Category Archives: Rehabilitation

International Day of Persons with Disabilities

The Dementia Alliance International (DAI) membership joins the rest of the world on Thursday 3rd December 2020 to observe the International Day of Persons with Disabilities under the theme “Toward a disability inclusive, accessible and sustainable post COVID-19 world”.

The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life.

Until recently, people with dementia have been left behind, including in those events and discussions about persons with disabilities, as too few understand dementia is a major cause of disability ad dependence in older persons globally. Many age-related health conditions also cause disability, and the global data does not yet reflect these cohorts.

As the world grapples with the effects of the Covid-19 pandemic, many decisions by policy-makers have failed to take into consideration the rights of persons with disabilities enshrined in the UN Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGS). This is evident in a recent report following a global study which examined the extent to which COVID-19 pandemic has exposed some deep structural inequalities in society.

Data gathered from a study done by for one report “COVID-19, Amplifying Voices: Our Lives, Our Say”, is evidencing that persons with disabilities, older persons, and persons from lower socioeconomic status backgrounds are among those hardest hit by the pandemic.

While this particular report puts a spotlight on the voices of blind and partially sighted persons, many of the experiences shared strongly resonate with numerous other studies conducted by other organizations of persons with disabilities internationally.

In order to ensure that no one is left behind in any aspect, we take this opportunity to call for effective collaboration with representative organizations of persons with disabilities, governments, communities, civil society, UN and other international agencies, and the private sector as we collectively strive to build and sustain a better, more inclusive post-COVID society.

We especially call for governments and health care professionals to accept dementia as a condition causing multiple and progressive disabilities, and to provide disability assessment and support immediately following a diagnosis, including rehabilitation.

 

Video: Our rights under threat as we grow old

The recording of the virtual Side Event held today during the 13th session of the Conference of States Parties to the CRPD is available to watch now.

Our rights under threat as we grow old:  A timely expert discussion on the intersection of disability and age.

1 Dec 2020: A discussion on the disproportionate impact of the COVID-19 pandemic on older persons and persons with disabilities, exacerbated by existing ageism, ableism, and shortcomings in support systems and residential care.

Speakers:

  • Gerard Quinn, Special Rapporteur on the Rights of Persons with Disabilities
  • Claudia Mahler, Independent Expert on the Enjoyment of all Human Rights by Older Persons
  • Kate Swaffer, Chair, CEO & Co-founder, Dementia Alliance International (DAI)

Moderator: Bethany Brown, Human Rights Advisor, International Disability Alliance (IDA)

It is also avalable to view on the on the webtv.un.org:  http://webtv.un.org/watch/our-rights-under-threat-as-we-grow-old-a-timely-expert-discussion-on-the-intersection-of-disability-and-age-cosp13-side-event/6213396021001/

Newsflash: Professor Gerard Quinn is the new UN Special Rapporteur on the rights of persons with disabilities

Image: Professor Gerard Quinn is the new UN Special Rapporteur on the rights of persons with disabilities

The Dementia Alliance International wishes to congratulate Professor Gerard Quinn on his appointment as the new UN Special Rapporteur on the rights of persons with disabilities.

Mr. Quinn takes over the role from Ms. Catalina Devandas Aguilar who has worked tirelessly for persons with disabilities, and who has been appointed as Costa Rica’s ambassador to the UN in Geneva. Catalina has actively worked to ensure people with dementia are included in this work, for which we thank her.

Given Mr. Quinn’s extensive experience and expertise, we look forward to the implementation of this important mandate in the coming years.

It is a critical time for the rights of persons with disabilities, and we know Professor Quinn will carry out his role in a way that ensures inclusive, systematic and sustainable change to ensure the universal respect, protection, and fulfillment of the rights of person with disabilities, including peopel with dementia, while fully considering multiple and intersecting forms of discrimination.

The Dementia Alliance International looks forward to the Special Rapporteur’s contribution to the successful implementation of the United Nations Disability Inclusion Strategy as part of ongoing efforts to ensure that the United Nations system is fit for purpose in relation to disability inclusion.

Among his priorities, Mr. Quinn said that he will work to ensure that the voices of persons with disabilities are heard loud and clear, in global responses to general calamities caused by Covid-19, climate change and the armed conflicts. He highlighted the need for systemic change to underpin the gains of the UN CRPD, and to focus attention on the cultural and structural changes needed for the Sustainable Development Goals to be attained.

He will also continue to bring attention to the positive contribution of persons with disabilities, including highlighting the need to promote our active citizenship.

Mr. Quinn is a Professor Emeritus in law at the National University of Ireland, with a long career in public service. He sits on the scientific committee of the European Union Fundamental Rights Agency (EU FRA, Vienna), and has led the delegation of Rehabilitation International during the drafting of the UN CRPD.  To learn more about Mr. Quinn, follow this link.

Gait Retraining and Dementia, by A/Prof James McLoughlin

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.

Watch the webinar recording  here:

#DAM2020 #DAIisLifeChanging #WAM2020

Make sure you get involved in the DAI Art Auction this week.

Communicating with a person with aphasia

Image source: Kate Swaffer

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).

The National Aphasia Association in America also has a lot of useful information on their website.

Tips for Communicating with a Person with Aphasia

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:

  1. Get their attention before you start speaking.
  2. Keep eye contact.
  3. Watch for body language and the gestures used.
  4. Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
  5. 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).
  6. 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.
  7. Use shorter sentences, and if possible, repeat key words that are important to understand.
  8. Slow down your speech, but not so much that is sounds insulting or patronising.
  9. Give the person time to speak; it may take longer.
  10. Try not to finish sentences or find words for them; this poem may help explain why.
  11. Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
  12. Ask the person with aphasia to draw, write, or point when  having trouble talking.
  13. Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
  14. 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.
  15. 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.
  16. 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.

Register now for our June “Meeting Of The Minds” Webinar, Dementia, Human Rights, Selfcare and COVID-19

Happy New Year & Happy 6th Birthday DAI lo

Welcome to 2020, and Happy 6th Birthday, and congratulations to everyone at Dementia Alliance International (DAI) for such a successful 2019.

Today we share some of our achievements for 2019, which include (but are not limited to) the following:

  • Celebrating our 5th birthday on this day last year! Special thanks to Graeme Atkins for his delightful song
  • Our continued strategic partnership with Alzheimer’s Disease International; we thank them for their continued sponsorship and support
  • 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
  • Collaboration with the Alzheimer’s Society UK and the 3 Nations Dementia Working Group on a Directory of Resources on advocacy, and a short video: The Many Voices of Dementia, released in July
  • 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)
  • Membership is increasing steadily
  • Increases to additional new free members services, including, for example two Living Alone Social peer to peer support groups
  • 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
  • The WHO launched their new Quality Rights initiative and Toolkit. DAI members Professor Peter Mittler and Kate Swaffer both contributed significantly to this on behalf of DAI
  • 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
  • Finally, please find the time to complete the DAI Survey on Advocacy and involvement in Dementia Research and Policy; Responses are needed by January 15, 2020. Thank you.  

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.

DAI thanks you all for your hard work.

Universal Health Coverage Day 2019

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! 

 

International Day of People with Disability #IDPwD

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
  • This must include people with dementia. 

It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore that all people diagnosed with dementia have inalienable rights to full and equal access to the CRPD and other Conventions, and to Universal Health Coverage, including rehabilitation.

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.

Support people with dementia to attend the Alzheimers Disease International 34th International Conference in Singapore in March 2020. Early Bird registrations have been extended to Friday, December 13, 2019.

Support Christine Thelker – From Canada to Singapore: A Quest for Human Rights

#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.

Register now for DAI’s July Webinar: Dementia as a Disability

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”.

Register here…

Wednesday, July 24, 2019 (USA/CA/UK/EU):

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, July 25, 2019 (AU/NZ/JP/SGP/TWN/CHN):

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

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

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…

Donations are appreciated.