Category Archives: Dementia

Cultural Competence and Dementia by Dr David Paulson

Embracing Cultural Competence whilst Changing the Conversation on Dementia

By David Paulson © 2018

“Cultural competence is about our will and actions to build understanding between people, to be respectful and open to different cultural perspectives, strengthen cultural security and work towards equality in opportunity. Relationship building is fundamental to cultural competence and is based on the foundations of understanding each other’s expectations and attitudes, and subsequently building on the strength of each other’s knowledge, using a wide range of community members and resources to build on their understandings.” Educators’ Guide to the Early Years Learning Frameworkp21; Educators’ Guide to the Framework for School Age Care, p57.

Image source: David Paulson

I had just finished presenting on a panel discussion at a Dementia conference. A tall, jovial middle-eastern man in his 20s approached me. We chatted and found we could talk on many topics, so we went for a walk-and-talk. The topic being dementia, and me knowing utterly nothing about his home country, I opened the door by telling how my family handled my paternal grandmother’s senility, and later my Dad’s Lewy Body Dementia.

My grandmother was in her 90s in 1979 when she was abruptly taken from her farm where she’d lived alone since my grandfather’s premature death in 1960. No one explained anything to her or asked what her wishes were. She was tucked away in another city in a nursing home where no one would see her and “embarrass” the family, and that was my parents’ generation’s goal.

To continue  the conversation with my acquaintance from a part of the world about which I know absolutely nothing, I simply asked how many first cousins he had, first stating I had 9, they mostly lived within an hour’s drive and I knew all their families.

He threw his head back and had a good laugh. “My family would fill this convention center, and where I’m from – we’re ALL related in some way. I know of over 120 first cousins!” Since my partner passed away during the AIDS epidemic and our foster sons are in their early 40s now and I’ve not had contact with them in years, I have no family other than my birth family and relatives. He found that tragic and shocking. “How do you not kill yourself from loneliness?” I was aghast at his question and fell silent.

In Armistead Maupin’s Tales of the City (1976), Michael Tolliver famously confesses to his hippie friend Mona, “All I really need are five good friends” while he fails over and over (and over) again to find true love. That is part of our culture – many find love in their close friends, forming close, enduring families of friends.

My new acquaintance couldn’t begin to wrap his mind around that, he being from a clan-based culture. So this was the opportunity to ask him if he had any relatives with dementia. I mean, with all those relatives, there mustbe at least a few! He said, “well of course there are some. But you’ll never know who they are. We surround them like the leaves of a head of lettuce, care for them and make sure they live with dignity.”

“Yes, but are their individual rights respected? Are they allowed freedom?” He tut-tutted me the way someone with a British-English accent does.

“You’re trying to understand this through American sensibilities. Turn that off and see through them through my eyes. We never discuss it – we just know they’re losing it, and we deal with it.”

And then he didn’t want to talk about that or anything else any more, politely bade me farewell before we even introduced ourselves strode off and hopped in a taxi.

As of this writing, Dementia Alliance Internationalis active in at least 47 countries and several languages. Our first barrier is the concept of the “Support Group.” Most countries only understand a support group as being AA, and some non-alcoholics in many countries would find it pretty disturbing to sit around at spill one’s guts to other human beings – and have that accomplish anything. But today it is a widely accepted model for recovery in the U.S..

In mental health, vastly fewer support groups exist for persons with mental disease, especially those with severe mental disease. For example, those with schizophrenia, are often not expected or trusted to be able to think or speak for themselves – many are homeless or imprisoned. Support groups that do exist are for the poor families and caregivers who “suffer” silently at their sides (sarcasm). The concept of support groups for persons with any form of Dementia when DAI was first established first was shrugged off, then roundly criticized and now is become an emerging model of living well with Dementia.

For this model of living well with Dementia to continue to proliferate, it can only do so in a context of continuous building of cultural competency. As s DAI embraces persons and groups from other cultures/languages, keeping in mind that a different language is inextricably related to another culture, and not all people who speak a language share a particular culture.

My sister and I visited her friends in Liverpool years ago. I am a polyglot, but I could scarcely understand a word they said, nor they I. They understood my French better than my English. How is this anecdote relevant? For our online support groups to continue to grow in other languages and cultures, we must ask the right questions relevant to others’ cultures and technologies before we begin to extoll the many benefits of DAI.

For example:

  • Do you have access to a device that can broadcast and stream video/audio? Netbooks & tablets start at around $140, have cams and mics. Smartphones are more.
  • Do you have wifi accessible that supports streaming video?
  • Is there a quiet place you can use your device privately to stream a chat with others?
  • Will your family permit you to speak freely online to a group of people who also have dementias?

Culture is: technology, expectations of conduct (profanity, clothing, topics like politics or religion, cross-talk[1], expression of anger/disgust, taboo topics, observations of religious and civic holidays, etcetera), and certainly how much one discloses in a support group.

For example, in my case I was brought up not to disclose how I feltabout something; that was vulgar. One of my grandmothers was born in the end of the Victorian age in 1894, so she held those values firm. We all have some core values that have more to do with our respect for those who raised than our own beliefs. Those are simply part of our families’ cultures.

DAI does not seek to change other’s cultures. Rather, we endeavor to continuously better acculturate ourselves to persons with dementia from throughout the world. Many of our support groups are cross-cultural. Some are even cross-linguistic as we share the common goal of living well with differing dementias.

It is my personal goal to continue to integrate persons with dementias from cultures speaking the Romance family of languages as I am a Romance Linguist. Many of us who are monolingual are “fluent” in understanding other cultures, ready and able to create a conversation about Dementia which will be of continuous benefit to persons from many diverse cultures. In our support groups, we:

  1. open new channels of Communication, respectful of
  2. diverse Cultures, making
  3. new Connections among persons with dementia and support agencies, often making
  4. Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
  5. newCommunities of support, fellowship, laughter, friendship and love.

We do all we can to live well with dementia.[2]

Consider donating to DAI to help support our online Support Groups as we continue to grow throughout the world, fighting the one thing about Dementia that most cultures share: Shame of having a family member with dementia, their forced Isolation and lack of Support and Protection for those living with the disease and their caregivers.

[1]Persons from an Alcoholics Anonymous or a similar background tend to reallyhate cross talk. In AA, everyone gets a turn, and when everyone has finished, then you may have a 2nd turn if there’s time, but you don’t talk back and forth or you are immediately scolded.

[2]Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.

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

Hello, my name is Peter Mittler

Image source: Peter Mittler

The #DAI #Hello #WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.

As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.

Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.

Hello, my name is Peter Mittler

MY REFLECTIONS ON OUR HUMAN RIGHTS

My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.

My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title:  Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.

The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2.  Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet.  That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.

Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.

  • What can be more important than our human rights?
  • What is worse than decisions about us without us?
  • Why do governments and decision makers ignore us?

Since March 2015 when Kate Swaffer first demanded access to the CRPD at the World Health Organisation, I have worked with her and many others to secure our rights but we have very little to show for our efforts.

The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017).  It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.

There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.

Will it happen?

Over to you!! 

Peter Mittler © 2018

 

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

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


 

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

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

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

Hello, my name is Wally Cox

On Day 27 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Wally Cox. Wally is an active advocate and DAI member, and co hosts one of our USA support group. Wally also featured in our online Art Exhibition just a few hours ago! Thanks Wally for sharing your story by saying hello here, and for all that you do for DAI and others.

DAI and Wally Cox © 2018

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

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

Hello, my name is Bob Murray

Image source: Bob Murray

On Day 25 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.

Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.

Let me help you understand…

Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and  intend to live well with it wherever the journey takes me. I also want to help you understand.

In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.

I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.

My dementia is progressing slowly

I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.

There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation

I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.

When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!

I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.

From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.

Thus was born “My Voyage with Dementia”.

This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.

Seeing my opinion column in print is very exciting.

Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.

Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.

And, life goes on… I do wonder what is next.

Bob Murray © 2018

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

Help us support people such as Bob. 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 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 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.

Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer’s 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 ‘mini stroke’ 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

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