Category Archives: Younger Onset Dementia

The Joy of DAI and Dementia, by Tamara Claunch

The first month of January is almost at an end! Wow, where did it go?! This month has definitely passed quickly, and for DAI, it has included a lot of celebrations for our 5th birthday.

We even have one more DAI event in January to attend, which you still have time to register for!

But, back to our birthday!

Who would have thought someone would be jealous of having dementia?

Our 5th birthday party was held in lieu of our regular Cafe Le Brain and members meeting, with a high attendance. It was an open session, with everyone being welcome, and access details made publicly available.  Most of our events last for up to 90 minutes; this one went for 2.5 hours, and only ended as those of us who were there the whole time we exhausted! People dropped in and out as they were able to, and everyone had a lot of fun.

Today, we are delighted to share a guest blog, written by one of our newest friends and supporters Tamara Claunch, who attended the celebration, and who has also agreed to volunteer for DAI. We will be sharing some exciting news about that in another blog very soon!

The Joy of DAI and dementia

By Tamara Claunch, written on Janauary 17, 2019

Yesterday I experienced being jealous of having dementia for the first time. If I had dementia, I would be allowed in the club. Yes, the club is that good.

Dementia Alliance International celebrated their fifth birthday recently.

I, along with other professionals, friends and family was invited to join the online, global celebration. It lasted longer than expected and was very well attended. Over 80 people called in on video from all over the world and the facilitators did a fantastic job of recognizing all attendees and making sure all had a chance to introduce themselves and say a little about DAI.

As I listened to the attendees speak, what struck me was how each member of DAI evidenced a lightness of the spirit, an openness that comes with wisdom and gratitude. Wisdom because they’ve experienced intense trauma and loss.

Gratitude because they’re together.

At least this is my interpretation of the energy in that communal space; I would not presume to know how it feels to be them.

At first, I was reminded of Alcoholics Anonymous: the old timer success stories inspire the freshly baptized-with-fire newcomers. They befriend and teach and support one another. As the group gets bigger, it adjusts – more local support groups, more online support groups, more specific support and study groups.

Absolute inclusion. Like AA, there’s only one criterion for joining: you must have the same “condition” as everyone else in the group.

How must it feel to being newly diagnosed with Alzheimer’s, frontal lobe or Lewy body dementia and given less than five or ten years to live? To believe the majority of those years will be spent dependent upon others?

Imagine then how it might feel to meet dozens of people all over the world who are living beyond dementia. People who are fighting their illness and defying expectations. People who are still independent, social and active a decade or more after diagnosis.

At the birthday party, I saw new DAI members experiencing hope for the future, perhaps for the first time since their diagnosis. As one member put it, “I can fight this and make it [the time] count”.

I saw “old” DAI members reconnecting and seeing each other for the first time in a while.

People laughed and joked, empathized and encouraged. They held a moment of silence for members who are no longer around.  All appeared to have a sense of purpose and community and to feel that they are part of something bigger than themselves.

While the members of DAI were uniquely individual, as were their stories, I perceived some common threads running through the tapestry of lively conversation and heartfelt congratulations:

  • They are all immensely grateful for DAI and the impact that it has had on their lives.
  • It’s okay to make fun of dementia, only if you have it.
  • Every journey has a purpose.

For a brief time, I was able to experience the humor and humanity and open lightness that exists within these people and between them.

Contrary to how the media, some caregivers and the medical establishment portray dementia, these people are not dumb. They are not dull. They are not incapacitated. They are funny and bright and witty and inclusive.

They are, simply, humans being human. As one member said, “Individually, we have deficits but as a whole we are magnificent.”

As an Integrative Wellness & Life Coach, speaker and writer, I specialize in working with people who have dementia. I am an advocate, a partner and a champion of persons with dementia. But all my passion and all my expertise did not prepare me for what I experienced during DAI’s 5th birthday party.

It ended up being one of the most present, precious experiences of my life.

If only the world could see these people and hear their stories then maybe, just maybe, the world would start to treat them as human beings deserving of dignity, respect, and inclusion.

So while I may not long for a diagnosis of dementia, I would love to belong to an organization like Dementia Alliance International. They have a lot of fun and they do a lot of good for others. They make a real difference in the lives of people all over the world and I am grateful to be a supporter and friend of the group and its members.

Copyright: Tamara Claunch 2019

About Tamara: Tamara Claunch, MEd, is an Integrative Wellness & Life Coach and the Founder of VitaV Wellness in Aging. She has worked extensively in partnership with the Center for Applied Research in Dementia. Her main areas of expertise are dementia risk-reduction and alternative, nonpharmacological interventions for those living with symptoms of dementia and Mild Cognitive Impairment (MCI). She has extensive experience working with individuals, families and the broader medical community to enable independence, dignity and equality in the lives of people living with dementia. Her passion in life is helping others find purpose in their journey, wherever it may take them and whatever it looks like.

Thank you Tamara for this beautful reflection, and thank you Fei Sun for the image below of some of the people who joined us. 

Image source: Fei Sun

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” ( 2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the launch of the first UN Flagship Report on Disability and Development on the “Realization of the Sustainable Development Goals by, for and with persons with disabilities”The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.

Rehabilitation and dementia: evidence & opportunities

Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.

 

 

 

 

 

About the Webinar:  The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

Register here…

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Register here…

Wednesday, November 28, 2018 – times (USA/UK/EU/CA):

10:00 am  Honolulu
12:00 pm  Oregon Portland/San Francisco USA
12:00 pm  Vancouver CA
2:00 pm    Des Moines/Chicago USA
3:00 pm    New York USA
3:00 pm    Toronto CA
8:00 pm    London/Glasgow UK
9:00 pm    Paris, Munich, Amsterdam, EU

Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):

6:00 am    Adelaide AU
6:30 am    Brisbane AU
7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:00 am    Perth AU/Taipei TWN
5:00 am    Tokyo, JP
9:00 am    Auckland, NZ

The webinar runs for 1 hour. 

Check your time if not listed above by using clicking this link… 

Register here…

 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • DONATION (this is not in lieu of a paid ticket unless it is higher than the fee, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT IS GREATLY APPRECIATED.

WEBINAR FEES AND DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

Hello, my name is Peter Berry

Following on from the World Alzheimer’s Month series of #Hello blogs, we continue to share our members stories. Peter Berry from the UK has been doing a weekly video podcast about his experience of living with dmentia, now up to his 70th. This one was  focuses on the difficulties of a diagnosis, and stigma. Thank you Peter for giving us permission to share your 25th video here.

Dementia Awareness: difficulties of a diagnosis

Peter Berry on Twitter 
Peter Berry on YouTube
Studio Interview with Peter Berry representing DAI

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 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 Veda Meneghetti

Image source: Accolade 2nd Dementia Summit

It’s almost the end of World Alzheimer’s Month, and we have been sharing our #DAI daily members #Hello is stories. In fact, there are so many in our draft folder, we will be continuing them well beyond #WAM2018. These stories have helped raise awareness not only of dementia, but of the unique and individual experiences each person has with a diagnosis of any type of dementia.

Today, we share  Veda Meneghetti’s story, who was supported by her partner Lynda. DAI member Mike Belleville produced the video which shares some of Veda’s beautiful photographs, with her own music, and an overlay of her story, also copied below. Thank you Veda, and also Lynda and Mike for todays blog.

“Hello, I’m Veda Meneghetti. I was born in Adelaide, Australia to an Italian migrant father and an Australian mother. I got called “Veda Spaghetti” at school.

I hated school, but I was a “cool” teenager.  My mother worked in a department store so I always had great clothes. My dad was a stonemason who worked in marble. He kept a wonderful vegetable & fruit garden and I had animals around me….I love animals.

I liked art but hated everything else and left school at 15. They’d made me feel stupid -I didn’t know I was dyslexic till 50 years later. I taught myself to read & write well, but I can’t read a music score.

I’d been playing guitar & singing since I was 10. I went on TV for a young talent time thing & then became lead vocalist for a couple of Adelaide bands. We started touring in Australia and then went overseas when I was 21. I met up with a girls’ band and continued to work with them as resident musicians in Asia, Africa and Europe. We came back to Australia when I was 27 and became the Party Girls band. We toured a lot, made an album ourselves, appeared on TV and wrote a lot of our own music. In 1985 we were the only girls band to kick off the Australian leg of the 1st. world simulcast, Aids for Africa. I did lead vocals and rhythm guitar.

When the band split up I started my own band, Safari, which played regularly in Sydney in the 90s. I kept on writing songs though I retired from performing. My last 4 songs were recorded in 2010.

In 2012 I was diagnosed with Primary Progressive Aphasia (logopenic). I’m losing language so my partner Lynda is writing this for me. I can’t read or type/write anymore, but I understand.

I joined DAI after I met Kate Swaffer. We did a presentation together in Kiama for Dementia Awareness Month 2014. Lynda and I became members of the Kiama Dementia Friendly Community Advisory Group, the #KiamaDAGs. We get together socially with other people living with dementia in our region, run community education workshops and sometimes do media coverage for the project.  Lynda and I have presented at a few conferences, using my songs and our photos. We’ve made a lot of new friends who have dementia. We still get involved in research. I’m not ashamed to say that I have dementia – people need to know what it’s like.

I just want to live in peace. I’m happy living two hours from Sydney – it’s beautiful here. We go back to the city now & then to visit friends, because now most people have stopped visiting us.”

Veda Meneghetti © 2018

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

Help us support people such as Veda. 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 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 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 “sugar coating” this disease. They always make it a point to remind me this is a terminal disease and the inevitable outcome is death. I’ve 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’m 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 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’s. 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 “Alzheimer’s jokes”. You will find hundreds of them not to mention many websites with more jokes on them with dementia/Alzheimer’s.

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’s 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’s 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’s comments about “false hope” 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 “Fear doesn’t prevent death. It prevents life” 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

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