Tag Archives: #WAM2020

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.

Jane Callachan shares why she is glad she found DAI #DAM2020

DAI member Jane Callachan lives in Salem, Massachusetts and as part of our Dementia Awareness Month series of vlogs/blogs, shares why she is glad she joined DAI. It is already day 20 of this campaign, and we hope you are enjoying hearing from our members…

Jane was diagnosed with younger onset dementia aged 55, and she regularly joins the Friday afternoon DAI peer to peer support group. One of the best things about these groups, Jane said, is that she can join online, and doesn’t have to drive to one!

DAI has helped help Jane feel much more independent, and has introduced her to others who are living positively, in spite of dementia. “DAI really does make a difference”.

Thank you Jane. We are 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 Jane today, by  supporting our Virtual Art Auction.

Terrie Montgomery shares why she is glad she found DAI

On Day 19 of Dementia Awarenss Month, DAI member Terrie Montgomery shares why she likes, and also why she got involved with DAI. Terrie is a dynamic person, and is involved with DAI, and also with other organisations including Dementia Action Alliance in the USA.

Terrie is a dynamic, passionate and exteremely compassionate woman, who willingly shares herself, and her love with us all. She dares you to check out DAI, and shares what she sees as the value of being involved in a global organization! 

Thank you Terrie. We are glad you joined 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.

Please support the Monday Science fundraiser to support more people with dementia like Terrie.

Gait Retraining and Dementia, by A/Prof James McLoughlin

In July this year, DAI hosted a webinar Gait retraining and Dementia, by A/Prof James McLoughlin. It was very well attended, and we are pleased to share it during Dementia Awareness Month 2020.

James is an Associate Professor at Flinders University in Adelaide. He has a Bachelor of Applied Science (Physio), a MSc(Clinical Neuroscience), and a PhD, and is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic.

James is passionate in promoting best practice for people with neurological & vestibular conditions. He has previously presented to us on Rehabilitation and Dementia.

About the Webinar: People with all forms of dementia can experience changes to their walking and balance. There are many factors that can contribute to these issues that can be targeted within an individualised rehabilitation program. James will discuss some of the proactive ways neurological physiotherapy can help with treatment, training and support.

Watch the webinar recording  here:

#DAM2020 #DAIisLifeChanging #WAM2020

Make sure you get involved in the DAI Art Auction this week.

Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries

Statement by the WHO Civil Society Working Group on Noncommunicable Diseases. 

Published 11 September 2020

Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries.

This new statement on ‘Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries’ from the World Health Organization (WHO) Civil Society Working Group on NCDs calls on all relevant stakeholders including WHO Member States, UN agencies, programmes and funds, international global health and humanitarian organisations, NGOs, academic institutions and the media to protect public health policies from undue influence of unhealthy commodity industries.

Download the statement here…

Kate Swaffer is pleased to represent Dementia Alliance International on this second WHO Civil Society Working Group, which is one of 36 Member organisations.

Follow our Dementia Awareness Month 2020 stories and campaigns below and check out our Art Auction

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.

DAI Art Auction

Wally Cox is a DAI board member and peer to peer support group co-host and a truly wonderful person. He has donated one of his original Artworks for us to Auction this week.

Thank you Wally.

Details: DAI Silent Art Auction

Original painting by Wally Cox
12×10 inch Watercolor (unframed)

Note: View the attached watercolour has been added here with a watermark to protect the original artwork.

About Wally Cox: Wally lives positively with dementia and is an active DAI board member and peer to peer support group host, and also advocates with his local Chapter of the Alzheimer’s Society. He is an amazing artist, and you will not be disappointed with your purchase of one of his watercolours. Check out his Facebook page for posts of some of his other art.

Guidelines and instructions: The online Auction means the person with the highest donation received in the period September 14 – 18, 2020 will be the winner. Wally will then contact you for your address to post the original artwork.

When making donations, please note that Wally and his wife Patricia have offered to pay for the costs of your packing and postage (shipping) to receive the painting.  We ask you are mindful of this when making your donation; an extra amount towards this hard cost would be appreciated.

DONATE HERE FOR YOUR CHANCE TO WIN THIS BEAUTIFUL WATERCOLOUR.

Thank you Wally.

#DAIisLifeChanging #DementiaAwarenessMonth #DAM2020 #WAM2020