Category Archives: CRPD

#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 ‚Äúequitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.‚ÄĚ

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 ‚Äėof, by and for‚Äô 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 ‚Äėabout us, without us‚Äô.

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 ‚Äėdry‚Äô 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‚Äôs 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‚Äôt have an unconscious biases impacting their ability to work within the ‚Äėnothing about us, without us‚Äô philosophy, or hidden personal agendas which we do not fit with DAI‚Äôs 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.

‚ÄúNothing about us, without us.‚ÄĚ

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 ‚ÄúMeeting Of the Minds‚ÄĚ 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‚Äč and newsletters; ‚Äč‚Äčhence¬†there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

World Day of Social Justice 2022

February 20 is World Day of Social Justice, a commemorative event that has been held since its first proclamation by the United Nations General Assembly in 2007. The underlying principle is to promote gender equality and social justice for all as stated in Our Common Agenda.

Social justice is closely aligned with human rights and is about fairness ‚Äď ensuring equality for all people.

The major social injustices affecting the world today:

  • Racial Inequality: Systemic racism in societies around the world has resulted in significant inequalities: job opportunities, housing, healthcare, and legal representation are all affected.
  • Gender Inequality: Discrimination based on gender affects education, jobs, and healthcare. Women and girls are also vulnerable to human trafficking and intimate partner violence.
  • LGBT Inequality: The lesbian, gay, bisexual and transgender communities are uniquely vulnerable to violence and discrimination. Discrimination impacts legal protections, marriage equality, healthcare, and job opportunities.
  • Economic Inequality: According to the World Bank, over 700 million people live on less than $1.90 per day. That‚Äôs the line for ‚Äúextreme poverty‚ÄĚ. In the wake of the COVID-19 pandemic, the World Bank estimates that between 40-60 million could slip below the poverty line.
  • Unequal Access to Education: While education is the key to unlocking better job and income opportunities, accessing good education is very challenging for certain populations. In areas like south-eastern Asia and sub-Saharan Africa, wide disparities still exist.
  • Climate Injustice: Those who are disproportionately impacted by climate change are countries which have the lowest carbon-emission.

The theme of World Day of Social Justice 2022 is Achieving Social Justice through Formal Employment, and it focuses on employment resources and opportunities as a prerequisite in reducing poverty and inequality.

At Dementia Alliance International #DAI, we observe World Day of Social Justice because social injustice is rampant when it comes to people living with dementia and their families. As a global organization, DAI has been raising its voice against social injustice and advocating #HumanRightsForAll and United Nations Convention on the Rights of Person with Disabilities #CRPD.

There is a strong biased assumption that post diagnosis employment is not possible for people with cognitive impairments, even those of us with mild dementia. In the workplace, individuals are seen as incompetent workers and regarded as a liability rather than an asset to the organization.

One of the harmful myths of dementia, is an automatic assumption of incapacity which is made early and without any kind of evidence-based assessment of the person’s capacity, knowledge, and ability for continued employment in a specific role. As a result, it is not unusual for these individuals to be made redundant or dismissed for incompetence.

On contrary, there are many individuals and advocates living with dementia who have taken up voluntary or part-time work when provided with accessibility to resources and appropriate support. These examples clearly demonstrated that people living with dementia had the capacity to lead and perform, knowledge to share and ability to remain in the workforce for a duration of time after their diagnosis. DAI is a living proof of such example where people living with dementia lead and manage the organization on day-to-day basis and provide support services to their peers with support from few volunteers.

Continuing employment after post-diagnosis is essential and beneficial because the occupational role not only provide financial satisfaction but more importantly it helps to reduce the risk of depression, prevent loss of identity and self-worth, and loss of social networks. Hence, individuals living with mild dementia must be supported in the workplace through reasonable adjustments and accommodation while they adjust to their diagnosis and make plans to retire when they feel it is time to do so. Continued post-diagnostic employment can be realized when i) healthcare professionals stop ‚ÄėPrescribed Disengagement‚Äô; ii) employers see it is their responsibility to support workers diagnosed with cognitive impairments to remain in the workforce; and iii) the workplace has an inclusive culture that respects diverse range of ability.

You can read more about ‚ÄúDementia and Employment: Give us a chance to remain employed‚ÄĚ published on the DAI blog on February 13 2021.

REMINDERS OF UPCOMING EVENTS:

1. The 2022 DAI Global Rally Summit, Age With Rights! DAI is hosting a Live Facebook event as part of this rally, which you can join  us here. Read more information about it on our blog here.

Registration is not required; simply join us on the DAI Facebook page for this live event at the times listed below.

Thursday, 3 Mar 2022

  • 2:00 pm PST
  • 3:00 pm MST
  • 4:00 pm CST
  • 5:00 pm EST
  • 10:00 pm GMT

Friday, 4 Mar 2022

  • 6:00 am SGT/AWST
  • 8:00 am AEST
  • 8:30 am ACDT
  • 9:00 am AEDT
  • 12:00 noon NZDT

2. The Global Alliance for the Rights of Older Persons is also hosting a webinar on the 3rd March from 10:00-11:00 ET / 16:00-17:00 CET. There will be interpretation into Spanish, and is hosted by the IFA, and supported by the Soroptimist International. The Summit will showcase the campaigning that is taking place around the world for older people’s rights as part of the Age With Rights Global Rally ahead of the 12th UN Open-Ended Working Group on Ageing session. Click here to register. Click here to download the flyer.

3. Save the date for the next DAI “Meeting Of The Minds” Webinar: ¬†My Life, My Goals: a self-help guide for people living with dementia, by Professor Linda Clare. Registration link and other details coming soon.

4. The 2022 Regional Forum on Sustainable Development for the UNECE region. The deadline for registrations is 18 March 2022, 23:59 (CET). Sessions opened for registration are:

  • 6-7 April 2022: Hybrid plenary sessions¬†of the Regional Forum.
  • 6-7 April 2022:¬†Hybrid¬†peer learning sessions¬†clustered around five SDGs: SDG 4 – Quality education, SDG 5 – Gender Equality, SDG 14 – Life below water, SDG 15 – Life on land, SDG 17 – Partnerships for the goals.

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DAI Facebook event: Age With Rights 2022 Campaign

The DAI ‘Age With Rights’ Global Rally 2022

There are an estimated 55 million people diagnosed with dementia globally, and estimated 42 million who do not have a formal diagnosis. Dementia is also a major cause of disability and dependence globally, and effects women and girls more than men. In Australia, it is the leading cause of death for women.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Women carers compared to male carers, are more often unemployed due to their unpaid role; girls who are carers also often miss out on education.

Older women, especially widows, can be exposed to what has been termed a ‚Äėtriple jeopardy‚Äô discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

This is partly why DAI is joining the Global Alliance for the Rights of Older People Age with Rights rally being held in advance of International Women’s Day this year.

This is partly why DAI joined the Global Alliance for the Rights of Older People (GAROP) ‚ÄėAge With Rights‚Äô campaign in February 2021 to present a unified, visible presence and amplify the voices of older people and civil society organisations in the virtual 11th session of the UN Open Ended Working Group on Ageing (OEWG11) session held in April 2021.

We hope you will join our panelists Kate Swaffer, Emily Ong and Lyn Rogers for a live Facebook session on ageing with rights.

Registration is not required; simply join us on the DAI Facebook page for this live event at the times listed below.

Thursday, 3 Mar 2022

  • 2:00 pm PST
  • 3:00 pm MST
  • 4:00 pm CST
  • 5:00 pm EST
  • 10:00 pm GMT

Friday, 4 Mar 2022

  • 6:00 am SGT/AWST
  • 8:00 am AEST
  • 8:30 am ACDT
  • 9:00 am AEDT
  • 12:00 noon NZDT

Check for your time here if not listed above.

The slogan was developed in close consultation with GAROP members, including Kate Swaffer, DAI’s co-founder and Human Rights Advisor who is a member of GAROP. The first month of the campaign saw the United Nations Department of Economic and Social Affairs (UNDESA) adopt the campaign‚Äôs slogan #AgeWithRights in their social media. The campaign successfully captured the lived experiences of dozens of older people globally and utilised this to boost advocacy both in OEWG11 and at the national level. The campaign continued to grow throughout 2021:

  • More than 70 advocacy videos from older and younger people worldwide posted online and shared by social media
  • ‚ÄúAgeWithRights‚ÄĚ rallying cry incorporated into position statements and tweets by civil society organisations and national human rights institutions
  • Dozens of people using the #AgeWithRights‚ÄĚ hashtag on their social media profiles
  • Invitations to discuss and showcase the campaign at various human rights forums with growing interest from many in getting involved

Goals of the Global Rally

  • Activate more advocates globally to join the movement by raising awareness of older people‚Äôs rights and a new UN convention
  • Mobilise new and existing advocates to advance local, regional, and thematic advocacy activities in support of older people‚Äôs rights and a new UN convention
  • Push forward in rallying governments to support the implementation of the Human Rights Council Resolution recommendations (A/HRC/RES/48/3) and the drafting a new UN convention (as proposed at OEWG11)

Themes

The overarching message is the important role that a new UN convention would play in strengthening the protection of older people’s rights and urging governments to support this. Linked to this, you can focus on themes that your organisation or network specialises in or has an interest in. You could choose to focus on the themes for the 12th OEWG session, which include the

  • ‚ÄėRight to work and access to the labour market‚Äô,
  • ‚ÄėAccess to justice‚Äô, and the new themes of
  • ‚ÄėEconomic security‚Äô and
  • ‚ÄėContribution of older persons to sustainable development‚Äô.

Exploring intersecting discrimination with campaigners from other areas of human rights is strongly encouraged as a way of building allies, diversifying, and reaching new audiences (example, older women, older people with disabilities, older LGBTI+ people, Age-Friendly Cities networks, etc).

Older people around the world face particular challenges in enjoying their human rights. Governments have recognised that this includes, among others, protection against violence, abuse and neglect, the right to food, housing, work, education, and health and care[1]. Older persons clearly face discrimination and negative treatment on the basis of their age[2] and this can be made worse by other forms of discrimination based on gender or disability for example.

There are very few explicit references to older people’s rights in existing international human rights treaties. These treaties do not cover all aspects of older people’s rights and are unclear about how human rights apply in older age[3]. International agreements and policy frameworks dedicated to older people and ageing, such as the Madrid International Plan of Action on Ageing, have also proven to be inadequate and incapable of protecting older people’s rights[4].

The solution we are calling for is to create an international legally-binding ‚ÄėUN convention‚Äô on older people‚Äôs rights. A new UN convention would provide governments, service providers, businesses, civil society and older people everywhere, with the clarity and guidance we need to build a more equal society for people of all ages and ensure respect for our human rights as we age. It would result in greater accountability for and monitoring of older persons‚Äô rights.

 

 

 

 

 

[1] A/HRC/RES/48/3 – E – A/HRC/RES/48/3 -Desktop (undocs.org)

[2] https://rightsofolderpeople.org/wp-content/uploads/2015/03/In-Our-Own-Words-2015-English.pdf

[3] https://social.un.org/ageing-working-group/documents/eleventh/OHCHR%20HROP%20working%20paper%2022%20Mar%202021.pdf

[4]https://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=20848&LangID=F

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 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¬†‚ÄėLeadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world‚Äô.

Dementia is a condition causing disabilities.

During this years celebration of people with disabilities, the 2021 theme is ‚ÄėFighting for rights in the post-COVID era.‚ÄĚ, 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 ‚Äėgo home, get my end of life affairs in order, give up work and give up study‚Ķ‚Äô and even ‚Äėto get acquainted with aged care so I would get used to it‚Äô, 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 ‚Äď and importantly, more¬†independently ‚Äď 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 ‚Äď 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 ‚Äėresidual (and other) disabilities‚Äô 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 ‚Äď 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 Рor may not Рwork. 

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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.

A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM¬†and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

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By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

How people with disabilities due to dementia are marginalised

We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.

On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;

‚ÄúFrom isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization‚ÄĚ

How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?

Phyllis Fehr

As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.

These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.

I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I  can no longer care for myself.

Some people with Alzheimer‚Äôs ¬†disease [or other dementias] are unable to understand what‚Äôs happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community ‚Äď where the paid care staff are able to learn, have human rights training and have a better understanding of the person they‚Äôre caring for. That way they are seen as an individual not as a patient.

Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions.  It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.

The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.

We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.

We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.

Thank you for your time.

Phyllis Fehr, 2021

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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