Tag Archives: #DAM2020

What’s it like to live with dementia?

 

 

On the final day of Dementia Awareness Month, we share a short video of one of our co founders, Kate Swaffer talking about three things she now knows about dementia.

As a co founding member of DAI, Kate has often said she is glad she co-founded DAI, because it provides support, gives people hope, and helps them to ‘reclaim their lives‘, after it has been stripped away.

Whilst not all members join peer to peer support groups, and not all members become active in DAI, those who do, regularly say: “DAI saved their life”. DAI is Life Changing.

3 Things I know [about dementia]

The Drum, SBS, Australia

Introduction by Ellen Fanning, 5 May 2020,
Reporter Stephanie Bolte

When [DAI co-founder, Chair and CEO] Kate Swaffer started to see words upside down over a decade ago, she thought it was a result of brain surgery she’d had. It turned out she was one of more than 26,00 people in Australia under the age of 65 with what’s known as younger onset dementia. 

Told to get ready to die, Kate’s world seemed to disappear overnight, but she realised it didn’t have to, and she has gone on to co-found Dementia Alliance International and advocate across the globe for dementia in practice to be seen as a disability. She sat down with reporter Stephanie Boltje, before the Coronavirus shutdown, to explain three things she knows about dementia.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia to continue to have a voice, by donating to DAI.

Amy Shives speaks about stigma at 2015 Alzheimer’s Forum

Amy Shives is one of the eight founding members of Dementia Alliance International, and one of the first people with a diangosis of dementia to speak at an Alzheimers Society conference. In 2015, she gave an important presentation on her diagnosis, and on stigma. As Dementia Awareness Month 2020 is coming to a close soon, we have decided to highlight two of our founding members, starting with Amy.

Amy says she hopes to dispel some of the myths of this disease; she has dementia, of the Alzheimer’s type  – A-typical, and she says she  has never been typical in her whole life, so she is comfortable with this diagnosis! It seems most people with dementia are not typical, as everyone experiences it differently. She also asks not to be labelled as a sufferer.

You will not be sorry you watched this brilliant and extremely entertaining short presentation.

Thank you Amy, for being a founding member of DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia like Amy to continue to have a voice, by donating to DAI.

 

DAI Masterclass 2: My conversation with my doctor

 

 

During September in 2012, DAI hosted four Masterclasses, and to change the pace a little this year for our daily #DAM2020 blog series, on Day 28 of Dementia Awareness Month 2020, we are posting the second one, which is about the conversation with your doctor, when you are worried about cognitive changes.

Included on the panel are two medical doctors, Dr Jennifer Bute and Dr David Kramer, who were both working as medical doctors when diangosed with dementia.  Much of the advice is still extremely relevant to getting a diagnosis today, but it is also very useful advice once diagnosed, for all follow up appointments.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Support DAI to host more webinars like this, by donating today.

Graeme Atkins shares his songs on YouTube

 

 

Graeme Atkins is the 2020 winner of the Richard Taylor Advocates Award, and on Day 27 of Dementia Awareness Month, we are privileged to  highlight some of the songs Graeme, with the support of his wife Susan, has composed and performed.

Graeme was diagnosed with Younger Onset Dementia in 2009, and he says ‘his dementia story’ is actually ‘our dementia story’, as it is his partner Susan’s story as well. DAI is delighted to share two his songs with you here today. You can also read a more detailed blog about his story here, an Interview with myself.

Thank you Graeme. We are so glad  you found DAI.

Al Zheimer’s, by Graeme Atkins

Song for DAI, by Graeme Atkins

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people diagnosed with dementia like Graeme by  supporting DAI.

Bill Yeates shares why he is glad he found DAI

On Day 26 of Dementia Awareness Month 2020, Bill Yeates shares with us why he is glad he found DAI. Thank you Bill, we are all glad you found DAI too.

My name is Bill Yeates and I live on the northern beaches in Sydney, Australia. I was diagnosed with Younger Onset Alzheimer’s Disease last year, at the age of 59.

As devastating as this diagnosis was, it has also opened my eyes, as I now need to create a new life based on new dreams and new hopes for the future.

I am glad that I found DAI, because without their support and encouragement, I doubt whether I would have had the strength, motivation and will power needed to make this journey. In saying this, I believe that there is something very special in being able to talk freely with other DAI members, about the challenges, issues and demands that we face on a daily basis.

To me, it’s like being amongst your closest friends – where everyone is non-judgemental, great listeners and full of compassion.

It reminds me of a definition of a true friend that I recently came across.

Someone who has your back, no matter what happens.

I am glad that I found DAI because I have learnt that being an advocate is more than just telling your story. For me, it’s also about creating an awareness and acceptance in our community and fighting for the rights of people with mental illnesses, such as Alzheimer’s Disease and dementia, on a national and global scale. Of which DAI has an outstanding record, that is internationally recognised.

Finally, I am glad that I found DAI because through my involvement in the Brain Health group, they have been instrumental in motivating me to create my own strategy, in terms of how I can manage my Alzheimer’s Disease on a daily basis.

Based on the concept of positivity, and using the dimensions of Brain, Heart, Mind and Soul, I have created my own ‘leaves of positivity’ which represent the actions and changes to my life that I have made. When joined together, they form my Tree of Awakening your Positivity.

As a DAI member, if you are interested in learning about this approach, please go to my website… 

Thank you for taking the time to listen to my story about why I am glad that I found DAI. I hope that this important month of September, brings everyone, alot of hope, joy and happiness for the future.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people  like Bill by  supporting DAI.

Using Montessori Principles to Radically Improve Engagement for Residents and Staff

 

 

DAI was honoured to have two very eminent experts present at the May 2020 “Meeting Of The Minds” Webinar. Dr. Camp is the Director of Research, at the Center for Applied Research in Dementia, and a highly published author. Gary Johnson is a Partner and Consultant, at Monarch Pathways. His passion is improving the relationship that happens between frontline staff and their leaders.

It is already day 25 of Dementia Awareness Month #DAM2020 and we are delighted to highlight the recording of this webinar. Thank you Cameron and Gary.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia people with dementia to have a voice, by  supporting DAI.

 

About the webinar: These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.

How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®

About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.

About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

World Alzheimers Report 2020: Design, Dignity, Dementia: Dementia-related design and the built environment

On day 23 of World Alzheimer’s Month/Dementia Awareness Month #DAM2020 we are pleased to share the Alzheimer’s Disease International World Alzheimer Report launched yesterday on World Alzheimer’s Day: Design, Dignity, Dementia: Dementia-related design and the built environment. Our  daily series is varied and we hope, relevant, and this topic is critical to the future of dementia care.

Increased awareness had been desperately needed of the potential of good design to improve equal access for people with dementia, and there has been increasing urgent global demand by people living with dementia to see this translated into practice.

The two volumes of the 2020 World Alzheimers Report have brought together the principles and practice, and will be an important resource now and into the future.

The webinar hosted by ADI was extremely well attended, with more than 1100 who registered, and over 600 people from 77 countries who logged in and attended the live event.

An important theme running through the webinar was around dignity – or the lack of dignity accorded to people living with dementia by certain design methods. Panelist Kevin Charras PhD showed a slide of different examples of this, stating: “It’s quite appalling when design relies on stigma and stereotypes of dementia. It turns into furniture that is vintage, colours and contrasts that are exaggerated, and signage that is triple in size, and streets inside buildings, which becomes very confusing.”

Watch the recording of the webinar here:

World Alzheimer Report 2020_Vol1

World Alzheimer Report 2020_Vol2

Kate Swaffer presented at the webinar, and has provided her slides here and speech notes below.

Disability Rights, Enabling Design and Dementia

Kate Swaffer, ADI Webinar, 21 September 2020

Slide 1 – Disability Rights, Enabling Design and Dementia

Thank you to Paola and ADI for launching such a critical report, and congratulations to the report co leads Richard, John and Kirsty for your a very impressive report.

It is very comprehensive, and I’m sure it will become an influential report into the future. Thanks also to Richard for the opportunity to contribute to it.

Slide 2 – Reframing Dementia as a disAbility

The World Health Organisation (WHO) clearly states that dementia is one of the major causes of disability and dependency among older people worldwide and through campaigning at the 2016 WHO Mental Health Forum in Geneva, cognitive disabilities were added as a fourth category under the mental health umbrella. Now that dementia is being described in UN documents as a cognitive disability, we are reminded that people with dementia are fully recognised by the UN as rights bearers under the CRPD treaty.”

In an article I co-authored with Prof. Richard Fleming, Dr Linda Steele and others, we quoted Susan Cahill, who noted, the CRPD ‘allows for a new and exciting dialogue to emerge, where the framing of dementia is no longer characterized by stigma, fear and exclusion, but rather, where the individual with dementia is viewed as a legitimate part of mainstream society’.

Once we accept that ‘dementia is a major cause of disability’ we understand it is a critical reason why it is so important the built environment for people with dementia is accessible, in the same way we provide wheelchair access.

With the rise of a disability rights movement for disabilities caused by any type of dementia, predominantly being led by people with dementia globally, we have come to understand the problem is not with the person with dementia, but about the environment being made accessible.

This of course, includes the physical and built environments.

Disability arises out of the interaction between a person with a health condition, and the environment in which they live and work.  A health condition causing disability can include a stroke or a diagnosis of dementia, a long-term health condition such as mental illness, or through losing a limb or another physical function due to an accident.

As this slide shows, we have icons that equate to action, including in most countries, legislation, for most of the more visible disAbilities – it is now time for the invisible disabilities such as sensory or communication disabilities, to be included in building design, and in the way organisations operate.

What use is my wheelchair, if there is no ramp or lift to allow me access?

Similarly, what use is it me going to the bank or supermarket, if the staff can’t communicate with me?

Not to provide equitable access, including through the built environment for everyone is like asking someone without legs to climb a flight of stairs.

Slide 3 – Human and Legal Rights

Even though people with dementia still retain the same rights as anyone else in society, including human rights and disability rights, there has been little change in the realisation of these rights.

A human rights-based approach is about making people aware of their rights, whilst increasing the accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

The WHO Global Dementia Action Plan for a Public Health Response to Dementia identifies human rights (and specifically the CRPD) as one of three ‘cross-cutting principles’.

The principles included in the Convention on the Rights of Persons with Disabilities and its Optional Protocol (CRPD) are clear; it is up to us to provide people with any kind of disabilities with the options to make those choices.

We cannot live with dignity, if we are not provided with access to live with dignity and respect.

We cannot participate equally, if we are not provided with the access to do so.

All of these principles are underpinned by the built environment, and our responsibility to ensure access to it, as we do with other disabilities.

The use of these principles allows a design to respond in different ways to people’s needs, preferences, lifestyles, cultural and socio-economic backgrounds, as well as the local climate and geography.

No longer can we pick and choose what rights we wish to uphold, or only focus on e.g. rights to dignity or health, which when interpreted do not disrupt the current medicalised approach to dementia;

Disability rights and disability access matters to me; in fact I cannot maintain my independence without it.

I hope they also matter to you.

People with physical disabilities have made major progress as substantial, influential members of society.

Yet we are still being left behind, not only in terms of health and social care, but in terms of recognition and the management of dementia as a condition causing disability and therefore of legislated disability support including enabling and accessible built environments and communities.

What this means is that people with cognitive disabilities caused by dementia are still being denied the most basic access to live independently in their communities.

Slide 4 – The built environment and disability

The environment’s influence in creating disability or in increasing it has been well established and is seen as integral to the definition of disability and is integral to the definition of disability. When the built environment changes, then the experience of someone living with a disability will also change.

The paradigm change introduced many decades ago by the disability rights movement has made modifying the built environment for accessibility commonplace, and in most countries, legislated. We are all so familiar with accommodations for physical disabilities that it is rarely an issue, as accessible bathrooms, guide-dogs, assistive listening systems, or wheelchair ramps are available almost everywhere.

As the image of this wheelchair shows us, even wheelchairs are being made much more accessible than when they were first in use. This is how we must view the built environment too, as we need equitable access for all.  We know that most people who have dementia or who are older and require assistance with our daily activities, would prefer to continue to live in their own communities and stay in their homes, and society has a responsibility to ensure equal access as all of its citizens.

Slide 5 – Thank you

We must all work towards ensuring the built environment for people with dementia is accessible.

  • We don’t need more reports or more rhetoric.
  • What we really need now is ACTION.

Thank you.

Kate Swaffer, MSc, BPsych, BA, Retired nurse
Chair, CEO and co-founder, Dementia Alliance International
Board member, Alzheimer’s Disease International

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

 

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia to have a voice, by  supporting DAI.

Diana Blackwelder shares why she is glad she found DAI

On day 22 of Dementia Awareness Month #DAM2020 we are pleased to hear from Diana Blackwelder on why she is glad she found DAI. Diana is a Board member, on our Action group, and has been a back up host for our Friday peer to peer support groups. She is involved with advocacy through DAI, and her local chapter, as well as through being involved in dementia research. Diana has also been very involved in supporting this campaign, by interviewing other DAI members as they share their stories this month.

Thank you Diana. We are really glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people like Diana today, by  supporting DAI

Graeme Atkins wins the Richard Taylor Advocates Award in 2020

DAI is pleased to announce the recipient of the 2020 Richard Taylor Advocates Award, recognised on World Alzheimer’s Day 21 September 2020. This year it goes to DAI member Graeme Atkins from Australia for his outstanding service to others living with dementia, and his commitment to DAI’s  mission and vision of a world where ALL people are valued and included.

Graeme was diagnosed with the younger onset Alzheimer’s type of dementia in 2009. He has been an advocate for improving outcomes for people ith dementia, in particular by composing and performing songs about being diagnosed, or living with dementia.  Graeme says he can only do what he does, because of the love and support of his wife Susan,  also lovingly known, as we now say in DAI thanks to our Chair Kate Swaffer, as his Back Up Brain.

DAI is proud to call Graeme their ‘Resident Rec. (or is that wreck?) Officer! Thanks for everything that you continue to do Graeme.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

You can also read more of Graeme’s story here.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people like Graeme today, by  supporting DAI.