Category Archives: Diagnosis

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 – 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’s the line for “extreme poverty”. 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 ‘Prescribed Disengagement’; 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 “Dementia and Employment: Give us a chance to remain employed” 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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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.

The importance of connections by Chrissy Thelker

For Day 8 of Dementia Awareness Month, we are thrilled to publish a blog about the importance of connections, written by DAI member, Chrissy Thelker.  #WAM2021 #DAM2021 Thank you Christine.

The Importance Of Connections 

By Christine Thelker
This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother.
Now for a little history; she and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support.
It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey.
DAI gives us that safe place to share to laugh to cry. To rediscover who we are after being devastated by receiving a diagnosis.
The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out.
I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being.
We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they to can offer that someday to someone. My friend thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
Together the impact we have on each other, for each other, is priceless.
So for Dementia Awareness Month, I challenge you all to think about the friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those of us who are living with dementia.
Christine Thelker 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

How to make dementia a rare disease by Dr Dale Bredesen

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, although we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia, we are also pleased to publish other content related to living with dementia.

Hence for today, we are publishing the video recording of a recent #DAI Brain Health meeting with guest speaker Dr Dale Bredesen, and also attach his power point slides. Professor Bredesen’s talk describes the first reversals of cognitive decline in patients with early stage Alzheimer’s disease and a recent successful clinical trial.

Dale is internationally recognized as an expert in the mechanisms of neurodegenerative diseases such as Alzheimer’s disease and other dementias, and the author of the New York Times bestsellers The End of Alzheimer’s, The End of Alzheimer’s Program, and the newly released The First Survivors of Alzheimer’s.

How to make dementia a rare disease

By Dr Dale Bredesen

 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

Dementia and Rehabilitation by Emily Tan Tan Ong

We are pleased to publish the following article written by DAI member Emily Tan Tan Ong on Dementia and Rehabilitation, or rather, the lack of rehabilitation for people with dementia.

Emily mentions in her article that rehabilitation for dementia is not heard of in her country; most other DAI members also report it is unheard of in their countries.

As our CEO Kate Swaffer says: “If we are afforded rehabilitation after a stroke or other brain injury or medical condition, then we have the same right to be after a diagnosis of dementia. It won’t be a cure, and may not even slow the progression, but rehabilition does improve quality of life.”

I keep the patients alive. Rehabilitation gives them Quality of Life. 

(Dr. Tagio Tumas, Ministry of Health, WHO Rehabilitation 2030 Forum, Geneva, July 2019).

Dementia and Rehabilitation, by Emily Tan Tan Ong

With no means to significantly modify the progression of dementia and no cure in the foreseeable future, the rehabilitation approach is an integral part of living positively with dementia.

Rehabilitation, in its essence, is a set of interventions needed when a person is experiencing limitations in everyday physical, mental, and social functioning due to aging or a health condition, including chronic diseases or disorders, injuries, or trauma [1]. It is estimated that at least 1 in 3 people in the world are living with a health condition that would benefit from rehabilitation [2].

Despite this, rehabilitation has not been prioritized and is under-resourced globally.

A possible explanation could be rehabilitation is often perceived as an expensive and specialized service provided at the secondary care level and needed by those recovering from injury or stroke. Hence, the perception that rehabilitation is a luxury health service in addition to primary health care has caused it to be undervalued and ignored when competing demands for resources and investments.

As a result, people living with terminal, progressive health conditions like dementia, which require long-term rehabilitation services, are left behind when rehabilitation is not part of or accessible at the primary health care level.

Earlier on in my journey living with dementia, I was having difficulties with some of the everyday functioning. I was confused at the public transport interchange, overwhelmed with sequential tasks like cooking and baking, and not able to remember the content of the paragraph I just read.

It is like saying, “Sorry too bad you are diagnosed with dementia but there is nothing we can help you to continue living other than attending Adult Day Care Center or Memories Cafe.  One is told that is the way life is going to be, living with dementia, losing one’s functional and cognitive abilities, and independence.

Hence, it is not surprising many newly diagnosed with young-onset dementia go into depression. It is emotionally tormenting to be alive and not able to do things when you still have insights into who you are, what you value, and how you want to live despite dementia.

Rehabilitation in dementia is unheard of in this part of the world where I live.

The” ESTEEM” cognitive rehabilitation program, a partnership between the National Neuro Institute and the Singapore Alzheimer Disease Association is available to individuals diagnosed with moderate young-onset dementia. Hence, I was left unsupported to cope with my cognitive impairment when Cognitive Rehabilitation (CR) interventions would have helped to ease in transitioning my life to the ‘new normal’ with dementia in a more positive and encouraging light.

I came across the GREAT Cognitive Rehabilitation project of Professor Linda Clare from the University of Exeter when looking for ways to self-help myself.

The program uses a goal-oriented approach to enable people living with mild to moderate dementia to “function optimally in the context of their intrinsic capacity and current health state” [3].

However, the GREAT project is delivered by trained therapists who then work together with each individual to formulate meaningful and intrinsically motivated goals that are realistic and potentially achievable. The drawback is that not everyone can access trained cognitive rehabilitation therapists.

The training materials available are for therapists specializing in cognitive rehabilitation. The content was wordy and conceptual, but I am determined to translate whatever information I could obtain into a self-help Cognitive Rehabilitation strategy. I took ages to read, comprehend the principles, and come out with ways to maintain or regain, or in some cases, compensate for my declining functional ability. It was the best thing I have done to sustain my independence and continue living the life I want. Three years down the road with dementia, I still cook, bake, and enjoy reading. I found that the Cognitive Rehabilitation strategies have enabled me to become stronger in areas I didn’t even consider would be possible. I learned to make bread at home, I regained my ability to use a laptop, and more apt at making Powerpoint slides. The best of all, I conquered my inadequacy and incompetency in writing. I now love to write for my blog.

I want to appeal to policymakers to acknowledge the rights of people living with dementia to rehabilitation services and make it part of the primary healthcare system. It is without a doubt that creating an accessible, dementia-friendly neighborhood help to remove external barriers to participation it is even more crucial to enable people living with dementia to participate in everyday life in a manner that is meaningful and purposeful to them. In this way, it also helps to dispel the public perception of incapacity in dementia.

References:

[1] Cieza A. Rehabilitation the health strategy of the 21st century. Arch Phys Med Rehabil. 2019; 100: 2212-2214

[2] Cieza A. et al.. Global estimates of the need for rehabilitation based on the Global Burden of Disease Study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 2006-2017

[3] Clare L (2017) Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med 14(3): e1002245. https://doi.org/10.1371/journal.pmed.1002245

Ps. Don’t forget to register for our next “Meeting Of The Minds” Webinar, Disrupted! Resiliently Reintegrating After Stress & Adversity by Dr Kozhi Sidney Makai.

Assoc. Professor James McLoughlin presents here on rehabilitation and dementia at a DAI Webinar hosted in 2016. It is still a hard sell!

 

 

 

 

 

 

 

 

 

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.

Wally Cox: Why I’m glad I found DAI…

This September, we celebrate Dementia Awareness Month 2020 #DAM2020  with a daily series of blogs, vlogs and podcasts, many of them from DAI members talking about why they are glad they found DAI. Many tell us that DAI is Life Changing.

On Day 1, we are thrilled to kick off our series with a video of DAI board member and support group co host, Wally Cox, and his wife and B.U.B. (Back Up Brain), Patricia, sharing why they are glad they found DAI. Thank you Wally and Pat. 

Please Donate to or Partner with DAI. 

John Sandblom: Improving Quality of Life

John Sandblom is a co-founder, Board member and the Treasurer of Dementia Alliance International (DAI). This is his keynote presentation at the opening Ceremony of the ADI Conference in Chicago. He shares the value of joining DAI, and of self advocacy.

“Improving quality of life for people with dementia” by John Sandblom

If you are watching this now, please consider donating to DAI. If you had been privileged enough to attend this conference and listen to John in persn, it would have cost you much more than the registration fee of more than $800 to attend the conference.

DAI is a 501 (c) 3 registered charity; a non-profit organization of people with dementia from 49 countries seeking to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Our activisnm for the human rights for all will continue.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Join DAI here

Or you can subscribe to our newsletter or weekly blog, by registering your email.

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” ( 2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the launch of the first UN Flagship Report on Disability and Development on the “Realization of the Sustainable Development Goals by, for and with persons with disabilities”The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.