Category Archives: Copyright © 2021

Join us as we say goodbye to 2021

Please Join Dementia Alliance International as we say goodbye to 2021, and celebrate the new year with a Festive Season Café! 

Altough late postign here, we are thrilled to invite all DAI members, family, friends and partners as well as anyone in the global dementia community to join us for a Special Festive Season Café to celebrate the spirit of the holiday season & ring in the new year! Hosted by the DAI Board of Directors.

This is a virtual celebratory event primarily for DAI members, family, and friends. Everyone is welcome. Please respect our members; it is not a networking opportunity.

DAY/DATE(S):
– Tuesday, December 21, 2021 (USA/CA/UK/EU)
– Wednesday, December 22, 2021 (AU/NZ/Asia)
– Please note this is one event, set in a number of different time zones.

DAY/DATE(S):

Tuesday, December 21, 2021 (USA/CA/UK/EU):

    • 1:00 pm PST
    • 2:00 pm MST
    • 3:00 pm CST
    • 4:00 pm EST
    • 9:00 pm GMT, UK

Wednesday, December 22, 2021 ( AU/NZ/ASIA):

    • 5:00 am SGT
    • 7:00 am AEST
    • 7:30 am ACDT
    • 8:00 am AEDT
    • 10:00 am NZDT

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED:

Support people with dementia this holiday season!

Please donate to DAI or become an Associate or Partner with us!

Without YOUR DONATIONS, DAI could not provide the services we currently provide for members, their families & our global family.

 

 

International Human Rights Day 2021

All human beings are born free & equal in dignity and rights.

Article 1: Universal Declaration of Human Rights

The International Human Rights Day is observed every year on 10 December. It commemorates the day in 1948 the United Nations General Assembly adopted the Universal Declaration of Human Rights.

2021 Theme: EQUALITY – Reducing inequalities, advancing human rights

Human Rights are universal rights of every human being to be treated with dignity, respect, and fairness. This year theme for Human Rights Day focuses on how rights are the beginning of peace within societies, and a way to create a fairer society for future generations.

Unfortunately, people living with dementia are often denied their human rights through subtle and indirect discriminatory practices, making it hard to tell when treatment contravenes their rights as citizens.

A typical example would be, being coerced into doing something on the pretext of being in “their best interest” as they are diagnosed or living with dementia. At this year Alzheimer Europe Conference 2021, Patrick Ettenes from the LGBTQ+ community spoke about multiple discriminations because of his sexual orientation and living with young-onset dementia.

People living with dementia and their care partners have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, religious beliefs, health status and those aspects directly because of their dementia.

Yet today, the fight against discrimination remains a struggle for more than 55 million people living with dementia globally.

  • The right to be free from inhuman and degrading treatment
  • The right to liberty on movement
  • The right to be free from discrimination including indirect discrimination such as unfair treatment and applying blanket policies
  • The right to respect for private life includes autonomy over their own lives, care, and treatment; participation in the community; access to and respect for private and confidential information
  • The right to respect family life includes maintaining family relationships and ongoing contact.

The human rights of people living with dementia lie at the core of Dementia Alliance International (DAI) advocacy work. In 2016, DAI launched the 1st edition of a booklet to provide a basic introduction to Human-Rights Based Approaches (HBRAs) – The Human Rights of People Living with Dementia: from Rhetoric to Reality.

The aim is to get people living with dementia to have basic knowledge of their human rights or to join forces with others to claim and hold their national dementia organization, as well as their governments, professional organizations, media and the general public, accountable and being fair in policies & service delivery, and full inclusion in civil society; “Nothing About Us, Without Us.”

Organizations, healthcare practitioners and individuals who care for people living with dementia, including informal care partners, must respect, protect and take steps that people with dementia have the right to make decisions for themselves whenever possible.

They have the right to be treated with dignity and respect, and live as independently as possible, for as long as possible.

#HumanRightsDay
#StandUp4HumanRights
#HumanRights4All

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Early Bird Registration for ADI2022 Closes soon

Dear friends and colleagues,

Following an email from ADI, we just wanted to send you a brief reminder that super early bird registration for their 35th global conference ends this Friday 10 December at 23:59 GMT. As you may already know, ADI 2022 will be taking place online and in London, UK on 8-10 June 2022.

As a hybrid event, our super early bird registration rate applies to both in-person and virtual delegates. By taking advantage of our super early bird discount, you could save up to 65% on their regular registration rates.

For those who are living with dementia, a family carer, student or living in a low- and middle-income country, there are additional reduced rates for both in-person and virtual registrations.

Bursaries for free virtual registration for people living with dementia are currently available, with additional bursaries for in-person and virtual registrants that are living with dementia, family carers and early career researchers, opening soon. A limited amount of travel bursaries will also be made available around the same time.

Contact ADI if you are interested in applying for a bursary by emailing them here: [email protected]

Under the theme of ‘New horizons in dementia: Building on hope,’ the conference will be an opportunity for the dementia community to reflect and look to the future. Leading experts will join us for presentations, debates and roundtable discussions addressing the 7 action areas of the WHO’s Global action plan on dementia, around which the programme is structured.

We look forward to you joining many of DAI’s members, and the global dementia community in London and online!

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Young onset dementia: identifying the signs and diagnosis must dos

Earlier this year, one of our members, Natalie Ives from Melbourne presented at the Australian Young Onset Dementia Special Interest Group’s first webinar. Unfortunately, due to an IT issue on the day, it was not recorded well enough to upload tp YouTube, but Natalie has kindly agreed to share her full speech notes with us today.

Thank you Natalie.

Hi and welcome to todays webinar!

My name is Natalie ,I am a devoted mother of two daughters and a teacher by profession .

I am also an advocate and member for Dementia Alliance International, Dementia Australia, and the Australian Aphasia Association. Aside from these important roles, I love to travel; when we aren’t in lockdowns, as well as taking on different art projects in my spare time. 

I will now discuss how my loooooooooooooong journey began from raising my teenage  daughters , to now living with young onset dementia.

I first knew something was different with me when I would have trouble finding the right words to say, or think of them, especially when I had to fill out a form but couldn’t think of the right words.

Now this was different for me , as I had higher education and used to talk academically and writing essays relative ease.

The difficulty with my speech continued and I would start to use google or ask my girls for help when  I had word blanks.

Gradually ,I started noticing changes in my spacial awareness.

Crossing the road would sometimes be difficult as I would not be able to judge the right point of when to cross . Which my daughters would help me do. Now its funny how my girls had to tell me when to cross the road, as their mother , it was my job to teach them how, not the other way around!

This is when things started to look serious when we moved into our new home and I would start forgetting basic tasks liken how to use my phone or how to cook meals that I cooked effortlessly.

One day, my girls were out with friends during the summertimes I was home alone keeping out of the heat. I had put some eggs pan to boil to make sandwiches later , and that’s when I went blank. All I remember after that was my family friends hovering over me with the paramedics behind them.

I was told later on by family that I had called my daughters in a panic, unable to speak coherently and was not myself .I didn’t know my name or much else about myself at the time when the paramedics were looking at me.

Then I was taken to sunshine hospital and taken to a ward; the paramedics had suspected that I may have had a stroke, so the doctors looked into that .I was poked and prodded, taken up and down for scans to see what could have happened. All of this I don’t remember much, only what I have been told.

I was kept over night for supervision ,but released the following day.the doctors didn’t know what was wrong with me , and let me go with a referral to see a neurologist shortly after.

They said to come back to the hospital if anything should happen again.

unfortunately it did happen again, and I want back to hospital as instructed ,but they said nothing was wrong with me and that I wasted their time calling the ambulance. I was left in the emergency room for 6 hours and was given a script for epilepsy meds (as I found out from my GP)

My GP was supportive of me throughout the whole journey . I went to her to discuss what had happened at the hospital, and to find out if she could get some results from all the tests.

She called and found out that day I went to the hospital that first timer had brain swelling and was not told about it .

After all this all this, I felt alone. I felt. I wasn’t being Hurd or trusted by all these people who were supposed to help.even they didn’t believe at the time . Some of the doctors needed a course in sympathy  and effective communication with human beings .

Terms such as migraines and anxiety were thrown around by the doctors as an easy way of explaining what was wrong with me , since they didn’t know .the neurologist from before said I had mild cognitive impairment and that I should see a nuropsych .from that nothing was concrete .

I was referred to see a psychologist .

If that wasn’t enough the psychologist told me I shouldn’t be there as I wasn’t dealing with mental health issues.

I was left with no where to go 

I had to search by my self for a solution 

I went back to my GP to discuss all of the things that had happened, which was a wise move as she is a proactive doctor . 

I was now being looked after a medical profession who believed me and wanted to help.

The diagnosis of mild cognitive impairment was a umbrella term for dementia, or young onset in my case. A friend of mine with the same condition suggested I contact Dementia Australia ,which I am here with today. I have now been with them since 2019 and now I’m involved with Dementia Alliance International .

I’ve been able to find support I needed through the friendships I have built with people like me who have had a lived experience with dementia.

Recently on my journey I have been diagnosed with my speech pathologist with primary progressive aphasia ,which she said was quite clear from the initial phone call.

All these diagnoses have helped me understand what is going on with me.i finally feel herd and some of my concerns have been validated .which has  reduced my stress heaps .

This journey has been hard , but with the support of my family and friends; a few special doctors; dementia Australia and dementia alliance international ,I am able to embrace my new life living with dementia and aphasia .

From my lived experience, I have a want for change. I want other people who will go through what I have in the future to be supported by the medical community. Dementia and other related issues aren’t taught to doctors of medicine.i believe there needs to be education on these issues within the medical community, so others like me who had no idea what was wrong with them can feel heard and supported.

Please support more people like Natalie who live with dementia by donating to DAI today.

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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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Show your Support this Giving Tuesday

Tuesday November 30, 2021 is the 10th #GivingTuesday, a global generosity movement that encourages people everywhere to do good for others in need of help. It started as a simple fundraiser idea in 2012 between the 92nd Street Y in New York and the United Nations Foundation and has become a worldwide charitable campaign.

Our story:

8 years ago, a group of 8 individuals living with dementia from 3 countries came together with the need to have one strong voice, and to provide each other, and others living with dementia, advocacy and support. The aim was to bring a community of people living with dementia together to urge the government, private sector, and medical professionals to listen to their concerns, to provide better support, and to work together to address this urgent global crisis.

Every 3 seconds, someone in the world is diagnosed with dementia, and currently there is an estimated 55 million people, who are not being provided with adequate, if any, support. They are advised to get their end of life affairs in order, and advised that nothing can be done.

They are profoundly stigmatized and discriminated against, losing their right to co-exist and co-participate in their community.

When Dementia Alliance International (DAI) peer-to-peer (P2P) support groups were set up almost 8 years ago, they brought hope and joy to many who had not laughed and spoken since their diagnosis. This continues today, as new members of DAI continue to report DAI gives them HOPE.

And this would not have been made possible without the kindhearted supporters like you who showed up and gifted their time and donation to bring a new life of hope to the members.

Because of acts of kindness and generosity, DAI can continue to provide online peer to peer support groups and other activities for the members free of charge in 49 countries and counting.

Because of that, members of DAI are able to look forward to a new DAI website that is easier to navigate. Until then, DAI needs supporters like you to help to make these services remain available to our steadily increasing number of members from around the world.

Give people living with dementia a chance to regain hope for a future. Help DAI, an organization by and for people living with dementia to improve their quality of life.

Today, on #GivingTuesday, we share this fundraising campaign for Dementia Alliance International. Make a gift of generosity today.

How you can help:

  1. Make a gift to DAI
    Every gift matters equally. Give what you can, when you can. Give once, or set up a monthly donation. It is entirely up to you. You can donate easily and safely here.
  2. Tell your contacts about #GivingTuesdayDAI
    In conversation, by email, on social media… it is your choice. Let them know about the day, initiate a conversation about what matters to themand how they can help bring about positive change for people living with a diagnosis of dementia.
  3. Partner with DAI. Encourage others to do the same.
    Every little bit helps. When you talk about us, donate to us, share our resources, you add your voice to a growing chorus of people with dementia whose vision is a “A World where all people are valued and included.” Your words, your actions, your gifts have power, they help strengthen us to fulfil our mission.
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100% of your donations go directly to support people living with dementia and their families. We have no paid staff, and no physical offices.

Thank  you.

World Kindness Day

On November 13 it was World Kindness Day, and today, we share an article written by one of o ur new Board members, Dr. David Paulson.  Whilst we are late posting this, we think  it would be wonderful if every day was Kindness Day, as everyone thrives better with kindness.

World Kindness Day

In 1998, World Kindness Day (WKD) was formed as part of the World Kindness Movement, that was formed in 1998, to promote kindness throughout the world and is observed annually on November 13 as part of the World Kindness Movement.

WKD promotes kindness throughout the world. It is observed in the USA, Canada, Japan, Italy, India, Australia and the U.A.E. According to National Today, “World Kindness Day presents us with the opportunity to reflect upon one of the most important and human principles. On a day devoted to the positive potential of both large and small acts of kindness, try to promote and diffuse this crucial quality that brings people of every kind together.”

The purpose of World Kindness Day is to highlight good deeds in the community, focusing on the common thread of kindness which binds us. It has achieved global attention in the two decades since its inception. Events associated with the day have attracted people from every inhabited continent in the form of concerts, dance mobs, and the distribution of “kindness cards.” The purpose of World Kindness Day is to highlight and encourage good deeds in your community. It also serves as a reminder to all those simple acts of kindness have power, and that together, we can all work to create a kinder world. You may wonder how compassion from one person can make a difference. It isn’t easy to comprehend, but every kind act, even the smallest one, creates a ripple effect you can’t begin to imagine.

The World Kindness Movement launched in Singapore in November 2000. Currently, over 28 countries are a part of the World Kindness Movement group. Observance of World Kindness Day is still unofficial. The World Kindness Movement hopes to obtain official status by the United Nations. If successful, World Kindness Day would join the ranks of recognized days of observance, such as the International Day of Peace, Human Rights Day and World Health Day. In 2019, the World Kindness Movement attained official status as an NGO under Swiss Law.

There are many ways to observe World Kindness Day:

  • Call a relative you haven’t spoken to in a while
  • Tidy up around your house
  • Pick up trash you see on the ground outside and throw it in a garbage can
  • Hold the door open for someone
  • Chat with a stranger and ask them about their day
  • Pay for a stranger’s coffee or meal
  • Compliment someone
  • Send a positive or encouraging text to five people in your contacts
  • Surprise someone with flowers
  • Tell a family member or friend you love them
  • Write a note on the receipt at a restaurant for your server
  • Offer to help with someone’s errands
  • Give a surprise gift to someone you care about
  • Send a kind card or note to a friend

Source: Inspired Kindness World Kindness Day 2021 Your Complete Guide.

These are but a few of the ways to celebrate WKD.

Dementia Alliance International highlights World Kindness Day as we as an organization reach out to others in kindness to offer education, research findings, pathways to healthy management of dementia and social networking to those who also are living dementia. Our online support groups were founded on kindness and compassion. These values are echoed throughout DAI’s literature and official documents.

Why not reach out and show someone a kindness to help commemorate World Kindness Day!

Let’s all be kind on every day.

“We can’t heal the world today, but we can begin with a voice of compassion, a heart of love, an act of kindness.”  (Mary David)

Dr. David Paulson
DAI Peer to Peer Support Grop Cohost and Board Member

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Watch our webinar “Cognition-oriented treatments for people with dementia” on YouTube

Available to watch now is the recording of the September Webinar, Cognition oriented treatments for people with dementia, by by Dr. Alex Bahar-Fuchs and Dr. Loren Mowszowski. It was one of four from our 2021 Dementia Awareness Month series of webinars focused on Rehabilitation for Dementia webinars.

“Cognition-oriented treatments for people with dementia”

This webinar was presented by Dr. Alex Bahar-Fuchs who is a clinical neuropsychologist and an NHMRC senior research fellow in the Department of Psychiatry at the University of Melbourne, and Dr. Loren Mowszowski who is a registered Clinical Neuropsychologist and NHMRC-ARC Dementia Research Development Fellow at the University of Sydney.

About this DAI “Meeting Of The Minds” Webinar

There are no known effective interventions to stop or reverse the progression of symptoms in people with dementia; however, many treatments are available to slow the process of decline, reduce the impact of cognitive and functional impairment, and improve the day-to-day experience, quality of life and confidence in people living with dementia.

In line with this, several high-quality Clinical Practice Guidelines for dementia rehabilitation around the world predominantly focus on recommendations targeting cognitive and mental functions, and a large body of evidence indicates that cognitively oriented treatments have shown promise in relation to cognitive outcomes. In this presentation, we will discuss the key features and evidence behind three main approaches to cognitively oriented treatments: cognitive training, cognitive rehabilitation and cognitive stimulation therapy.

The presentation included some practical examples of how the techniques underpinning some of these approaches can be used to support day-to-day activities. For health professionals, we propose key factors to consider when planning or implementing cognitively oriented treatments. Finally, the presenters proposed areas requiring future attention in research and clinical practice.

November Research Wrap – Building Bridges – the importance of collaboration in research

This is the second in our re-emerging series of monthly blogs or articles focused on research, and was co-authored by a researcher Jennifer Bethell, and Christine Thelker who is a very active Alumni board member of DAI.

It highlights the importance of including people with dementia as collaborators in research, and supports the recently launched #DAI 2021 Global Report, Valuing the advocacy of people with dementia: moving dementia out of the shadows.

Building Bridges : The Importance of Researchers and Persons with Lived Experience Coming Together

“Patient engagement” is defined by the Canadian Institutes of Health Research (CIHR) as meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation – where “patients” include people with personal experience of a health issue and caregivers, including family and friends.1 Other organisations, including in the UK and US, use slightly different terms: patient and public involvement2 or engagement,3 but they all overlap on the importance of involving patients and caregivers. Of course, for dementia, the word “patient” may not always be the best; people living with dementia are many things – they have identities defined by a lifetime of personal and professional relationships and activities – for most, being a “patient” is a relatively small part of that. We try to talk about people with lived experience instead, but also see the need for more formal terminology.

There are a few reasons both researchers and people with lived experience have argued for patient engagement in research. Mostly, it comes down to two things:

  1. It makes for better research – people with lived experience can help researchers figure out how to plan their study in a way that asks the right questions for the greatest impact, is more appealing for prospective participants, collects the most important information and shares the results with more people and in the right way.
  2. It’s the right thing to do – people impacted by the research should have their say in what research is done and how it is done as well as the ways the results should be used.

For research on dementia, there’s another reason: it challenges the stigmas associated with dementia. Stigmas associated with dementia, including public stigma and self-stigma, are major issues worldwide4-9 and can have negative effects on the health and quality of life of people impacted by dementia. Engaging in research helps to challenge negative assumptions about the abilities of people living with dementia.

Whatever the motivations, patient engagement means people with lived experience of dementia are becoming more and more involved in research. No longer just “study subjects”, they are taking on roles as members of the research team, participating in planning, conducting and communicating research. This idea is not new – it’s been common practice in some areas of research for years – but it is still relatively new for research on dementia.10 Fortunately, dementia advocates, researchers and research organisations worldwide are working together to move these ideas forward.

As a person with lived experience, I can remember feeling a sense of intimidation at the very thought of working with a researcher. Having your confidence shattered with diagnosis, the thought of working alongside a researcher seemed out of my realm. I was sure I would have nothing to offer, after all they were at so much of a higher academic level.

In my first venture into research, I was hesitant, scared actually, nervous, apprehensive.  It took me a while to be brave enough to engage and interact. But taking that first step was so important – because I haven’t stopped. I started working with a number of researchers: Kathy McGilton at Toronto Rehab then the TREC (Translating Research into Elder Care) team as one of their Voices members, then with AGEWELL and Noelannah Neubeaur on the Dementia and Wayfinding Project. This brought me to the CCNA (Canadian Consortium on Neurodegeneration in Aging), where I first met Jen Bethell, Ellen Snowball and Carrie McAiney.

Getting involved in research was the start of feeling confident again, feeling I had value and worth, that I could still contribute to this world in meaningful ways.  Working with the researchers I work with now is truly a highlight of life for me. The connection, the friendships that have come from the work we do will last long past the end of a project. I continue to learn from both researchers and other people with lived experience. Understanding the work being done, how things move forward and why enables me to share in my advocacy. I learn each time we meet and enjoy watching the projects come to fruition. Giving researchers insight and the ability to understand the lived experience helps ensure their work can have a positive outcome for those affected by dementia. It creates a great sense of pride in knowing you have helped produce something of great value, work we all can take pride in, and that will still be helping others long after my time is done. I always leave feeling better and having a better day. I leave feeling valued, appreciated and like I am part of a team. I am grateful to work with researchers, I will continue to recommend that more people with lived experience get involved. Let’s keep building bridges, because together it is making a difference for those with the lived experience.

Taking that first step is important. I would recommend people with lived experience get involved with groups like DAI(Dementia Alliance International), DAC (Dementia Advocacy Canada), DAA and others, they will help you find research groups. Don’t be scared to try different research groups till you find the one that fits for you, or maybe several will resonate with you.

As a researcher, I also remember the first project involving people with lived experience. I was intimidated – they were the experts! But I was excited – yes, I believed engaging people with lived experience could make research better and it was the right thing to do. Through this work, I also learned the importance of tackling the stigmas associated with dementia9 and started to think of “patient engagement” in research as one way to do this. From my experience, researchers who want to engage people with lived experience of dementia share these motivations – we are also curious about others’ perspectives, open to new ideas, adaptable when circumstances change and humble about things we don’t know. We want to make research a place where people with lived experience of dementia feel valued, respected and supported.

Through the CCNA, I have had the privilege and pleasure of working with Christine as well as 16 other people with lived experience of dementia from across Canada. They came together just over a year ago, but the CCNA Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group is already contributing to research grant applications and projects, planning and participating in our annual Science Days and helping to shape the way research is communicated. They’re also influencing my own work and views on dementia and research. But there is much more to be done! If you are a person living with dementia, in Canada, and interested in hearing more about opportunities to get involved in research – please reach out to us.

Christine Thelker is an author, an advocate, Alumni Board Member of DAI (Dementia Alliance International), Recipient of the Richard Taylor Award in 2021, and was diagnosed with Dementia at 56, she is now 62.

Jennifer Bethell is a researcher and co-lead of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) program.

References:

  1. Canadian Institutes of Health Research (CIHR) https://cihr-irsc.gc.ca/e/48413.html
  2. National Institute for Health Research (NIHR) https://www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437
  3. Patient-Centered Outcomes Research Institute (PCORI) https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement
  4. Alzheimer’s Disease International (ADI), World Alzheimer Report 2012 https://www.alzint.org/resource/world-alzheimer-report-2012/
  5. Alzheimer’s Disease International (ADI), World Alzheimer Report 2019 https://www.alzint.org/resource/world-alzheimer-report-2019/
  6. World Health Organisation (WHO), Dementia: a public health priority https://apps.who.int/iris/handle/10665/75263
  7. Government of Canada, A Dementia Strategy for Canada: Together We Aspire https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html
  8. Shah H, Albanese E, Duggan C, Rudan I, Langa KM, Carrillo MC, Chan KY, Joanette Y, Prince M, Rossor M, Saxena S, Snyder HM, Sperling R, Varghese M, Wang H, Wortmann M, Dua T. Research priorities to reduce the global burden of dementia by 2025. Lancet Neurol. 2016 Nov;15(12):1285-1294. doi: 10.1016/S1474-4422(16)30235-6.
  9. Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS. Patient and Public Involvement in Identifying Dementia Research Priorities. J Am Geriatr Soc. 2018 Aug;66(8):1608-1612. doi: 10.1111/jgs.15453.
  10. Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, Wighton MB, Hammel J, Doyle E, Nadeau S, McGilton KS. Patient engagement in research related to dementia: A scoping review. Dementia (London). 2018 Nov;17(8):944-975. doi: 10.1177/1471301218789292.

Check out our list of books, written by people with dementia (soon to be updated!).

Dementia Alliance International (DAI) DONATE OR PARTNER WITH DAI

Webinar: How to Build a Network that supports your Organizational Goals

You are invited to register to attend the DAI “Meeting Of The Minds” November webinar, with Alex D. Tremble.

How to Build a Network that supports your Organizational Goals

Speaker:  Alex D. Tremble

Please note, the login details will be sent to you 2 HOURS before the event starts.

DAY/DATE(S):

  • Wednesday, November 24, 2021 (USA/CA/UK/EU) – 3:00 pm CDT
  • Thursday, November 25, 2021 (AU/NZ/ASIA) – 7:30 am AEST
  • Reminder: this is one event, set in a number of different time zones – it is not being held twice. 

About the Webinar: This webinar is about how a strong network can mean the difference between being invisible and making a difference. Having a strong network can mean the difference between being offered your dream job and continuing to remain invisible when upward opportunities arise. So why don’t most people effectively leverage their network to advance in their careers? It’s because they believe that networking is too hard, not their style, not moral/ethical, or a host of other false beliefs. But, you don’t have to be like most people. During this workshop Alex D. Tremble will share his proven strategies to help you and other motivated leaders around the world:

  • Overcome your fear of networking,
  • Identify where and how to focus your networking efforts, and
  • Choose specific behaviors to implement that will lead you to enjoying a more influential network.

About our speaker:  Alex D. Tremble is an award-winning speaker, author, and leadership expert who has over 10 years of experience coaching and advising some of America’s most senior level government leaders. As the host of The Alex Tremble Show he also brings together successful executives from across the world to provide aspiring leaders with the strategies needed to gain influence and advance in their careers. Alex began his career managing three government-wide senior leadership development programs, and quickly went on to establish the Tremble Influence Academy, while publishing two bestselling books (“Reaching Senior Leadership” and “The GPS Guide to Success”) geared towards helping government leaders gain influence and attain career success.

Alex is a Leadership Center for Excellence 40 under 40 honoree and also serves as the Chief Culture Officer for America’s second largest national conservation corps, American Conservation Experience. Alex is passionate and committed to helping leaders reach their highest potential; personally, and professionally. Alex received his Bachelor’s degree in sociology and psychology from William Penn University and his Master’s degree in industrial and organizational psychology from the University of Baltimore. Please visit AlexTremble.com to gain the tools and strategies you need to reach your leadership and career goals.

Wednesday, 24 November 2021 (USA/CA/UK/EU)

  • 1:00 pm Pacific PDT
  • 2:00 pm Mountain, MDT
  • 3:00 pm Central, CDT
  • 4:00 pm Eastern, EDT
  • 9:00 pm UK, BST
  • 10:00 pm EU
  • 11:00 pm Johannesburg, SAST

Thursday, 25 November 2021 (AU/NZ/ASIA)

  • 5:00 am Singapore SGT/Perth AWST
  • 7:00 am Brisbane, AEST
  • 7:30 am Adelaide, ACDT
  • 8:00 am, Sydney/Melbourne, AEDT
  • 10:00 am Auckland, NZDT

The Webinar runs for up to 1.5 hours.

Please check here if your time is not listed above.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners of people with dementia: FREE
  • Researchers: FREE
  • Health Care Professionals: FREE
  • Others: FREE
  • DONATION: $30.00

WHILST WE HAVE MADE IT FREE FOR YOU TO ATTEND, PLEASE CONSIDER MAKING A DONATION TO SUPPORT THESE EVENTS AND SERVICES FOR OUR MEMBERS.

Support people with dementia

THANK YOU