Tag Archives: ADI2014

Not Acting the Way thats Expected, by Richard Taylor, PhD

Day 5, Dementia Awareness Month 2015

Founding member of Dementia Alliance International, the late Dr  Richard Taylor PhD presented a number of time at the ADI2014 conference in Puerto Rico, and this recording offers us all an especially powerful message.

First published on Sep 8, 2014

Sharing my experience with dementia, by Maggie Weidmark

Maggie Weidmark features this week in our weekly blog series, one of our members  from Canada, who travelled to Puerto Rico to present at the 29th Alzheimer’s Disease International conference in the Living with Dementia session.  It was wonderful to meet her, and have her join forces with Dementia Alliance International. She is eloquent, and very brave in sharing her person story of living with younger onset dementihave it  and agreeing to having it featured here. Thank you Maggie.

Uploaded onto our Youtube channel, here is the recording of Maggie presenting, with her full speech notes, which she has very generously  agreed to share.

Sharing my experience with dementia

Maggie Weidmark, ADI Conference, San Juan, Puerto Rico, May 2014

My experience with dementia started four years ago, in April 2010. I was a Public Health Nursing Manager, supervising a team of about 20 nurses and support staff. I was well-liked and respected, and staff appreciated my open door policy – if you had a problem, I was willing to listen.

Behind the scenes, however, I was struggling. I was making mistakes. I gradually became overwhelmed at work, without knowing why. I was tired and depressed. I was struggling with things that had once come easily. I was forgetting things, though at the time this was less obvious to me than to puzzled co-workers. I was working longer hours than ever before, and yet still couldn’t keep up. In my mind I believed all of this was just the result of job pressures and a heavy workload, made worse by the stress of changing to a major new assignment.

One day everything changed, and my world was turned upside down.

It happened on a Friday afternoon. I was summoned to our head office, where I was called into a meeting with two of my bosses, both of them health professionals, and a rep from HR. I honestly thought “Oh-oh! I’m about to be fired!”

I was wrong. The meeting was about my weak performance, but it didn’t have the outcome I expected. I was told to see a doctor, and put on short term disability leave.

I don’t know who among my colleagues was the first to put two and two together, and put forward the idea that I might have a medical problem. I didn’t see it in myself, and neither did my husband or daughters. I’m sure it took someone with an awareness of the symptoms of dementia to see what was not at all obvious to me.

This is how my journey with dementia began. One day I was a working professional, and the next I was not. I was only 58-years-old. Work was a huge part of my life, something that I was very passionate about. I had not even thought about retirement, or what I would do when my career was over.

It took about six months, and consultations with a number of specialists before there was even a tentative diagnosis. Were my memory problems due to stress? What about my bouts with depression? My husband told the doctors that I was a workaholic, sometimes still at work until 8 or 9 at night, many hours after everyone else had gone home. Was I bi-polar? Or could I have all of these things, and a brain disease too?!

There was no quick diagnosis. The results of a SPECT scan seemed to show some shrinkage in the front of my brain, confirming a tentative diagnosis of frontotemporal dementia. A year ago a researcher at McMaster University in Hamilton, Ontario put me through about 5 hours of memory and cognitive testing, and concluded that I had Alzheimer’s disease. A second SPECT scan, about two years after the first one, appeared to show an improvement in my brain. So I’m not sure what I have, but it looks like all of that Lumosity and Mediterranean food really paid off!

The lack of a clear diagnosis is almost a mixed blessing. On the one hand, it suggests that my symptoms are not advanced enough to put me in this box, or that one. And it’s not like I’m in a race to get to the finish line, is it? On the other hand, it’s difficult not knowing exactly what’s wrong. For a long time, and sometimes even now, I find it hard to believe that I even have dementia.

In the first six months after leaving work I didn’t want anyone to know what I was facing. I didn’t have a farewell party at work, because I could not explain why I had left. I did not tell my friends. I did tell my closest family members, but insisted it had to be kept a secret. I pulled into myself, like a turtle.

My family respected my wishes, but eventually you realize that you cannot go on pretending that nothing is wrong. In an effort to cheer me up my husband Mark took me to see a comedian in a nearby city. He got us front row seats, which was nice. In the theatre lobby we ran into a couple who had both worked with Mark in the past. I found it difficult to make small talk, because I had been stripped of my identity. Who was I? What did I do?   I didn’t have any answers.

It was a big theatre with about 800 seats and a sold-out crowd, and strangely enough we found ourselves sitting right next to the couple from the lobby. I suppose the comedian was funny. He did a good Sean Connery impression. But about half way through the show my mind had wandered, and I began thinking about my problems. Without realizing it, I let out a long sigh. “Did somebody just groan?” the comedian said to the entire theatre – as he looked in my direction with a wounded look on his face. Mark came to my defence by deflecting attention away from me – he smiled and shrugged, and pointed to his left at the other couple.

I learned two things that night. One – it’s hard to keep secrets. And two – never sit in the front row.

I did have lots of practice telling my story to doctors and nurses, and it must have been on one of those visits that I either picked up or was handed a brochure for the Alzheimer Society of Guelph-Wellington. The brochure described the services of the society, which included one-to-one support, and support groups for those in the early stage of dementia, for partners-in-care, and for friends and family.

I called the phone number in the brochure, and a lovely woman named Kit came to my home. We sat at the table in our dining room and talked about my experiences. The brochure had said in big block letters, YOU ARE NOT ALONE. And it was true.

Kit brought with her a letter that was signed by seven people. I’d like to read the letter to you now.

“Hello.”

“We are a group of people living with memory loss. We come together twice a month to talk about what this means in our lives. These meetings are only open to people who are experiencing symptoms caused by diseases such as Alzheimer’s. We invite you to join us.

“Talking about our feelings is helpful. Also, information is available. We learn ways we can make days easier for ourselves and our families.

“Here are some exact quotes from discussions we’ve had about why this group has helped us so much:

  • The group is a source of humour.
  • It is a comfortable place to talk about the memory changes.
  • We can bring out our feelings without embarrassment.
  • It is relaxing.
  • Someone new may feel withdrawn but always ends up laughing and being a part of the group.
  • It is a great release.
  • We share a common predicament and learn from one another.
  • We are grateful that this group exists for us.

The letter went on to say “We hope that you will join us soon. Call our facilitator, Kit Papoff, and she will let you know when and where to meet. Looking forward to seeing you.”

The letter was signed by Gordon, Eric, Beverley, Moe, Wim, Carol and Jennifer, members of a support group nicknamed “The Reminders”. It was for people in the early stages of dementia. People like me.

I joined the group in December of 2010. Our group meets two times per month, every other week, for one and a half hours. The meetings are held in Guelph, which is a city about 100 kilometres west of Toronto.  I live in a small town about 20 minutes from Guelph, but I still have the privilege of having a driver’s license, and so I am able to get myself there and home again.

In the last three years I’ve met dozens of people with different types of dementia, facing a variety of challenges in everyday life. In a sense, my door was now open to a new group of colleagues, peers who were going through the same thing as me.

Sharing our stories through twice monthly meetings has helped me to accept my diagnosis, to gradually gain confidence in myself, to learn, and even be joyful! I made new friends.

I look forward to the support, education, social time and the empowerment that I have gained. We talk about the things that are going on in our lives, the happy moments, and the challenges. Although we are all persons with early onset dementia, we come from different walks of life, are different ages, and are at different places in the journey. Some people have been newly diagnosed, and are still in a state of shock, like I was. Others have been coping with dementia for years. We also benefit greatly from our group facilitator, an employee of the Alzheimer’s Society of Waterloo-Wellington who brings expert knowledge and counselling skills. We talk about research, and discuss recent articles or books about memory loss.

There is some continuity, but no group like this is static. New members are warmly welcomed. Some of our regulars have switched to other programs, but we still see each other at Alzheimer Society social functions. One man, Eric, sadly passed away. Our facilitator, Kit, has retired – I was so sad to see her go! She was wonderful. There is one man, a former geography professor who plays timpani in two orchestras – he’s been attending a dementia support group for 15 years!

My participation in “The Reminders” has transformed my entire way of thinking about dementia. I went from being sad, depressed, angry and embarrassed, and became much more open and optimistic. Partly this is because I realized that an important part of living with dementia, at least for me, is to increase awareness about the disease. When I think back to that fateful day when I lost my job, I am so thankful for the understanding and compassion with which my employer handled the situation – somehow, they got it, before I did.

My participation in the Alzheimer’s Society’s support group changed my attitude, and that got me out into the community. Mark and I joined our local lawn bowling club, which is a short walk from our home. In the winter the activity shifts indoors, and we play carpet bowling at a community centre. My mother-in-law and a friend I met through lawn bowling are my pals, and we regularly take in activities at our community senior’s centre, like walking and day-trips excursions.

As I gained confidence I began to share my diagnosis with others. Many of my new friends are older than me by 10 or 20 years, but that doesn’t matter – they are active, energetic, and like to have fun. I feel that I am accepted.

A year-and-a-half ago my husband Mark and I were invited to participate in a research group developing a curriculum designed for persons with early stage dementia. We belong to what they call a “hub”, one of three across Canada that are run by the participating universities. The purpose is to give persons with dementia, and partners in care, input into what topics and content are to be covered by the project. The hub, which meets monthly, has given me another opportunity to connect with people, learn about dementia, and make a contribution that will hopefully help others. My attendance at this conference was made possible by the Murray Alzheimer Research and Education Program at the University of Waterloo, who invited me here – thank you so much Lisa.

Before I finish, let me return briefly to the subject of support groups. Last fall the meeting place of “The Reminders” was relocated to a new space that added another 10 minutes to my trip. Mindful of that fact that I will not have my driver’s license indefinitely, and also of the hazards of driving in Canadian winters, my husband Mark approached the Alzheimer’s Society and asked if a support group for persons with early onset dementia could be started in our town. They said yes! Our first meeting was two weeks ago. Aside from our facilitator, Lindsay, there was just myself and one other person – a man who was newly diagnosed. I am hoping the group will grow in numbers, as more people become aware of its existence.

For now, I am hoping to keep up with both support groups. The new one will only meet once a month until it gets established. I also want to hang in with “The Reminders” once a month.

For anyone thinking about support groups for persons with early onset dementia, I say take the plunge! Attend the closest one you can get to, or ask your local Alzheimer’s organization to consider bringing services to your community.

Thank you for listening to my story.

Copyright Maggie Weidmark

Editor: Kate Swaffer

 

Sue Stephen talks about living with PCA

Our fourth blog features one of our founding members, Sue Stephen who is also a member of the Board of Dementia Alliance International. Sue attended the recent ADI conference in Puerto Rico, and her presentation was part of a concurrent session called ‘Living with dementia’ where a number of us presented, and then answered questions as a panel. This was one session that those in the audience learned a lot from, and Sue’s presentation, brilliantly done without any notes, was informative and moving. Below is the video recording of her session, now on our YouTube Channel.

Copyright: Dementia Alliance International
Editor: Kate Swaffer

Jan Pitts introduces DAI at the recent ADI2014 conference

Janet Pitts, co-founder and co-chair of Dementia Alliance International attended the Alzheimer’s Disease International conference recently held in San Juan, Puerto Rico (#ADI2014). In the Living with Dementia session, Jan presented this exciting new group, Dementia Alliance International, to an international audience.  Congratulations Jan!

Below is the video recording taken on the day, just uploaded onto our new YouTube channel. Below you’ll also find the script of her presentation.

https://www.youtube.com/watch?v=Dv7X1he6z5c&feature=youtu.be

Click on the link to view the slides of Janet Pitts Presentation

Jan’s Script:

“I spent my youth involved in academics and sports. This gave me great experience in indurance, persistance, and patience. I learned to work well with others and that decisions made by the group were much stronger than any individual could achieve. I also learned that dedication and hardwork were the cornerstones of self-promotion.

After college, I became a social worker for the State of Oklahoma. I held many positions; working with single parents, the aged, blind and disabled, long term care, and then finally the last 14 years I spent working for the State Advocate General.

Working for the Advocate General afforded me the oppurtunity to work as an advocate for people with intellectual and developmental disabilites, a true passion and pleasure. I also worked as an investigator of abuse, neglect, maltreatment, financial exploitation, sexual abuse and even deaths of both people with intellectual and developmental disabilities and children placed outside of their home. The last six years I was a Program Supervisor for our Intake unit, Advocates, and Investigators.

Suddenly in 2003 I was no longer mentally capable of performing my job duties, and knowing it was the best thing for the department, I retired on disability. One year later I was diagnosed with Frontal Temporal Dementia or FTD. A disease of the frontal and temperol regions of the brain. The disease is terminal and there is no treatment for slowing the progression at this time. The average life expectancy is from two to ten years, according to most sources.

So I was retired years earlier than I ever imagined. I spent nine years sitting at home ready to die, after all the neurologist had given me a life expectancy of one to two years, and I had followed his suggestion of getting all my affairs in order. Withdrawal, isolation, apathy and agoraphobia had set in, whether this was due to my diagnosis or my loss of interest in life has become obvious to me.

Then one day I got on my computer and accidentally found a support group for people with FTD. I joined and then was referred to a second group for anyone with dementia. Through these groups I began to think again and to ask questions, I also listened to the questions and responses of others, noting mentally the way people were having to learn about their diseases, as well as how they were making life changes to accommodate the challenges.I learned there were a great many in my situation, who were having to rely on each other and social media for answers to their numerous questions.

I still dealt with a great deal of isolation and apathy. One day there was a post asking if anyone was interested in participating in a production, with the actors being people with dementia. The organization was To Whom I May Concern, which is a series of plays to educate others on what life with dementia is like. I met and worked with some peers who will always remain very close to my heart. I was also introduced to Laura Bowley and Maureen Matthews who I have been truly blessed to have in my life.

This led to my participation in a new Memory Cafe which was being started by Laura. I take great pleasure in having named it Cafe Le Braine, we meet on-line monthly. I also attend the monthly Meeting of the Minds webinars, of interest to those living with dementia, hosted by Laura and Richard Taylor.

Somewhere along the way, through all of this involvement, I lost a great deal of the apathy I had been dealing with, it also helped me to start working on the Agoraphobia.

I have been fortunate enough to find a new passion and the means to be a self-advocate and advocate for people living with dementia, a return to the dream I thought dementia had robbed me of. I had witnessed first hand, and was well aware of, the long hard road people with intellectual and developmental disabilities had walked to find their place in the community, to have person-centered services provided and to tear down the walls of the institutions they had been sentenced to life in. We don’t need to repeat that path, rather we need to learn from the mistakes made on their behalf and move forward. Communication and knowledge is the key.

I am proud to say I am a co-founder and co-chairman of the Board for a new organization called Dementia Alliance International. I am very proud of the work we are doing and the progress being made since our inception in January, 2014.

I believe strongly in our vision, “a world where a person with dementia continues to be fully valued”. I am a living example of what happens when you take away the value from one’s life. I am also an example of the wonderful things that can happen when you take that value back. Dementia Alliance International is the vehicle to a better quality of life for each of it’s members who wish to live in a world where they are participants, not spectators.

I want to be sure everyone is clear on DAI’s mission which is: To build a global community of people with dementia collaborating inclusively to: Provide support to live well with dementia; To model to others; Advocate for people with dementia; and Reduce stigma and discrimination and ensure our human rights.

Let me explain how DAI plans to remain sustainable over the years. It is through utilizing our human resources and identifying financial means. There is currently a seven member board of directors, which will increase to twelve in January 2015. We have a group called the Circle of Friends, to be comprised of thirty individuals with dementia, who want to work on special projects and on-going administrative tasks while being mentored by Board members, if their interests lie in a future roll on the Board. We have also identified the need for an Advisory Council, these will be five like-minded individuals who do not have dementia, but have an interest in promoting the autonomy of the members of the organization.

Already available, or soon to be, is our Facebook page, Twitter account, and our website that contains information through a resource room, on-line support groups, weekly blog, media watch articles, informational and relevant short videos on issues relevant to educating members, our quarterly newsletter, as well as connections to You Tube videos. There is an organizational connection to the monthly Meetings of the Mind webinars, To Whom I May Concern and to Cafe Le Brain.

We have determined that it is in the best interest of present and future members that membership remain free of charge. That being said, it is vital to our future that we identify stake holders to assist with start-up money who, like us, believe the need for this organization is essential and long over due. Support is also needed to become a non-profit organization.

 I would like to close with why DAI is different? We offer people a unique voice and viewpoint, of, by, and for people with dementia; Membership is 100% inclusive to people with dementia; We are committed to change; and we are committed to living well.”

Thank you Janet.

Attending ADI2014

Richard Taylor, Susan Stephens, Janet Pitts, Sid Yudowitch, Kate Swaffer & John Sandblom
Richard Taylor, Susan Stephens, Janet Pitts, Sid Yudowitch, Kate Swaffer & John Sandblom

This is to be the first of our weekly blog series, highlighting our most recent achievement. After setting up this new advocacy and support group, of, by and for people with dementia, our modest but successful fundraising efforts enabled five Board a members and co-founders to attend ADI2014, the 29th Alzheimer’s Disease International  conference in San Juan, Puerto Rico.

Alzheimer’s Disease International (ADI) is the international federation of 79 national Alzheimer associations around the world. It was founded in 1984 to help establish and strengthen Alzheimer associations throughout the world, through the exchange of information, skills and models of best practice.  ADI wants to improve the quality of life for people with dementia and their families and to raise global awareness about Alzheimer’s disease and all other causes of dementia.

Visiting Puerto Rico was a wonderful experience, with relaxed locals, excellent food and if only we’d had enought time, some wonderful beaches, rain forests and I am sure, lots of dancing! We were lucky as the weather was sunny, and the predicted rain waited for us to depart. Virtually everyone spoke English, definitely making it easy for us, and the final nights food was, according to the restaurant staff, an example of what the locals eat a home. It was delicious!

The theme for this years conference was Dementia: Working together for a global solution. Over the course of three days, members of our group presented a number of times, and I was also involved in the opening and closing ceremonies. Below is a list of the presentations made by members, and as we finalise the editing,  video recordings of these presentations will be uploaded to the website.

Richard Taylor: Living Beyond the Stigmas Associated with the Various Forms of Dementia
Kate Swaffer: Non-Pharmacological Interventions: One Patient’s Journey
Maggie Weidmark: Challenges To Early Onset Dementia
Sue Stephen: Living with PCA
Janet Pitts: Introducing Dementia Alliance International
Kate Swaffer: Introducing the Alzheimer’s Australia Dementia Advisory Group: Empowering People with Dementia
Selva Marasco: Sanación Y Demencia / Healing And Dementia
Laura Bowley, John Sandblom & Richard Taylor: Internet Support Groups for People with Dementia
Richard Taylor: Alzheimer’s From the Inside Out: Living with dementia for 10 years – what I’ve learned
Kate Swaffer: Prescribed Disengagement, Models of Careand & Quality of Life
Richard Taylor: Responding To The Charge “You Don’t Have Dementia, You Are Not Acting The Way I Think People With Dementia Should Act”

This conference gave Dementia Alliance International its first opportunity to announce to the dementia community, in a more tangible way than our global, online presence, just who we are and what we wish to achieve for those we represent, namely, people living with dementia. It also allowed us to meet each other, forging lifelong friendships, and the chance to learn more about each other’s professional acuity and backgrounds.

No longer will we accept anything about us without us; no longer will we accept the role of victim of sufferer; no longer will we be seen as fading away; no longer will we accept being called demented. Our family carers supported us, we supported each other, and we learned we can and must stand up and speak out, and more importantly, we empowered many other people with dementia to do the same.

People with dementia, until the late stage, do not need day care or respite, nor do they do not need to accept prescribed disengagement, they need to continue to live meaningful and engaged lives, in the same way as others. It is the power of doing truly meaningful and engaging activities, with like-minded people that offers us real support, not just sitting around in a ‘support group’ discussing our troubles and ruminating over the negative parts of living with dementia or doing activites others choose for us.

We now have a lot of work to do, to embed the groundbreaking work we have just seen culminating in such a public presence, and I believe we will look back at this time as one that will have made history in changing the lives of people with dementia, by people with dementia, and which will be seen as a moment in time from which there was no turning back.

Kate Swaffer, Editor DAI