Category Archives: Phyllis Fehr

Canadian members hard at work…

It has been a few weeks since the Canadian National Dementia Conference held in Ottawa May 14 & 15th 2018, and although belated, we are posting the excellent speeches given by two of the co-founders of the Ontario Dementia Advisory Group (ODAG).

We are very proud they are also DAI members; Phyllis Fehr is a DAI Board member, and Mary-Beth Wighton who is the current Chair of ODAG,  and along with Jimm Mann, is a full member of the Canadian Ministerial Dementia Advisory Group.

Today, we are publishing Phyllis’s speech, and tomorrow, Mary-Beths. To say the people living with dementia in Canada are ahrd at work is an understatement, and we congratulate and applaud them all as they work together to ensure the Canadian Dementia Strategy is fully embedded with human rights. Yes, their human rights.

Phyllis Fehr’s Inspirational keynote speech:

Good morning everyone.  How are you this morning?  Are you all excited to be here?  Are you ready to join me in getting down to work? 

First a few THANK YOU’s are in order.

Thank you, Public Health Agency of Canada for taking on the Daunting task of planning the first-ever Canadian dementia strategy conference.  You have remained dedicated and worked hard to make this conference a reality.  I thank you for inviting us to participate.

It is a great honour for me to be here, today.When I say this, I think of the Number of people invited to be in this room -around 150 invited guests. You could have chosen any one of the  

36,290,000-people living in Canada. Yet, here WE are. 

For people living with Alzheimer’s and dementia this is very important because there are 564 thousand people living in Canada with a form of dementia  and there are about 25 of us in this room. 

I see some familiar faces in this group, those of you I have not met yet, I am hoping to get a chance to meet you over the next couple of days.

To begin, I’ll tell you a bit about myself.

My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia. At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments. It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. 

I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office.

Once she entered the office, I felt like I no longer existed.

She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself. 

I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.

But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. So, I requested my neurologist to refer me to someone else.

For nine months, while I waited, I became with drawn. I did not want to be involved. That first gerontologist left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.

The referral took a while, but it was worth my wait. This new doctor, spoke to ME. 

She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. 

I have regained my voice, I have regained my confidence.

I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.

Today, I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.

In truth, my dementia journey began much earlier than age 48. It began when I was 13.

My grandmother came to live with us because she had Alzheimer’s. Years later, my mother was diagnosed with dementia. What a different world we live in today, compared to in the 60s and 90s.

I will end my journey with a story. In our family we are very open and honest about dementia we don’t hide. We educate ourselves about it including the little ones. Not like when my mom and grandmother had it and it was hidden. My four year old grandson has developed stuttering and he attends speech and language classes.  

A couple of weeks ago while there they were doing the education around stuttering and the pathologist took down the mannequin and open it up, so he could see the brain, lungs etc and she explains how it is the signal from the brain that makes you talk and how his signal is getting mixed up.  My grandson looks at the mannequin; deep in thought, when he looks up he looks across the room at his mom and yells “mom I know what’s wrong with nanny, her signals get mixed up just like mine. Out of the mouth of a 4 year child. 

Over the next two days we are going to hear and have a chance to give our input on a number of different topics relating to Alzheimer’s and dementia. 

Things are changing. More people are growing aware, of what it means to live with dementia. Today, we’re working together to make Canada a better place for people living with dementia – to live and not hide.

For those of us who are here representing people with lived experience, we feel an urgency to do this work. This is because we are all aware that this disease is terminal, we know the different stages that we will go through. What we don’t know is when, or how long we have before the decline starts. That is why we feel that this is such an urgent matter.

We are also well aware that there are many others in Canada who will continue this work where we leave off. I am living with what I call the roller coaster of dementia. I have high times when I function well, i have low time when it is hard to function or think, i even have moments when I  are totally derailed.

But I dust myself off and get back on that track maybe a little worse than when we derailed but i keep going. We just don’t know when the day will come that we won’t be able to get back on the track. This is why we all work so hard to make these changes so that in the future other may have a smoother ride. The other side to this is that we have to take into consideration is age and other co-morbidities. We are learning that this is not just a disease of the old.

I don’t know about you, but when I looked at the program for the conference and knew I could choose only one topic in each of the three dialogue sessions, it was hard deciding.

There’s so much work that needs to be done so much work that people with dementia need to have input into. I think this is just the start.

I would also like to Thank you, Laura, Mary Beth, Tammy and Lisa for presenting the preconference workshops.The information you shared will make this conference easier to navigate and help educate us on each dialogue session so that we can better choose which sessions best fit our individual needs.     

The people in this room today represent the 10 provinces and 3 territories in Canada. We have worked to help bring about change for those living with dementia, whether it is in our community, province, or country. The next two days of work will empower us with stronger voices and will give us more solid ground to stand upon. 

What we learn here, will help us implement the changes necessary for people living with dementia in Canada. 

Are you ready to join me… to roll up your sleeves, and get to work? 

Together, we can make the changes for people with dementia to live well with this disease.

Together we will build a world-class national dementia strategy for Canada!

I could go into some of the topics that we will be discussing but I leave that to the other experts that have joined us here, today and tomorrow

In closing I leave you with a quote from Anne Lamott. She once said “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.”  So, I feel that we have waited, watched and worked, and today the dawn begins for dementia in Canada.

Let’s work together. 

Phyllis Fehr at the NCD Alliance Workshop: “Our Views Our Voices”

Dementia Alliance International (DAI) board member and ODAG Human Rights Advisor Mrs Phyllis Fehr represents DAI at the NCD Alliance Our Views, Our Voices workshop. This workshop has brought together people living with NCDs from across the world. The objectives are to:

  • Share the Our Views, Our Voices consultation results with participants
  • Contribute to finalising the Advocacy Agenda of People living with NCDs
  • Explore notions of community identity among people living with NCDs
  • Articulate the vision of the Advocacy Agenda
  • Discuss how to implement the Advocacy Agenda of People Living with NCDs

The workshop will result in the finalizing of the Advocacy Agenda of People Living with NCDs which will be launched at the Global NCD Alliance Forum. It will also serve to cultivate a group of people living with NCDs that will go on to champion the Our Views, Our Voices initiative.

Representing DAI, Phyllis was invited to present as part of the second workshop on Day one, on social justice. This is her speech:

Thank you for this invitation to speak today, representing Dementia Alliance International, whose members are formally diagnosed with dementia representing 44 countries.

It is also an honour to be here to represent the estimated 50 million people living in the world living with dementia, also listed as a Non Communicable Disease. We know there are a lot more people without a diagnosis, too often one they do not want, often because of stigma and social justice related issues. 

When I was 48 when I started noticing signs of dementia, but it took until I was 53 to get a formal diagnosis. Once I received this diagnosis I was told to go home, get my affairs in order and try to enjoy the time I have left.

I did this at first but it wasn’t good enough for me either. I still had my intelligence, I still had all my nursing knowledge, I felt I could use this to help others living with dementia and I initially did do this in Ontario Canada. I sit on the Ontario Dementia Advisory Group (ODAG), and am one of four co founders, as well as their human rights advisor. We are a group of people living with dementia advocating for policy change and social justice.

I also found Dementia Alliance International and joined them, and am now an active board member.

DAI was exactly what I was looking for. They are global, and they are the voice OF people with dementia. Kate Swaffer spoke at the WHO First Ministerial Conference on Dementia in March 2015, and placed human rights and disability rights onto the global stage. Many people with dementia are now actively working individually and collectively towards claiming them!

I have attended meetings in Geneva twice this year, once to speak at the opening of the 17th session on the Charter of Rights for People with Disabilities (CRPD) representing DAI. The next time as part of the civil delegation when Canada presented on their human rights issues for people with dementia. In their report back to Canada dementia was mentioned, which I believe was the first time that this is ever happened. This has given me further drive to stand up for people’s rights from a human right’s perspective.

We know the people with dementia are stigmatized in many different ways so they hide away to avoid that stigma. If we look back to the 60s people were with dementia were told to go home and that is what they did.

Let’s jump ahead to round the year 2000 when my mother was diagnosed with dementia; she too was advised to go home get your affairs in order. My mother hid her diagnosis for many years but at this time they were still very little they could do for people with dementia. In the end my mother ended up in a nursing home because of her diagnosis she was most times left in a chair and wasn’t included in anything.

But it is still happening today!

I too was given the same advice but because of my intelligence and my nursing background I refused to take it. Kate Swaffer has termed this Prescribed Disengagement®; it happened to her, and it is still happening to people being diagnosed today.

I’m going to stand up and fight this because there’s has to be a better way. When we consider the continuing breach of human rights for people with dementia, there is no other choice. For example, in Canada one of the provinces has decided and is taking it to the supreme justice in the province, to have it made into law that people with dementia cannot make decisions on their own due to their disease. This is wrong, as it contravenes our human rights; people with dementia do not instantly lose capacity to make decisions for themselves at the time of diagnosis. It is a violation of the human rights and the CRPD. So we are fighting this in Canada and will have to wait to see what happens because if they do make it a law then we will be going to court and fighting this as a human rights violation.

In the early stages of dementia we are able to do things, but we need support for the disabilities caused by the symptoms of dementia to find different ways to support us to live with dementia, not only to die from it.

We need supports that currently are not offered. Things are finally starting to change for people with dementia around the world you may ask why this is happening. This is happening because of people like the late Dr Richard Taylor and DAI’s Chair Kate Swaffer and many other persons living with dementia standing up to the social norms and challenging them. I hope by being here today I have been able to instill a little bit of knowledge on you about what people with dementia are going through. If you have any questions I am more than willing to answer them, if we have no time then please come up to me during one of our breaks I am open to talking to anybody about this disease process.

In closing I want to give you an analogy received from Brenda Avadian of The Caregiver’s Voice. She said as one [Phyllis Fehr] who lives with a non-communicable disease –dementia –

We’re doing all we can to raise awareness worldwide and make dementia “communicable” by finding strength in working together and sharing our stories for advocacy.

This struck a chord with me. People are still not made aware of it and I fully believe that the more it is spoken about, and the more we fight for our human rights, the better off people living with dementia will be. Thank you.

DAI’s Chair & CEO Kate Swaffer will be following up this as she has been invited to attend the Global NCD Alliance Forum on 9-11th December in Sharjah UAE, “Stepping up the pace on NCDs; making 2018 count.” where the Advocacy Agenda of People living with NCDs will be launched and where the NCD Alliance will be mobilising NCD civil society community and bringing together approximately 300 people to discuss  I am looking forward to seeing you in Sharjah, UAE.

Announcing a new Chapter in DAI’s Human Rights work

Thank you Professor Peter Mittler CBE

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.

We are all working together in our individual and collective quests for a human rights based approach for people with dementia. Working collaboratively, we are much stronger and far more likely to get results. Indeed, this is one of the keys to moving away from the rhetoric to reality. DAI’s book on human rights published in May last year, give a good overview of why they are important for all [The Human Rights of People Living with Dementia – from Rhetoric to Reality_2nd Edition_July 2016_English].

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 Kingston OBE (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 UN Convention 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.

Finally…

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…

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance Inernational