indication of the lack of tangible impact of advocacy.
So, if dementia advocates keep doing what has always done, and keep getting the same results, unless WE change, nothing will change. As a prominent care partner Jayne Roberts said last year, “Everything has changed, and nothing has changed.”
As advocates, we need to re-asses our plan(s) of action.
Perhaps one of the key factors in why very litttle has changed, epecially for newly diagosed peopel with dementia, may be that we should ALL be working together more collaborativley, with each other, both individually and between organisations.
The challenge with that of course, is that many organisations and many individuals have differing agendas, or are more concerned about funding. Of course, funding for all organisations is very necessary, but it is not yet adequately helping people diagnosed with dementia, or our families.
It is definitely time to do something different; just what that is yet, from the perspective of DAI, is still under review.
It is with great pleasure that we award James McKillop MBE from Glasgow, Scotland the 2019 Richard Taylor Memorial Advocates Award.
Although we made this announcement personally to James during our online Cafe Le Brain earlier this week, we are pleased to announce it officially today, on World Alzheimer’s Day.
James has been a Pioneer dementia advocate, having been diagosed himself with dementia in the last Century!
DAI is indeed honoured and privileged to work and walk beside him, and our members find him a constant inspiration. He motivates us all to keep going, and is always a source of great wisdom and wonderful Scottish humour.
Since joining DAI, James has continued his work locally and nationally, as well as being a very active DAI member on occasions representing us internationally, travelling with his dear wife, Maureen. James became a DAI board member some years ago, and continues to co host the UK peer to peer support group on a Monday morning, which now also meets on Thursdays.
Congratulations from us all James.
Thank you for all that you have done, and continue to do.