We therefore also wish everyone a safe and peaceful New Year, as well as a meaningful and productive year ahead, and really hope you will join us for our 5th Birthday Celebration and Webinar later this month.
The eight founding members who set up DAI, decided the organization should be a global advocacy and support group, of, by and for people with dementia. The original Vision was for “A World where people with dementia are valued.”
DAI’s Vision now is: “A world where people with dementia are valued and included” and we are proud to also be global, well beyond the three countries the original co founders are from.
Although there were and still are many Alzheimer’s organisations, their missions started with support for families and care partners, and the founding members of DAI believed that peer to peer support specifically of, by and for people with dementia was needed. The eight founding members also noticed that too often, people spoke for us and about us, but rarely invited us to speak for ourselves. The first few years that people with dementia spoke at ADI conferences, they usually had to submit abstracts and pay to attend.
It is very likely most of the founding members did not have the goal or vision for the amount or level of global advoacy and activism DAI has become involved in, nor any sense of who we would be collaborating or in relationships and partnerships with, but in five years, we have worked hard, and collaborated to work with many leading organisations including the United Nations and the World Health Organisation.
Yesterday was the last official day of active service as members of the Board of Directors for Phyllis Fehr, Ian Gladstone, and Agnes Houston, and we thank them sincerely for their service. Our incoming 2019 Board of Directors will meet next week for their first official board meeting, and we will more formally introduce you to them board soon. By attending our birthday party or our January Webinar, you will also get to meet them online.
Our official celebration of our 5th Birthday will be held on January 15/16, 2019. DAI Members will be sent the login details separately and everyone else will be receive registration details to attend soon.
Kate Swaffer (Chair/CEO)
Jerry Wylie (Vice Chair)
Eileen Taylor (Secretary)
John Sandblom (Treasurer)
Bill Turner (Image not available)
We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.
As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.
From those early days of eight (8) founding members with dementia representing three countries, we have come a long way. Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.
For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.
One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.
DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of “A world where people with dementia are valued and included.”.
That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.
In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested.
DAI is very proud to have recently partnered with Dementia Australia (DA), which you can read more about in our Media Release. They are the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.
In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.
We congratulate Dr Jennifer Bute on the recent release of her first book,Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year Somebody I Used to Know continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs.
DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.
Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and onreceiving her Honorary Doctorate from the NUI Galway.
DAI continues to make submissions to governments on our rights, on dementia plans, on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.
We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people.
The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:
2000: Dementia Advocacy Support Network International (DASNI)
2002: Scottish Dementia Working Group (SDWG)
2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
2012: Highlands Dementia Working Group (HDWG)
2012: European People with Dementia Working Group (EUPDWG)
2013: Dementia Australia Dementia Advisory Committee (DADAC)
2013: Irish Dementia Working Group (IDWG)
2014: Dementia Alliance International (DAI)
2014: Japan Dementia Working Group (JDWG)
2014: Southern (Kiama) Dementia Advisory Group (DAG’s)
2014: NZ Dementia Advisory Committee (NZDAC)
2015: Ontario Dementia Advisory Group (ODAG)
2016: Dementia Advocacy Awareness Team (DAAT)
2017: 3 Nations Dementia Working Group (3NDWG)
It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.
Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.
There are only 15 days left to make Christmas REALLY COUNT, through the PayPal fee-free + 1% Christmas Donation deal.
Yesterday was Universal Health Care Day. This years’s theme is ‘Unite for Universal Health Coverage: Now is the Time for Collective Action’, emphasises the critical importance of strong health systems to reduce poverty, promote economic growth and achieve the 2030 Sustainable Development Goals.
It also seemed appropriate today to post this very short video from the World Health Organisation as a reminder that access to health for all is a basic human right.
The NCD Alliance also published their updated policy brief, “on the mutually reinforcing agenda of Universal Health Coverage and NCDs, to mark UHC Day 2018. The brief on reflects the developments in both the NCD response and UHC agenda since the adoption of the 2030 Agenda for Sustainable Development and the SDGs. It makes the case for including NCDs in national UHC benefit packages in order to fully achieve the Sustainable Development Goal target of healthy lives and well-being for all at all ages. 2018 is the first year that UHC Day has been formally recognised by the United Nations, and comes 10 months before the UN High-Level Meeting on Universal Health Coverage, scheduled for the 2019 General Assembly, on 23 September.”
PayPal is once again offering charities a ‘fee-free’ special Christmas period, from November 27 through to December 31st (US time), by covering the fees of all donations through PayPal using the link provided below. On top of that, the Giving Fund will add 1% to the donation.
Dementia Alliance International relies on the generosity of indovidual donors and corporate partners, and also recieves fees through the generosity of some of its members who provides offered services, for which the fee goes to DAI.
It also now defines dementia is a condition causing acquired cognitive disabilities.
It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities. However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).
Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).
If you go to the United Nations website, you can read more about the theme of their activiteis today. What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.
This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).
On the second half of the page about today on the UN, it says:
The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.
In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.
Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”
People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.
In the last 5-10 years, there has been a lot of interest and work in supporting intergenerational relationships and care for people living in aged care facilities (nursing homes), with and without dementia.
This week, we are pleased to feature a guest blog written by Jeremy Raynolds, who is a third-year psychology student at Washington State.
Jeremy has a strong interest in gerontology studies and often volunteers in nursing homes and care centers. He occasionally blogs about his work and experiences, and gets the help with writing from edubirdie. His aim is to develop a strategy accessible to anyone who has people with dementia in their care. We thank Jeremy for writing this guest blog, and for his interest in gerontology, and particularly in positively supporting people diagnosed with dementia.
Working and supporting people with dementia as a student
“Gerontology is derived from the Greek words geron, “old man” and -logia, “study of”and, as you can guess is the study of the variety of aspects of getting older.
Aging is a natural process that affects everyone, but, of course, every case is unique. In this article, we will touch upon a very specific topic – caring for people with dementia, the type of brain disease that affects thinking abilities, memory capabilities and emotional stability. It is especially challenging, and requires a special approach and set of skills. Today we are focusing on advice for students who are willing to volunteer or do an internship in an Alzheimer’s care center or nursing home that deals with dementia. This is a very noble, yet difficult task that deserves praise as well as support from specialists and society.
Caring for the elderly is not an easy task. You sometimes have to deal with grumpiness, sicknesses, and various emotional and psychological issues. However, it goes without saying that caring for older patients with dementia may be harder. Pressure can build from constant repetition due to memory issues experienced by people with dementia, as well as unstable emotional backgrounds and the fears that come along with the work atmosphere at care centers. So it is extremely important to support and provide reasonable assistance to those students who decide to take up this task.
The disease also raises many social issues, as people with dementia can be isolated and treated unfairly, and the question of human rights arises from the cognitive deprivation aspects of dementia. Due to these reasons, proper care, destigmatization of the problem and acceptance are essential to the issue.
The vital characteristics of caring for people with dementia are compassion, understanding, and patience—a lot of patience.
Try to think of them as people with different processes that they need to go through and do not expect them to act like other older people. They may need more time to make a decision, more time to process some things and they may ask you the same thing repeatedly. But when you recognize where this comes from and make room for a patient and kind response, everything works out perfectly.
Supporting people with this disease can be broken down into small parts. For instance, communication is extremely important – everyone needs human touch and connection, including people who live with dementia. You can find out the topics that interest this particular person and embrace them, even though the conversation might not be as smooth and consistent as usual. But it is a true charity to set aside your frustrations and personal issues and selflessly connect with a person in need of communication.
Of course, it is important to know your limits. Do not make work your entire existence; it puts you at risk of burning out and damaging your own mental and emotional state. Take it slow and remember to take breaks and “switch off” for a while. Refresh yourself with some totally random activity or other to reprogram your mind and body. It could be a close set of exercises or a few pages from a book, a walk outside or a coffee break.
Consider this work as a partnership.
You meet the need for socializing and connection for people with dementia, and they provide you with an infinite learning opportunity.
It doesn’t matter whether you are a future social worker, a psychology student, or a medical student – practice is the best teacher. No matter how many books and theories you have gone through, practical approach grants you with precious skills and knowledge. It is a good reason to be grateful for such an opportunity.”
We have invited Jeremy, and hope he will find time next year to present on this topic at one of our Webinars.
Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.
About the Webinar: The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.
About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.
A/Prof Low conducts research that she hopes will make a difference in the world.
Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.
She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.
Wednesday, November 28, 2018 – times (USA/UK/EU/CA):
10:00 am Honolulu
12:00 pm Oregon Portland/San Francisco USA
12:00 pm Vancouver CA
2:00 pm Des Moines/Chicago USA
3:00 pm New York USA
3:00 pm Toronto CA
8:00 pm London/Glasgow UK
9:00 pm Paris, Munich, Amsterdam, EU
Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):
6:00 am Adelaide AU
6:30 am Brisbane AU
7:00 am Sydney/Melbourne/Canberra/Tasmania AU
4:00 am Perth AU/Taipei TWN
5:00 am Tokyo, JP
9:00 am Auckland, NZ
Note: the Q&A session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.
During World Alzheimer’s Month, we featured a daily series of #Hello blogs, personal stories frrom DAI members from around the world. Many reported how educational and helpful they were, and UK blogger and dementia consultant Beth Britton asked for permissio to use some of them in a training session she was hosting. The following is Beth’ s story’.
‘Learning from Personal Stories’
DAI bloggers feature in MacIntyre’s Dementia Special Interest Group Meeting
As a former care partner to my dad, who had vascular dementia for 19 years, the work of Dementia Alliance International is close to my heart. So, when one of my social care consultancy clients, MacIntyre, asked me to run a session during their Dementia Special Interest Group meeting on 3 October 2018, my source of inspiration was DAI’s ‘Hello My Name Is’ World Alzheimer’s Month blogs. Kate Swaffer had kindly alerted me to this series of blogs via twitter in early September 2018, and the chance to share these stories further wasn’t to be missed!
Before I tell you how my session went, I thought a quick history lesson might be helpful…
I began writing, blogging, campaigning and then training and mentoring consultancy work after my dad died in April 2012.
I first met Kate in 2013, having initially connected via twitter (you can follow me on Twitter, and I have met and worked with other DAI members in the UK since.
‘Learning from Personal Stories’
My October 2018 Dementia Special Interest Group Meeting session
Firstly, I should say I am extremely grateful to DAI members Kris McElroy, Dick Watson, Jennifer Bute, Julie Hayden, Carol Fordyce, Phyllis Fehr, Davida Sipe and Nina Baláčková for allowing me to print and share their blogs for my ‘Learning from Personal Stories’ session during MacIntyre’s October 2018 Dementia Special Interest Group meeting. Also, huge thanks to Kate Swaffer for kindly liaising with you all on my behalf – without this combined support the session wouldn’t have been able to happen.
After a brief introduction from me, we watched Kris McElroy’s film . I then picked out a couple of quotes from Kris’ blog, including:
“While I have been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia has brought its own unique set of challenges, barriers, and stereotypes. Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.”
I felt that this was a really important quote because so many of the people with learning disabilities that MacIntyre support have faced similar challenges, barriers, stigma, and stereotypes throughout their lives too.
We then moved into table work. With staff members sat around 5 tables, I shared printed copies of the blogs written by Dick, Jennifer, Julie, Carol and Phyllis, for staff to read, discuss and pick out quotes from.
After 15 minutes we had a feedback session, in which a staff member from each table briefly told each DAI member’s story, and shared a couple of quotes that had stood out in their table discussions.
Along with all of us empathising with the struggles we heard about around diagnosis and post-diagnostic support (one of the great challenges for people with a learning disability is getting a timely diagnosis, and staff being believed when they go to doctors expressing concerns about changes in the person that they are supporting), some great slightly off-topic discussions also sprang up, including about the need to communicate sensitively and compassionately with people who have a learning disability and dementia.
A huge plus in our discussions was having DAI member Tracey Shorthouse with us for the whole of our meeting. When it came to my session, Tracey was fantastic at contributing to the conversations we had about her fellow DAI member’s blogs. Having heard Tracey speak earlier in the day about her struggle to get a dementia diagnosis as a nurse, reading about Jenniferand Julie’s experiences as former healthcare professionals really brought the point home that no matter how much you may know professionally about how health and care systems work, when it’s you who needs the help and support you are often no better off.
We were running out of time after all of these great discussions, but I was able to briefly speak about Davida’s blog and the points about medication, and Nina’s blog made us all smile with her anecdote about potato soup.
Overall, MacIntyre staff were really engaged and enlightened by the DAI ‘Hello My Name Is’ blogs, and sometimes shocked too.
The end of this quote from Phyllis’ blog probably drew the biggest gasp and collective head-shaking of the day:
“It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.”
I know from staff feedback that the session was really enjoyed, and that’s only possible because of the generosity of DAI members in sharing your blogs with us, and for writing with such honesty and candour that means there is so much for professionals to reflect upon.
Everything I do in my work is about learning from the experts: people living with dementia themselves and those closest to them. That is where it all began for me with my experiences with my dad, and I hope that inspired by the fantastic session DAI members supported me to run for MacIntyre’s staff, other training providers and health and care organisations will realise the value of working with the REAL experts in the future.
Thank you DAI.
MacIntyre were established in 1966 by Kenneth Newton Wright, the parent of a disabled child, and have grown to become a leading UK charity, highly respected and committed to setting standards and increasing choice. MacIntyre provide learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Their diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
I’ve worked with MacIntyre since 2013. In 2016 they were awarded a significant grant from the UK Department of Health and Social Care’s Innovation, Excellence and Strategic Development Fund to improve the care and support of people with learning disabilities who have dementia or are at risk of developing dementia. MacIntyre’s Dementia Project was born https://www.macintyrecharity.org/our-expertise/dementia/the-macintyre-dementia-project/. For readers who aren’t aware, people living with a learning disability are more at risk of developing dementia as they age, and if they do develop dementia, it’s usually as a younger person (under 65 years old) and it often progresses rapidly. Follow MacIntyre’s Dementia Project on twitter here…
I’ve introduced many people living with dementia to MacIntyre for them to come and speak about their experiences, ensuring these meetings remain rooted in personal stories. Dementia Special Interest Groups are attended by around 30-50 staff from across MacIntyre, along with guest speakers and sometimes other individuals with professional or personal interest in the synergy between learning disabilities and dementia.
Special thanks from DAI to Beth Britton, and to MacIntyre and their team for engaging with our members in this way.
This year, the WHO Mental Health Gap Forum 2018 (mhGAP Forum) is taking place today and tomorrow. It provides an opportunity for diverse stakeholders to discuss progress on the WHO’s Mntal Health Plan 2013-2020. The theme for mhGAP Forum 2018 is “Accelerating Country Action on Mental Health”, reflecting the vision of the WHO’s 13th General Assembly.
This year, for the first time ever, you can watch the plenary presentations live stream. Access the provisional agenda, and the event webcast link at:
For more information about the event, the WHO website says:
“WHO Mental Health Gap Action Programme.
Mental, neurological, and substance use disorders are common in all regions of the world, affecting every community and age group across all income countries. While 14% of the global burden of disease is attributed to these disorders, most of the people affected – 75% in many low-income countries – do not have access to the treatment they need.
The WHO Mental Health Gap Action Programme (mhGAP) aims at scaling up services for mental, neurological and substance use disorders for countries especially with low- and middle-income.
The programme asserts that with proper care, psychosocial assistance and medication, tens of millions could be treated for depression, schizophrenia, and epilepsy, prevented from suicide and begin to lead normal lives– even where resources are scarce.
This year’s mhGAP Forum will take place on 11-12 October and will provide an opportunity for diverse stakeholders to discuss progress on WHO’s Mental Health Action Plan 2013-2020 in countries.
The theme for mhGAP Forum 2018 is “Accelerating Country Action on Mental Health,” reflecting the vision of WHO’s 13th General Programme of Work.”