Category Archives: Younger Onset Dementia

International Day of People with Disability 2021

The International Day of People with Disability #IDPwD is held on 3 December every year, and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability.

Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.

The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life. This year, our past Chair and CEO, and co-founder of DAI, Kate Swaffer writes about why she believes it is critical to manage and supporting dementia as a disability. Thank you Kate.

The Dementia Alliance International (DAI) membership joins the rest of the world on Friday 3rd December 2021 to observe the International Day of Persons with Disabilities. The theme this year is Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.

Dementia is a condition causing disabilities.

During this years celebration of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era.”, and  we are observing the challenges, barriers and opportunities for people who live with disabilities, in the context of a global pandemic.

My hope for this UN Observance Day is that dementia is a condition causing disabilities will be embedded into policy and practice everywhere. We must fight for this right, and interestingly, the covid pandemic has not only highlighted our experience of islation, discrimination and stigma, it has also highlighted how many of our rights are being denied.

Not to treat dementia as a condition causing acquired cognitive and other disabilities, is a major barrier to improving quality of life and reducing stigma and isolaton. To do so, is also an excellent opportunity to create real change.

As I continue to advocate about my continuing concerns of the lack of dementia being well recognised as a condition causing disability in academia, in policy and in service provision, I have to work har don retaining HOPE, which  members tell us joining DAI also gives them.

This is especially so, when for example, a research project is specifically concerning post diagnostic care, support and services, or quality of life for people living with dementia.

Since my own diagnosis of a younger onset dementia 13 years ago, I am becoming increasingly distessed by the lack of recognition of dementia as a disability and lack of proactive support for the more than 55 million people with dementia to live with more hope, and to live more independently for longer. 

People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to others refusing to accept that dementia is a condition causing cognitive and other disabilities, is systematically denying us proactive disability support at the time of diagnosis and takes away more hope of living positively with a diagnosis of any type or cause of dementia.

Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study…’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived many years, some even decades, beyond the projected life span they were given at the time of their own diagnoses, and many of these people say it is mostly due to managing dementia as a disability. 

Thankfully my university taught me to see the symptoms of dementia as disabilities and provided me with disability assessment and then very proactive disability support to keep living my own life, not too long after diagnosis. Of course, I did not especially like accepting another seemingly negative D-word. Accepting I had a diagnosis of dementia, and the stigma and discrimination due to the label of dementia was bad enough but accepting dementia as a disability initially added to my misery. 

However, this is a critical step that was hugely important in my ability to live more positively – and importantly, more independently – with younger onset dementia. 

  • Dementia is listed as a major cause of disabilityand dependence on the WHO website 
  • In 2010, the World Health Organisation launched the updated version of the WHO DisabilityAssessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated on their website under Dementia Facts, that dementia is a condition which is the leading cause of disability and dependence. (It now says a major cause)
  • People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disabilityservice)
  • Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first to do this for a person with dementia after my diagnosis
  • It is recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
  • The International Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognise dementia as a condition causing acquired cognitive (and other) disabilities
  • The WHO re-categorised it in 2017, as a condition causing cognitive disabilities (it had been listed under psychosocial disabilities before then).

If we ignored something as important as this in any other health space, everyone would be advocating for change. 

Whilst it may be unpleasant accepting a second D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially allows many more people to be distressed about their diagnosis for a shorter period, and to become more proactive about their diagnosis by actively seek disability support. 

Everyone has the right to knowledge, and to appropriate care and support.

Everyone has the right to be told that dementia causes disabilities. 

Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to live with them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone after a stroke. 

If a university can provide disability assessment and disability support for a person diagnosed with dementia to continue living – why then, is it so hard to by everyone else? I believe it is critical if we are ever to improve post diagnostic experiences for people more newly diagnosed with dementia.

Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, goes against their most basic humna right to knowledge about their condition.

Not to,  also denies them disability assessment and support soon after diagnosis and an awareness tht for many, it may be possible to maintain independence and a higher quality of life for much longer.

It is akin to not telling a person newly diagnosed with cancer there are treatments that may – or may not – work. 

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Abstract submissions for the 35th ADI 2022 Conference close soon

ABSTRACT SUBMISSIONS CLOSE SOON

Join ADI for the 35th Global Conference of Alzheimer’s Disease International on 8-10 June 2022, in London and online.

Alzheimer’s Disease International (ADI) is proud to play host to the longest running international conference on dementia, attracting over 1,000 delegates from all corners of the world. The conference boasts an international range of keynote speakers and oral and poster presenters, whose talks report on the latest advances in each of the 7 action areas of the World Health Organization’s (WHO’s) Global action plan on dementia.

With a high standard of scientific and non-scientific content, the conference programme appeals to a broad audience ranging from medical professionals and researchers to informal carers and people living with dementia.

We strongly encourage members of DAI and others living with dementia to submit an abstract, to ensure the voices of dementia are well represented.

If you would like DAI to assist you with writing an abstract, or submitting it, please contact us by email: [email protected]

Check out the Program Overview here!

 

ADI have also produced a series of videos, where you can find an overview of the ADI 2022 conference programme, as well as abstract topics to choose from, from ADI CEO Paola Barbarino; how to write and submit a successful abstract with hints and tips from Research and Policy Project Lead Wendy Weidner, and an easy to follow guide on submitting an abstract through the ADI conference website with Jane Cziborra, Head of Events.

In line with the hybrid format of our 35th global conference, taking place both online and in-person in London, UK, applicants will have the option to select on their submission form whether they would prefer to present in-person or online.

People with dementia may also contact ADI for assistance, and for a word document submission form to write and submit your abstract.

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Books by people with dementia

For our final day of Dementia Awareness Month, and to further celebrate the voices of people with dementia, two DAI members, Christine Thelker and Kate Swaffer have created a list of books written and published by people with dementia.

In contrast to the vast number of books written by family members or care partners, we could only find about 3 dozen written by people with dementia. However,  they are a unique and honest view into the real lives, of real people diagnosed with dementia.

If you know any that have been missed, please let us know!

Listed in chronological order, to highlight how long people with dementia have been speaking out:

My Journey into Alzheimer’s Disease, by Robert Davis, 1989

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowin, 1994

Losing my Mind: An Intimate Look at Life with Alzheimer’s, by Thomas DeBaggio, 2002

When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s, by Thomas DeBaggio, 2003

Just Love Me: My Life Turned Upside Down by Alzheimer’s, byJeanne Lee, 2003

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden, 2005

Alzheimer’s from the Inside Out, by Dr Richard Taylor, 2006

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowen, 2011

Silent Voices: My Battle With Alzheimers Rages on, by Norman McNamara, 2011

Who will I be when I die? , by Christine Bryden, 2012

From the Corner Office to Alzheimer’s, by Michael Ellenbogen, 2013

On Pluto: Inside the Mind of Alzheimer’s: 2nd Edition, by Greg O’Brien, (1st Edn 2014, 2nd Edn 2018)

Nothing About Us, Without Us!: 20 Years of Dementia Advocacy, by Christine Bryden, 2015

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46, Christine Bryden, 2015

What the hell happened to my brain?: Living Beyond Dementia, by Kate Swaffer, 2016

Diagnosed With Alzheimers Or Another Dementia: A practical guide to what’s next for people living with dementia, their families and care partners, by Kate Swaffer & Lee-Fay Low, 2016

Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia, by Kate Swaffer, 2016

Dementia Activist: Fighting for Our Rights, by Helga Rohra, 2016

Five minutes of amazing: mjourney through dementia, by Chris Graham, 2016

The Lewy Body Soldier: The Lewy Body Soldier, by Norman McNamara, 2016

Walk the walk, Talk the talk, by Keith Oliver, 2016

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, B. Smith, Dan Gasby, et al., 2016

The Dancing Dementia Dude: An Urgent Conversation Between Dementia Folks, Care Partners and God, Dallas Dixon, 2017

Memory’s Last Breath: Field Notes on My Dementia, by Gerda Saunders, 2017

“Was zum Teufel geschieht in meinem Hirn?”: Ein Leben jenseits der Demenz, by Kate Swaffer, 2017

Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain (How to Die Smiling Book 1), by Jarem Sawatsky, 2017

Somebody I Used to Know: A Memoir, by Wendy Mitchell, 2018

Will I Still Be Me?: Finding a Continuing Sense of Self in the Lived Experience of Dementia, Christine Bryden, 2018

A Doctor’s Personal Journey of Hope, by Dr Jennifer Bute, 2018

Talking Sense: Living with Sensory Changes and Dementia, by Agnes Houston, 2018

Dear Alzheimer’s: A Diary of Living with Dementia, by Keith Oliver, 2019

Dementia Strategies, Tips, and Personal Stories, by Myrna Norman, 2020

For this I am Grateful: Living well with dementia, by Christine Thelker, 2020

Slow Puncture: Living Well With Dementia, by Peter Berry, 2020

Sean’s Story: My five tips for living with frontotemporal dementia, by Sean Kelly, 2020

Dignity & Dementia: Carpe Diem: My journals of living with dementia, by Mary Beth Wighton, 2021

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There are now many books which include chapters authored by people with dementia, e.g.

Dementia Rehabilitation, 1st Edition: Evidence-Based Interventions and Clinical Recommendations, Edited by Lee-Fay Low & Kate Laver, chapter 1, Rehabilitation: a human right for everyone, by Kate Swaffer.

The Routley Handbook of Disbility Activism, Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, chapter 10, Dementia as a Disability, by DAI members, Kate Swaffer, Brian LeBlanc, Peter Mittler. This book was the 2019 Outstanding Handbook – Social Sciences – Award Winner.

 

 

 

 

 

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

Christine Thelker wins the 2021 recipient of the Richard Taylor Advocates Award

It is World Alzheimer’s Day, and DAI is thrilled to announce one of our Alumni Board Members, Christine Thelker from Canada is the recipient of the prestigious 2021 Richard Taylor Advocates Award.

We congratulate Christine, and also want to share some of her story, including this interview with Kate Swaffer about winning this award.

Christine Thelker receives the 2021 Richard Taylor Award

 

Finally, read why Christine was nominated by DAI member, Debbie Kaey.

Please explain why you believe Christine Thelker is a worthy candidate for the Richard Taylor Advocates Award:

First, Christine Thelker has opened a door for living with dementia that is “real”, not trying to paint an unrealistic picture of what living with dementia is like. Her relationship with the dementia community is vast and respected. She is\was an active board member, active in membership committees, action committees, host and co host, for support groups, webinars, cafe’s and special events with many dementia based and other community groups. She brings speakers to DAI for webinars, and puts together things like World Rocks Against Dementia.

Recruiting new members, she has developed one on one relationships with people living with dementia. She is not only a major promoter of DAI, she is an active Board member of DAI. Within the dementia community she is a liaison with other groups such as Dementia Advocacy Canada. Currently she works with people waiting for diagnosis until such time they are able to become members of DAI. Part of the Ed-Sig group (an environmental Dementia Special Interest Group out of Singapore) which is under the DAI umbrella. She also works with the Canadian Consortium of Neurodegenerative, Age well Canada, TREC ( Translating Research into Elder Care.

She writes for the Dementia Connections Magazine, along with several others like the Vernon Seniors Action Network ( VSAN). There are many more groups she is involved with but her love of and belief in DAI is well documented (eg: many interviews, articles as well as having written a book (eg: second one in the works).

Her support of so many has gained her much respect. She is a caring, sensitive and encouraging person, never dismissive, an empathic listener and is honest, “real” and has a gentle personality that invites you into her world, whether you have dementia or not.

Wise and discerning, she really does listen to a person’s narrative, reflecting back what they are feeling and thinking and not trying to offer personal opinion, but sage suggestions, allowing a person to walk the journey in their time.

I am honoured to know her. Her work speaks for itself and opens many doors for others, giving and not holding back anything she knows. She is very humble and I was so pleased she accepted this nomination. I hope you find in favour of this nomination.

Sincerely, Debra Anne Keay

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Quotes, from one of Christine’s presentation, at the ADI conference in Chicago in 2018:

Living with Dennis and Dementia, by Tina

Today, as part of our blog series for Dementia Awareness Month, Tina Baker who is the care partner and wife of one of our members Dennis Frost shares with us what is is like, for her, living with Dennis, as well as living and supporting with Dennis, who is diagnosed with dementia.

Tina highlights the importance of not defining the person by the dementia or the disabilities casused by many symptoms of dementia, as well as some of her own challenges and highlights. Dennis also shared some of his musings with us recently.

Thank you Tina.

Living with Dennis and Dementia

By Tina Baker

Image source: Tina Baker

Dennis is for the most part pretty easy to deal with as he keeps himself busy, with projects, zoom meetings, which are on most days. He does side projects for each of these and when he is not doing these things he is out in his shed making fine detail for his model railway, or making items from wood, which he is very good at and has made several items of furniture around the house over the years

Time watching, Dennis will eat at the same time every day, and wants to go  to bed very early, and he wants me to go with him, he says he can’t sleep unless I do, unless I am away from home, but as I work shift work and some shifts I don’t finish until 8.00 pm and get home, shower it would be about 8.20 so when he says are you ready to go to bed at 8.30, of course I am not, no I say, 8.40 are you ready now? Ah still no, I have now taken on a bad habit of downing 2 glasses of red wine as fast as I can so when by the third time at 8.45 I am at least relaxed enough to go to bed, and hope that sleep will happen, especially if I am on a 6.00 am start. I wish I didn’t indulge him years ago with this then maybe it would not be an ingrained habit now.

One thing about Dennis is that his taste for food has changed and he really doesn’t like many foods he once liked, this has created a somewhat issue with what to cook, so now most dinners are now plain, although sometimes I just want to have something I want so I cook 2 different meals, but because I work shift work, I am able to cook the foods I want to eat, which works out well in this regard.  I do cook up meals that I know he likes and freeze them of in hope when I am on a late shift, that at least Dennis might eat well enough.

Dennis is very independent and so is able to look after himself in a capable way, he gets his own meals ready when I am working, he still bakes slices and muffins ect, he still drives … although since Covid this year that is limited, he can still converse on the phone.

Dementia and the after effects, this can be embarrassing at times …. It also can be a good thing. On the bad times occasions the few times that Dennis has lost his temper in a supermarket, throwing things, arguing with staff about, well anything, being threaten with the band forever… been better for a while on this”, on the good side, he has managed to get our phone bills reduced, he has argued with billers to give us a better deal, rate, he has saved us hundreds of dollars over the year/s ….

But I am his voice in the bad times; I explain why he is like this why change may make him angry … why he is not wearing a mask…. Covid has bought its on challenges …. But he Dennis has adapted to these, as long as the people don’t come on the attack…. Eg…. Do you have a mask sir … Dennis no …. Here is one you can wear…. No I have an exemption …. No problem sir ….  Instead of NO MASK NO ENTRY this will only bring on a Dennis Tantrum in my words .

What do I do for me?

Well, as it has been stated above I am still full timed employed, so my time is mostly taken up with work, but I love to walk and I am luckier  than most carers as I am able to do this … my down time from work and the daily grind, is to walk for km … around work shifts which take me to different locations … bush, the beautiful south coast, local and even the hills of Kiama.  I am also still able to go away overnight occasionally with friends to attend shows and events. I would never take this for granted, especially after reading about so many other carers, I just appreciate the time now, and hope to be prepared when the time comes for other situations

Support

Dennis has a great support team whether it is from his group of people with the disease around the world, his friends that he has locally or the extended people throughout the studies and groups he is involved in , as for me? If there is anytime I just need to vent then the Dementia cares group is a great way to do this, through this site I have learnt so much, especially on how to answer the questions that others will ask about Dementia.   As I am a health worker at a hospital, and where that hospital does have a ward just for people with Dementia, I am able to answer questions on behaviour, on how to deal and treat these people but using the experiences that I have had, I am able to tell people that Dementia is real but is nothing to fear, I am Dennis voice in many situations, but I am also the one that explains what I do know to the next generation. I have been given cards and advice over the years on where to find support if I ever do need it and as I do work in the hospital environment I think I can find a way to get support if needed, there are resources out there, and it’s just a way to find out how to access them.

Dennis has come so far with his knowledge and training in the Dementia world, he has been in many studies, involved in many ways different groups, I think his input will go on to teach many others, and I am just glad that I can be a small part in this, maybe someday there will be a cure, and everyone that is involved especially the input of the ones with Dementia  that have spoken out about their experiences will be the thing that has helped with this cure, they are should be proud of the part they have had with their voices and stories have helped so many and will help so many more because they were brave enough to speak out.  I may not like everything about this nasty disease but I do love knowing that the person I love so much may the voice that can change the world and its opinions about it …… and I have experienced so much,  because of it, I would never have thought about traveling to some of the locations I have been lucky enough to experience, I would not be as brave as I am now to speak up, to use my voice to help others understand, I would not be the person today if I did not meet Dennis, Dementia or not he has taught me so much .

Dementia is a disease but is it does not define us, those that have it and those that are close to it, but all stories connected can change the conception of it and eventually lead to a the Cure.

Tina Baker

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A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

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The importance of connections by Chrissy Thelker

For Day 8 of Dementia Awareness Month, we are thrilled to publish a blog about the importance of connections, written by DAI member, Chrissy Thelker.  #WAM2021 #DAM2021 Thank you Christine.

The Importance Of Connections 

By Christine Thelker
This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother.
Now for a little history; she and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support.
It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey.
DAI gives us that safe place to share to laugh to cry. To rediscover who we are after being devastated by receiving a diagnosis.
The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out.
I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being.
We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they to can offer that someday to someone. My friend thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
Together the impact we have on each other, for each other, is priceless.
So for Dementia Awareness Month, I challenge you all to think about the friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those of us who are living with dementia.
Christine Thelker 

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A Call to Action by Julie Hayden

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia. Today, is a personal article, and a call to action,  written by DAI board member, Julie Hayden from the UK. Thank you Julie.

Ignoring the stigma: A Call to Action

By Julie Hayden
Hi, I’m Julie Hayden from Halifax in UK. As part of World Alzheimer’s Month I thought I’d just share some musings with you on my dementia and how I prefer to be seen.
Firstly, despite my dementia, I am a person, not a disease or a condition.
I am, and always will always be, a mother, grandmother, friend and someone who cares passionately about the rights of others.
I have been outspoken all my life, and refuse to stop until my dementia forces me to do so. I realise that this sometimes makes me unpopular and means that some people view me as being difficult, but quite frankly, at this stage in my life, I don’t care.
Why should I allow my dementia, or others’ stigmatised view of it dampen my spirit or my drive for more justice in the world? I now assess others far more on their actions than their rhetoric.
I recognise many faults in myself, but refuse to see my fight for a fairer world for people with dementia as one of them. 
I often think about how my uncooperative nature will impact on me later when I am living in residential care.
Will my unwillingness to do as I am told regardless of my wishes be interpreted as BPSD? Am I destined at some point to be “managed” by chemical cosh? I hope not, but at that point in my life I may have little or no personal influence.
The only thing that my friends, colleagues and I can do to prevent that happening, at least for those who follow on from us is to talk and write about our lived experience as a way of educating and enlightening others.
So please, join with us within DAI and the many other dementia organisations across the globe to make 2021 a year when we are able to take a step forward in banning BPSD and look at more humanistic and holistic ways of caring for people living with dementia.
Thank you.

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

Clearly, life is not over with a diagnosis of dementia…

Julie Hayden is a Board Member Dementia Alliance International (DAI), a Founder of Young Onset Dementia & Alzheimer’s (YODA), a Steering Group member of the 3Nations Dementia Working Group (3NDWG), Prime Minister’s Champion’s Group on Dementia and a
Board Member Deepness Radio & Recovery College.

Patience by Rose Ong

DAI continues to observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we are delighted to hear from Rose Ong who lives in Canada. Rose is a member of Dementia Alliance International (DAI), and a co-founder and member of The YODA Group, associated with Memory Lane Home Living, a Canadian charity advocating for the rights of dementia affected adults in our community. Thank you Rose.

Patience

A poem written by Rose Ong
on August 15, 2021

I know you think I’m crazy sometimes
And question my judgement
On every decision I make
But if you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

I remember when you were small
When you began to use the words
I would say, or words you heard others use
Most times they fit the context
Of what you wanted to say, but,
Occasionally, they were way off the mark
I would just smile and ask
“Do you know what ‘convoluted’ means?”
Your sheepish grin; another teachable moment

You say, now, that I should know better
When I burn toast at breakfast or forget
My lunch in the microwave or wake at noon
So many repetitive items are jumbled in my mind
And like you were once, I would ask for patience
Because I deserve your forbearance
Not only because I am your Mom or Nana
I am a human being; faulted and flawed
Sheepishly giving you a teachable moment

So when you think I’m crazy sometimes
And question my judgement
On every decision I make
If you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

Rose Ong

Since you’re here, please donate to DAI today

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.