Tag Archives: #WAM2018

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‚Äôs 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 ‚Äúappearing self-serving‚ÄĚ. 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 ‚ÄúBig Tuna‚ÄĚ (Peter Watt aka BUB) and, a ‚Äútop-secret board meeting‚ÄĚ, 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 ‚Äúthey didn‚Äôt have a pot to pee in or, a window to throw it out of‚ÄĚ 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),‚ÄúHuman rights, disability and dementia‚ÄĚ, 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‚Äôs 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‚Äôs 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:

‚ÄúKate 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.‚ÄĚ (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‚Äôs message, but more shaken than inspired at first. He started, ‚ÄúWow – she really hates doctors!‚ÄĚ I assumed he was one as well, so I added with narrowed eyes and a sly smile, ‚ÄúYes, especially the younger ones. May I introduce you?‚ÄĚ 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‚Äôt 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‚Äôs cultures from which dementia emerges addresses major cognitive disorders without taking off one‚Äôs 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 ‚Äúsalon‚ÄĚ of penetrating inquiry into dementia to our community centers, doctor‚Äôs 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 Bal√°ńćkov√°

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 Bal√°ńćkov√°’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 Bal√°ńćkov√°. 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 Bal√°ńćkov√° ¬© 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‚Äôt 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, my name is Roger Marple

Wow, it is more than half was through the¬†#DAI #Hello my name is World Alzheimer’s Month series! Our members stories have been really well received, and we thank them for sharing them, and especially want to thank you for reading and watching them. ¬†On Day 18 of #WAM2018, we are proud to share the story of one of our Canadian members, Roger Marple. Thank you Roger for taking the time to write it and allowing us to share it here.

Still living well with dementia

Image source: Roger Marple

I was diagnosed with younger onset dementia, more specifically, Alzheimer’s disease in 2015.  I am happy to say I am still living well with dementia in my life.

I find as time as time goes on, seeing thousands of people worldwide still living well with dementia despite any challenges they may experience, gives me hope for continuing to live well with this disease.

Often, I speak about what hope and living well looks like with dementia. I have been accused by people in public media for ‚Äúsugar coating‚ÄĚ this disease. They always make it a point to remind me this is a terminal disease and the inevitable outcome is death. I‚Äôve been accused by people for spreading false hope. To those people I want to say, I do not have an ego so large to think I can beat this disease. To all of those people I acknowledge this disease has a 100% mortality rate. I‚Äôm a realist; I know the outcome of this disease.

Now that I have that out of the way I want to share some comments made on twitter from people regarding a discussion about dementia:

Tom Harrington‚ÄŹ Verified account @cbctom

Tom Harrington Retweeted Roger Marple

My latest follow. A courageous Canadian who’s discussing his experience with #Alzheimers. We need this. Please RT, follow & learn. #ENDAlz

This comment was made by Tom Harrington. Tom is the host of a very popular CBC radio news show in Canada called The World this Hour. I must say I like him and I am enjoying his comments and views on twitter.  Tom is no stranger to dementia in his life. Both of his parents had a form of dementia. I thought it was nice of him to mention me. I agree with Tom, we need more people to understand dementia in our communities.

He was responding to a comment that I had made on Twitter:

@rogerdoger991

Roger Marple Retweeted Sophie Leggett

Alzheimer’s isn’t the end. We all live with this terminal condition called life. Although dementia is different for everyone, it is not uncommon to live well with this disease and enjoy life for some time to come. Something I do every day…

And to Tom’s and my comments another person responded with this:

Replying to @cbctom

But Alzheimers always gets worse once it begins, never better. Don’t give people false hope.

When I read this comment, I wasn’t surprised. In fact I have learnt to expect this.  People have said comments such as this often to me. This person who read Tom’s and my comments only got one thing out of this. Bottom line, things are going to get worse with dementia and there is no hope.

I thought I would do a role reversal with this person’s comment.  Instead of using the word Alzheimer’s in the sentence, let’s insert another terminal condition called life. Now let’s look at this sentence.

But life always gets worse once it begins, never gets better. Don’t give people false hope.

There might be some logic to this comment; eventually things will get worse with this terminal condition called life. Having said that, is that a reason not to have hope living with this terminal condition?

Often I see jokes about Alzheimer‚Äôs. I see derogatory comments. This is one of many faces of stigma with dementia. ¬†¬†If you are not sure what I mean by this I encourage you to Google ‚ÄúAlzheimer‚Äôs jokes‚ÄĚ. You will find hundreds of them not to mention many websites with more jokes on them with dementia/Alzheimer‚Äôs.

When I look for jokes about other serious diseases in our society like ALS or cancer, I cannot find any. It is just not okay to joke about these conditions, and usually, if we hear of a joke about this, people are furious at comments made. So I pose the question, why is it fair game for people to make fun of people with a form of dementia? Why can’t people see how fundamentally wrong this is?

What if the role was reversed? What if people with dementia posted thousands of jokes poking fun at your weakest points you may experience living with your terminal condition called life? What if thousands of people shared jokes about you and the challenges you may experience on public media, like Facebook, or in your community? What if you opened a birthday card with a joke about your struggles? Alzheimer’s for example.

Would you feel like crawling under a rock and hiding your challenges from the masses making fun of you and not engaging in life to the fullest, regardless of your challenges? Often this is the case for people living with dementia and our loved ones who live with this disease as much as we do. I see it all the time.

As a person living with dementia, here is a promise I will make to all of you. I promise I will not make fun of any challenges you may have with your terminal condition called life. I will see who you are regardless of any challenges you may have.  I will recognize and support you to live your life to the fullest regardless of challenges you have. I promise to recognize what hope looks like for you living your life to the fullest, with the time you have left, so you can live a good quality life. And most of all, I will respect who you are.

My hope is that someday all of us will recognize people with a terminal diagnosis of dementia, and people with a terminal condition called life, that both groups have the same hopes and dreams. Perhaps with time we can walk in each other‚Äôs shoes and have a better understanding for each other.¬†People with dementia want to live a full life for as long as we can — just as we all do. We may have to work a little harder at it that‚Äôs all. We are all the same my friends.

I have a philosophy in life. I show my utmost respect to everyone I meet. Would it be too much to ask for the same in return?

By the way, Tom Harrington had a response to this person‚Äôs comments about ‚Äúfalse hope‚ÄĚ with dementia:

Tom Harrington

@cbctom

Replying to: This isn’t false hope. I lost both my parents to it. This is about an act of courage and awareness. It’s the cancer of the 21st century and we need to focus on it more.

Tom made some good points here. He understands the need for greater understanding of dementia. He knows what dementia in his life looks like. There is something to be said about lived experience.  At the end of the day it will be understanding that will eliminate the stigma that we have to endure living with dementia. As far as the courage part? I look forward to the day when courage is not needed when speaking about our journey with dementia.

Last but not least, all who live with dementia in your lives know this. One person by the name of Naquib Mabfouz said ‚ÄúFear doesn‚Äôt prevent death. It prevents life‚ÄĚ Please do not let fear from stigma get in the way of living well with dementia.¬† The problem is with the person perpetuating the stigma, not you. Remember that.

As I said, my name is Roger. I live well with dementia. My hopes and dreams in life have not changed.

Roger Marple © 2018
@rogerdoger991

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

Help us support people such as Roger. 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 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‚Äôs¬†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¬†‚Äúearly‚ÄĚ-onset Alzheimer‚Äôs¬†and that¬†I was still doing well. She instructed him to¬†bring me back when I couldn‚Äôt 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: ‚ÄúOur Views Our Voices‚Ä̬†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 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 Рabout 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.

Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer‚Äôs Month #WAM2018¬†series of #Hello my name is blogs, we share one of our UK members stories of living well with dementia. Thank you Jennifer for allowing DAI to publish this during September to help us raise awareness of dementia, and the fact that so many people can live positively with it.

Jennifer has represented DAI twice this year, giving presentions at the ADI Alzheimer’s University in London, and the photo we have added here was taken last week. See this tweet thread¬†to read how well her presentation was received.

A Glorious Opportunity

Image source: ADI 2018

Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village.

Jennifer worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 12 years ago as she knew things were not right and was diagnosed 9 years ago with Alzheimer’s Dementia. This is her story.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‚Äėmini stroke‚Äô I lost the use of my left arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008, I developed auditory/visual hallucinations hearing children screaming babies crying and was seen conducting conversations with non-present people I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad whom I found on the internet had done work on Iris Murdoch and Harold Wilson so when he told me in 2009 I had Younger Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later Memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. Although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems and we can even reverse some of the decline.

I have started a memory group for folk where I live based on the Japanese model of using the three R’s (Reading Writing and Arithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead.

For me my Dementia is an unexpected gift, a wonderful opportunity and great privilege.

My husband was a great supporter until he died unexpectedly 7 years ago but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can do emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to also help others cope.  My son  set up my website gloriousopportunity.org and makes my educative films which are all available there to anyone.

There are no rainbows without rain!

Jennifer Bute © 2018

Please make a donation to DAI, so we can continue to support members like Jennifer.

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer‚Äôs Month #WAM2018¬†series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

Please donate to DAI, so we can continue to support members like Maria and her son Rhys.