Category Archives: Copyright © 2018

Kate Swaffer wins 2018 Richard Taylor Advocate Award

RICHARD TAYLOR MEMORIAL ADVOCATE AWARD GOES TO KATE SWAFFER IN 2018

On World Alzheimer’s Day, we usually announce the winner of the Richard Taylor Memorial Advocates Award.

However this year, we surprised the winner!!!

“We have never been prouder than to award DAI’s coveted and prestigious 2018 Richard Taylor Memorial Advocates Award, to our very own and most deserving, Kate Swaffer. The award was presented to Kate at the DAI Workshop during the 33rdADI Conference in Chicago on July 28th. It was done, without her knowledge, as in past years, she has not allowed the nominations for her to be considered, allowing other DAI members to be recognised for their work, so we decided to make a decision without her knowledge, and surprise her at the conference!

Thank You and CONGRATULATIONS Kate. You are the most steadfast, determined, generous, selfless, loving and truly inspirational leader, we have ever known. We also wish to extend a very special thank you to your husband Peter and her son’s Charles & Matthew for sharing you with us and for supporting you in every way so that you could miraculously keep paddling through all the adversity we face on our very important and lifesaving mission.

Kate has always refused this award when nominated for it over years past, always nominating someone else to receive it out of concern for “appearing self-serving”. We all knew she would do it again so, we snuck around her, taking it into our own hands. Keeping a secret from Kate as you can imagine, was no easy task but, thanks to our “Big Tuna” (Peter Watt aka BUB) and, a “top-secret board meeting”, we pulled it off without a hitch and with no less than a standing ovation. I dare say, there were many tears of joy in the room that day including, from our dear Kate.

Having been diagnosed at the young age of 49, Kate quickly began her nearly 11-year journey of advocacy that is arguably second to none in terms of achievements. Kate’s unyielding resolve, attention to detail and, tireless work ethic allows her to get things done and, sets her far apart from her peers in the spectrum of Association CEO’s and, other Dementia Advocates. Additionally, Kate’s intelligence, knowledge, grace, force when necessary and calm with which she presents, has made her one of the most sought-after speakers in our world of dementia advocacy, as well as in academic circles.

Just four and a half years ago, Kate Swaffer, Richard Taylor, John Sandblom and five others started Dementia Alliance International as a base from which to advocate for people living with Dementia. One might say “they didn’t have a pot to pee in or, a window to throw it out of” but that did not hinder their efforts in the slightest.

Their goals were and still are to eradicate stigma, improve education at every level of the care sector, spread public knowledge about dementia, have a voice at Conferences worldwide and, become a part of high level meetings both nationally and internationally. Another very important goal was to create positive change to the lived experience of its members who are living with Dementia, through peer to peer support. The results are nothing short of phenomenal considering the many obstacles we face daily, none the least of which are, we all have dementia, regularly loosing members to death or care homes, in addition to, having inadequate outside financial support.

Clearly, Kate’s brilliant leadership has literally guided, provided and afforded us the ability to navigate all the above, seemingly insurmountable obstacles with unbelievable success. To demonstrate this point, here are some of Kate’s ongoing achievements and contributions that are instrumental in DAI getting as far as it is in such a short period of time:

Kate is involved globally in human rights activism, and empowering others with dementia to live positively.  Her publication in The Australian Journal of Dementia Care (2018),“Human rights, disability and dementia”, responds to the WHO Global Plan of Action on the Public Health Response to Dementia 2017-2025.

Since speaking at the WHO First Ministerial Conference on Dementia in 2015, Kate has been key to the global advocacy of people living with dementia, and ensuring human rights are embedded into national dementia strategies. Governments invite her to work with them, including Presidents and other officials. She works with the WHO and UN, always representing DAI and the estimated 50 million peoPle living with dementia globally, and also works hard in the Low and Middle-Income Countries to support the ADI members Alzheimer’s Associations and researchers to improve dementia care. Kate is a powerful activist ensuring global change becomes a reality for everyone facing dementia, and their families.”

“Kate’s voluntary work, and incredible drive, purpose and passion to help create positive change for the 50 million people around the world currently living with dementia and their families globally, has been truly noteworthy.” (Dr. M. Funk, Department of Mental Health and Substance Abuse, WHO)

Kate, Richard Taylor is most assuredly smiling down on you and, is incredibly proud of you.

Although Kate received this award at the ADI Conference in Chicago late July, this has been published today because it is World Alzheimer’s Day, the day the DAI announcement is usually made and celebrated.

Authors: The DAI Board and various DAI members (minus Kate!!)
Image source: Peter Watt 2018

Read what 3 of our members said about Kate:

One of the nominations for Kate in 2016, which was the inaugural year of this award, said:

“Kate has been a tireless advocate for people who live with dementia that was first truly inspired after meeting Richard Taylor at an ADI conference. She has authored two books since diagnosis, attained a Masters in Dementia Care, and is a PhD Candidate in the same field. Kate is a founding member of DAI. Kate embodies the meaning of advocacy so I know of no one more worthy of the first Richard Taylor Annual Memorial Award.” (JS)

When I joined DAI, I had been broken by the inhumane way in which my diagnosis was delivered; I was a train wreck. It had taken me one and a half years to find DAI and, within 3 days, I was talking to Kate and others on my very first Zoom chat. It was Kate who made me laugh for the first time in 1.5 years, which, quite literally was the beginning of my rehabilitation and my ability to live well with dementia.  I can still remember putting Kate on a pedestal in my mind, in the beginning. I saw a true professional perhaps, beyond approach.  I quickly realized that she is one of the most approachable, down to earth, loving, caring individuals I have ever had the privilege to know and now, serve beside. I have seen firsthand, the high standards from which she leads and, I say with complete confidence; Kate Swaffer is unquestionably the highest spirited, motivational, effective, professional and ethical leader I have ever seen. (JW)

After hearing Kate speak for the first time at a convention in Chicago, a man in his late 20s in a dark suit asked if he could speak to me knowing that I knew and worked with Kate. He was clearly moved by Kate’s message, but more shaken than inspired at first. He started, “Wow – she really hates doctors!” I assumed he was one as well, so I added with narrowed eyes and a sly smile, “Yes, especially the younger ones. May I introduce you?” His eyes got big and from the surprised look that came over his face, “OH! No, I’M not a doctor!” so I asked his interest in the matter. He named the middle-eastern country he was from and said his gran had had some form of dementia for some time now, but it was handled very differently in his culture. He said that she was surrounded and sheltered by so many layers of immediate family members that all here daily needs are met and she is happy. I told him I have 9 cousins, most of whom I haven’t laid eyes on regularly since the Vietnam era. He laughed and said he had over 200 that he knew of.

I cautioned him not to quickly judge how our Kate Swaffer, or how the myriad of the world’s cultures from which dementia emerges addresses major cognitive disorders without taking off one’s own myopic spectacles of limited cultural understanding. No coherent progress in theoretical and experimental science into understanding dementia can legitimately proceed without the primary data sources necessary to inform the questions that will generate research that will most efficiently lead us to a world that manages dementia as it does other diseases: benefits and risks. Our primary data sources are the voices and linguistic clues into a person’s changing cognition from those people in early stages of dementia.

Kate Swaffer with her own powerful, tireless and simple message of “Let US speak for ourselves” has brought a 21st Century “salon” of penetrating inquiry into dementia to our community centers, doctor’s offices and conference tables – and online to the homes of those with dementia. Kate and other DAI members have helped us to re-discover ourselves, even discover our new voices, advocating to be a central part of a dialog of inclusiveness in the process of research and true change. (David L. Paulson, Ph.D., DAI member).

Congratulations Kate Swaffer

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Nina. Become a DAI Sponsor or Associate today.

Hello, my name is Nina Baláčková

Nina (right) and Eva at the Memory Walk adter the 2013 ADI conference in Taiwan. Image source: Kate Swaffer

On Day 20 of the #DAI #WAM2017 #Hello my name is blog series, we share long time DAI member and friend from the Czech Republic, Nina Baláčková’s story. Through their personal stories, our members want to raise awareness of dementia, and to highlight that each persons lived exerience of dementia is highly individual.

By speaking out, people with dementia are individually and collectively increasing the worlds understanding of living with dementia, and also hope to break down the stigma, myths and discrimination still being experienced. Thank you Nina for allowing us to share your story here.

Raising awareness and finding humour

Hello, my name is Nina Baláčková. I am from the Czech Republic. I am proud to be a member of DAI for several years.

I was diagnosed with Alzheimer’s (Young onset) in 2007 at the age of 49. It took me several months to accept this disease. When I realized that my life can continue, though in another  more difficult form, I decided to enjoy every day I will be here, on the earth, with my family.

We did not know about Alzheimer’s during my mom’s lifetime. Only after her death did the doctor tell me that she had the last stage of Alzheimer’s. It was one of the reasons why I decided to speak up about dementia.

I wish to raise awareness of dementia for many people. So, in 2009 I started to organize discussions named My life with Mr. Alzheimer.

Then I became a member of European Working Group of People with Dementia (EWGPWD), and It has been my pleasure to work with this group of dedicated advocates. I very recently stepped down as a member of the EWGPWD. I am also grateful I was able to speak on the ADI conference in Taipei. 

Thanks to my family, to my strong will and strong faith, support of my church and many friends I have been fighting Mr. Alzheimer persistently for 11 years.

Even though after my husband had been diagnosed with Alzheimer’s last year, it has been very difficult, we still try to enjoy our lives.

The Potato Soup 
Given my lack of taste, smell, poor estimate of the time, distance and quantity, cooking is becoming quite an adventurous matter for me. And I did not even mention the forgetfulness. One autumn day a few years ago I decided to cook potato soup. After the vegetables was ready, peeled, scraped and cut up, I prepared a nice dark roux. Mushrooms, thanks to my daughter, I also had enough. I guessed that I had something missing. But hat was it? Garlic? Marjoram?

That day my friend Eva came to visit us. The soup seemed to look pretty good and was nice and thick. As my friend appeared, I immediately gave her a taste to find out whether it is necessary to add more garlic, salt or marjoram.
My husband, my friend Eva and I, we had a dinner together.

When my husband almost finished, he innocently remarked that it just did not have any potatoes. I thought for a long time and then burst out laughing: “Well, you could not find it, because I forgot to put potatoes in it” . For a long time we were laughing with my friend: potato soup without potatoes ….

Nina Baláčková © 2018 

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Nina. Become a DAI Sponsor or Associate today.

Hello, my name is Kris McElroy

On Day 19 of DAI’s daily #WAM2018 blog series, we are proud to share Kris McElroy’s story with you. Kris is a very active member of DAI, and his incredible smile and joy, inspite of the challenges he faces, brings a smile to all of us. Kris reminds us to remember what we still  have, rather than only to focus on those things we are losing. Thank you Kris, we all continue to be inspired by you.

Kris writes often on his Facebook page, and yesterday shared how he feels about DAI:

“… the voices and smiles from Dementia Alliance International groups, meetings, and chats were in my head like the little engine that could mixed with woody the woodpecker mixed with my favorite song on repeat as I drive everyone else nuts but yet I am perfectly calm, content, and even though there are many challenges and so much that is hard to put words or expression to I am reminded I can continue to move forward as the messages I gain of living well, keep stress low, laugh, I am not alone in what I am experiencing, and focus on not on what I can’t do but what I can do, I can live well.”

It’s not just an older person disease

Image source: Kris McElroy

Hello my name is Kris McElroy. I am a 33 year old native of Maryland, United States living in poverty with multiple disabilities including a progressive neuromuscular disorder, autoimmune disorder, and dementia. I hold a Bachelor of Science in Psychology and a Master of Science in Multidisciplinary Human Services.

Professionally, I have held positions in the education, advocacy, nonprofit, and human services fields. I’m also the author of Perspectives: Discovery through Difference, as well as an artist and writer who has been featured in a variety of sources over the past decade.

I was diagnosed with young onset dementia while finishing up the second year of my doctoral coursework.

The exact dementia diagnosis given on June 21, 2017 was dementia due to other medical condition with behavior disturbance. Similar to my other medical disabilities, the exact etiology is still unknown, while the complexity and overlap of his medical conditions is vast.

While I’ve has been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia brought its own unique set of challenges, barriers, and stereotypes.

Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.

More than a year later since my dementia diagnosis, I  have found support through Dementia Alliance International and I continue to live indepently with the help and support of my sister, a few close friends, and  multiple assistive devices. I’m also an avid volunteer engaging in his community in advocacy, social change and justice work, and finding a way to live out his life purpose who has good days and bad days determined to live life well and each moment to the fullest.

Kris McElroy © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Kris. Become a DAI Sponsor or Associate today.

Hello, we are the Selwyn Singers

On Day 17 of the #DAI #Hello blog series for #WAM2018, we introduce you to a group of people who live in a residential aged care facility in New Zealand, called the Selwyn Singers. Instead of highlighting one member, we wanted to highlight this group, and their performance which was recorded especially for DAI’s very first World Rocks Against Dementia #WRAD2018 event held in March.

This wonderful group of Super Stars (the singers) are Mary Bubs Johnson, Erick Deverick, Lois Jackson, Valerie Harris, Barbara Manterfield, Dorothy Mayo, Lillian Neilson, Jill Renner, Julie Mellsop and Airlie Seay. On the day of the recording, they were supported by staff, including the Diversional Therapist Annaleise Van Ham, the Activities Coordinator Alice Halavaka and the Group Diversional Therapist Orquidea Tamayo Mortera. We thank them all for being involved and sharing their lives through their beautiful singing.

What a beautiful world, by the Selwyn Singers

The Selwyn Foundation Singers

The group is made of residents living in care homes such as; our memory support home, our hospital care home and our residential care homes. They practiced for a good 3 months to get the song right J knowing that it was going to be showed to a very special group of people across the planet.

It was very meaningful as Selwyn Village is the home for almost 700 older adults and this special group needed support to meet in the village community center, as they were coming from all different homes on the day we filmed it.

The Selwyn Foundation homes (where we work and the residents live) has gained lots of awards and recognition in New Zealand for the way we support our elders to keep engage in life through meaningful diversional therapy programs that are person centred. But we are also working in strategies to help to make new Zealand ageing friendly and dementia friendly communities everywhere. Our residents do anything and we support them to fulfil their dreams and aspirations

Hello, my name is George Chong K.L.

On Day 16 of the #DAI #Hello my name is series for #WAM2018, we are featuring a short story and  video about one of our members in Singapore. The Alzheimer’s Disease Association Singapore has been working hard towards empowering and developing people with dementia to become self advocates, and also to set up their own Dementia Working Group next year. DAI is delighted to support them, and to be able to share part of George’s story with you today…

There is no cure

Hello, my name-George Chong K.L. At the age of 46, I went through my first investigation for dementia in April 2016, and was diagnosed with Brain Atrophy through MRI, and advised it was Mild Cognitive Impairment. In January 2017 I sought a second opinion, and in April 2017 had further investigations including a Pet Scan and Lumber Puncture.

The diagnosis was Younger Onset Alzheimer’s Disease. Like many, I was not thrilled with the diagnosis, so I decided to get a third opinion which ended in the same conclusions. I was prescribed with Echelon Patches in September 2018. I learned about DAI though meeting Kate Swaffer, when she came to Singapore in 2017 as a guest of the Alzheimer’s Disease Association here, and since then am probably considered Singapore’s first self advocate! 

As there is no cure, and no disease modifying drugs, I use a number of holistic remedies which include the following:

  • Ketogenic Diet
  • Meditation 
  • Acupuncture
  • Yoga
  • Qigong
  • Coloring in Puzzle
  • Playing frisbee 
  • Light walking or running

The disabilities I experience caused by my dementia include losing the ability to do mathematical calculations, understand instructions and logic, my verbal expression, memory loss, and sometimes frustration and even anger. Living with changing abilities and losing what used to be automatic and easy functioning is very difficult to get used to, and therefore easy to feel upset about.  However, my wife Lyn and I continue to face dementia together, as best we can.

The following short film was made this year to raise awareness of dementa in Singapore, and about my experiences [apologies we have not been able to embed it, so please follow the link].

Talking Point 2018 – EP7 Thu 31 May 2018 – Am I At Risk Of Dementia?

Help support people like George. Become a DAI Sponsor or Associate today.

Hello my name is Carole Mulliken

Carole Mulliken

On Day 15 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature long time pioneer advocate Carole Mulliken from the USA.

Carole is one of the founders of the Dementia and Advocacy Support Network International (DASNI) and is also a board member of Dementia Alliance International (DAI). She co hosts one of DAI’s Peer to Peer Support Groups on Friday afternoons.

We are honored Carol shares her extensive wisdom and experience with us; she is a shining example of living positively with dementia, for well over 20 years.

HERE FOR A REASON

Hello my name is Carole, and it seems, I am still here for a reason.

Although I was not aware of it, the surgery had been long and difficult. I learned later that it had been a quintuple bypass surgery. I was told the heart attack continued stubbornly for so many hours, they weren’t certain they could perform the operation I needed to survive. I’m glad I missed all the drama.

Later, in the telemetry unit, a vivid red, heart-shaped pillow with a picture of a heart and all its supporting vessels was presented to me, as if to congratulate me for something. I remember thinking the congratulations belonged to the surgeon.

My husband had died a few short months earlier, and to be honest, I wasn’t all that sure I wanted to stick around myself. But all these hospital people had gone to such great lengths to assure that I could stay alive, It would seem ungrateful and rude to tell them that.

Some of the nurses knew what a challenge my surgery had been. Their eyes would grow wide and they’d solemnly shake their heads as they told me,

“You are here for a reason,you know. You are here for a reason.”

I waited for the them to reveal the reason. I had already been disabled for ten years and now would be living completely alone, following major heart surgery. One of the cardiologists had told my family I would never get out of a hospital bed without an assist. I couldn’t imagine what reason I might have for continuing to exist. I nearly asked one nurse what the reason was, but she had patted my hand and scurried off to her next task. I hugged my puffy heart pillow and slid to sleep.

Taking my heart pillow with me, from the hospital, to the skilled nursing facility, back to the hospital and then to assisted living, I spent six months under others’ supervision. I couldn’t walk anywhere without a physical therapist hanging on me with a gait belt. Independence and autonomy were all I struggled for. After six months, when the physical therapist finally declared me an “Independent Community Ambulator,” I felt better than when I had gotten my driver’s license at 16. Liberty at last, to ambulate anywhere in the community!

Then I realized I needed to know the reason or purpose for which I would ambulate freely.

My Mission

Twenty years ago, I had written out my mission in life, my purpose for being, in a journal. I unearthed it to see if it might help me.

“I believe my mission in life is to discover, continually develop, and use my unique, God-given gifts to help those in my circle of influence to learn and grow in knowledge, skill, and character. I hope though love, clear communication, and faith in others, to assist them in discovering and developing their own unique talents and abilities and find the personal missions in their own lives.

I believe people are essentially good, that they have an inherent drive to grow in positive ways toward their own uniqueness as God intended; that human diversity is the medium in which adaptation and endurance flourish; that life is growth and change – a process with both polarities and cycles, and that life is fundamentally good.

I believe that paths to one’s personal mission are many, that knowledge of it is equally in the subconscious as in the conscious. Quietude, reflection, reverie, and prayer are all means of discovering it. I continually learn how to better reach those states and help others to do so as well.

My personal gifts of intelligence, expressiveness, creativity, intuition, and a capacity for reflection manifest best in conversation and writing. I strive to provide for others the opportunity to reflect and make choices about their lives in a considered way – in contrast to the hectic and driven ways in which we now live. I strive to be the kind of person in whose presence others the world as full of possibilities and themselves as valued, creative, and unlimited in potential.

I believe that quality education increases the breadth of choices one has and is inherently worthwhile. I strive to be increasingly more a product of my choices rather than my conditions and enable others to do the same.

I will develop an attitude of gratitude, practice a belief in abundance, and approach conflicts with a win/win attitude, accompanying negotiation skills, and choosing only love.”

Back then it seemed to fit me. For many years, I loved educating teenagers, so they could begin their adult lives. When I was disabled and no longer able to teach in a public-school classroom, my purpose became helping recovering addicts reestablish their lives. I helped people newly diagnosed with dementia at an online message board. That was only a different type of student and a different platform. I loved doing that for twelve years. When I was offered a chance to teach English again, this time online for a community college, my original context was restored, and I felt like my old self. I worked from home and didn’t even need to ambulate. But then the community college system decided they would no longer hire adjuncts from out of the state, and 250 of us lost our jobs with the stroke of a policy pen. I had lost a context in which to pursue my life purpose. I was ambulatory, but I had nowhere to go.

Worse, my belief in abundance was challenged by considerable loss of intellect and creativity following a series of mini-strokes. Holes appeared in my brain where previously abundant brains cells had been. Brain scans proved it. Oddly enough, I still had the drive to create new things, but had no ability to accomplish them. Furthermore, I still “felt” I was brilliant but knew I was profoundly disabled in certain areas. An analogy I used was that if I were talking about running rather than thinking, I had one leg as long as Wilt Chamberlain’s and the other cut off mid-thigh. As a runner, I couldn’t even get myself to the track. It seemed my brain couldn’t make it to workouts either.

Thinking about Thinking

What I was doing just now is called “meta-cognition” or thinking about one’s thinking. If that sounds to you like a weird kind of navel gazing, that’s probably because you have a capable adult brain. Children, and particularly children with learning disabilities, are taught meta-cognition to help them become conscious of their thinking and more aware of their strengths and of strategies useful to their own learning.

People with dementia have newly acquired learning disabilities. When taught to think differently, they can learn to value themselves once again. It’s a new kind of special education for adults.

Discovering Dementia Alliance International

When I discovered the Dementia Alliance International, I found people with dementia who understood that loving, respecting, and treating others with dementia with kindness heals and empowers them.

With DAI, I have a renewed life’s purpose – a reason why I can still be here. I have survived a heart attack and dementia to help others learn how to think differently while having dementia.

It is a discipline. When they achieve it, they will have earned not a puffy, red heart, but a purple one!

Carole Mulliken © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Carole. Become a DAI Sponsor or Associate today.

 

Hello, my name is Phyllis Fehr

On Day 14 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI Board member Phyllis Fehr from Canada. This series is about raising awareness of the many lived experiences of dementia, and highlighting the challenges, as well as the reality that so many people continue to live positive and very productive lives even when diangosed with dementia. Thank you Phyllis for sharing your personal story, and all that you are doing for DAI and with your colleagues in Canada.

I AM STILL ME

Hello. 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. It left a disabling affect on my being.

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.

When I joined Dementia Alliance International, I became stronger. This is due to the support we have for each other, online support groups and the educational events they offer. Just being able to see others with the same disease process, doing well, gives me hope and makes me want to change things in the world to help all people who are living with dementia. On 30-31 October 2017, I was pleased to represent DAI at the NCD Alliance workshop: “Our Views Our Voices” in Geneva.

When Canada reported on the CRPD, I also attended the United Nations as part of their civil delegation. I work within Canada along with the government relations’ officer from the Alzheimer’s society to push forward human rights for people living with dementia in Canada.

The Alzheimer’s society of Canada has work very hard with their Advisory board of people living with dementia to put together a Canadian Charter of Rights for people living with dementia. I was able to have a look and give feedback to this group.

I would encourage you to have a look and hear the stories of some of the people who were involved.

You can download the Charter of Rights here…

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.

Phyllis Fehr © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Dennis Frost

On Day 13 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.

Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.

Dementi Alliance International &  Dennis Frost © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Jeff Borghoff

On Day 12 of the #DAI #WAM2018 #Hello my name is blog series, we feature new DAI member Jeff Borghoff from the US. This series is not only about raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia. Thank you Jeff for allowing us to share your story; everyone at DAI, and the global dementia communtiy is helped and educated through you inviting us into you and your family’s world.

Dementia does not define me

Image source: Jeff Berghoff

Hello, my name if Jeff Borghoff, and with my wife Kim, we reside in Forked River, New Jersey with our three children. I was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 51. During my career, I was a software architect and developer responsible for the design, implementation and project management of technical solutions to help companies solve document-intensive business challenges.

Several years prior to the diagnosis, I experienced changes in my ability to recall information. Although my spouse, Kim was noticing these difficulties at home, the issues were predominant in my professional life where I experienced increasing difficulty with problem solving, managing tasks and providing appropriate supervision to his team.  Therefore, I approached my management team and asked for an alternate position with less responsibility. However, even in this new role, I still found it difficult to manage my duties.

Shortly thereafter, I experienced a serious stomach virus which led to a brief hospitalization. A series of physical neurological symptoms, including facial twitches soon followed which resulted in multiple visits to specialists, and I was still experiencing changes in my memory, but also began to notice differences in my balance and speech. After six months of testing, which included CT, scans, MRIs, spinal taps and neuropsychological evaluations, I was diagnosed with younger-onset Alzheimer’s disease. My father is also living with the disease.

Kim was the first person to receive the news of my diagnosis. She immediately called me and we met to discuss the diagnosis at a nearby park. Although I had been anticipating a serious diagnosis and researching Alzheimer’s disease extensively, I was still stunned and saddened by the news. Together, we went back to meet with the neurologist to discuss next steps, including planning for the future.

Together, we decided to share the diagnosis immediately with our three children. Their reactions ranged from devastation to anger and sorrow. After sharing the diagnosis with others, we have found most to be sympathetic, but often surprised that someone of my age could be diagnosed with younger-onset Alzheimer’s disease.

We began planning for the future by meeting with an attorney and making legal and financial plans, including powers of attorney and applying for Social Security Disability Insurance (SSDI). We also scaled back on our spending and invited my parents to live in a converted two-car garage in-law suite. My parents are also helping to pay off the home mortgage as they prepare for their future cost of living.

After finding the Alzheimer’s Association online, together with my family we created our “Walk To Remember” Walk To End Alzheimer’s team to raise funds for the Alzheimer’s Association.  I also enrolled in the Medic Alert + Alzheimer’s Association Safe Return® program and am enrolled in a clinical trial through the Alzheimer’s Association TrialMatch®.

As a participant in the Alzheimer’s Association 2016 National Early-Stage Advisory Group and Early-Stage Ambassador for the Delaware Valley and Greater NJ chapters, I help raise awareness of younger-onset Alzheimer’s disease and the value of early detection and diagnosis.

“I am not letting this disease define who I am and what I do on a daily basis. I am doing everything I can to raise awareness.”

Copyright 2018: Jeff Borghoff, Living with Alzheimer’s Disease

Help support people such as Jeff. Become a DAI Sponsor or Associate today.

Jeff joined DAI this year,  and is involved in many other organisations and personal things, including managing his own website.

– Alzheimer’s Association National Early-Stage Advisory Group
– Early-Stage Ambassador – Delaware Valley & Greater NJ Early Stage Advisory Council
– Alzheimer’s Congressional Team (ACT) Member

Hello, My name is Myrna Norman

On Day 11 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Myrna Norman from Canada. This series is not only raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia.

Thank you Myrna, from all of us at DAI, and from the global dementia communtiy, for inviting us into your world.

Living well with dementia

Image source: Myrna Norman

Hello, My name is Myrna and I am a Person Living Well With Dementia. I was diagnosed with Frontal Temporal Dementia about 10 years ago.  My personality, well some of my thoughts and my abilities to control my anger, had changed.  My memory was in tact but I knew something was very wrong with me.

As with many of us, my general practitioner just told me that my tests had shown Frontol Temporal Dementia and that I should get my affairs in order.  But, he did ask it I had any questions.

WTF was my first thought.

What was Frontol Temporal Dementia?  If I had questions, first I had to have some education as to what to question.

My husband was going to be away for a few weeks and in hindsight that was a good thing.  I got some information, made up an envelope and suggested that he read this on the plane and discuss the issues with our son.   During this time, I went into a deep despair. I wailed, sniffled, screamed, had a visit to self pity, and tried to educate myself.

Several times during my husbands absence, we did speak on the telephone.  My husband shared with loved ones.  Still what happens next.

A family meeting was called, an appointment was made with a lawyer, and arrangements were finalized.  The probability of 8 years and unable to do stairs would require selling our new house and moving.  We moved along as quickly as we could.  It took time and about a year later, after we had sold our house, much of our larger style furniture sold, major downsizing was accomplished.

Finding the Alzheimer’s Society and taking part in a support group helped immensely.

Finding DAI opened so many doors, for instance, meeting others travelling the same journey, education, and more than words can express.

Now I am a DAI member (for years) Facilitator, Purple Angel Ambassador, a participant in the Canada Dementia Strategy held this year in our capital of Ottawa – about 4000 miles from my home.  I met Kate Swaffer.  I met many others who I had read online, talked with online, even laughed and cried with online.

My life with dementia has brought me more joy than sorrow. My name is Myrna and I have dementia.  I am scared but I am happy.

Help support people like Myrna. Become a DAI Sponsor or Associate today.