Category Archives: disAbility rights

Human Rights and the Confinement of People Living with Dementia in Care Homes

Todays blog is an important Human Rights Law Journal article, Human Rights and the Confinement of People Living with Dementia in Care Homes published on 18 June 2020.

By Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming.

Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

You can download the full article here…

This article is one of three, as part of a research project many members of DAI were involved in as participants of the research, and at the Summit. The project ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ aimed to explore:

  • current barriers to liberty and community access for people living with dementia in RACFs; and
  • the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.

The first published article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.

#HumanRights4All

Supporting people with dementia through COVID-19

This DAI infographic provides an easy reference to support for people with dementia globally.

During the current COVID-19 pandemic, members of DAI and almost all others are rightfully extremely worried about the impact on their day to day lives of this outbreak, including being able to shop in their communities for the most basic of supplies.

In most countries cinemas, almost all essential services such as restaurants, conference venues, hairdressers, beauty therapists and nail salons have been ordered to close. Physical distancing measures are in place (commonly referred to as social distancing), In some countries, no more than two people can meet in any one group, and they must be 1.5 metres apart.

DAI is providing additional support to DAI members at this difficult time by hosting a number of extra support groups, reported on recently.

If you have demenetia, or know someone who does, please refer them to DAI, or to their local or national Alzheimer’s organisation, as many are also now providing online support.

These are extraordinary and extremely stressful and upsetting times for most people, perhaps especially older persons and marginalised groups such as people with dementia, and the information  below may be of interest.

It is a challenging time for everyone, and enhances why access to clear, accurate, and up-to-date information is essential.

Alzheimer’ Disease International (ADI)

ADI has recently published a position paper on COVID-19 with members of their Medical and Scientific Panel, which as their strategic partner, our Chair Kate Swaffer was asked to contribute as an author, and provide a quote. The global impact of COVID-19 is unprecedented, particularly on vulnerable groups such as people living with dementia and their families and caregivers. We hope that by sharing such information, we can assist persons and families in making informed decisions about how, when and where to seek help at this difficult time. You can read the full article here…

Within the article, several important topics are addressed:

  • Is COVID19 different for people with dementia?
  • Different countries’ guidance on how and when to seek further treatment
  • Difficult decisions around hospital admission and triage
  • Other information on COVID prevention and treatment and additional challenges to consider for people living withdementia
The World Health Organisaton (WHO):

The WHO provides daily updates and many other resources – https://www.who.int/emergencies/diseases/novel-coronavirus-2019 and including a very recently released publication for children – https://www.who.int/news-room/detail/09-04-2020-children-s-story-book-released-to-help-children-and-young-people-cope-with-covid-19

The following is a précis of recently received information from the WHO Working Group webinar on COVID-19 and Non Communicable Diseases (NCDs) webinar:

The United Nations three strategic priorities:
  1. Contain the spread of the COVID-19 pandemic and decrease morbidity and mortality (WHO SPRP/2)
  2. Decrease the deterioration of human assets and rights, social cohesion and livelihoods
  3. Protect, assistant and advocate for refugees, internally displaced people, migrants and host communities particularly vulnerable to the pandemic.
The WHOs three strategic priorities:
  1. Rapidly establishing international coordination and operational support
  2. Scaling up country readiness and response operations
  3. Accelerating priority research and innovation.

Links between COVID-19 and other Non-Communicable Diseases What we know so far:

  • People of all ages can be infected by COVID-19.
  • The risk of becoming severely ill with the virus appears to increase for people who are 60+.
  • People living with NCDs also appear to be more vulnerable to becoming severely ill with the virus, in particular people living with:
  • Cardiovascular disease (e.g. hypertension, persons who have had, or are at risk for, a heart attack or stroke)
  • Chronic respiratory disease (e.g. COPD)
  • Diabetes
  • Cancer
  • Smokers are likely to be more vulnerable to COVID-19

The International Disability Alliance (IDA) is providing many updates to the disability community, as well as hosting webinars and live Facebook chats. DAI has regular opportunities through the IDA to contribute to policy and publications about disability to ensure people with dementia are included.

Many other orgnaisations are hosting webinars and live Facebook chats; listing them here is difficult as there are simpy too many, and new opportunitiues from different organisations and individuals are emerign every day.

Please contact us if we can assist in any way.

What we can’t do alone, we can do together.

Human Rights in Residential Aged Care

Image source: Devon Bunce. Procuded as part of the Summit: Human Rights for People Living with Dementia

In this time of COVID-19, when everyone is being asked to keep a distance from each other, and to remain isolated, some groups in our community who already experience social isolation and confinement. This especially includes older people, and those living in nursing homes (residential aged care), as those providing care being encouraged to become more risk averse, benevolent and paternalistic in their approaches to ‘care’.

Different countries seem to have approached the safety and welfare of vulnerable groups in varying ways. For example. in the UK, we have heard anecdotal evidence from colleagues and members that doctors are prioritising the health – and lives – of younger people over older people, and we have heard of many deaths of older people in the UK because of this inhumane approach. In Australia, care providers were advised the following: “We got a sector email yesterday to providers to say that keeping disabled ppl locked up wasn’t environmental restraint if it was for ‘therapeutic’ purposes and on medical advice. “

In part due to these types of responses to the Coronavirus pandemic, DAI Chair, Kate Swaffer felt it timely to report on the current outcomes of a research project she was involved in at the University of Technology Sydney and the University of Wollongong.

The project is called ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’.

The aims of the project were to explore:

  • current barriers to liberty and community access for people living with dementia in RACFs; and
  • the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.

The three project outcomes of the project so far include a published article (open access online), an anthology and the project report, as attached below.

Journal Article* – Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes (2019)
Authors: Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Anthology – Human Rights for People Living with Dementia: An Australian Anthology (2020)
Edited by Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Project Report – Safe and Just Futures for People Living with Dementia in Residential Aged Care (2020)

Safe and Just Futures was funded by a Dementia Australia Research Foundation Victoria Project Grant, with additional funding support from Law Health Justice Research Centre, University of Technology Sydney.

The research team was led by Dr Linda Steele (UTS), with associate investigators: Kate Swaffer (DAI, UOW and UniSA), A/Prof Lyn Phillipson (UOW), Professor Richard Fleming (UOW), and , and research assistant Ray Carr (UTS).

The research team thank the presenters at the Summit who enriched what was learnt through the data. The project would not have been possible without all of their informed input and enthusiasm. They also thank the advisory group, including:

  • Dennis Frost
  • Tamar Krebs (Group Homes Australia)
  • Lynda Henderson
  • Elaine Pearson (Human Rights Watch)
  • Bobby Redman
  • Dubhglas Taylor
  • Eileen Taylor
  • Karen Williams (ADA).

*Reference in Chicago Style:
Steele, Linda; Swaffer, Kate; Phillipson, Lyn; Fleming, Richard. 2019. “Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes.” Laws 8, no. 3: 18.

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.

With Gratitude, by Christine Thelker

Image source: Christine Thelker

To my DAI family and friends,

As December arrives I wonder yet again where the year has gone; it seems I have lost much of what’s happened over the past year that we have arrived already to the place that will bring it to an end.

I’m grateful, it looks like I will make it to see another year in. It’s a time to reflect, to sit in quiet peacefulness; I don’t dare look too far beyond today, as Dementia has taught me we never know what tomorrow is going to look like.

This past year has seen many changes for me, I feel the decline, I know I am functioning different than a year ago, but I also know staying active, being engaged, are helping me to maintain in a better fashion that I might otherwise.

Every day, I marvel that my term as a DAI board member has been completed, where has the time gone, and am honoured to sit for another term. I’m not always sure if people understand the magnitude of commitment and belief I have in DAI and all that it provides. I will be forever grateful to the founders who worked hard to create a truly unique and necessary platform for people living with Dementia.

I live alone so it truly is a life line for me, and I was thrilled that in this past year DAI has added the living alone support group, it’s a great place for people living with dementia who are on their own to talk about their particular types of challenges and have support for those sharing them.

Over the last year, I have worked hard to reach out to has many people As possible and encouraged them to join DAI, and with everyone’s continued efforts and support we are seeing DAI continue to grow. This does my heart an soul a lot of good.

I also attended a capacity building event in L.A along with other DAI members, it was a great workshop, and we have since seen and continue to see DAI evolve. The DAI board is transitioning into a governing board, which is good for the organization as a whole going forward. We have more committee’s working which engages more of our members, which is also great to see….

Together we are stronger, and as people take on new and varied rolls the diversity will keep us a healthy organization.

I’m truly proud to be part of such an organization. 

I have also taken part in our continued efforts to advocate at all levels and was honoured to take part and present at the United Nations 12 annual COSP event, and then while there has been the opportunity to make a statement at the Ford Centre at the Woman and Disability Side Event. I left both of these events forever changed, and more determined to use my voice for as long as possible, and I’m so proud of the work that DAI does on behalf of all those living with Dementia in this regard.

I continue to write my blog, I have a book being published in 2020, and continue in my efforts to make a difference for all living with dementia, my next stop will be in Singapore at the Alzheimer’s Disease International Conference where I will do an Oral presentation as well as a poster presentation.

I’ve also become actively involved with Dementia Advocacy Canada as well and am thrilled that they are such strong supporters of DAI and are directing people with Dementia to DAI. I’m also involved with Trec, (which is a research program focused on developing solutions for improving the quality of care provided to nursing home … and four other research groups in an ongoing effort to make a difference.

My world is shrinking and yet growing at the same time, my life is nothing as it was, but it is rich and full because of the opportunities I have received through DAI. The friendships I have gained through DAI are some of the best I’ve ever had.

So, as Christmas approaches, I reflect. With gratitude and appreciation for all that Dementia has provided me rather than focus on all that is lost. As I reflect and look back, I realize that for all the days and times that I sit feeling like I’m not doing anything or that I’m not doing enough, in part because I forget what I’ve done, I have to remember, I do have dementia and what any of us do individually and collectively is nothing short of miraculous.

In closing I want to wish you all the very best of this holiday season and thank you for the privilege of serving such a great organization. I think 2020 is shaping up to be a year of great accomplishment for us all.

Blessings to all

Christine Thelker
DAI Board Member

My Christmas wish is that you will support people with dementia to attend the Alzheimer’s Disease International Conference  in Singapore in March 2020 by donating today.

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! 

 

#Hello, my name is Kate

Another #DAI #Hello story, this time from DAI co founder, Kate Swaffer.

Hello, my name is Kate Swaffer. I am the current Chair and one of eight co founders of Dementia Alliance International (DAI). I received a diagnosis of the semantic variant of Primary Progressive Aphasia just over 11 years ago at the age  of 49, although at the time I was told it was Sementia Dementia when first diagnosed.

The first 12-18 months were spent in fear and even thoughts of suicide. I cried for weeks, expecting the worst. My whole family loss hope for our future together.

Why? Well, not one person, including health care professionals told us there was still a good life to live, even with dementia.

Then through Dr Google, I met the late Dr Richard Taylor online, and first through his writings and then chatting via email and google hangouts,  I then started to realised my life could go on. I used to tell him often, he saved my life!

The other life saving thing that happened, was being at university as they simply saw me as a person with acquired disabilities, and supportd be via their Disability Services to continue to live my life!  This link takes you to an article I wrote about dementia, rights and disability.

Studying for me was a hobby, so it was meaningful, and fun. It also has the benefits of neuroplasticity, for which there is growing evidence for its value in terms of rewiring our brains.

Then, and now, most people have the very wrong misperception that a person diagnosed with dementia goes from diagnosis, almost immediately to end stage, almost overnight, even many of the health care professionals.

It may be at an unconscious level, but most people who are newly diagnosed are still being Prescribed Disengagement®, also a reason that keeps me motivated to contiue to be an activist for changing what happenes at the time of diagnosis, and campaigning for rehabilitation and other disability support for us all.

At best, we are told to get acquainted with community or aged care services, and to get our end of life affaris in order. We  rarely receive referrals to disability services, or other allied health professionals such as speech pathologists to suppot language and communication disabilities.

This lack of post diagnostic support is a major breach of o ur most basic human rights.

I’ve written books and many articles since being diagnosed with dementia over the years, and continue to do so, as well as being very involved in research about improving the experience of diagnosis and quality of life for all people with dementia.  I’m deeply grateful that Richard Taylor wrote and recorded a beautiful review of my first book, What the hell happened to my Brain: Livng beyond dementia.

My passion and goal is to empower people with dementia to live more positively and more independently with dementia, for as long as possible, rather than  to only go home and prepare to die via aged care. The other is to find a way for us all to work together globally, to advocate for global change.

Kate Swaffer © 2019

Note: Whilst many people know me, there are also many new DAI members who may not.  Hence, why I am saying #hello.

Please help us support more people 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.

Elder Abuse is everybody’s business

June 15  is World Elder Abuse Awaness Day, and as more than 90% of people living with dementia are over the age of 65, it is certainly a very relevant issue for our members and their families.

Hence, like many other organisations Dementia Alliance International joins the world in speaking out against all forms of abuse, neglect, segregation, incarceration, institutionalisation and exploitation of all older adults.

Our Elders matter.

The World Health Organisation says “… Because the numbers of older persons are growing, the amount of elder abuse can be expected to grow with it. While the taboo topic of elder abuse has started to gain visibility across the world, it remains one of the least investigated types of violence in national surveys, and one of the least addressed in national action plans.

Elder abuse is a global social issue which affects the health and human rights of millions of older persons around the world, and an issue which deserves the attention of the international community.”

The WHO Key Facts on Elder Abuse state:

  • Around 1 in 6 older people experience some form of abuse, a figure higher than previously estimated and predicted to rise as populations age worldwide.
  • Rates of abuse may be higher for older people living in institutions than in the community.
  • Elder abuse can lead to serious physical injuries and long-term psychological consequences.
  • Elder abuse is predicted to increase as many countries are experiencing rapidly ageing populations.
  • The global population of people aged 60 years and older will more than double, from 900 million in 2015 to about 2 billion in 2050.

A study done by Comparitech on the prevalence of Elder Abuse in the USA is deeply concerning, and we imagine studies inmost countries are likely to be much the same.

Key findings:

Only 1 in 23.5 incidents of elder fraud are reported to authorities, according to a 2011 report from the New York City Department for the Aging and Cornell University. Here are some of the key findings at a national level, based on that figure:

  • 1 in 10 elderly people in the US fell victim to elder fraud in the last year
  • More than 5 million incidents of elder fraud occur every year in total
  • The average loss per case reported to Adult Protective Services is $2,415
  • In total, losses due to elder fraud total $27.4 billion each year
  • 38% of fraud cases target the elderly
  • Debit cards were the most common product involved with elder fraud cases (32.9%), followed by credit cards (11.6%) and bank deposit accounts (10%)

Elder abuse is not unique to any country, and in Australia there is currently a Royal Commission in to Aged Care.

An article Australia’s elder abuse scandal ‘beyond belief’ published in September 2018, the following is of great concern.

Community leaders say the true scale of elder abuse is unknown but anecdotal evidence has suggested it is a dark and deep-rooted problem.

“It is a scandal beyond belief,” says Reverend Bill Crews from Australia’s Uniting Church.

“How we can behave to one another – when we are not watched by others – is beyond belief. It started with young people. It is now with old people. We are a society where love is vanishing and the inevitable outcome of that is a lot of pain.”

The rights of persons of any age, with any condition must be upheld, and it is very clear this is not the case for people with dementia,  or indeed older persons who require any form of assistance or care.

Elder abuse is everybody’s business!

 

DAI Statement by Christine Thelker #COSP12

Christine Thelker

DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.

Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health

Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.

Prepared Civil Society Statement:

Distinguished Chairs, speakers and delegates

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.

As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.

The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.

As one of the 50 million people with dementia, I am being left behind.

Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.

I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.

Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.

As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.

The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.

Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.

It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.

This is our fundamental right.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.

Thank you.

Christine Thelker

Board Member
Dementia Alliance International