Abstract submissions for the 35th ADI 2022 Conference close soon

ABSTRACT SUBMISSIONS CLOSE SOON

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

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

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

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

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

Check out the Program Overview here!

 

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

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

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

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Monthly Research Topic – Brain health

We are pleased to recommence a series of monthly blogs, focused on a research topic or theme, and wish to thank PhD candidate Laura Garcia Diaz for writing the first one, and our Brain Health is so important, with or without a diagnosis of dementia!

Many of you will  know DAI hosts a twice monthly Brian health meeting, which is open for anyone to attend, so please contact us if you’d like to join to the mailing list for notifications about these meetings. DAI also hosts a Brain Health group on Facebook, and has a Brain Health Hub on our website.

Let’s talk about brain health 
By Laura Diaz Garcia © 2021

Your brain never sleeps. It is constantly helping you do the things that are important to you. Whether that is making a meal, going on a walk with a friend, or reading a blog about brain health, your brain is always working behind the scenes. The brain does a lot of work for us!

That is why it is so important to think about brain health.

There is strong evidence that people can reduce their risk of cognitive decline by making key lifestyle changes(Livingston et al., 2020):

Be physically active

Exercise increases blood flow to your brain, nourishing your brain cells with nutrients and oxygen. Regular exercise is also good for your heart and can help reduce stress and improve your mood. In a recent study, researchers found that high levels (over 150minutes per week) of physical activity in mid-life is associated with better brain health in later life (Palta et al., 2021). Physical activity can take many forms including walking, dancing, gardening, and playing with children.

Be socially active

There is good evidence that staying connected with your friends, family and other community members is good for your brain health. When we are socializing we are constantly using our brain to help us understand what others are saying, expressing ourselves, laughing, and staying engaged in conversations. In a recent study, researchers found that individuals who reported greater levels of social engagement had more gray matter in the brain (Felix et al., 2021). Gray matter supports memory, emotions and movement control. Social engagement can take many forms including volunteering, attending a religious service and going out for dinner with a friend.

Be cognitively active

Challenge your brain! When we follow a routine, we start doing things without thinking much about them. Just as exercising can help improve your cardiovascular health and body strength, challenging your brain can help engage new or rarely-used mental pathways. Researchers have found that adults 65 years and older who read, play games, speak a second language, or play music have better cognition than those who do not (Chan et al., 2018; Lee et al., 2018). Challenging your brain means trying out something new, such as learning a new language or using your non-dominant hand to write notes, and doing it regularly. To help you do something challenging regularly, try finding a challenging activity that you enjoy.

Follow a healthy diet

The food that we eat is the fuel that our body, including our brain, uses to help us do the things that are important to us. That is why it is important to eat a nutritious, balanced diet. A healthy diet can support our overall health, including our brain health. Although no specific diet has been found to be the best for the brain, the impact of the MIND and Mediterranean diets on brain health are being studied with promising results (Hosking et al., 2018; Petersson & Philippou, 2016). These diets recommend regular consumption of vegetables, berries, nuts, whole grains, olive oil and legumes. It is also recommended to limit process foods, sweets, dairy and meat.

Some of the things mentioned in this blog, such as staying physically active, may have been harder to do during the COVID-19 lockdowns. The COVID-19 lockdowns illustrate how sometimes engaging in brain healthy activities may not be possible because of our environment.

Although at the personal level there are a lot of things that we can do to support our brain health, it is important to advocate for safe public spaces for physical activity, affordable nutritious food, and community programs that encourage social interaction. Educating ourselves about brain health is an important first step. Advocating for policies and environments that support healthy choices is also important to ensure that all community members have access to services and programs that will encourage and support healthy choices.

There is no evidence that there is a single thing that you can do that will benefit your brain health the most. However, the research shows that taking small steps to protect our brain health can make a difference, so find several things that you enjoy and try to stick to them!

Reading blogs such as thisis one way to remain cognitively active. What else will you be doing today to for your brain health? Is there anything that you could do to support the brain health of your friends and family?

Let’s keep the conversation going!

Laura

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References

Chan, D., Shafto, M., Kievit, R., Matthews, F., Spink, M., Valenzuela, M., & Henson, R. N. (2018). Lifestyle activities in mid-life contribute to cognitive reserve in late-life, independent of education, occupation, and late-life activities. Neurobiology of Aging, 70, 180–183. https://doi.org/10.1016/J.NEUROBIOLAGING.2018.06.012

Felix, C., Rosano, C., Zhu, X., Flatt, J. D., & Rosso, A. L. (2021). Greater Social Engagement and Greater Gray Matter Microstructural Integrity in Brain Regions Relevant to Dementia. The Journals of Gerontology: Series B, 76(6), 1027–1035. https://doi.org/10.1093/GERONB/GBAA173

Hosking, D. E., Eramudugolla, R., Cherbuin, N., & Anstey, K. J. (2018). MIND not Mediterranean diet related to 12-year incidence of cognitive impairment in an Australian longitudinal cohort study. Alzheimer’s & Dementia. https://doi.org/10.1016/j.jalz.2018.12.011

Lee, A. T. C., Richards, M., Chan, W. C., Chiu, H. F. K., Lee, R. S. Y., & Lam, L. C. W. (2018). Association of Daily Intellectual Activities With Lower Risk of Incident Dementia Among Older Chinese Adults. JAMA Psychiatry, 75(7), 697. https://doi.org/10.1001/JAMAPSYCHIATRY.2018.0657

Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Ogunniyi, A., … Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. In The Lancet (Vol. 396, Issue 10248, pp. 413–446). Lancet Publishing Group. https://doi.org/10.1016/S0140-6736(20)30367-6

Palta, P., Sharrett, A. R., Gabriel, K. P., Gottesman, R. F., Folsom, A. R., Power, M. C., Evenson, K. R., Jack, C. R., Knopman, D. S., Mosley, T. H., & Heiss, G. (2021). Prospective Analysis of Leisure-Time Physical Activity in Midlife and Beyond and Brain Damage on MRI in Older Adults. Neurology, 96(7), e964–e974. https://doi.org/10.1212/WNL.0000000000011375

Petersson, S. D., & Philippou, E. (2016). Mediterranean Diet, Cognitive Function, and Dementia: A Systematic Review of the Evidence. Advances in Nutrition, 7(5), 889–904. https://doi.org/10.3945/AN.116.012138

 

DAI Board Announces Resignation of CEO Kate Swaffer

The DAI Board Announces Resignation of CEO Kate Swaffer

It is with a mix of sadness and gratitude that the Board of Directors announces Ms. Kate Swaffer’s resignation as Chief Executive Officer of Dementia Alliance International, effective October 30, 2021.

Kate Swaffer is one of the eight co-founders of Dementia Alliance International (DAI), and our long serving former Chair, current CEO and board member of the organization. She has been instrumental in taking the membership from three to 49 countries.

In her years of dedicated service to the organizational mission of “Nothing about Us, Without Us”, DAI was granted consultative status with the Economic and Social Council (ECOSOC) of the  United Nations, and has worked closely with the World Health Organization, the NCD Alliance, The World Hospice and Palliative Care Alliance, the International Disability Alliance  where she secured Observer Membership for DAI, and she is still a board member of Alzheimer’s Disease International and has been a full member of the World Dementia Council, and worked with many other local, national and global organizations. 

Kate’s inspiring leadership and warm friendship have not only left a lasting impression on everyone within the organization as well as the new Board Members and the global dementia community, but a permanent legacy at Dementia Alliance International. 

Kate was eligible to serve on the DAI Board, as per the current DAI By Laws, until December 2021 but due to personal reasons, needed to step down sooner. Over the past 18 months, Kate has put in much effort not only to ensure the work she and the other 7 co-founders set out to do, continues, but more importantly, that the services and support DAI provides to and for our members and the dementia community will continue seamlessly. 

We are fortunate to have had this length of time for a transition period, and while we will miss her dynamic presence, enthusiasm, and leadership at the Board meetings, we wish her the best of health and to have more time for her other advocacy pursuits, and for herself and her family.

Kate commenced her advocacy work in 2009, and in 2010 was invited by the CEO of Alzheimer’s Australia, Glenn Rees (now Dementia Australia), to give a speech representing people with dementia, at the first Parliamentary Rally ever held in Australia. She also founded the Alzheimer’s Australia Dementia Advisory Committee in Australia, which held its first meeting in Canberra during World Alzheimer’s Month in September 2013. Kate was the inaugural Chair, and served her full term of four years, stepping back into the role for a few months until a new Chair and Vice Chair were found. 

Glenn Rees stepped down as the CEO of Alzheimer’s Australia to take on the Chair of Alzheimer’s Disease International (ADI) more than six years ago, so has therefore worked with Kate in two roles, first as the CEO of Dementia Australia, then as Chair of ADI.  Glenn said,

“I have had the privilege of working with Kate for over more than twelve years. In all that time she has single-mindedly pursued the rights of people with dementia without fear or favour. There are so many achievements – the leadership of the National Consumer Committee in Alzheimer’s Australia, the excellence of many presentations, the publications, the capacity to communicate via social media and presence on so many committees both governmental and in the NGO sector. But in the end, it is the values that drive an advocate that count and for integrity, generosity and commitment Kate has few peers – except those she herself would always generously acknowledge such as Richard Taylor. Climbing mountains has been Kate’s specialty and perhaps the pinnacle was addressing the Ministerial Conference on Dementia in 2015 – the human rights of people with dementia were put on the international agenda. The dementia movement in Australia and internationally have cause to be grateful to Kate.” 

DAI’s long serving volunteer, Sarah Yeates who is the Chief Executive Officer at the Caladenia Dementia Care, wrote,

Dear Kate, as someone who works in the field of dementia and has a passion for better outcomes for people living with dementia, I just wanted you to know what a difference you have made for me personally and for so many of my colleagues. Your willingness to call out injustice and apathy, not only locally but on the global stage pushes professionals like myself to do better, strive higher, and believe that there is always more to be done. You have taught me so much, and I continue to learn. Because of your work, my own has greater meaning, and hopefully is grounded in truly person-centred principles. On a personal level I thank you for your friendship over the many years we have worked together and promise that one day… we will have that glass of wine together!! Thank you for all you have taught me. All the very best to you and your family, and I look forward to continuing to work with you wherever I can be of assistance!! Lots of love, Sarah xx

In her own words, Kate said, 

“It is time for the new team to take the reins, and lead DAI into the direction its members want. I will always be happy to provide mentorship, and advice as requested to the board, and to members. The greatest professional work I have ever done, has been to support people diagnosed with any type of dementia, and I will continue to do this as a co-host of the DAI Peer to Peer support groups.

The fear and loneliness I experienced when first diagnosed, mostly due to the stigma and attitudes of others, was truly devastating, and the DAI peer to peer support groups helped, and continue to help our members get back to living more positively. No one person can do this work alone, and everything I have achieved, is because of the collaboration, hard work and support of the members and the current and past boards, and of so many others including DAI members. They all continue to inspire me.”

Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has. Margaret Mead

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10 Guiding Principles for movement training in degenerative neurological conditions

Get ready, get set, GO… Register now for the next DAI Webinar!

10 Guiding principles for movement training in degenerative neurological conditions

Speaker: Professor James McLoughlin, BAppSc(Physio),MSc(Clinical Neuroscience), PhD

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

DAY/DATE(S):

  • Wednesday, October 27, 2021 (USA/CA/UK/EU) – 4:00 pm CDT
  • Thursday, October 28, 2021 (AU/NZ/ASIA) – 8:00 am AEDT
  • Reminder: this is one event, set in a number of different time zones – it is not being held twice.

About the Webinar: Categorising the many active ingredients that can be included in a physical rehabilitation program remains a huge challenge for health professionals and researchers. The 10 guiding principles aim to provide a common language to help everyone – most of all the people engaged in rehabilitation! James will outline 10 important principles which should be considered when planning a rehabilitation program in those with degenerative neurological conditions.

About our speaker: James is director of Advanced Neuro Rehab in Adelaide South Australia where he works clinically as neurological physiotherapist. James is also part-time Associate Professor at Flinders University working as teaching specialist in Neurological Physiotherapy. James has an interest in movement recovery and rehabilitation with people with all neurological conditions, in addition to those with balance/dizziness.

Wednesday, 27 Oct 2021

  • 2:00 pm Pacific PDT
  • 3:00 pm Mountain, MDT
  • 3:00 pm Mountain, MDT
  • 4:00 pm Central, CDT
  • 5:00 pm Eastern, EDT
  • 10:00 pm UK, BST
  • 11:00 pm Johannesburg, SAST

Thursday, 28 Oct 2021

  • 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

Books by people with dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

Nothing about us without us

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

Celebrating talent courage and strength

Members of the DAI Peer to Peer Support group in Singapore meeting on World Alzheimer’s Day 2021

This video is part of a poetry project by members of the DAI Peer to Peer Support group in Singapore. They meet weekly, to share ideas and strategies to live more positilvely with dementia, and to work together on projects like this, to celebrate their talents, courage and strength. This project stemmed from a discussion th members had on their experiences of stigma and how much they want to be treated as normal people and they can still do many things.

The Hai Ou Project by the DAI P2P Support group in Singapore

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

With more than 55 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

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Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

View our Webinar “Living Life to the full”

Watch our recent webinar, the fist of four focused on rehabilitaiton for people with dementia,  Living Life to the full, by Associate Professor Michele Callisaya and Dr Morag Taylor.

Associate Professor Michele Callisaya and Dr Morag Taylor recently presented to our members and audience a webinar titled, “Rehabilitation to maintain physical function”. Along with thinking and memory, physical function is often compromised in people with dementia. Physical functions include balance, strength and the ability to walk well. Good physical function is important for maintaining everyday activities, whereas poor physical function increases the risk of falls. This presentation outlined the common physical disabilities found in people living with dementia, how thinking and memory influence the ability to walk safely, as well as evidence for treatments to maintain or improve physical function and prevent falls.

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The DAI New Membership Criteria

Dementia Alliance International (DAI) continues with our series of blogs and news as part of our Dementia Awareness Month activities, and today, we are pleased to announce our newly adopted membership criteria.

When DAI launched on 1 January 2014, our membership criteria explicitly stated that to qualify for membership, the applicant needed to have a medically confirmed diagnosis of any type of dementia, which excluded members with a diagnosis of Mild Cognitive Impairment (MCI).

As with all health conditions, research changes things such as the diagostic criteria for a condition, as well as the clinical practice guidelines. Over a period of more than five years, the board and membership has discussed changing this criteria, and after much consideration, and years of reviewing it with dementia experts, academics and clinicians, we have finally moved to update a By Laws in line with the latest in terms of a diagnosis of dementa, as well as to  increase inclusion.

Many experts had previously advised DAI that MCI does not always lead to dementia (some still say, as few as 20%), and hence this group did not meet the original DAI membership criteria. However, others had recommended DAI should have allowed their membership regardless of this, as no-one else is providing support for people in the diagnostic process or with MCI.  We always wanteded DAI to be of, by and for people with dmentia, and also to ensure that people without dementia were not able to take over, as had happened to other self-advocacy groups.

Our motto is still, “Nothing about us, without us”.

On September 14/15, 2021, the DAI board unanimously voted to change ARTICLE II – MEMBERSHIP Section 1 of our By Laws to the following:

ARTICLE II – MEMBERSHIP Section 1 of the DAI By Laws now says:  

Section 1 – Eligibility for membership: Request for membership shall be open to any person living with dementia that supports the Vision and Mission of the organization.

Membership of Dementia Alliance International is free and is open and exclusive to anyone with a medical diagnosis of any type of dementia – Mild or Major Neurodegenerative Disorder.

Membership is granted after the completion and receipt of the electronically submitted on-line request or a written membership request provided to an active member.

Membership may be denied or revoked at any time if it is determined that an individual presents potential risk to others in the organization or to the overall health and wellbeing of the organization itself and the people it serves.

This includes but is not limited to breaches of the member Code of Conduct, and physical and mental hazards such as violence, anxiety and relived trauma [this may include revoking or denying membership of registered sex offenders]. A majority vote of the Board is required for denial or revocation of membership.

Read or download the updated By Laws here.

Bobby Redman, who has recently resigned as a board member and as the Vice Chair of DAI for various reasons, including to take on a national role in another organisation, recently provided the DAI board with the following background and some context to assist us to make this decision.

Background to proposed review

Dementia, as a diagnosis is no longer recognised in the DSM-5, which is the diagnostic manual generally used in the USA, Australia, and New Zealand (the UK use the ICD-10). The official term is now Major or Mild Neurocognitive Disorder (ND) and is therefore a stages approach which would previously have been called early-stage dementia / late-stage dementia.

The term mild cognitive impairment (MCI) that is thrown around by doctors is not a diagnosis, but rather a symptom, think of it like pain, which is a symptom rather than a condition. People may experience some cognitive loss (mild cognitive impairment), but it is only as further deterioration occurs, that it meets criteria for mild or major ND.  

The problem is many people sit with a diagnosis of MCI for years, because too many doctors fail to recognise the difference between MCI and Mild ND, often using the term interchangeably.

If cognition continues to slip, and functioning is declining, it meets the criteria for MILD Neurocognitive Disorder, which then naturally progresses to Major ND over variable lengths of time. There is no Moderate ND and the only difference between Mild and Major ND is the severity of symptoms and the level of impact on independence in everyday activities, which as we all know should be on a sliding scale. We all experience good and bad days – some foggy, some a bit clearer; some days when we can complete activities better than other. Only a few of our DAI members would meet the criteria for Major ND, which would mean that we would be unable to function independently. Most of us whilst not meeting these criteria still require some support or strategies to be able to complete some everyday tasks; we would at this stage be diagnosed with Mild ND, with a specifier such as Alzheimer’s Disease; Frontotemporal lobar degeneration (FTD), due to multiple aetiologies (what we know as Mixed Dementia); Unspecified (what too many people sit with) etc.

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Read the DAI 2021 Global Report

NEWSFLASH: DAI GLOBAL REPORT 2021

Valuing the advocacy of people with dementia: moving dementia out of the shadows

DAI is pleased to launch a new 2021 Global Report on World Alzheimer’s Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.

“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research.  However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.

Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some  of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued.”

We have added the Table of Contents as a way of quickly highlighting what is inside our publication.

Table of Contents

About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
– Involvement as a right
– Involvement which leads to better outcomes
– Involvement which brings personal benefits
Examples of International Leadership in Involvement
– UK- DEEP
– Australia- Cognitive Decline Partnership Centre (CDPC)  
– Ireland- Irish Dementia Working Group
– Scottish Dementia Working Group
– United States- Early-Stage Advisory Group
– Japan- JapanDementia Working Group
– Ontario Dementia Advisory Group (ODAG)
– European Dementia Working Group
– Alzheimers New Zealand and Alzheimers NZ Advisory Group
– Dementia Advocacy Canada (DAC)
– Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
– Appendix 1: Additional resources and practical guides on involvement
References
Endorsements

Also available to download on our website publication page.

About the author:

Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development.  This paper was completed as independent work separate to her other roles.

Ellen is currently the CEO of Down Syndrome Australia and  is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer’s Australia).  She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.

Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer’s Australia when this committee was founded.

Suggested citation:

Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.

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