Category Archives: disAbility rights

Dementia and Employment, by Emily Tan Tan Ong

Dementia and Employment: Give us a chance to remain employed

By Emily Tan Tan Ong, DAI Member living in Singapore

Living with neurodegenerative disorders like dementia does not mean individuals suddenly lost their functional capacity and work skills upon diagnosis.

Unless it is Rapid Progressive Dementia, many of us continue to live well for a very long time as long as we do our part to stay physically fit, mentally active, socially engaged, and eat well.

However, there is one aspect of positive living that we need support and understanding from society. “Forced” retirement is the hardest blow to us with young-onset dementia. Many diagnosed with YOD have to quit because of their cognitive decline in particularly executive function skills.

There will be certain aspects of the functional capacities, which are no longer able to function at an optimal level. Skills like planning, time management, being organized, multitasking are commonly affected by cognitive deterioration. While it does impacts an individual’s productivity, efficiency, and effectiveness as a worker, the skills and experiences can compensate for functional declines.

The term “workability” refers to the relationship between an individual’s resources and job scope. According to the work ability model by the Finnish Institute of Occupational Health, there are four interrelated tiers: with a base layer consisting of personal health and functional capacities; the next layer is competence and skills; followed by the third layer personal values, attitudes, and motivation; and the topmost layer is work, referring to work scope, work environment, organization, and leadership.

Hence, it would be useful for any workplace to consider and decide the kind of work intervention needed to keep their employees living with mild cognitive impairment (MCI) or young-onset dementia (YOD). Beyond economic benefits, retaining the occupational role is vital to provide a sense of purpose in life and maintaining self-worth.

For this to work, the collaboration between the affected employee and the Human Resource Department is crucial. The employee has to feel safe enough to disclose the level of functional capacity without being discriminated against and judged.

The negative attitudes, which often based on stereotypes and myths, include people with dementia are unteachable and burdensome to have further worsened the employment situation. This perception can influence management decisions and implications for employee retention and retraining for job fit.

With an inclusive work culture and willingness to support affected employees to maintain their workability, this is a feasible practice. It is also a vital public health policy for the government to work on with the increasing cases of young-onset dementia over the years.

Reference:

Keeping people with dementia or mild cognitive impairment in employment: A literature review on its determinants by Fabiola Silvaggi et al., International Journal of Environmental Research and Public Health, 29 January 2020.

Human Rights Day

Ever year on December 10, we observe Human Rights Day, which is the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights (UDHR). This is a milestone document that proclaims the inalienable rights which everyone is entitled to, includign people with dementia. They are rights which must be afforded to all human beings, regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status. It is available in more than 500 languages, it is the most translated document in the world.

The 2020 theme is ‘Recover Better: Stand Up for Human Rights’

This years theme relates to the COVID-19 pandemic and focuses on the need to build back better by ensuring Human Rights are central to the global recovery efforts. We must all work together to create equal opportunities for all, and address the failures exposed and exploited by COVID-19. We must then ensure and advocate for everyone to apply human rights standards to tackle entrenched, systematic, and intergenerational inequalities, exclusion and discrimination.

Never before have the inequities and violations of human rights of those living with dementia and their families been so exposed.

Let us all ensure 10 December is our opportunity to collaborate, co-operate and work together to reaffirm the importance of human rights in re-building the world we all want, and the need for global solidarity as well as our interconnectedness and shared humanity.

Below we share the what the United Nations has outlined for us all, to work towards.

Human Rights must be at the centre of the post COVID-19 world

The COVID-19 crisis has been fuelled by deepening poverty, rising inequalities, structural and entrenched discrimination and other gaps in human rights protection. Only measures to close these gaps and advance human rights can ensure we fully recover and build back a world that is better, more resilient, just, and sustainable.

  • End discrimination of any kind: Structural discrimination and racism have fuelled the COVID-19 crisis. Equality and non-discrimination are core requirements for a post-COVID world.
  • Address inequalities: To recover from the crisis, we must also address the inequality pandemic. For that, we need to promote and protect economic, social, and cultural rights. We need a new social contract for a new era.
  • Encourage participation and solidarity: We are all in this together. From individuals to governments, from civil society and grass-roots communities to the private sector, everyone has a role in building a post-COVID world that is better for present and future generations. We need to ensure the voices of the most affected and vulnerable inform the recovery efforts.
  • Promote sustainable development: We need sustainable development for people and planet. Human rights, the 2030 Agenda and the Paris Agreement are the cornerstone of a recovery that leaves no one behind.

International Day of Persons with Disabilities

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

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

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

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

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

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

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

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

 

Video: Our rights under threat as we grow old

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

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

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

Speakers:

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

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

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

Human rights as a practice model in residential aged care, by Daniella Greenwood

DAI’s September Webinar on “Human rights as a practice model in residential aged care“, is presented by International dementia consultant Daniella Greenwood, who has a Bachelor of Arts (Hons 1), a Bachelor of Health Science (Leisure & Health/Therapeutic Recreation) and a Diploma of Diversional Therapy.

DAI is honoured to have had Daniella present on this very important topic to our audience.

About the webinar: Paternalism structures the lives of people living with dementia in residential/long-term care and diminishes their status as equal citizens. Person-centred and relationship-centred approaches have failed to address the deeply embedded philosophical and operational influence of the medical/institutional model and paternalistic assumptions. People living with dementia in these institutions continue to be treated as patients rather than as adult citizens, exposing them to regular, unchallenged and often casual breaches of their human rights justified as ‘best interests’ or as ‘interventions’ to manage what are commonly referred to as the Behavioural and Psychological Symptoms of Dementia.

The focus on ‘culture change’ has further obscured our urgent obligation to address the blatant and often state-sanctioned human rights breaches in residential/long-term care – which in any other care context would be regarded as profoundly unjust and, in many instances, illegal. A human rights lens is applied with practical examples outlining the possibility of creating an environment of recognition and true respect in long-term care through solidarity in aligning operations, attitudes, practices and processes with the United Nations Convention on the Rights of Persons with Disabilities.

About Daniella Greenwood: Daniella an international consultant, speaker and published author specialising in human rights policy and practice in long-term care. Her dissertation looked at human rights practice as it relates to citizen residents living in the later stages of dementia. She has presented her work to federal parliamentarians and as a keynote speaker including for Alzheimer’s Disease International in 2015 and Dementia Action Alliance in 2019. Daniella is also a musician who has composed and performed music to accompany some of Kate Swaffer’s poetry.

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

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

Join DAI here: www.joindai.org Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

Since you’re here… we’re asking viewers like you to support our members, by donating to our organization. With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important. Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.

Donating or partnering with us will make a difference to the lives of people with dementia.

Thank you.

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

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

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

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

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

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

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

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

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

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

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

World Alzheimers Report 2020: Design, Dignity, Dementia: Dementia-related design and the built environment

On day 23 of World Alzheimer’s Month/Dementia Awareness Month #DAM2020 we are pleased to share the Alzheimer’s Disease International World Alzheimer Report launched yesterday on World Alzheimer’s Day: Design, Dignity, Dementia: Dementia-related design and the built environment. Our  daily series is varied and we hope, relevant, and this topic is critical to the future of dementia care.

Increased awareness had been desperately needed of the potential of good design to improve equal access for people with dementia, and there has been increasing urgent global demand by people living with dementia to see this translated into practice.

The two volumes of the 2020 World Alzheimers Report have brought together the principles and practice, and will be an important resource now and into the future.

The webinar hosted by ADI was extremely well attended, with more than 1100 who registered, and over 600 people from 77 countries who logged in and attended the live event.

An important theme running through the webinar was around dignity – or the lack of dignity accorded to people living with dementia by certain design methods. Panelist Kevin Charras PhD showed a slide of different examples of this, stating: “It’s quite appalling when design relies on stigma and stereotypes of dementia. It turns into furniture that is vintage, colours and contrasts that are exaggerated, and signage that is triple in size, and streets inside buildings, which becomes very confusing.”

Watch the recording of the webinar here:

World Alzheimer Report 2020_Vol1

World Alzheimer Report 2020_Vol2

Kate Swaffer presented at the webinar, and has provided her slides here and speech notes below.

Disability Rights, Enabling Design and Dementia

Kate Swaffer, ADI Webinar, 21 September 2020

Slide 1 – Disability Rights, Enabling Design and Dementia

Thank you to Paola and ADI for launching such a critical report, and congratulations to the report co leads Richard, John and Kirsty for your a very impressive report.

It is very comprehensive, and I’m sure it will become an influential report into the future. Thanks also to Richard for the opportunity to contribute to it.

Slide 2 – Reframing Dementia as a disAbility

The World Health Organisation (WHO) clearly states that dementia is one of the major causes of disability and dependency among older people worldwide and through campaigning at the 2016 WHO Mental Health Forum in Geneva, cognitive disabilities were added as a fourth category under the mental health umbrella. Now that dementia is being described in UN documents as a cognitive disability, we are reminded that people with dementia are fully recognised by the UN as rights bearers under the CRPD treaty.”

In an article I co-authored with Prof. Richard Fleming, Dr Linda Steele and others, we quoted Susan Cahill, who noted, the CRPD ‘allows for a new and exciting dialogue to emerge, where the framing of dementia is no longer characterized by stigma, fear and exclusion, but rather, where the individual with dementia is viewed as a legitimate part of mainstream society’.

Once we accept that ‘dementia is a major cause of disability’ we understand it is a critical reason why it is so important the built environment for people with dementia is accessible, in the same way we provide wheelchair access.

With the rise of a disability rights movement for disabilities caused by any type of dementia, predominantly being led by people with dementia globally, we have come to understand the problem is not with the person with dementia, but about the environment being made accessible.

This of course, includes the physical and built environments.

Disability arises out of the interaction between a person with a health condition, and the environment in which they live and work.  A health condition causing disability can include a stroke or a diagnosis of dementia, a long-term health condition such as mental illness, or through losing a limb or another physical function due to an accident.

As this slide shows, we have icons that equate to action, including in most countries, legislation, for most of the more visible disAbilities – it is now time for the invisible disabilities such as sensory or communication disabilities, to be included in building design, and in the way organisations operate.

What use is my wheelchair, if there is no ramp or lift to allow me access?

Similarly, what use is it me going to the bank or supermarket, if the staff can’t communicate with me?

Not to provide equitable access, including through the built environment for everyone is like asking someone without legs to climb a flight of stairs.

Slide 3 – Human and Legal Rights

Even though people with dementia still retain the same rights as anyone else in society, including human rights and disability rights, there has been little change in the realisation of these rights.

A human rights-based approach is about making people aware of their rights, whilst increasing the accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

The WHO Global Dementia Action Plan for a Public Health Response to Dementia identifies human rights (and specifically the CRPD) as one of three ‘cross-cutting principles’.

The principles included in the Convention on the Rights of Persons with Disabilities and its Optional Protocol (CRPD) are clear; it is up to us to provide people with any kind of disabilities with the options to make those choices.

We cannot live with dignity, if we are not provided with access to live with dignity and respect.

We cannot participate equally, if we are not provided with the access to do so.

All of these principles are underpinned by the built environment, and our responsibility to ensure access to it, as we do with other disabilities.

The use of these principles allows a design to respond in different ways to people’s needs, preferences, lifestyles, cultural and socio-economic backgrounds, as well as the local climate and geography.

No longer can we pick and choose what rights we wish to uphold, or only focus on e.g. rights to dignity or health, which when interpreted do not disrupt the current medicalised approach to dementia;

Disability rights and disability access matters to me; in fact I cannot maintain my independence without it.

I hope they also matter to you.

People with physical disabilities have made major progress as substantial, influential members of society.

Yet we are still being left behind, not only in terms of health and social care, but in terms of recognition and the management of dementia as a condition causing disability and therefore of legislated disability support including enabling and accessible built environments and communities.

What this means is that people with cognitive disabilities caused by dementia are still being denied the most basic access to live independently in their communities.

Slide 4 – The built environment and disability

The environment’s influence in creating disability or in increasing it has been well established and is seen as integral to the definition of disability and is integral to the definition of disability. When the built environment changes, then the experience of someone living with a disability will also change.

The paradigm change introduced many decades ago by the disability rights movement has made modifying the built environment for accessibility commonplace, and in most countries, legislated. We are all so familiar with accommodations for physical disabilities that it is rarely an issue, as accessible bathrooms, guide-dogs, assistive listening systems, or wheelchair ramps are available almost everywhere.

As the image of this wheelchair shows us, even wheelchairs are being made much more accessible than when they were first in use. This is how we must view the built environment too, as we need equitable access for all.  We know that most people who have dementia or who are older and require assistance with our daily activities, would prefer to continue to live in their own communities and stay in their homes, and society has a responsibility to ensure equal access as all of its citizens.

Slide 5 – Thank you

We must all work towards ensuring the built environment for people with dementia is accessible.

  • We don’t need more reports or more rhetoric.
  • What we really need now is ACTION.

Thank you.

Kate Swaffer, MSc, BPsych, BA, Retired nurse
Chair, CEO and co-founder, Dementia Alliance International
Board member, Alzheimer’s Disease International

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

 

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia to have a voice, by  supporting DAI.

Emily Tan Tan Ong shares why she is glad she found DAI

On day 8 of the #DAI Dementia Awareness Month series of blogs or vlogs on why members are glad they found DAI, and  why DAI is Life Changing, Emily (Tan Tan) Ong shares with us why she is glad she found DAI.

Emily also shares how DAI has so positively impacted her self avocacy and courage, and her advocacy for others also living with dementia in Singapore and beyond. #DAM2020

Thank you Emily. We are glad you joined DAI.

 

Reminder: the Monday Science Podcast Dementia Series is Fundraising for DAI

#DAIisLifeChanging

GLAD Call TO Action: A Call To Rebuild a Future Inclusive of All

Dementia Alliance International signed on this week to the GLAD Network (the Global Action on Disability) Call To Action: A Call To Rebuild a Future Inclusive of All.

We are one of many organisations supporting this important Call to Action to all stakeholders to include persons with all types of disabilities in the response and recovery phases of the Covid-19.

The letter below confirms our endorsement of this important Call To Action, and includes links to the Call To Action and other information. Please also note, the Call to Action is still open for endorsement by all stakeholders and GLAD would welcome endorsement by additional partners using this form.

Dear Kate,

The co-chairs of the Global Action on Disability (GLAD) Network – the United Kingdom Department for International Development, the Norwegian Ministry of Foreign Affairs, and the International Disability Alliance – would like to extend our sincere gratitude for endorsing the Call to Rebuild a Future Inclusive of All. The Call to Action demands the inclusion of persons with disabilities in the response and recovery phases of the COVID-19.

Please be informed that your organization’s logo has been included  in the official Call to Action document, which can be accessed here.

The Call to Action is still open for endorsement by all stakeholders and we would welcome endorsement by additional partners. To invite your partners, please feel free to share with them this page where more information on the Call to Action and its endorsement can be found.

If you have any questions, please do not hesitate to contact us.

Thank you very much.

Sincerely,

Penny Innes, Head, Disability Inclusion Team
United Kingdom Department for International Development

Jon Lomøy, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance