Category Archives: Human rights

#EqualUN: Open Letter re CRPD Committee Elections

We are pleased to announce that Dementia Alliance International is one of more than 80 organisations and experts who have signed an open letter calling on UN member countries to protect gender parity and diversity of representation on the committee on the rights of persons with disabilities.

The letter was coordinated by Sightsavers and partners from Light for the World, GQUAL Campaign, Women Enabled International, CBM Global Disability Inclusion, the World Federation of the Deaf and the International Disability Alliance. It has been sent directly to each participating country’s permanent mission to the UN in New York.  

We signed onto this very important Open Letter to the United Nations to protect gender parity and diverse representation on UN disability committee.

We must ensure people with dementia are not left behind.

Dementia is a condition causing cognitive and mulitple other disabilities, currently affecting more than 57 million people globally, and their families. It also affects more women and girls, than men, making gender parity on the UN CRPD Committee even more critical.

Read the full open letter here:

Your Excellencies,

We the undersigned call on you, as a State Party to the Convention on the Rights of Persons with Disabilities (CRPD), to use your votes in the election of the new CRPD Committee at the Conference of States Parties in June 2022 to protect the gains made on gender parity on the Committee and to ensure it continues to become more representative and diverse in line with the intent of the CRPD.

In 2020, six women were elected and gender parity on the CRPD Committee was achieved for the very first time. This is in stark contrast to 2016 when no women were elected (resulting in just one woman sitting on the 18-member Committee), and all previous iterations of the Committee, when women were in a minority. States Parties must protect this progress.

The CRPD states in Article 34 (4) that in electing Committee members, consideration should be given to “equitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.”

As well as maintaining gender parity, we must ensure equitable geographical distribution and persons with diverse types of disability. To make progress towards an equal world for everyone, in both public and political life, it’s essential that the voices of underrepresented groups of persons with disabilities are heard, including women with disabilities, deaf persons, deaf-blind persons, persons with intellectual disabilities and persons with psychosocial disabilities.

At the Conference of States Parties in June 2022, you have an opportunity to protect the gains made in recent years on the CRPD Committee on gender parity, and drive progress towards representing the full diversity of voices of experts with disabilities. We urge all States Parties to the Convention on the Rights of Persons with Disabilities to cast their votes with this in mind.

Sincerely,

Coordinating group 

Sightsavers #EqualUN Campaign (UK/Global) 
Light for the World (Austria/Global) 
GQUAL Campaign (Global) 
Women Enabled International (USA/Global) 
CBM Global Disability Inclusion (Netherlands/Global) 
World Federation of the Deaf (Finland/Global) 
International Disability Alliance (USA/Global) 

The full list of signatures and the translated versions of the letter can be found here.

Note: These graphics were generously provided for anyone to dowlload to use for social media posts.

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

DONATE TO OR PARTNER WITH DAI TODAY

Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

The importance of Rehabilitation for all people with dementia

Watch our  webinar, The importance of Rehabilitation for all people with dementia,  now!

In September 2021, DAI hosted a series of four “Meeting Of The Minds” Webinars, specifically focused on rehabilitation for dementia. This was done as people with dementia have been campaigning for the full suite of rehabilitative interventions after diangosis for decades. At last, we appear to be seeing small actions towards actually achieving this basic human right, and what is deemed equal access to Universal Health Coverage.

The webinar was the final panel session of that series, with panellists Professor Lee-Fay Low, PhD, Sydney University, Dr Alexandra Rauche, from the World Health Organisation, Ms Emily Ong DAI member from Singapore, Ms Lynette Rogers, DAI member from Victoria, who lives in residential aged care, and DAI co founder Kate Swaffer who has been campagining for rehabilitation for dementia, and also for dementia to be managed as a condition causing disabilities for over a decade.

Rehabilitation helps individuals maintain and optimize independence. Historically, people with dementia have received little or no rehabilitation and the focus has been on care to replace lost function. It is now critical that health and social care professionals, service planners, policy makers, and academics embrace dementia rehabilitation.

There is a compelling case for rehabilitation for people with dementia, including the views of people with dementia and the research evidence. For each area of function, the research evidence and relevant theory is clear, and needs to be followed by practical information on clinical assessment, and delivery of therapies.

You can view the other Rehabilitation and Dementia webinars on our award winning YouTube channel here.

Since you’re here… … we’re asking viewers like you to support our members, by donating to our organization.

There are now more than 55 million people living with dementia, AND DAI is the global voice of people with dementia.

As the Coronavirus pandemic has caused everyone to operate in a virtual world, our work has never been more important.

Donate to or Partner with DAI today

Membership of, and services provided by Dementia Alliance International are FREE, and open to anyone with a diagnosis of any type of dementia.

If you are diagnosed with dementia you can join DAI here. 
Read our newsletters or regular blogs, by subscribing here

About DAI: Dementia Alliance International (DAI is a non-profit 501c3 charity of, by and for people with any type of medically confirmed dementia from around the world. We seek to represent, support, and educate others that living more positively with the condition is possible.

International Human Rights Day 2021

All human beings are born free & equal in dignity and rights.

Article 1: Universal Declaration of Human Rights

The International Human Rights Day is observed every year on 10 December. It commemorates the day in 1948 the United Nations General Assembly adopted the Universal Declaration of Human Rights.

2021 Theme: EQUALITY – Reducing inequalities, advancing human rights

Human Rights are universal rights of every human being to be treated with dignity, respect, and fairness. This year theme for Human Rights Day focuses on how rights are the beginning of peace within societies, and a way to create a fairer society for future generations.

Unfortunately, people living with dementia are often denied their human rights through subtle and indirect discriminatory practices, making it hard to tell when treatment contravenes their rights as citizens.

A typical example would be, being coerced into doing something on the pretext of being in “their best interest” as they are diagnosed or living with dementia. At this year Alzheimer Europe Conference 2021, Patrick Ettenes from the LGBTQ+ community spoke about multiple discriminations because of his sexual orientation and living with young-onset dementia.

People living with dementia and their care partners have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, religious beliefs, health status and those aspects directly because of their dementia.

Yet today, the fight against discrimination remains a struggle for more than 55 million people living with dementia globally.

  • The right to be free from inhuman and degrading treatment
  • The right to liberty on movement
  • The right to be free from discrimination including indirect discrimination such as unfair treatment and applying blanket policies
  • The right to respect for private life includes autonomy over their own lives, care, and treatment; participation in the community; access to and respect for private and confidential information
  • The right to respect family life includes maintaining family relationships and ongoing contact.

The human rights of people living with dementia lie at the core of Dementia Alliance International (DAI) advocacy work. In 2016, DAI launched the 1st edition of a booklet to provide a basic introduction to Human-Rights Based Approaches (HBRAs) – The Human Rights of People Living with Dementia: from Rhetoric to Reality.

The aim is to get people living with dementia to have basic knowledge of their human rights or to join forces with others to claim and hold their national dementia organization, as well as their governments, professional organizations, media and the general public, accountable and being fair in policies & service delivery, and full inclusion in civil society; “Nothing About Us, Without Us.”

Organizations, healthcare practitioners and individuals who care for people living with dementia, including informal care partners, must respect, protect and take steps that people with dementia have the right to make decisions for themselves whenever possible.

They have the right to be treated with dignity and respect, and live as independently as possible, for as long as possible.

#HumanRightsDay
#StandUp4HumanRights
#HumanRights4All

Donate to or Partner with DAI today

 

 

International Day of People with Disability 2021

The International Day of People with Disability #IDPwD is held on 3 December every year, and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability.

Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.

The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the 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. This year, our past Chair and CEO, and co-founder of DAI, Kate Swaffer writes about why she believes it is critical to manage and supporting dementia as a disability. Thank you Kate.

The Dementia Alliance International (DAI) membership joins the rest of the world on Friday 3rd December 2021 to observe the International Day of Persons with Disabilities. The theme this year is Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.

Dementia is a condition causing disabilities.

During this years celebration of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era.”, and  we are observing the challenges, barriers and opportunities for people who live with disabilities, in the context of a global pandemic.

My hope for this UN Observance Day is that dementia is a condition causing disabilities will be embedded into policy and practice everywhere. We must fight for this right, and interestingly, the covid pandemic has not only highlighted our experience of islation, discrimination and stigma, it has also highlighted how many of our rights are being denied.

Not to treat dementia as a condition causing acquired cognitive and other disabilities, is a major barrier to improving quality of life and reducing stigma and isolaton. To do so, is also an excellent opportunity to create real change.

As I continue to advocate about my continuing concerns of the lack of dementia being well recognised as a condition causing disability in academia, in policy and in service provision, I have to work har don retaining HOPE, which  members tell us joining DAI also gives them.

This is especially so, when for example, a research project is specifically concerning post diagnostic care, support and services, or quality of life for people living with dementia.

Since my own diagnosis of a younger onset dementia 13 years ago, I am becoming increasingly distessed by the lack of recognition of dementia as a disability and lack of proactive support for the more than 55 million people with dementia to live with more hope, and to live more independently for longer. 

People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to others refusing to accept that dementia is a condition causing cognitive and other disabilities, is systematically denying us proactive disability support at the time of diagnosis and takes away more hope of living positively with a diagnosis of any type or cause of dementia.

Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study…’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived many years, some even decades, beyond the projected life span they were given at the time of their own diagnoses, and many of these people say it is mostly due to managing dementia as a disability. 

Thankfully my university taught me to see the symptoms of dementia as disabilities and provided me with disability assessment and then very proactive disability support to keep living my own life, not too long after diagnosis. Of course, I did not especially like accepting another seemingly negative D-word. Accepting I had a diagnosis of dementia, and the stigma and discrimination due to the label of dementia was bad enough but accepting dementia as a disability initially added to my misery. 

However, this is a critical step that was hugely important in my ability to live more positively – and importantly, more independently – with younger onset dementia. 

  • Dementia is listed as a major cause of disabilityand dependence on the WHO website 
  • In 2010, the World Health Organisation launched the updated version of the WHO DisabilityAssessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated on their website under Dementia Facts, that dementia is a condition which is the leading cause of disability and dependence. (It now says a major cause)
  • People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disabilityservice)
  • Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first to do this for a person with dementia after my diagnosis
  • It is recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
  • The International Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognise dementia as a condition causing acquired cognitive (and other) disabilities
  • The WHO re-categorised it in 2017, as a condition causing cognitive disabilities (it had been listed under psychosocial disabilities before then).

If we ignored something as important as this in any other health space, everyone would be advocating for change. 

Whilst it may be unpleasant accepting a second D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially allows many more people to be distressed about their diagnosis for a shorter period, and to become more proactive about their diagnosis by actively seek disability support. 

Everyone has the right to knowledge, and to appropriate care and support.

Everyone has the right to be told that dementia causes disabilities. 

Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to live with them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone after a stroke. 

If a university can provide disability assessment and disability support for a person diagnosed with dementia to continue living – why then, is it so hard to by everyone else? I believe it is critical if we are ever to improve post diagnostic experiences for people more newly diagnosed with dementia.

Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, goes against their most basic humna right to knowledge about their condition.

Not to,  also denies them disability assessment and support soon after diagnosis and an awareness tht for many, it may be possible to maintain independence and a higher quality of life for much longer.

It is akin to not telling a person newly diagnosed with cancer there are treatments that may – or may not – work. 

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Watch our webinar “Cognition-oriented treatments for people with dementia” on YouTube

Available to watch now is the recording of the September Webinar, Cognition oriented treatments for people with dementia, by by Dr. Alex Bahar-Fuchs and Dr. Loren Mowszowski. It was one of four from our 2021 Dementia Awareness Month series of webinars focused on Rehabilitation for Dementia webinars.

“Cognition-oriented treatments for people with dementia”

This webinar was presented by Dr. Alex Bahar-Fuchs who is a clinical neuropsychologist and an NHMRC senior research fellow in the Department of Psychiatry at the University of Melbourne, and Dr. Loren Mowszowski who is a registered Clinical Neuropsychologist and NHMRC-ARC Dementia Research Development Fellow at the University of Sydney.

About this DAI “Meeting Of The Minds” Webinar

There are no known effective interventions to stop or reverse the progression of symptoms in people with dementia; however, many treatments are available to slow the process of decline, reduce the impact of cognitive and functional impairment, and improve the day-to-day experience, quality of life and confidence in people living with dementia.

In line with this, several high-quality Clinical Practice Guidelines for dementia rehabilitation around the world predominantly focus on recommendations targeting cognitive and mental functions, and a large body of evidence indicates that cognitively oriented treatments have shown promise in relation to cognitive outcomes. In this presentation, we will discuss the key features and evidence behind three main approaches to cognitively oriented treatments: cognitive training, cognitive rehabilitation and cognitive stimulation therapy.

The presentation included some practical examples of how the techniques underpinning some of these approaches can be used to support day-to-day activities. For health professionals, we propose key factors to consider when planning or implementing cognitively oriented treatments. Finally, the presenters proposed areas requiring future attention in research and clinical practice.

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

World Alzheimers Month DAI Webinar Series

World Alzheimer’s Month 2021 #WAM2021,  also known in some countries as Dementia Awareness Month #DAM or Dementia Action Week #DAW is almost here!

Lets’s all work together to make a difference.
#Collaborate #Cooperate #WorkingTogether

This year DAI has planned a series of webinars specifically focused on rehabilitation for dementia. We have done this, as people with dementia have been campaigning for the full suite of rehabilitative interventions for decades, and at last, we appear to be seeing small actions towards actually achieving this.

Last year, Professor Lee-Fay Low and A/Professor Kate Laver edited a book on Rehabilitaiton for Dementia. This year, the World Health Organisation has been working on their own Rehabilitation for Dementia Guidelines, so there is hope it will eventually make it into mainstream clinical and care practice.

Rehabilitation and Dementia #DAI Webinar Series 2021

  1. Webinar 1: Rehabilitation to maintain physical function, presented by A/Prof Michele Callisaya and Dr Morag Taylor
  2. Webinar 2: Living life to the full: rehabilitation of daily activities and leisure for people with dementia, presented by Associate Professor Kate Laver and Doctor Claire O’Connor
  3. Webinar 3: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski
  4. Webinar 4 Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Emily Ong, Lynette Rogers and Kate Swaffer

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI aims to highlight why.

REMINDER

Reminder to register for the two webinars this coming week too, both very important sessions exploring new ways of managing dementia.

  1. How to make Alzheimer’s a rare Disease!, by Professor Dale Bredesen, M.D.
  2. Updates In Precision Medicine and Protocols for MCI & Dementia, by Dr Nate Bergman DO, MBA

No decision about me without me by Emily Ong

Image source: Emily Ong

We are pleased to share this article about legal capacity, written by DAI Board member, Emily Tan Tan Ong,  from Singapore. For too long, the rights and voices of people with dementia have been ignored, on the basis of lacking capacity. Thank you Emily for speaking up for us.

No decision about me without me

A big issue that comes with a clinical diagnosis of dementia is the decision-making ability of the person. Often care partners and family would take on the responsibility of making decisions for the person living with dementia. While this is done with good intention or to make caregiving easier, it is against the rights of people living with dementia.

Section 3 -(1) of the Mental Capacity Act, sets out the following principles:

(2) A person must be assumed to have capacity unless it is established that he lacks capacity.

(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

(5) An act done, or a decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

[UK MCA 2005, s. 1]

As a person who spends most of her working life supporting learners with Special Educational Needs (SEN), I believed that the assumption of incapacity in dementia is a result of assuming that the inability to decide by people living with dementia is a direct cause of their cognitive impairments. It is like the way society assumed the difficulties faced by disabled people are a direct result of their physical, sensory, or cognitive impairments. The inability to make decisions is thus viewed as residing within the person’s cognitive impairments rather than seen as a mismatch between a person’s impairment and the expectations of their environment (UN Convention on the Rights of Persons with Disabilities [CRPD], 2006).

The 5 Principles of the Mental Capacity Act 2005 (Lambeth Council) https://www.lambethsab.org.uk/node/348

When the incapacity is conceived as part of the disease process and unfortunate life tragedy that happens to the person, it influences the way care partners and family members deal with the inability of their loved ones in making everyday life decisions including what to eat or what they want to do.

Take, for example, a person with vascular dementia, might not make a good food choice does not mean the person is incapable of making decisions. He or she might not know or remember that a bowl of ‘Bak Chor Mee’ (Minced Pork Noodles) can be unhealthy because it contains 511 calories per bowl, and if the person is not physically active or has mobility issues then it could easily lead to excess calories, resulting in chronic health problems.

Everyone does make unwise food choices, but we do not come in and take away the decision-making from the person. At most, if you are the spouse, you would nag on your partner, or if you are the child, you would advise and educate your elderly parents on eating well. The same mentality should be applied when it comes to supporting people living with dementia in decision-making.

As stated in Section 3.3 of MCA – a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. Therefore, it is imperative for care partners, whether informal or paid, to ensure that attitudinal and environmental barriers and communication barriers are removed, and practical steps have been put in place to support decision-making for persons living with dementia.

The attitudinal barriers can be in the form of language (verbal and body language) that carries a subtle or direct message of incompetency and incapacity. Over time it is natural for the person living with dementia to believe that he or she is incapable of making decisions, and thus, give up the right to make the decision that is not caused by their cognitive impairments.

The inability to make decisions can happen when someone living with dementia is not able to have the whole picture of the situation because of communication inaccessibility. Section 5.2 of MCA states – a person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). In such circumstances, the provision of other modes of communication would have enabled the person living with dementia to comprehend and make informed decisions.

A common issue for people living with dementia is working memory where it is difficult to hold given information mentally long enough to use it to make decisions. For instance, if I am in a supermarket where the pricing is stated in print form, I can compare the price between two packets of fish and make a decision. Whereas if I am in a wet market, it is so much harder for me to make an informed decision because I will not remember the pricing verbally said by the fishmonger. But my working memory issues should not penalize me as someone not able to make decisions. This is stated in 5.3 of MCA – the fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

Therefore, it cannot be assumed that a person with dementia lacks the mental capacity to make decisions. Many people living with dementia retains the mental capacity to make decisions about their day-to-day welfare such as where to live, what to eat, and what activities they want to engage in. Care partners (informal or paid) and family members should provide the person living with dementia the opportunity to consider the matter in the way he or she understands and make his or her own decision.

#nodecisionaboutmewithoutme

 

By DAI Board member, EmilyTan Tan Ong

Accessibility on Whose Terms

Accessibility on Whose Terms?

By DAI Board member, Emily Ong from Singapore.

“Museums disable me as a viewer. Everything, from the artworks to the explanatory texts, assumes a subject who uses their visual sense as a primary way of knowing, and I am a nonvisual learner who requires a different frame of reference.” – Carmen Papalia.

The quote resonates with me as someone living with dementia, a type of acquired disability. In most circumstances, my dementia condition does not limit my ability to participate fully in life. I am as capable as others without disabilities in carrying out my role as an advocate, advisor, and educator. However, I am often disabled from doing what I want or need to do because the mainstream environment can be disenabling and inaccessible for people like me.

In the past week, I have been working as an advisor with two local public transport providers in making the concourse area of two bus interchanges more enabling and accessible for people with disabilities, not limited to dementia per se. An accessible and enabling environment improves the quality of life for people living with disabilities, and it is a prerequisite for a truly inclusive society.

People with visual impairments like Carmen Papalia and those with Posterior Cortical Atrophy (PCA), a rare form of dementia, would find themselves in a disabling situation when the place they visit does not offer communication access options and prevents them from appreciating the exhibits in the museum. This is a type of ‘situational disability‘ that makes it difficult and almost impossible to participate on an equal basis with others and this leads to exclusion and marginalization.

The UN Convention on the Rights of Persons with Disabilities (CRPD) states clearly that persons with disabilities have the same rights as all other persons. To ensure persons with disabilities can claim their rights, services and facilities must be accessible and provided without discrimination.

© (2002). Michael F. Giangreco and Kevin Buelle. Farside cartoon. Reproduction and communication of this material is permitted under the Fair Dealing provision of the Canadian Copyright Act.

Very often the concept of ‘accessibility is narrowly defined when it comes to environmental design. There is a need to understand that an environment is made up of different domains and they are interconnected.

Take, for example, a person living with Primary Progressive Aphasia, would not be able to get much help at the Passenger Service Counter if there are no options of other modes of communication other than speaking. The person will not be able to benefit fully from the improvement of the physical accessibility of a place if the message cannot get across and be understood between the individual with speech impairment and the customer service personnel.

Good accessibility is built around the principle of an unbroken chain of movement, highlighted by the ‘RECU’ (Reach, Enter, Circulate, Use) concept:

  • Reach: Being able to get to the service you wish to use
  • Enter: Being able to enter buildings
  • Circulate: Being able to move about inside buildings
  • Use: Being able to use the services provided in the building

Let’s take the concourse area of a bus interchange, which usually has high traffic flow, high noise level, lots of information including advertisements, can easily cause cognitive and sensory overload for people like me. Practically every sound goes through my ears without much filtering and you can imagine the struggle I have when I seek assistance over the Passenger Service counter. I struggle to hear what was said to me because of the lack of sound-absorptive materials around the area. Hence, I avoid the Passenger Service at all costs and prefer, to ask for assistance from passing commuters if possible.

There are times when I become overly anxious due to disorientation, words are hard to be articulated as the muscles around the mouth tense up. In such a situation, I would prefer writing over verbal communication. A self-help kiosk that is easy to use and with a friendly interface would come in handy. Being able to access information is a huge part of maintaining independence for any individual.

However, the panel information board at the concourse area of a typical bus interchange is overloaded with information and font size that is too small to be handled by a brain that is cognitively impaired. It would be helpful if transport service providers can have bus route leaflets presented in clear and simple language instead of the ‘one-size fit all’ standard version.

Based on my experience as a commuter who heavily depends on bus and Mass Rapid Transit (MRT) services to get around doing my advocacy work independently, I would say:

  • Reaching the station is no issue because the pathway is well-linked and sufficient signposting to provide directional guidance.
  • Entering the station is no issue because there are built-in ramp and lift that I can take to overcome my visuospatial perception issues.
  • Circulating within the concourse area is usually a challenge for me if there is an absence of useful pictures or graphics to help me form a mental image of the place when I try to orientate and navigate around. Sometimes, the design and location of the facilities within the concourse area is non-intuitive and demands much effort to understand in order to find my way around.
  • Usage of the services and facilities for me is currently satisfactory with slight information inaccessibility. Alternative formats of route maps and guides such as audio maps, and big print maps would be useful and handy. Accessible Help Points buttons like the ones used in the London Underground are helpful in the event someone with a disability needs assistance from Passenger Service but far from the service counter or in the washroom area.

To sum up, accessibility involves removing the physical, communication, attitudinal, and institutional barriers faced by people living with all types of disabilities, including dementia.

However, to address the accessibility issues the presence and involvement of people living with disabilities in the accessibility project is indispensable and has to be on all levels: awareness-raising, dialogue, policy definition, advice, and assessment.