As we celebrate our 7th birthday this week, we are also delighted to introduce Dementia Alliance International (DAI) member Alister Robertson as our new Chair.
Alister has been a member since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.
We are truly delighted to introduce Alister Robertson as our new Chair to you. Alister has been a member of Dementia Alliance International (DAI) since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.
Alister is taking over from Kate Swaffer who continues as a board member, and the CEO.
About Alister: Alister’s new leadership role has been endorsed and welcomed by the Board of Directors and by our members, and is recognition of the hard work Alister has done globally for our members, and in New Zealand where he is on the Board of Alzheimers New Zealand and a member of their Advisory Group.
He has a strong commitment to supporting people with dementia to have a voice, and to be included locally, nationally and globally.
Alister graduated from Lincoln University, Canterbury New Zealand in 1978 with Bachelor Agricultural Commerce. Spent the following 30+ years in the rural finance sector lending money to the primary sector.
In 2009 Alister and his wife, Charlene decided they would like to do something together, given their four sons had finished their schooling and were doing their own thing. Alister and Charlene resigned from their respective jobs, sold their newly built home and purchased a Motel in Taupo, which they sold four years later.
They then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They had a retail and café business until Alister’s dementia diagnosis.
Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. He endeavours to follow the advice of trying to maintain a healthy brain by way of diet, remaining socially involved, good sleep, staying mentally active and exercise. Alister is a keen cyclist, which is his main mode of transport and this helps keeping him fit.
Alister participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI, as well as more people with dementia globally to join for peer-to-peer support, and to get involved in the global work done by DAI.
On the final day of Dementia Awareness Month, we share a short video of one of our co founders, Kate Swaffer talking about three things she now knows about dementia.
As a co founding member of DAI, Kate has often said she is glad she co-founded DAI, because it provides support, gives people hope, and helps them to ‘reclaim their lives‘, after it has been stripped away.
Whilst not all members join peer to peer support groups, and not all members become active in DAI, those who do, regularly say: “DAI saved their life”. DAI is Life Changing.
3 Things I know [about dementia]
The Drum, SBS, Australia
Introduction by Ellen Fanning, 5 May 2020,
Reporter Stephanie Bolte
When [DAI co-founder, Chair and CEO] Kate Swaffer started to see words upside down over a decade ago, she thought it was a result of brain surgery she’d had. It turned out she was one of more than 26,00 people in Australia under the age of 65 with what’s known as younger onset dementia.
Told to get ready to die, Kate’s world seemed to disappear overnight, but she realised it didn’t have to, and she has gone on to co-found Dementia Alliance International and advocate across the globe for dementia in practice to be seen as a disability. She sat down with reporter Stephanie Boltje, before the Coronavirus shutdown, to explain three things she knows about dementia.
Since you’re here…
… we’re asking readers like you to support our members, by donating to our organization.
With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.
Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope. Thank you.
It was World Health Day on 7 April 2020, and we celebrated the work of our nurses and midwives by reminding everyone of the critical role they play in keeping the world healthy. Nurses and other health care professionals (HCPs) are at the forefront of the COVID-19 response.
Frankly, without nurses, there would be no response to the COVID pandemic; without them, our lives would not be as safe.
Many DAI members were also qualified nurses or health care professionals, and although they cannot contribute to the current health crisis as nurses, due to having retired, their work has continued on through DAI.
Determination, service to others, empathy and compassion are the trademarks of all nurses. DAI salutes and thanks you.
Below we have shared some of the stories of a number of retired nurses wo are also members of DAI, not only to help raise awareness of the work done by nurses and midwives, but to raise awareness of the important work done by members of Dementia Alliance International (DAI).
Listen to DAI Chair, CEO and co founder Kate Swaffer, on being a nurse, volunteering for DAI, and why we need your support.
By Kate Swaffer: As a proud retired nurse, who has worked in aged and dementia care, and then operating theatres, it is heartbreaking to see just how hard our nurses are working globally to support the whole world through the COVID-19 pandemic, and this is too often without adequate infection control measures available to keep THEM safe.
Many people with dementia who take on leadership roles in DAI were also nurses or other health care professionals. It seems to be innately who ‘we’ are: helping others. In my life as a nurse and also a volunteer, which I have been doing since my early teens, DAI is the most important volunteer role I have ever undertaken.
Although I work at least as many hours every week as most other CEO’s, very often more, but without the same funding or respect as them, it is truly worthwhile leading an organisation that is so proactively working to support others with dementia to live more positively, and to advocate for human rights and disability rights.
But DAI needs your help. Without donations or partnerships, DAI could not continue, as we are not a well funded organisation; on top of that, we still have no paid staff.
By Maria Turner: “Apart from my family, my nursing career was everything to me, and I was devastated having to give it up. I had to retire from my work as a registered nurse after 30 years, and although I had spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and for Dementia Alliance International.
Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.
DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.
If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.
Do not ever let dementia define you.
Life doesn’t end with a dementia diagnosis, a new life begins.
Maria’s son Rhys also said: ‘Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.
This is in fact, why it is so important for people with dementia who were nurses to consider volunteering; whether it is at their local Red Cross or Church, or an organisation such as DAI.
It’s not just important it’s the fibre of our very beings.”
(includes excerpts from a speech given by Maria and Rhys at the ADI conference Chicago: Mother and Son)
By Phyllis Fehr: “As a person living with Alzhiemers and a former Intensive Care Unite (I.C.U.) Nurse, I have always felt that this was a hidden and never talked about disease. When I was diagnosed I felt it was my new lease on life to change this so that other people living with dementia didn’t have to hide that they could have a voice and that we have support in each other.
During this time of COVID-19 it is never been more apparent to me that we need extra support. We all know what isolation feels like and to have this added burden of having to be isolated and not leave the house it’s very difficult, it’s a different kind of isolation. So I felt it highly important that we try and help people Living with Alzheimer’s and dementia to not feel so isolated, not feel so alone and to feel supported.
In my years of being a D.A.I. member the camaraderie and learning experiences that we have amongst us is absolutely phenomenal it helps me to get through my day-to-day life.
D.A.I. offers online peer to peer support groups. We learn from each other, we learn how to cope with the day-to-day challenges of living with dementia. We help each other to stay uplifted, we support each other in times of need and there’s no bigger need them at the present. So D.A.I. chose to add extra support groups during this time. I think it’s been wonderful rather than having a once a week meeting we get together twice a week.
We help each other by saying what we’re doing to cope, so that others see that there still are ways to see your grandchildren even though they’re not in front of you. We discussed ways of helping us deal with our stress and anxiety over all of what’s happening and without these groups I don’t know if I personally would be able to cope.
With my nursing background I know what is going on, I know how sick people are and I fear for other people who may get this disease. I also know that people with any type of dementia including Alzheimer’s are more vulnerable at this time and worry about getting this disease, so if we get any form of illness we all decline a little bit more and we’re all worried that if we get this where would we be.”
By Agnes Houston: “I feel I was given a diagnosis and could either sink into the corner and be ‘done to’ or take control of my life. I feel like I am leaving a legacy for others so they can stand up and be a citizen, not a victim.” (extract from an interview for Elder Magazine, Seizing control of dementia)
By Tracey Shorthouse: “Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Tracey is determined to keep her mind and her body active during the coronavirus pandemic with a variety of activities and hobbies at home…. In the old days, when I was a nurse, I used to use Davina McCall’s workout DVDs in a way to keep fit. She really inspired me. And I have started to do that again as it’s so important to keep my body moving.” (extract from the Alzheimers Society UK blog, ‘Life during lockdown’)
It is indeed important to keep moving at this time, and we recommend you contact your local gymnasiums, exercise physiologists, pilates or yoga instructors or other providers including physiotherapists, and ask if they have online group. Many are currently providing online telehealth visits like this for free.
Thank you for honouring nurses and midwives with us, and for your support.
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.
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.
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.
On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!
Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.
The 71st session of the World Health Assembly officially opens on Monday 21 May. Although the official agenda does not begin until Monday, the action starts days before.
DAI is working more closely with the NCD Alliance and many other organisations, now also including the Worldwide Hospice Palliative Care Alliance (WHPCA), and we will be joining the NCD Alliance #ENOUGH Campaigns this week, and the many activites of the WHPCA. As dementia is a non communicable disease (NCD), and we have ahuman right to appropriate palliative care, these are important for us all.
Here are two of the #NCD Alliance campaign messages:
ENOUGH: Time to translate commitments to action for NCDs. At #WHA71 we must put people 1st, make #NCDs an investment priority backed up with evidence-based policies, protect children from obesity and give all #PLWNCDs access to treatment #enoughNCDs #beatNCDs
Calling all leaders at #WHA71. We have had ENOUGH. We want and need you to commit to putting people first by involving #PLWNCDs in the decision making process. Our health is our right, and all people need action to protect it right now! #enoughNCDs #beatNCDs #NCDvoices
Below is a list of some of the meetings DAI is attending and the many interesting side-events throughout the week:
20/5 – 18:00 – 19:30 pm – Panel discussion on Saving Lives, Spending Less: A Strategic Response to Noncommunicable Diseases
21/5 – 9:00 am – Opening of the World Health Assembly
21/5– 10:30 – 11 am – NCD Alliance meeting
21/5 – 2:30 & 4:00 pm – Meetings with the WHO
21/5 – 18:00 – 19:45 – NCD Alliance Side Event: ENOUGH. Making 2018 the year for action and accountability on NCDs
22/5 – 17.00-19.00 – Global Rehabilitation Alliance Meeting
22/5 – 18:00 pm – Taking Civil Society Engagement to New Heights
23/5 – 8am – 11am – WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs
23/5 – 16:30 pm – From the Ground Up: NCDs, TB and Resilient Health Systems
23/5– 19:00-19:50 – ADI Side Event: Mobilising Society: Inspiration for developing national responses to dementia
24/5 – 7:30 am – Changing the Story: Creating a New Obesity Narrative
24/5 – 12:30 pm – Reducing Sugar, Salt and Fat to Prevent NCDs: Bold Initiatives and Success Stories
24/5 – 16:30 pm – Human Rights in Global Health
24/5 – 8 -10 am – Global Health Council, Living Goods, IntraHealth International, Frontline Health Workers Coalition – Diverse Pathways and Partnerships to Universal Health Coverage
Other involvement including times and days to be advised in our role working with Worldwide Hospice Palliative Care Alliance, are based on their goal to “To build increased commitment for an essential package of palliative care as part of UHC amongst WHO and member states”.
I’ll do my best to keep DAI members and supporters updated each day, as the Assembly progresses and outcomes from the many meetings and Side Events I am involved in take place.
Kate Swaffer, DAI Chair, CEO & Co-founder #WorkingForAllPeopleWithDementia
Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.
Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:
Implementing the Global Dementia Action Plan into policy
“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.
I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”
Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.
In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
We are not provided with rehabilitation or other re-abling post diagnostic support
We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
These points are all relevant to national dementia plans
By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:
Significantly improve the quality of life of persons with dementia and our families and care partners
Reduce the economic cost of dementia to individuals, families and governments
Ensure dementia inclusive and accessible communities
The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.
The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.
The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.
Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of community–based rehabilitation is to help people with disAbilities, by:
Establishing community–basedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
This is important in the context of the GDAP and in the development of national policies.
For our communities to be supporting people with dementia, based on human rights, a new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.
We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.
Focus on well being/QoL
Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
disAbility assessment and support , immediately post diagnosis
Grief and Loss counselling, not just information about BPSD.
Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
Support to maintain pre dx lifestyle
Support to continue working if YOD (and is a personal choice)
Support to continue usual activities, socialising, sport, recreation, community engagement, etc
Inclusive and accessible communities (not just dementia friendly)
It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).
DAI’s Next Steps:
Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
Supporting Alzheimer’s societies in developing HR policies & plans
Continuing to submit parallel reports to the UN and the WHO
Promote human rights approach to dementia at all conferences and events
Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
Working with disability organisations, e.g. IDA and IDDC
DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:
Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.
Finally, I have some questions for countries and civil society to consider:
To what extent are your dementia policies based on human rights?
How closely do you work with other disAbility organisations in your country or region?
Do you know how they have used CRPD?
Will you join them to ensure that people with dementia are included?
How are we going to measure 75% of countries have implemented the GDAP by 2025?
Chair, CEO & Co-founder
Dementia Aliance International
As current Chair and CEO of Dementia Alliance International (DAI), I wish to announce that Professor Peter Mittler CBE has stepped aside from his role as Human Rights Advisor to our organisation, to take on an even more important role as the Human Rights Ambassador for both DAI and our strategic partners, Alzheimer’s Disease international (ADI).
We wish to thank Peter sincerely for his incredible passion, expertise and commitment to DAI and to all people living with dementia, in the work we have been doing for the human rights of everyone with dementia, including full access to the Convention of the Rights of Persons with Disabilities (CRPD) and other Conventions, since DAI placed human rights on the global stage in Geneva in March 2015 at the WHO First Ministerial Conference on Dementia.
Peter’s significant contribution to us has been outstanding, and his willingness to share his knowledge with all organisations globally cannot be highlighted enough. We are thrilled that he will continue to work with us in his Ambassador role. We have delayed publishing this post for it to arrive on April 1, 2017 in the UK, where Peter lives, and also to coincide with his birthday on Sunday. Happy birthday Peter.
It has been since that time, that not only have people with dementia become more active in this work, but all Alzheimer’s advocacy organisations and many other individuals or organisations have taken up the baton. The fact that all ADI Council members agreed to this approach at the ADI2016 conference in Budapest last year is a testament to effective collaboration. Since that time, Alzheimer’s Canada has been very actively working towards achieving this.
DAI and ADI are also very lucky to have the support of Mrs. Diane Kingston OBE who takes over the role of DAI Human Rights adviser today.
Diane KingstonOBE (formerly Diane Mulligan) is a UK-based disability rights campaigner. She is Deputy Director of the International Advocacy and Alliances department at CBM, an international Christian development organisation committed to improving the quality of life of people with disabilities in poor communities. In 2012 she became the UK elected member of the Expert Committee for the UNConvention on the Rights of Persons with Disabilities (CRPD). Diane served as an UN Expert for a four-year term, including two years as an elected Vice-Chairperson. From 2007-2011, she was a member of the World Health Organization’s Advisory Board for Community-based Rehabilitation (CBR), and she was the lead author of that organisation’s CBR guidelines component on education. From 2006-2007, she served on the British Medical Association’s Patient Liaison Group and Equal Opportunities Committee, and had advisory input into two publications: Disability in the Medical Profession (2007) and Disability Equality within Healthcare: the role of healthcare professionals (2007). Diane has been supporting DAI’s work for two years.
Dr Nicole Batsch is also supporting ADI and DAI in a consulting role when we are working on joint projects, and has almost 20 years experience developing ageing and dementia programmes across the US and the UK within mostly not-for-profit organisations. Her expertise encompasses many disciplines including developing a literacy programme for seniors, family carer interventions, a hospital-based senior wellness centre, dementia staff training for home care and care homes and initiatives for people with early stage dementia living in the community. One programme, Powerful Tools for Caregivers Online, was internationally disseminated based on its research outcomes and won the 2006 Innovative Excellence award from the Alliance of Work Life Progress. From 2010-2012, Dr Batsch served on the board of directors for the American Society on Aging. In addition, she co-authored the World Alzheimer Report 2012: Overcoming the Stigma of Dementia and was the study author of a survey conducted with over 2000 people with dementia and carers in 54 countries. The ADI report can be found at this link…
We also have new DAI members taking on more of the global human rights work, and we are excited to be able to announce and once again introduce Phyllis Fehr to you. She is a person living with a dementia in Canada, and who has agreed to take on more of the global on human rights work more actively with DAI, on top of her role with ODAG.
Mrs. Phyllis Fehr, a new DAI board member and Vice Chair of the Ontario Dementia Advisory Group who has been actively working on human rights work in Canada, now joins DAI and ADI on the international stage working alongside myself and other DAI members or consultants on the global stage. It is imperative that we pass the baton to more people with dementia, and we are thrilled that Phyllis has joined us globally with this work.
Phyllis was given a working diagnosis of younger-onset Alzheimer’s and Lewy Body dementia when she was 53. At the time she was working full time in the intensive care unit as a registered nurse. Phyllis promotes the abilities of people living with dementia by advocating for people living with this disease both locally and nationally, and now internationally. She advocates change for persons with dementia as an Ontario Dementia Advisory board co-chair with a focus on government policy.
Phyllis recently represented DAI at the United Nations in Geneva on March 20th, together with Dr Nicole Batsch who attended representing ADI, at the first Open Session of the new CRPD Committee. Representatives from civil society and organisations of disabled persons were asked to speak about their priorities for the work of the Committee for the next eight years in the wider context of the UN 2030 Sustainable Development Goals (Action 2030). You can read her full speech in a previous blog here…
Chair, CEO & Co-founder
Dementia Alliance Inernational
For Day 3 of Dementia Awareness Week UK, we are previewing Kate Swaffer’s recent keynote presentation, Dementia Friendly Communities? at ADI2015 in Perth. She talks about what dementia friendly means to people with dementia, highlighting some of the missing pieces of the puzzle in the Dementia Friendly Communities work being done around the world. Thanks Kate, and thanks also to Dr Shibley Rahman for recording it, and giving us permission to share it.