Tag Archives: DAI

Webinar: What People Living with Dementia Teach Us About Our Shared Humanity

We invite you to join us for our August 2020 “Meeting Of The Minds” Webinar”,  What People Living with Dementia Teach Us About Our Shared Humanity presented by Professor Emeritus Steven Sabat.

  • Wednesday, August 26, 2020 (USA/CA/UK/EU)
  • Thursday, August 27, 2020 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Register here…

About the Webinar: How we view and approach people with dementia in the process of providing care is critical to whether or not we see and facilitate many of their intact cognitive and social abilities.  Approaching people diagnosed mainly with their presenting symptoms in mind and viewing one’s job as performing particular physical care-oriented tasks will not facilitate the expression of such persons’ remaining abilities and will often prevent those abilities from surfacing.

“Engaging with” people diagnosed with genuine human interest in learning about the person’s past life and interests, proclivities, desires, creates an “I-Thou” connection that will have the opposite effect: their often substantial cognitive, social, and emotional abilities will be revealed.

Thus “dementia care” requires human interaction with someone who is much more than a “dementia patient”, but is viewed and honoured as a human being who deserves to be treated as a person, not just as a patient.  I shall discuss a host of valued attributes that are shared by people living with dementia and those deemed healthy so as to illustrate the commonalities we all share.

About Professor Sabat: Steven R. Sabat is Professor Emeritus of Psychology at Georgetown University. His research for the past 39 years has focused on the intact cognitive and social abilities and the subjective experience of people with moderate to severe dementia, as well as enhancing communication between people living with dementia and their care partnerrs. He is the author of numerous articles in scientific journals and in books.  As well, he is author of The Experience of Alzheimer’s Disease: Life through a Tangled Veil (2001), Alzheimer’s Disease and Dementia: What Everyone Needs to Know (2018) and co-editor of Dementia: Mind, Meaning, and the Person (2006)

Wednesday, August 26, 2020 (USA/CA/UK/EU):

  • 2:00 pm Pacific
  • 3:00 pm Mountain
  • 4:00 pm Central
  • 5:00 pm Eastern
  • 10:00 pm London/Glasgow/Dublin UK
  • 11:00 pm Paris, Munich, Amsterdam, EU

Thursday, August 27, 2020 (AU/NZ/ASIA):

  • 5:00 am Perth, AU/Taipei/Singapore
  • 6:30 am Adelaide, AU
  • 7:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 9:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time if not listed above with this link.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners of DAI Memers: FREE
  • Healthcare professionals: FREE (Donation to attend appreciated)
  • Researchers: FREE (Donation to attend appreciated)
  • General public: FREE (Donation to attend appreciated)

Register here…

 

YOUR DONATIONS SUPPORT US IN MANY WAYS:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 200.00 covers the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

Support people with dementia:

THANK YOU

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You can view videos of previous DAI “A Meeting of the Minds” Webinars on the You can view videos of previous DAI “A Meeting of the Minds” Webinars on the DAI YouTube Channel

Please note: Whilst we usually publish the recording of the event on YouTube afterwards, it does not include the Q & A sessions, and occasionally, we do not publicly publish recordings of your online Webinars at all, so if you don’t register to attend, you may miss seeing our events.

GLAD Call TO Action: A Call To Rebuild a Future Inclusive of All

Dementia Alliance International signed on this week to the GLAD Network (the Global Action on Disability) Call To Action: A Call To Rebuild a Future Inclusive of All.

We are one of many organisations supporting this important Call to Action to all stakeholders to include persons with all types of disabilities in the response and recovery phases of the Covid-19.

The letter below confirms our endorsement of this important Call To Action, and includes links to the Call To Action and other information. Please also note, the Call to Action is still open for endorsement by all stakeholders and GLAD would welcome endorsement by additional partners using this form.

Dear Kate,

The co-chairs of the Global Action on Disability (GLAD) Network – the United Kingdom Department for International Development, the Norwegian Ministry of Foreign Affairs, and the International Disability Alliance – would like to extend our sincere gratitude for endorsing the Call to Rebuild a Future Inclusive of All. The Call to Action demands the inclusion of persons with disabilities in the response and recovery phases of the COVID-19.

Please be informed that your organization’s logo has been included  in the official Call to Action document, which can be accessed here.

The Call to Action is still open for endorsement by all stakeholders and we would welcome endorsement by additional partners. To invite your partners, please feel free to share with them this page where more information on the Call to Action and its endorsement can be found.

If you have any questions, please do not hesitate to contact us.

Thank you very much.

Sincerely,

Penny Innes, Head, Disability Inclusion Team
United Kingdom Department for International Development

Jon Lomøy, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance

HLPF Statement to WHO: WHO Civil Society Working Group on NCDs

The 36 members of the WHO Civil Society Working Group on NCDs (Non Communicable Diseases) commend the World Health Organization and Dr Tedros for his leadership as the world grapples with the coronavirus (COVID-19) pandemic. An empowered, well-resourced WHO is essential to lead governments, other stakeholders, and people through these trying times.

HLPF Statement to Member States
WHO Civil Society Working Group on NCDs

Published 12 July 2020
Author: WHO Civil Society Working Group on NCD’s
Download document or read the full statement here:

The COVID-19 pandemic has exposed health system gaps and vulnerabilities across the world and has demonstrated more than ever the need for resilient health systems, especially ones that are equipped to respond to the growing burden of non-communicable diseases (NCDs) and mental disorders.

As budgets are reallocated and ministry of health staff are reassigned to respond to the crisis, attention to NCDs and other chronic conditions (including prevention, treatment, rehabilitation and palliative care) has largely fallen off the radar – in particular for hypertension and cardiovascular emergencies, cancer, diabetes, respiratory diseases, obesity, mental disorders and neurological health conditions including dementia.

Due to the COVID-19 outbreak, people of all ages, who are living with NCDs, are more vulnerable to becoming severely ill and/or dying from COVID-19 or from a lack of health care service delivery for their untreated NCDs. It is therefore crucial that we “build back better” health systems and minimize disruptions to lifesaving prevention, diagnosis and care for those living with NCDs.

We call on Member States to:

  • Ensure NCDs prevention, diagnosis, treatment and palliative care are included in national emergency response and preparedness plans, beginning with inclusion of NCDs in national COVID-19 response plans in the context of universal health coverage and sustainable development.
  • Acknowledge the interconnections between global health security, COVID-19 complications and chronic conditions like NCDs and address these by developing, and scaling-up the implementation of robust national NCD action plans to protect and strengthen population health. These should prioritize the WHO ‘Best Buys and other recommended interventions’ and other relevant conventions and plans such as the Framework Convention on Tobacco Control, WHO Global Action Plan on Physical Activity, the WHO Global Strategy to Reduce the Harmful Use of Alcohol, the WHO Global Action Plan on the public health response to dementia, the WHO Mental Health Action Plan and forthcoming recommendations to address mental health conditions and air pollution.
  • Strengthen national resilience to build back better by ensuring support for dedicated health promotion and prevention institutions, ensuring that COVID-19 policy responses do not inadvertently increase exposure to key NCD risk factors and the burden of NCDs in the long-term,  and strengthening workforce competency in health promotion and NCD prevention and control.
  • Allocate sufficient and sustainable financing to enable health promotion and NCD prevention and control programmes and policies to be fully implemented to scale.
  • Raise tobacco taxes and implement taxes on other unhealthy commodities like alcohol and ultra-processed foods and sugar-sweetened beverages to simultaneously improve the health of the populace, reduce health inequities, and lessen the burden on health systems. These taxes can also raise much-needed revenue to help finance health, socio-economic, development and/or pandemic response efforts.
  • Continue and sustain the delivery of routine chronic care, supplies of essential medicines, vaccines and technologies, screening and diagnosis, access to resources, and supportive and palliative services for ongoing management of NCDs, mental health, and other chronic conditions.
  • Develop guidelines at national and global levels specifically for People Living with NCDs to successfully manage their conditions during the COVID-19 pandemic. Adopt innovative approaches, including digital health solutions, to enhance efficiency within health systems.
  • Ensure healthcare workers are recruited, trained, protected, and well-resourced to meet the current and future demand for chronic care and the COVID-19 pandemic and that healthcare research is properly funded, to support the development of innovative, evidence-based approaches to NCDs prevention and treatment in the setting of COVID-19 pandemic. Special attention is also needed to ensure the mental health and well-being of healthcare workers is supported and action is taken to prevent and control violence against health workers.
  • Systematically and meaningfully engage civil society groups and vulnerable groups (including people living with NCDs and other comorbidities, older people, and young people) in the development, implementation, monitoring and evaluation of international, national, and local COVID-19 responses.
  • Adopt a whole-of-government approach to COVID-19 to ensure the adoption of robust, evidence-based policies and plans, which do not expose governments to real or perceived conflicts of interest (such as through corporate social responsibility activities by unhealthy commodity industries) and which ensure access to safe, affordable and equitable access to essential health products (such as PPE, essential medicines including controlled medicines for palliative care) as part of a global response.

The WHO Civil Society Working Group on NCDs and the NCD community remains committed to elevating the voices of civil society and people living with NCDs and supporting WHO and governments during this pandemic and in the post-pandemic recovery period.

Members of the WHO Civil Society Working Group on NCDs

  1. Dr Monika Arora, Healthy India Alliance, India
  2. Ms Kwanele Asante, Our Views, Our Voices global advisory committee, South Africa
  3. Prof Naby Baldé, International Diabetes Federation, Guinea
  4. Mr Stephane Besançon, Santé Diabète, France
  5. Mr Enzo Bondioni, World Dental Federation, Switzerland
  6. Ms Chantelle Booysen, Youth Leaders for the Lancet Commission on Global Mental Health and Sustainable Development, South Africa
  7. Dr Beatriz Champagne, Healthy Latin America Coalition, Argentina
  8. Dr Stephen Connor, World Palliative Care Alliance, USA
  9. Ms Katie Dain, CEO, NCD Alliance (Co-Chair)
  10. Dr Mitra Rouhi Dehkordi, The Association for International Sports for All, Iran
  11. Dr Ulysses Dorotheo, South East Asia Tobacco Control Alliance, Philippines
  12. Dr Ibtihal Fadhil, EMRO NCD Alliance, Iraq
  13. Dr Mychelle Farmer, NCD Child, USA
  14. Mr Juan Núñez Guadarrama, Salud Justa, Mexico
  15. Sir Trevor Hassell, Healthy Caribbean Coalition, Barbados
  16. Mr David Kalema, Hope and Beyond, Uganda
  17. Mr Chris Lynch, Alzheimer’s Disease International, United Kingdom
  18. Princess Dina Mired, Union for International Cancer Control, Jordan
  19. Dr Mwai Makoka, World Council of Churches, Malawi
  20. Ms Narcisa Mashienta, Ikiama Nukuri, Ecuador
  21. Dr George Msengi, NCD Child, Tanzania
  22. Mr Christophe Ngendahayo, International Federation of Medical Students Associations, Rwanda
  23. Ms Leslie Rae, Framework Convention Alliance, Canada
  24. Ms Johanna Ralston, World Obesity Federation, USA
  25. Ms Belen Ríos, O´Neill Institute for National and Global Health Law, Georgetown University, USA
  26. Prof Trevor Shilton, International Union for Health Promotion and Education, and International Society for Physical Activity and Health, Australia
  27. Dr Sudhvir Singh, EAT Foundation, Norway
  28. Dr Tara Singh Bam, International Union Against Tuberculosis and Lung Disease, Nepal
  29. Ms Anjali Singla, Movement for Global Mental Health, India
  30. Ms Kristina Sperkova, Movendi International, Slovakia
  31. Ms Charlene Sunkel, Global Mental Health Peer Network, South Africa
  32. Ms Kate Swaffer, Dementia Alliance International, Australia
  33. Ms Phaeba Thomas, HealthBridge South Asia, India
  34. Dr Nick Watts, Lancet Countdown on Health and Climate Change, United Kingdom
  35. Prof Gerald Yonga, East Africa NCD Alliance, Kenya
  36. Dr Yoshitake Yokokura, World Medical Association, Japan

A new Quality of Life measure

ARC Linkage Project – A good life: developing a new quality of life instrument with older Australians for economic evaluation in aged care.

This project sought to develop a suite of quality of life measures or quality of life scale for older personsthat can be used for quality assessment and economic evaluation in aged care across community and residential aged care settings.

In order to be used for economic evaluation, the measures must be preference-based. That means the identified quality of life domains will be weighted according to the importance of those domains to older people.

Unlike other quality of life measures, these measures were developed from their inception with older people.

The project has sought to be inclusive in recruitment, including people with cognitive impairment and dementia if they are able to provide informed consent to participate. Initial eligibility was determined by providers and final eligibility by the research team. Participants were not required to undertake any cognitive testing as part of eligibility determination or for data collection.

In late 2019 the project launched its website which will be updated throughout the project: https://www.qol-acc.org/

Chief Investigator organizations: Flinders University, University of Sydney, Australia National University and Dementia Alliance International, and our Chair Kate Swaffer who is based in Adelaide, has been actively invovled in the project.

Back by popular demand: Montessori Principles to Improve Engagement

Presenters: Dr Cameron Camp & Gary Johnson

This DAI Webinar is back by popular demand, following the recent and very successful April Webinar. It is one event, set in a number of different time zones, and may not be available viewing after the live session.

DAY/DATE(S):

  • Tuesday, May 12, 2020 (USA/CA/UK/EU)
  • Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN)

Register here…

About the Webinar: This DAI “Meeting Of The Minds” Webinar is a repeat of the session we held on 29/30 April. It is a live event, not the recording of the first session, and both presenters will delve more deeply into the topic, and there will be time for Q&A.

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.

Tuesday, May 12, 2020 (USA/CA/UK/EU):
  • 11:00 am Honolulu
  • 2:00 pm Pacific
  • 3:00 pm Mountain
  • 4:00 pm Central
  • 5:00 pm Eastern
  • 10:00 pm London/Glasgow/Dublin UK
  • 11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN/CHN):
  • 6:30 am Adelaide AU
  • 7:00 am Sydney/Melbourne/Canberra/Tas/Brisbane, AU AU
  • 5:00 am Perth AU/Taipei//Beijing
  • 9:00 am Auckland, NZ

The Webinar runs for 1.5 hours.  
Check your time if not listed above with this link.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners: FREE
  • HEALTH CARE PROFESSIONALS: FREE
  • DONATION TO ATTEND: $50.00 USD

Register here…

DONATIONS APPRECIATED

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE MEMBER OR STRATEGIC PARTNER.  

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

Support people with dementia: Donate to DAI
Become a DAI Associate or Strategic Partner today
Volunteer for DAI

WITHOUT YOUR SUPPORT, DAI CANNOT PROVIDE THE FREE SERVICES CURRENTLY PROVIDED FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

#Hello, my name is Tomofumi Tanno

Tomofumi Tanno says hello, all the way from Japan, but via a presentation he made in ADI Chicago last year!

Tomo is a remarkable dementia advocate living in Japan, and last year, with the support of Kumiko Magome, who translated for him on this occasion, Tomo talked about what it has been like, being diagnosed with younger onset dementia at the age of 39.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Emily Ong

Wow, it is already Day 9 of Dementia Awareness Month / World Alzheimer’s Month #WAM2019!

Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!

Today,  we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore.  Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia  find that by sharing with others, they find strength, and give others hope.

Image source: Emily Ong

Hello, my name is Emily Ong

June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.

I tried so hard to recall but NOTHING was retrieved.

It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.

By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.

Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!

I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?

At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.

It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.

Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).

I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.

Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.

My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.

Emily Ong  © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Juanita Hughes

On day 4 of World Alzheimer’s Month, #DAI member Juanita Hughes, from Brisbane says #Hello.

These stories highlight the many different experiences people have in terms of getting a  diagnosis, and how they choose to live with and respond to what is a very difficult diagnosis to be given.  Thank you Juanita for sharing your story.

I am 54 and I have young onset early stage behavioural variant frontotemporal dementia (bvFTD)

Image source: Juanita Hughes

I have a strong family history of what we now know is bvFTD. My grandfather was quite some time along the dementia track, and he was misdiagnosed as having Alzheimer’s, even though, in retrospect, he had shown classic symptoms of bvFTD.

An older brother also had the same condition and we believe their father also had dementia, and may be others in his heritage.

My father has lost his sister and two younger brothers, and has another younger brother undergoing testing for this condition. After dad’s younger brother died his daughter a nurse started serious research into the condition and discovered the research group Frontier, located then at the University of New South Wales research group – Neura, which specialised in frontotemporal dementia research.

They were keen to have my father joined them as a research participant in their main research project and threw them he was diagnosed as having bvFTD and the genetic mutation involved was discovered – C9orf72. My sister and I indicated that when they started research that was applicable to us we were willing to join.

I have a background in science research, so once this was discovered I read all the scientific literature that about this condition and this mutation that I could put my hands on. This included the current diagnostic criteria for bvFTD. As soon as possible I had myself tested for the mutation and received a positive result – I had the mutation too.

This had been two years since my dad’s initial diagnosis due to delays within the free State Government sponsored testing system. The genetic counsellor told me that she could not tell me much about my prognosis except that it was not case of if but when I would get the disease. This result didn’t actually surprise me as I was already aware of minor changes consistent with the diagnostic criteria.

Within a few months of my genetic result, I had convinced my GP to refer me to a neurologist for testing. My initial neurologist was convinced that I probably had dementia, but he specialised in movement disorders rather than dementia so he referred me onto his colleague who runs a clinic in atypical dementias.

So about seven months after the genetic diagnosis I received a diagnosis of dementia – definite bvFTD with the early signs and known genetic mutation leading to bvFTD. The neurologist told me that I was extremely early in the dementia journey, and that he had never diagnosed anybody this early. Then wanted to put me onto pharmaceutical interventions which I adamantly refused.

A few months before getting my genetic diagnosis, Frontier in was able to obtain funding to run a longitudinal study to endeavour to identify early changes in biomarkers/scan data for Dominantly Inherited Non-Alzheimer’s Dementias – DINAD. My sister and I and my cousin all became participants in this research. The genetic counsellor of this research was pleasantly surprised at my knowledge of the disease and suggested I become a genetic counsellor myself. So this year I have commenced studying Master of Diagnostic Genomics, with a plan to continue into a PhD program.

Once I had my diagnosis I was no longer eligible for the DINAD program, and volunteered to join the same research program that my father was in. I went into my first assessment with this program only to find that not only had they placed me in the research program I thought I was joining, but many other researchers wanted me to join their projects as well – so many that I lost count. Because I am so much earlier in my dementia journey than the standard research participant I can give a different perspective to the research so they are all keen to have me participate.

I would like to repeat here part of posts (edited) I put on the Facebook page – Living Healthy with Early Onset Dementia – on August 22nd.

Saying this may sound crazy, but I’m grateful for the genetic mutation underlying my dementia … I have heard too many stories of the difficulty people have in getting an accurate diagnosis or any diagnosis at all, and my heart goes out to you all.

I am glad that I have this diagnosis while I am still able to describe what it feels like to be on this side of dementia as researchers characteristically state that people with bvFTD lose the capacity to assess their own changes early in the disease process. I can see this with my dad who is in late mid stages of the same disease. He variously denies any problems or says he’s getting better, whereas my mum and I can see his degeneration.

The downside of this is that researchers don’t bother to ask people with a lived experience and just rely on carers and clinicians observations to describe the characteristic diagnostic conditions. I am in the unique position to describe this lived experience, as most people with this dementia are diagnosed too late, or haven’t read the scientific literature to know what erroneous conclusions to challenge.

…Within a few days of my diagnosis I had applied to join Dementia Alliance International and attended my first support meeting within two weeks of the diagnosis. I have now joined their action team. I have become an advocate with Dementia Australia and applied to join the Dementia Australia Advisory Committee.

When I joined as an advocate with Dementia Australia, I agreed to become part of a focus group. The Australian Commission on Safety and Quality in Health Care asked Dementia Australia to assist with rewriting a Cognitive Impairment Fact Sheet to be used in healthcare settings. I volunteered to help in a focus group in my hometown but before that happened I had to come down to Sydney and was invited to join the Sydney group.

As a result of participating in this project I’ve been asked and agreed to three more. The next week I talked with a researcher from a group that has been commissioned to do research on behalf of the Royal Commission into Aged Care Quality and Safety. Late in August I agreed to be filmed as part of a video to be released Dementia Australia Action week.

In a few days’ time I will be involved as a panel member representing those with a lived experience of dementia in the Decoding Dementia Mentoring Workshop which is assessing new technological innovations to help people living with dementia. In October, I will be speaking publicly about dementia for the first time. Dementia Awareness and Advocacy Team is a group that I joined in my local city, and I am speaking at their annual one-day forum.

These posts well describe my feelings and emphasises my motto:

Dementia Is a Journey – Not a Destination.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

The Global Voices of Dementia: Resources for self-advocacy

July 16, 2019

The global voices of dementia self-advocacy

Dementia Alliance International (DAI), the Alzheimer’s Society UK,  and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.

The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.

Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.  

As part of the project two resources were created:

Christine Thelker’s story

The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.

 After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.

Hilary Doxford’s story

Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.

I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.

5 Top Tips from self-advocates

 “Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia

“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada

“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA

“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.

“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.

For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:

The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are  people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.

With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.

By working together, the impact of self advocacy makes a much bigger difference.

Global self-advocates who feature in the film and supported the project (Left to Right): Amy Su, Dennis Frost, Kate Swaffer, Kris, Christine Thelker, Agnes Houston, Hilary Doxford, Petri Lampanen and Veda Meneghetti.

 

 

 

DAI Statement by Christine Thelker #COSP12

Christine Thelker

DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.

Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health

Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.

Prepared Civil Society Statement:

Distinguished Chairs, speakers and delegates

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.

As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.

The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.

As one of the 50 million people with dementia, I am being left behind.

Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.

I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.

Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.

As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.

The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.

Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.

It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.

This is our fundamental right.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.

Thank you.

Christine Thelker

Board Member
Dementia Alliance International