All posts by DementiaAlliance

Remembering the DAI online WRAD 2019 event

In March 2019, DAI hosted an online World Rocks Against Dementia (WRAD) event, with a number of recorded and live performances. We are delighted all performers provided consent for us to publish it here, and thank them for their incredible support. Please note, all performers of our WRAD events retain full copyright.

Special thanks to Graeme Atkins and Dr Al Power:

  1. DAI member Graeme Atkins contnues to write songs specifically for, and about DAI, in spite of the additional health issues faced this year.  We thank him for his incredible support.

2.  DAI supporter, Al Power wrote and performed his song for WRAD19 specifically for our event, and we thank him for his ongoing generous support, and look forward to his presentation at our monthly “Meeting Of The Minds” Webinar, Beyond BPSD, later this month. Register now.

Please consider donating or partnering with DAI… by doing so, YOU will make a difference.

Thank you.

Our next “Meeting Of The Minds” Webinar: Beyond BPSD

Join us for our next DAI “Meeting Of The Minds” Webinar, with Dr Allen Power on looking Beyond BPSD (Behavioural and Psychological Symptoms of Dementia).

 

 

 

 

 

 

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


About the Webinar: In this session, Al will frame his overall view and approach to dementia and explain how the framework of ‘Behavioural and Psychological Symptoms of Dementia’ is inadequate to meet the needs of people living with the diagnosis, and actually leads to use of potentially harmful medications. Al will show how an approach focused on various aspects of well-being provides insights into root causes of distress and provides a pathway to more sustainable, drug-free approaches. Al will share stories from his experience that support the approach and also some significant data of its success in a state-wide initiative in the US.

About Al: Dr. Allen Power is an internist, geriatrician, and Schlegel Chair in Ageing and Dementia Innovation at the Schlegel—University of Waterloo Research Institute for Ageing in Ontario, Canada. He is also clinical associate professor of medicine at the University of Rochester, NY, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities.

Dr. Power’s book, Dementia beyond Drugs: Changing the Culture of Care was named a 2010 Book of the Year by the American Journal of Nursing. His second book, Dementia Beyond Disease: Enhancing Well-Being was released by Health Professions Press in June 2014 and the second edition of Dementia Beyond Drugs was released in 2017. Dr. Power also has a 20-year history working in culture change in aged care. He led St. John’s Home in Rochester, New York to become the world’s largest Eden Alternative member home, and also helped develop St. John’s Penfield Green House homes—the only community-integrated Green House homes in the US.

Wednesday, November 27, 2019 (USA/CA/UK/EU):

  • 10:30 am Honolulu
  • 12:30 pm Pacific
  • 1:30 pm Mountain
  • 2:30 pm Central
  • 3:30 pm Eastern
  • 8:30 pm London/Glasgow/Dublin UK
  • 9:30 pm Paris, Munich, Amsterdam, EU

Thursday, November 28, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 6:30 am Brisbane, AU
  • 7:00 am Adelaide AU
  • 7:30 am Sydney/Melbourne/Canberra/Tasmania AU
  • 4:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

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

Register now…


COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

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

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $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

THANK YOU

Breaking News, via ADI

Biogen and Eisai announce plans to file for market approval of Alzheimer’s drug.

Published 22 October 2019 by Alzheimer’s Disease International.

Biogen and Eisai today announced that they will file for market approval for the drug aducanumab, an investigational treatment for early Alzheimer’s disease, following new analysis showing reduced clinical decline in people with early Alzheimer’s disease.

The Phase 3 clinical studies ENGAGE and EMERGE were discontinued in March 2019 following futility analysis by an independent monitoring committee that indicated the trials were unlikely to succeed.

Following the discontinuation of EMERGE and ENGAGE, additional data from these studies became available. After reviewing this larger dataset from the Phase 3 EMERGE Study in close consultation with the U.S. Food and Drug Administration (FDA), Biogen found that aducanumab resulted in significant benefits to patients. These improvements related to cognition and function including memory, orientation, and language, as well as improving daily activities like conducting personal finances, performing household chores, and independently traveling out of the home.

The discrepancy between the earlier futility analysis of the drug and the new analysis of the larger dataset is largely due to patients’ greater exposure to high dose aducanumab.

Alzheimer’s disease is the most common form of dementia, the collective term for a range of degenerative neurological conditions that affect memory, thinking, behaviour and emotion. There is no cure for dementia and has been no new treatment for the symptoms of dementia since 2002.

If approved, aducanumab would become the first therapy to reduce the clinical decline of Alzheimer’s disease and would also be the first therapy to demonstrate that removing amyloid beta resulted in better clinical outcomes.

Paola Barbarino, Chief Executive Officer of ADI, said: “This amazing therapeutic breakthrough from Biogen is like a ray of sunshine, the first we have had for a long, long time. I cannot overemphasise the importance of this announcement today as it will give also renewed impetus to markets for the discovery of more pharmaceutical treatments. I want to stress to all those living with dementia now that aducanumab is not yet available and further tests need to be made but it is the light at the end of the tunnel we have been hoping for so long!”

Samantha Budd Haeberlein, Vice President, Late-Stage Clinical Development at Biogen, said: “We believe that these positive results for aducanumab represent a turning point for patients, caregivers, physicians, and scientists in the fight against Alzheimer’s disease. We look forward to working with the FDA and regulators around the world to find a path to make the drug available to patients. Most importantly, we envisage a future where physicians may finally have an option to offer patients to help reduce clinical decline in Alzheimer’s disease.”

Kate Swaffer, Chair, CEO and Co-Founder of Dementia Alliance International (DAI), said:

“It is with both excitement, but also some apprehension that people diagnosed with dementia receive this news. For too long the focus was only on a cure, and we have also had many failed trials. To know we may be close to a disease modifying drug, as we have for so many other chronic conditions such as diabetes, increases hope for us all.”

We are assured that Biogen will work to gain market approval for aducanumab as soon as possible, working closely with regulatory authorities, institutional review boards and principal investigators. They plan to have submit their Biologics License Application to the FDA by early 2020 and will continue dialogue with regulatory authorities in international markets.

The clinical trial for this drug is not open to new patients at present, but Biogen aims to offer aducanumab to eligible patients previously enrolled in clinical studies. ADI will continue to work closely with Biogen and Eisai, and to advocate for improvements in detection and diagnosis, availability of specialists and access to healthcare centers, to support the eventual roll-out of aducanumab.

More information on this ground-breaking new drug will be available at the 34th International Conference of ADI in Singapore in March 2020.

To answer any questions you might have, Biogen have created a website with information for patients and caregivers, previously enrolled trial participants, principal investigators and key medical experts in the U.S. at https://biogenalzheimers.com.

To find out more, read Biogen’s press release.

Where in the world is DAI?

DAI Membership Map

Where in the world is DAI?

Well, almost everywhere. We have members in 49 different, and a great many are very busy locally, nationally and internationally.

DAI members attend meetings and events at the United Nations in New York and Geneva,  the World Health Organisation in Geneva, and meetings or specific advocacy events in Lausanne, Washington, Sydney, Canberra, London, and quite literally, cities and towns all over the world. There are simply too many to list!

The voices of all people impacted by dementia matter, and our advocacy,  and for some, activism is important and is increasing, both in terms of the numbers of people with dementia and/or their families becoming involved, and the ‘volume’ of our voices.

We are being heard, but little has changed:

  1. People with dementia are still being advised to ‘get their end of life affairs in order’, and offered little if any support to live positively and independently, for as long as possible.
  2. The style of language being used in all forms of the media remains persistently negative, disabling and disrespectful; there has been little change in terms of language in the clinical and academic sectors either.
  3. Researchers and health care professionals still do not manage dementia as a condition causing cognitive and other disabilites, many even insisting on th medical model of post diagnostic care. This is in spite of the fact that the World Health Organisation Factsheets on Dementia have stated for some years now  that “Dementia is a major cause of disability and dependnce in older persons.” 
  4. People with dementia are still not provided with disability assessment or support soon after diagnosis.
  5. Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
  6. People with dementia continue to be physically and chemical restrained in nursing homes.  The 2018 Human Rights Watch report on this in the USA is deeply distressing.
  7. Neglect and abuse within nursing homes, and also in the community is still high.
  8. Elder abuse is still especially present.
  9. When talking to people more recently diagnosed with dementia, it is clear the Dementia Friendly initiatives have done little to change what happens for them at the time of diagnosis, or after. In the broader context of civil society including health care professionals, they have rarely changed attitudes, and have barely, if at all, decreased the stigma or discrimination still being experienced.

Attitudes to dementia have not changed

In the recent  ADI World Alzheimer’s Report on Attitudes to dementia, some of the key findings of the report include:

  1. Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia.
  2. 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
  3. Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.
  4. Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
  5. 40% of the general public think doctors and nurses ignore people with dementia.

These findings, in particular number 4, are deeply disturbing, and are likely a further indication of the lack of tangible impact of advocacy.

So,  if dementia advocates keep doing what has always done, and keep getting the same results, unless WE change, nothing will change. As a prominent care partner Jayne Roberts said last year, “Everything has changed, and nothing has changed.

As advocates, we need to re-asses our plan(s) of action.

Perhaps one of the key factors in why very litttle has changed, epecially for newly diagosed peopel with dementia, may be that we should ALL be working together more collaborativley, with each other, both individually and between organisations.

The challenge with that of course, is that many organisations and many individuals have differing agendas, or are more  concerned about funding. Of course, funding for all organisations is very necessary, but it is not yet adequately helping people diagnosed with dementia, or our families.

It is definitely time to do something different; just what that is yet, from the perspective of DAI, is still under review.  

October Webinar: Assistance Dogs for Dementia

 

 

 

Please join us for DAI’s “Meeting Of The Minds” Webinar, on October 23/24 2019: Assistance Dogs for Dementia.

Presenters:  Professor Kevin McVilly and Phil Hazel


  • Wednesday, Octoer 23, 2019 (USA/CA/UK/EU)
  • Thursday, October 246, 2019 (AU/NZ/JP/SGP/TWN)

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

Registere here…

About the Webinar:

Kevin McVilly: Assistance Dogs for people with Young Onset Dementia; 3-year study –  This project documented the experience of 14 people with Young Onset Dementia and their families, over a 3-year period, of having a trained assistance dog.  The project was conducted as a partnership between Vision Australia (which trained the dogs), Dementia Australia (which supported the participants), and the University of Melbourne. We found: (1) people reported being more confident to stay at home on their own, or to go out for short walks on their own and family members felt confident to support this new found independence; (2) people engaged in exercise and physical activity, through games, walks and excursions that they might not have otherwise done prior to having the dog; (3) people reported regaining a sense of responsibility, purpose, and pride through the need to look after the daily needs of their dog; (4) people reported that the care of their dog provided opportunities to focus on issues ‘outside of themselves’, and their health; and (5) people developed new friendships and involvement in activities with others who had a dementia assistance dog, with the dog emerging as a common (non-clinically related) interest not previously available to them.
Phil Hazell: Living with Sarah: the value of assistance dogs for people with dementia; Phil will share his story of being diagnosed with younger onset dementia, and the value of having an assistance dog. His presentation will consider the benefits such as increased Self Esteem, Purpose in Life, Independence, Freedom and importantly, increased quality of life and well-being. Phil discusses some of the cha;lenges, or what he calls a ‘reality check for those considering an assistance dog, and the joys. Sarah also assists with increased organisational skills, more independence from family, friends, work place, self pride, happiness  and reduced personal and family stress. Phil’s assistance dog Sarah actively assists with tasks including:

1.Finding articles around the house such as keys, wallets, phones, TV remotes…
2.Keeps you calm in Public Transport such as Taxis, Trains, Ferry’s, Commercial flights….
3.Take you home when lost (Short Distance)
4.Identifiying you as some one that may need help
About Kevin: Keith R. McVilly is a Psychologist and the Foundation Professorial Fellow for Disability & Inclusion, in the School of Social & Political Sciences at the University of Melbourne. His work addresses the translation of research into policy and practice, with a focus on promoting the well-being and community inclusion of people with multiple and complex disabling experiences. His work reflects the centrality of relationships to well-being. Much of Keith’s research is conducted in applied settings, working directly with people with disability, families and services providers. Keith has worked as a direct support worker, a clinician and service manager, in public health services and in private practice. In Australia, Keith has previously worked as a researcher at the University of Sydney, RMIT University, and at Deakin University.  In the UK he worked at the University of Wales’ Welsh Centre for Learning Disabilities, and in the USA at the University of Minnesota’s Research Centre on Community Living.  In his spare time, Keith is a Registered Apiarist, with four bee hives in the back yard. He also keeps chickens and enjoys spending time in his greenhouse!
About Phil: Phil is a busy and enthusiastic Advocate for Dementia Australia and one of the first to be partnered with an Assistance Dog. Phil is Chair of the Dementia Australia Advisory Committee and participates in research projects. He has spoken at numerous forums and events and has actively represented people with dementia in media interviews, focus groups, program development and research projects. Phil has travelled extensively presenting at Low Vision Conferences in Japan, New Zealand, United States and Thailand. His major subject was Electronic Magnification for those living with Macular Degeneration.

Wednesday, October 23, 2019 (USA/CA/UK/EU):

  • 10:30 am  Honolulu
  • 1:30 pm    Pacific
  • 2:30 pm    Mountain
  • 3:30 pm    Central
  • 4:30 pm    Eastern
  • 9:30 pm  London/Glasgow/Dublin UK
  • 10:30 pm  Paris, Munich, Amsterdam, EU

Thursday, October 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 6:30 am    Brisbane, AU
  • 7:00 am    Adelaide AU
  • 7:30 am    Sydney/Melbourne/Canberra/Tasmania AU
  • 5:00 am    Perth AU/Taipei//Beijing
  • 9:30 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/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

Register here…


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

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

2019 Richard Taylor Advocates Award goes to James McKillop

James McKillop receiving the Richard Taylor Advocates Award at our online Cafe Le Brain

It is with great pleasure that we award James McKillop MBE from Glasgow, Scotland the 2019 Richard Taylor Memorial Advocates Award.

Although we made this announcement personally to James during our online Cafe Le Brain earlier this week, we are pleased to announce it officially today, on World Alzheimer’s Day.

James has been a Pioneer dementia advocate, having been diagosed himself with dementia in the last Century!

DAI is indeed honoured and privileged to work and walk beside him, and our members find him a constant inspiration. He motivates us all to keep going, and is always a source of great wisdom and wonderful Scottish humour.

Since joining DAI, James  has continued his work locally and nationally, as well as being a very active DAI member on occasions representing us internationally, travelling with his dear wife, Maureen. James became a DAI board member some years ago, and continues to co host  the UK peer to peer support group on a Monday morning, which now also meets on Thursdays.

Congratulations from us all James.

Thank you for all that you have done, and continue to do.

 

#Hello from the late Richard Taylor PhD

Continuing our World Alzheimer’s Month #Hello blog series, we hear from one of our remarkable founders, the late Dr Richard Taylor, by highlighting one of his presentations given at the ADI confenence in Puerto Rico in 2014, just a few moths after we launched DAI.

It is also the year we are celebrating our 5th birthday, and listening to Richard speak on the topic of not acting or looking like we have dementia continues to be a global concern.

He continues to be missed by so many…

Not Acting The Way That’s Expected, by the late Dr Richard Taylor

https://youtu.be/CvnFTR22pgw

#Hello, my name is Cheryl Day

As we move into the second half of September, DAI continues to share #Hello stories from our members.

Please join us in celebrating life, and working towards a world where people with dementia and their families receive  improved diagnosis experiences and rates, and better care which includes rehabilitation. Of course we all want a cure or a disease modifying drug for even one type or cause of dementia, but the more than 50 million people currently living with dementia and their families also deserve the better care.

Special thanks to Cheryl Day for sharing her story with us today.

Image source: Cheryl Day

Hello My Name is Cheryl Day. 

Working cross culturally in Africa has many challenges and joys. Since 2009 I had been volunteering for SIM (Serving in Mission) in Ethiopia and Zimbabwe as a Horticulturalist (training farmers in conservation agriculture & food security) and a Pastor. I can tell you lots of stories of my adventures.

The joys were many, like opportunity to build new relationships, friendships, making a difference in peoples lives and the impact they had on my own life. Challenges like learning new languages and cultural cues, almost ending up in jail in Ethiopia, living standards and resource availability way different to Australia, and having two very serious back injuries while there. I thought this was about as challenging as my life could be.

While in Zimbabwe, October 2016, I had some unusual health symptoms that I couldn’t make out. In January 2017 I had the regular tests in South Africa for previous health issues, but the tests showed all was fine, but I knew that something was wrong. At the same time my issues started my sister was diagnosed with AML Leukemia back home. I eventually made a trip home in March 2017 to spend time with her and family.

While home I took advantage of better medical facilities to begin investigating my own health issues. At first, they thought my symptoms matched Multiple Sclerosis (MS). There was also a thought that there may be two major conditions happening at once. However, with no certain diagnosis I was given a clearance to return to Zimbabwe and continue the vital work there.

To cut a long story short after returning back to Australia the end of 2017 I finally got an official full diagnosis in May 2018 as test results showed a further decline from 12 months pervious.

Absolutely shattered at the prognosis of a growing list of health conditions and told to get all my affairs in order.

At 51 years old I was diagnosed with a rare condition – the semantic variant of Primary Progressive Aphasia. Plus issues from a Chiari Malformation of the brain, osteoporosis, recovering from a fall in Zimbabwe September 2017 where I had shattered 3 vertebrae in my back (a miracle I didn’t come home in a wheel Chair), and issues from the previous 2013 back injury.

Devastated knowing that this would be the final straw to end a goal of volunteering in Africa long term. (by the way I did get back to Zimbabwe to say goodbye in Sept/Oct 2018). I cried more than I had ever before, felt totally defeated, this was the end of my missionary adventures, the ability to enjoy life and continue to contribute into the lives of others.

One day I was listening to the radio and they were interviewing a lady named Kate Swaffer and her journey with dementia. Of course, my ears pricked up given my current circumstances and I listened intently to the interview.

I grabbed my computer and googled Dementia Alliance International. Becoming involved with DAI and connecting with Kate was the breakthrough I had been praying for and haven’t looked back since.

From the beginning of 2019 the support groups, the informative webinars, the friendships I’m making, the realisation of knowing I’m not alone in this, the opportunity to volunteer and help in advocacy for dementia are lifesaving.

A new focus, new life and new possibilities.

I am learning what I have read in the Bible so many times about living one day at a time and not worrying about tomorrow. I am still capable of many things, have a lot to offer and my passion of empowering people continues, just with a different perspective.

Cheryl Day © 2019

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

#Hello from one young carer

On Day 16 of World Alzheimer’s Day #WAM2019 we highlight the story of one young care partner whose mother had young onset dementia.

It is important we are remember that children of a parent living with younger onset dementia are too often the invisible care partners and are not adequately recognised by health care providers, if at all.

An Australian researcher, Karen Hutchinson was researching the impact of dementia on young adults and children. Her work identified four common experiences of young people living with a parent with younger onset dementia, which included the emotional toll of caring, keeping the family together, grief and loss and psychological distress.

This is one young care partners story, first published in Karen’s research, then republished with permission in Diagnosed with Alzheimer’s or another dementia: A practical guide to what’s next for people living with dementia, their families and care partners [1]

As an only child of a single parent X recalls seeing changes in his mum from about 8 years old. He lived in a small community where someone labeled his mum, at 42 years old, as a drug addict when they noticed some changes in her. Subsequently X was no longer able to have friends over to his house. He did not know what was happening to his mum, which he found hard as he could not explain to others what it was.

He was very protective of his mum and recalls how his friend pointed out to him when he was 11 that he was doing things that a parent normally did. Unknown to him he had started gradually to do things that his mum used to do. It was many years later before he knew her diagnosis of dementia.

When X was about 13 he hung with the ‘wrong crowd’ and did not attend school regularly. He was sleeping rough at nights to get away from home and drinking alcohol. He knew this was wrong but he needed to escape from his unpredictable home life. There were no boundaries placed on him so he was free to do whatever he wanted. His family and mum’s friends no longer visited so basically they were left alone.

They moved to a different area where X was soon labeled a ‘trouble-maker’ by the first school he attended. He then transferred to another school and it was there that finally a teacher took an interest in him but the fear of being separated from his mum made him stop disclosing what was happening at home. He recalls having some challenging times at school and felt he did not have much in common with his peers.

Thanks to a supportive teacher he remained at school until year 12 and this provided him with some ‘stability’ in his life. He did want to go to university but knew this was not going to happen and felt a real sadness about this. A supportive teacher helped him through this time and gave him hope for the future.

They faced financial hardship as there was no money for food and bills so he had to juggle school, paid work and caring for his mother. This eventually took its toll after leaving school where he ‘reached a crisis point’, he needed to escape and be like his friends free to leave home.

On reflection he felt he may have been depressed but his focus was on looking after his mum and felt there was no help for him except escape to the pub more frequently. He recalls the time when he finally asked for some help, a family member told him that it costs money and he wouldn’t be able to afford it, so he did not look into it further at this time.

His crisis worsened and he moved interstate as he wasn¹t coping but he organised his extended family to look after his mum before he left. He noted that very soon after his leaving community services were organised to support his mum. He felt lots of guilt but contacted and visited his mother frequently until he eventually returned home feeling stronger in himself to take over her care again. He felt no one could care for his mum as well as him because he loved her.

This complex and challenging situation continued whilst juggling paid work and his demanding caring role. Finally with the added benefit of maturity he realised that services and care for his mum was something they were entitled to and not just someone doing them a favour. With this new insight he felt more confident and empowered to get the help they needed. He now recognised himself as a carer and obtained financial support and gained legal advice with regards to managing his mum’s financial affairs. He recognised too that he needed a plan for the future. After many frustrating months navigating the complex process of arranging a suitable nursing home placement for his mother, he was successful. He reflected that ‘you shouldn’t have to jump through hoops to get it (services and residential care).

When his mum finally was accepted into a nursing home he remembers this time as a particularly emotional and difficult period where he felt he had failed her. He thought his life was spinning out of control but he knew it was time to be her son again. He was able to spend quality time with his mum without all the responsibilities and also finally start to sort out his own life.

‘I think having someone to talk to who knew about what was going on, would have made things better for me too. Because I just felt really alone. ‘Didn’t feel like I could talk to anyone about that stuff’ he reflected.

Stories in Karen’s research, and from DAI members reflect this is experienced by many young people in a similar situation to this young man.

You can also read the article by Karen Hutchinson, Chris Roberts and Susan Kurrle in the Australian Journal of Dementia Care, Invisible carers: Young People Caring for People With Dementia.

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

 

[1] Swaffer, K & Low, LF. (2016). “Diagnosed with Alzheimer’s or another dementia: A practical guide for what’s next for people with dementia, their families and care partners”, New Holland Publishers: Sydney, pp 253-254.

 

 

DAI supports StepUp for Dementia Research

Media release

#Wam2019 Day 13

 

Like many other countries now, Australia has now launched a platform to connect researchers with people with dementia and their care partners or families, to increase opporunities for research about dementia.

Dementia Alliance International is proud to become an Organisational Champion with StepUp for Dementia Research.

StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals – both with and without dementia – with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure. We make it easier for the brightest minds in research to connect with people willing to donate their time.

Currently, there is no systematic and inclusive way in Australia for people with dementia to express their interest in participating in research. For researchers, recruiting participants for dementia-related studies is costly and time consuming. Delays in finding the right people can result in studies taking longer to deliver, often requiring funding extensions. Insufficient study samples limit the effectiveness and scope of research – the difficulty researchers face when it comes to recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.

The initial launch of StepUp for Dementia Research will cover New South Wales and Western Australia, ahead of nation-wide scaling in the coming year.

Register here for our next Webinar to learn more about StepUp for Dementia Research.