In July this year, DAI hosted a webinar Gait retraining and Dementia, by A/Prof James McLoughlin. It was very well attended, and we are pleased to share it during Dementia Awareness Month 2020.
James is an Associate Professor at Flinders University in Adelaide. He has a Bachelor of Applied Science (Physio), a MSc(Clinical Neuroscience), and a PhD, and is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic.
James is passionate in promoting best practice for people with neurological & vestibular conditions. He has previously presented to us on Rehabilitation and Dementia.
About the Webinar: People with all forms of dementia can experience changes to their walking and balance. There are many factors that can contribute to these issues that can be targeted within an individualised rehabilitation program. James will discuss some of the proactive ways neurological physiotherapy can help with treatment, training and support.
In the last few weeks, a lot of people and organizations who have never before used zoom (or a similar online platform) have had to meet online for work, family and social gatherings.
Even organizations who have been using zoom for a long time, have started producing help sheets and other resources on how to use it. At last… the world is catching up, and people with dementia really appreciate it!
Online communicating is difficult, but for many who are diagnosed with dementia, is preferable to a phone call, as we can see the others persons face and expressions, and therefore alsohave a visual cue beyond a name of who we are talking to.
For those with dementia who also have aphasia such as Primary Progressive Aphasia, it is not easy to communicate in person, let alone online, hence we wanted to post this blog with some tips and other resources.
DAI has posted blogs on aphasia previously, including a short video in 2016 on a post titleed Understanding Aphasia. This DAI blog also has a caregivers guide, produced by the National Aphasia Association, and the following video is worth watching (again).
These tips may make it easier for you to understand and talk with people with any type of aphasia. To help a person with aphasia communicate with you, try the following:
Get their attention before you start speaking.
Keep eye contact.
Watch for body language and the gestures used.
Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
Keep your voice at a normal level. You do not need to talk louder unless you are asked to (we are not all hearing impaired).
Keep the words you use simple but adult. Do not “talk down” to the person with aphasia, as if having aphasia (or dementia) means having intellectual deficits.
Use shorter sentences, and if possible, repeat key words that are important to understand.
Slow down your speech, but not so much that is sounds insulting or patronising.
Give the person time to speak; it may take longer.
Try not to finish sentences or find words for them; this poem may help explain why.
Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
Ask the person with aphasia to draw, write, or point when having trouble talking.
Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
It is ok if the peson makes mistakes sometimes. They may not be able to say everything perfectly all the time, but neither may you.
Let them try to do things for themselves, even if they need to try a few times. Help me when help is asked for. Unless it is dangerous there is no need to intervene uness asked to.
Aphasia does not equate to an intellectual disability, but rather is a language impairment or disability
Whilst DAI currently does not have peer to peer support groups specifically for people with aphasia, if we have enough requests to do so again, we will do o ur best to set one up. Contact us at [email protected] if you or someone you support is interested.
Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
DAI held its first Capacity Building Workshop in Las Angeles in July
DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
A second volunteer, Tamara Claunch from Houston Texas joined long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
Updates to many of our Governance documents and By Laws, soon to be announced and shared
It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
We have two formal publication in progress, finally, to be released sometime in 2020
Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.
December 12 is International Universal Health Coverage Day, a day where we must remind governments AND health care providers that everyone has a right to health.
As background on the history of this day, in 2014, the Universal Health Coverage Coalition started to celebrate 12 December as Universal Health Coverage (UHC) Day, commemorating the date on which the UN General Assembly officially recognised the importance of UHC. It is a United Nations-designated day, which was officially resolved on 12 December 2017.
Since then, the day has become the annual rallying point for the growing global movement for #Health4All.
Every person—no matter who they are, what health condition they have, or where they live, should be able to get the quality health coverage and services they need without facing financial hardship.
DAI knows that most people with dementia do not receive full health coverage, nor adequate post diagnostic support to live with dementia; instead, they are too often only advised to go home and prepare to die. And for those people with dementia and their families who choose a different pathway, the cost is often crippling.
Three months after the historic high-level meeting the the United Nations General Assembly on universal health coverage (held on 23 September 2019), we understand that dementia was not specifically included in discussions, in spite of the many years of global advocacy by DAI and ADI.
This is not a positive outcome for the more than 50 million people currently livign with dementia!
This high-level meeting, held under the theme “Universal Health Coverage: Moving Together to Build a Healthier World,” aimed to accelerate progress toward universal health coverage (UHC), including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.
Yet, we know that people with dementia are still being denied access to health care, all over the world.
Let’s all rally together to ensure everyone, including people with dementia are not left behind in the 2030 Sustainable Development Goals Agenda!
The International Day of People with Disability (IDPwD) is a United Nations-sanctioned day, celebrated internationally on 3 December, with the aim to increase awareness of gains to be derived from inclusion of people with disability in every aspect of political, social, economic and cultural life. It is imperative that persons with dementia are included in these campaigns.
The theme this year is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.
It focuses on the empowerment of people with disability for inclusive, equitable and sustainable development as anticipated in the 2030 Agenda for Sustainable Development.
We must ‘leave no one behind’
We must recognise disability as a cross-cutting issue, and
To celebrate the International Day of People with Disability this year, and as we work towards claiming our rights, alongside all other people with any disabilities, let’s watch the first DAI Side Event from the CoSP in June 2019 again.
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.
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.
We invite you to register now for DAI’s “A Meeting Of The Minds” Webinar, July 24/25, 2019, with presenter and DAI Board member, Christine Thelker from Canada.
Please note: this is one event, set in a number of different time zones.
About the Webinar: DAI recently held a Side Event at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). This webinar will highlight the event, focusing on why dementia must be managed as a disability and why people with dementia are rights bearers as all others, such as universal heath care including rehabilitation. The panel included a group of eminent speakers, and was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD
The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.
Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.
As an organisation DAI continues to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.
About our speaker: Christine Thelker, a current board member of DAI, is from Vernon, British Columbia, Canada and at 59 says, her sense of humour has grown, since her diagnosis of dementia. She is a Board member of Dementia Alliance International, and previously worked for the Interior Health Authority for 13 years in various sites, including in dementia care and of life care. She advocates for families and patients and for better training for workers in dementia care. She also advocated for better working environments for the employees. Christine designed and taught a program to nursing students at the local colleges on end of life care and dementia care, and designed a program on unattended sorrow, which was in relation to all the deaths workers saw and the cumulative effects. She believes it has many similar effects on people diagnosed with dementia and doing more work around that. Widowed at 47 and then diagnosed with Vascular dementia at 56, Christine is still advocating, using her voice to help others. She loves working with Dementia Alliance International (DAI) and believes whole-heartedly that it helps keep her living well with her dementia. Her motto since being diagnosed is “I’m not done yet”.
Please join us online today for the DAI Side Event being hosted at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). Dementia: The leading cause ofdisability.
The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries. UN Web TV
Thu, 13 Jun 2019 at 9:45 am Eastern Time – LIVE IN NYC
Thu, 13 Jun 2019 at 2:45 pm London, UK BST
Thu, 13 Jun 2019 at 3:45 pm Brussels, Belgium CEST
Thu, 13 Jun 2019 at 11:15 pm Adelaide, Australia ACST
Thu, 13 Jun 2019 at 9:45 pm Perth, Australia AWST
Thu, 13 Jun 2019 at 11:45 pm Sydney/Melbourne/Brisbane, Australia AEST
Fri, 14 Jun 2019 at 1:45 am Auckland, New Zealand NZST
We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care:
Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening remarks
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.
Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.
We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.
This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.
That is also why DAI has organised a Side Event, taking place on Thursday morning.
No one and no organisation has ever represented people with dementia in this way, at this conference before.
Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr.called ‘that sense of otherness’.
I had not been stigmatised or discriminated against, except as a woman.
I had not come from a deeply marginalised group.
However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.
Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.
However, after a diagnosis, we do not receive access to universal health health care.
We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.
We are segregated from others when we require assisted living.
We are institutionalised.
We are restrained physically and chemically, with no consideration of our rights.
In society, clinical practice is only provided, when supported by strong evidence based research.
However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.
This has lead to further chemical and physical restraint.
Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.
Disease or disability specific villages are little different to ghettoisation of groups of people.
They are not a solution to those people with dementia who do need assisted living.
We are daily and systemically being denied our human rights.
Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.
Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.
This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.
Chair, CEO & co-founder
Dementia Alliance International
Next week, the 12th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities takes place from Tuesday 11 to Thursday 13 June 2019 at UN Headquarters in New York. On Monday 10 June, a Civil Society CRPD Forum will be held to complement the Conference.
DAI will be attending both events, aiming to represent the 50 million people currently living with dementia, and each person who is newly diagnosed every 3.2 seconds. It is a hostorical moment in the advocacy of, by and for people with dementia. That this DAI Side Event was accepted is a first, and highlighting. Dementia as a disability has never been represented at the CoSP conference ever before.
The Themes and Sub-Themes
The overarching theme of the Conference is “Ensuring the inclusion of persons with disabilities in a changing world through the implementation of the CRPD”. This is highly relevant to people with dementia and our families.
Three round tables will address the following themes:
Technology, digitalization and ICTs for the empowerment and inclusion of persons with disabilities
Social inclusion and the right of the highest attainable standard of health
Inclusion of persons with disabilities in society through participation in cultural life, recreation, leisure and sports
Highlights for the week:
The Civil Society Forum on Mon 10 June will address what is the current state of play; capacity building; and protection of the rights of children with disabilities.
Civil Society representatives speaking in all official sessions of the CoSP and co-moderating all three round-tables from Tues 11 to Thurs 13th June.
On Wednesday 12, Matters related to the implementation of the Convention (item 5 (b) (ii): Round Table 2. Social inclusion and the right to the highest attainable standard of health – will be co-chaired by H.E. Ambassador Katalin Annamária Bogyay of Hungary, Vice President of the Conference and Ms. Kate Swaffer Civil Society representative from Dementia Alliance International, also Chair and CEO of DAI.
The Chair of the International Disability Alliance will speak at the opening of the CoSP, as a representative of the Civil Society Coordination Mechanism, and alongside UN Secretary-General
100 side-events are being organised, covering a broad range of topics
IDA and its members will also be co-sponsoring and/or speaking at over 20 side-events, including DAI’s.
DAI is hosting its own and first Side Event on Dementia as the leading cause of disability on June 13, with live web cast, International Sign and Closed Captioning services provided, to ensure accessibility to and for as many people as possible
DAI will be not only be celebrating our 5th Birthday at this exciting event, but also ensuring dementia as a disability definitively joins the global disability stage. This event is being held on Thursday June 13, 9.45-11.00 am in Conference Room 11.
Note: We will be posting a blog with the times and link to the live webcast as soon as the link is available to share.