Category Archives: Alzheimer’s Disease International

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: ‚ÄúIt‚Äôs 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.‚ÄĚ

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 ‚Äď 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.‚ÄĚ

In an article I co-authored with Prof. Richard Fleming, Dr Linda Steele and others, we quoted Susan Cahill, who noted, the CRPD ‚Äėallows 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‚Äô.

Once we accept that ‚Äėdementia is a major cause of disability‚Äô 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 ‚Äď 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 ‚Äėcross-cutting principles‚Äô.

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 ‚Äď Thank you

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

  • We don‚Äôt 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.

Graeme Atkins wins the Richard Taylor Advocates Award in 2020

DAI is pleased to announce the recipient of the 2020 Richard Taylor Advocates Award, recognised on World Alzheimer’s Day 21 September 2020. This year it goes to DAI member Graeme Atkins from Australia for his outstanding service to others living with dementia, and his commitment to DAI’s ¬†mission and vision of a world where ALL people are valued and included.

Graeme was diagnosed with the younger onset Alzheimer’s type of dementia in 2009. He has been an advocate for improving outcomes for people ith dementia, in particular by composing and performing songs about being diagnosed, or living with dementia. ¬†Graeme says he can only do what he does, because of the love and support of his wife Susan, ¬†also lovingly known, as we now say in DAI thanks to our Chair Kate Swaffer, as his Back Up Brain.

DAI is proud to call Graeme their ‘Resident Rec. (or is that wreck?) Officer! Thanks for everything that you continue to do Graeme.

Since you’re here…

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

You can also read more of Graeme’s story here.

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 like Graeme today, by  supporting 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.

World Health Assembly 73: CS WG Statemen

 World Health Assembly 73 #WHA73

Due to the current COVID-19 pandemic, the 73rd World Health Assembly will be virtual. The agenda has been reduced to fit into two days, starting on Monday 18 May and concluding no later on Tuesday 19 May. It can be viewed live. The programme will cover:

  • Opening of the Health Assembly by WHA 72 President
  • Election of the President and five Vice-Presidents
  • Presidential address
  • Statements by invited speakers
  • Address by the Director-General (on COVID-19 pandemic response)
  • Statements by Heads of delegation on COVID-19 pandemic
  • EB: election
  • Closure/suspension (The WHA will consider suspending and reconvening later in the year to consider the remaining items on the agenda) 

WHO Civil Society Working Group on NCDs 
May 2020 Statement

The 36 members of the WHO Civil Society Working Group on Non Communicable Diseases (NCDs) commend the World Health Organization and Dr Tedros for his leadership as the world grapples with the coronavirus (COVID-19) pandemic. An empowered, well-resourced World Health Organisation (WHO) is essential to lead governments, other stakeholders, and people through these trying times. 

The COVID-19 pandemic has demonstrated more than ever the need for resilient health systems, especially ones that are equipped to respond to the growing burden of non-communicable diseases (NCDs). NCDs and their risk factors are exerting a heavy toll on health systems around the world, draining scarce resources even though they are largely preventable. The current public health crisis illustrates that health promotion is essential both for health emergency preparedness and sustainability of health systems, as is universal health coverage that ensures access to essential services and care without incurring financial hardship. Both COVID-19 and NCDs are indiscriminate actors, disproportionately impacting the poorest and most vulnerable people in all countries. 

Emerging evidence from the COVID-19 pandemic suggests that people living with NCDs and other chronic conditions – in particular hypertension and cardiovascular diseases, cancer, diabetes, respiratory diseases, obesity, and mental and neurological health conditions such as dementia – are at higher risk of severe illness or death from the virus. Yet, even in the midst of a public health emergency of international concern, companies that produce harmful products, such as tobacco, alcohol and sugar-sweetened beverages, continue to spread misinformation and deny the link between the harmful effects of their products and COVID-19 to protect their markets. 

We call on governments to ensure: 

‚óŹ NCDs prevention and treatment are included in national preparedness plans, beginning with inclusion of NCDs in national COVID-19 responses as part of global health security, acknowledging the links between COVID-19 complications and underlying chronic conditions. 

‚óŹ The continued delivery of routine chronic care, supplies of essential medicines and technologies, screening and diagnosis, access to resources, and supportive and palliative services for ongoing management of NCDs, mental health, and other chronic conditions. 

‚óŹ Precautionary measures are taken to protect both people living in care homes and other residential facilities and children, who may be predisposed to chronic, long-term morbidity due to COVID-19 infections, as evidenced by a multisystemic inflammatory response that may cause damage to multiple organ systems. 

‚óŹ Healthcare workers are recruited, trained, protected, and well-resourced to meet the current and future demand for chronic care and the COVID-19 pandemic. Special attention is needed to ensure the mental health and well-being of healthcare workers is supported. 

‚óŹ People living with NCDs and comorbidities, older people, young people, civil society and those most affected are consulted and meaningfully involved in the development, implementation, monitoring and evaluation of international, national, and local COVID responses. 

‚óŹ NCD prevention and health promotion continues to be prioritised to protect and strengthen population health and health systems, especially under ‚Äėlockdown conditions,‚Äô and is aligned with the WHO NCD Global Action Plan. Regulations and restrictions for industries that produce health-harmful commodities, including tobacco, alcohol, sugar-sweetened beverages, and fossil fuels, should be reinforced and not relaxed during the pandemic. 

‚óŹ Legally binding policies are created and implemented in collaboration with civil society for greater transparency, accountability, monitoring and enforcement in order to achieve good health and well-being for all, while preventing and addressing conflicts of interest. 

‚óŹ Particularly harmful products, such as tobacco and alcohol, are declared non-essential within pandemic responses with restrictions on availability and marketing. Physical activity and healthy diets should be actively promoted and supported, measures to reduce air pollution implemented rapidly, and food security should be addressed with due consideration to nutrition and health of diets. 

‚óŹ Engagement with unhealthy commodity industries is limited or ceased. This includes where there are real or perceived conflicts of interest through corporate social responsibility activities such as production and provision of PPE, sanitizers, processed food and beverages in care packs, new logistics partnerships, publication and reporting of pseudo-science, and political influence on policy. 

‚óŹ Digital health solutions are identified and scaled up by developing data systems that provide clear and accurate information for national health experts and the general public. 

‚óŹ Media are sensitised to report responsibly on health issues especially where misinformation is suspected, and to prevent uptake and promotion of such misinformation. 

The WHO Civil Society Working Group on NCDs and the NCD community remains committed to elevating the voices of civil society and people living with NCDs and supporting WHO and governments during this pandemic and in the post-pandemic recovery period. 

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Reminder to register for our second May “Meeting Of The Minds” Webinar, Safe and Just Futures in Residential Aged Care; Lessons Learned.

 

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Members of the World Health Organisatin (WHO)  Civil Society Working Group (CS WG) on Non Communicable Diseases (in alphabetical order):

1. Dr Monika Arora, Healthy India Alliance, India 
2. Ms Kwanele Asante, Our Views, Our Voices global advisory committee, South Africa 
3. Prof Naby Bald√©, International Diabetes Federation, Guinea 
4. Mr Stephane Besan√ßon, Sant√© Diab√®te, France 
5. Mr Enzo Bondioni, World Dental Federation, Switzerland 
6. Ms Chantelle Booysen, Youth Leaders for the Lancet Commission on Global Mental Health and Sustainable Development, South Africa 
7. Dr Beatriz Champagne, Healthy Latin America Coalition, Argentina 
8. Dr Stephen Connor, World Palliative Care Alliance, USA 9. Ms Katie Dain, CEO, NCD Alliance (Co-Chair) 
10. Dr Mitra Rouhi Dehkordi, The Association for International Sports for All, Iran 
11. Dr Ulysses Dorotheo, South East Asia Tobacco Control Alliance, Philippines 
12. Dr Ibtihal Fadhil, EMRO NCD Alliance, Iraq 
13. Dr Mychelle Farmer, NCD Child, USA 
14. Mr Juan N√ļ√Īez Guadarrama, Salud Justa, Mexico 
15. Sir Trevor Hassell, Healthy Caribbean Coalition, Barbados 
16. Mr David Kalema, Hope and Beyond, Uganda 
17. Mr Chris Lynch, Alzheimer‚Äôs Disease International, United Kingdom 
18. Princess Dina Mired, Union for International Cancer Control, Jordan 
19. Dr Mwai Makoka, World Council of Churches, Malawi 
20. Ms Narcisa Mashienta, Ikiama Nukuri, Ecuador 
21. Dr George Msengi, NCD Child, Tanzania 
22. Mr Christophe Ngendahayo, International Federation of Medical Students Associations, Rwanda 
23. Ms Leslie Rae, Framework Convention Alliance, Canada 
24. Ms Johanna Ralston, World Obesity Federation, USA 
25. Ms Belen R√≠os, O¬īNeill Institute for National and Global Health Law, Georgetown University, USA 
26. Prof Trevor Shilton, International Union for Health Promotion and Education, and International Society for Physical Activity and Health, Australia 
27. Dr Sudhvir Singh, EAT Foundation, Norway 
28. Dr Tara Singh Bam, International Union Against Tuberculosis and Lung Disease, Nepal 
29. Ms Anjali Singla, Movement for Global Mental Health, India 
30. Ms Kristina Sperkova, Movendi International, Slovakia 
31. Ms Charlene Sunkel, Global Mental Health Peer Network, South Africa 
32. Ms Kate Swaffer, Dementia Alliance International, Australia 
33. Ms Phaeba Thomas, HealthBridge South Asia, India 
34. Dr Nick Watts, Lancet Countdown on Health and Climate Change, United Kingdom 
35. Prof Gerald Yonga, East Africa NCD Alliance, Kenya 
36. Dr Yoshitake Yokokura, World Medical Association, Japan 

World Alzheimer’s Report 2020: Opportunity to contribute

Invitation from Professor Richard Fleming to contribute to the writing of the Alzheimer’s Disease International (ADI) World Alzheimer‚Äôs Report 2020

Every year Alzheimer’s Disease International (ADI) commission a major report. Last year the report focused on attitudes to dementia (https://www.alz.co.uk/research/world-report-2019 ) and the London School of Economics produced a groundbreaking overview of the stigmatization of people living with dementia.

This year ADI have commissioned Professor Richard Fleming to lead a team of experts in writing the World Alzheimer’s Report 2020 which will focus on Dementia and the Built Environment, looking at progress to date, best practice and innovation across home/domestic settings, day and residential care, hospitals and public buildings and spaces. The report will have a global perspective of dementia related design that takes a cross cultural approach, reflects regional and economic differences and low- middle- and high- income countries, and will consider urban versus rural settings. It will highlight the role of innovation, entrepreneurship and the importance of aesthetics.

Professor Fleming is committed to ensuring that the voices of people living with dementia are heard in this report. With the assistance of Dementia Alliance International (DAI) he is asking people living with dementia to nominate day care centres, residential care facilities, hospital units or public buildings that they feel provide them with a supportive and accessible environment. He is hopeful that the managers of these buildings will collaborate with a survey that will provide information for a case study that will appear in the report.

Professor Fleming is also asking people living with dementia to complete a brief survey about how they have modified their home to suit their needs. The involvement of DAI in this will provide a global snap shot of home modifications that is sure to stimulate discussion and the sharing of ideas on how to thrive at home. Below is the letter of invitation to participate from Professor Fleming.

Dementia and the Built Environment

I am very pleased to say that Dementia Alliance International is assisting me with the writing of the World Alzheimer Report 2020 on dementia related design of the built environment. Kate Swaffer is working closely with me on this project and we would like to invite you to contribute to it by identifying one or two buildings that you have found to be designed in a way that meets your needs.

I would like to invite you to nominate a residential aged care building, a day care centre, hospital, hospital ward or public building that, in your experience, has been very well designed to meet the needs of people with dementia.

Survey 1: If you are willing to do this please go to the survey link –¬†https://www.surveymonkey.com/r/DAI_buildings ¬†¬†and answer the questions there.

We would also like to invite you to contribute to it by describing any changes that you have made to your own home to make it more suitable for you.

Survey 2: If you would like to describe the changes that you have made will you please go to the survey and answer the questions there https://www.surveymonkey.com/r/DAI_Home .

The survey will also give you an opportunity to send some photographs to show the changes you have made.

I completely understand that you may not want to take part in this survey and I thank you for your attention so far. If you do choose to complete the survey please accept my thanks. I hope you find it interesting.

Yours sincerely

Professor Richard Fleming, PhD.
Lead author, World Alzheimer’s Report 2020

Supporting people with dementia through COVID-19

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

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

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

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

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

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

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

Alzheimer’ Disease International (ADI)

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

Within the article, several important topics are addressed:

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

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

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

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

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

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

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

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

Please contact us if we can assist in any way.

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

Extra support during COVID-19

 

 

 

In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.

Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships.  DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.

DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.

Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family,  attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.

An updated list of the DAI peer to peer support groups

Note: If you are not already in a DAI support group and wish to join one, please contact us at [email protected]

Weekly peer to peer support groups:

  • Mondays 1:30 PM CSTNEW GROUP¬†– co hosts Christine Thelker, Phyllis Fehr and Kate Swaffer, US/CA
  • Mondays 10:00 AM ACST ‚Äď co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC ‚Äď co-hosts James McKillop & Dennis Frost,¬†UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST ‚Äď co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor),¬†AU/NZ/SG
  • Thursdays 1:00 PM CDT ‚Äď co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT ‚Äď co-hosts Sid Yidowitch, Dallas Dixon & Kate Swaffer, USA/CA/AU
  • Fridays 2pm ACST – NEW GROUP – co hosts Kate Swaffer and Eileen Taylor, AU/NZ/SG
  • Fridays 2:30 PM CDT ‚Äď co-hosts Christine Thelker & Diane Blackwelder, USA/CA

Living Alone Social Support Groups

  • Sundays 5 PM GMC, co-hosts David Paulson & Julie Hayden, USA/CA/UK,¬†weekly
  • Sundays 5 PM AEST, co hosts Bobby Redman & Jo Browne, AU/NZ, ¬†NEW – now being hosted weekly

If you are not already in a DAI support group and wish to join, please contact us at [email protected]

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Tackling COVID-19: New Platforms and Resources

The World Health Organisation

The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.

They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.

Please find below a list of materials already published.

Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]

The Organisation for Economic Co-operation and Development (OECD)

As part of the OECD’s response to this crisis, they have launched a platform that provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.

Alzheimer’s Disease International (ADI)

Alzheimer’s Disease International (ADI)¬†is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.

Dementia Australia (DA)

In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19:

Tips for people living with dementia
Tips for carers, families and friends of people living with dementia
Tips for residential care providers
Tips for home care providers

LTC Responses to COVID-19: International Long Term Care Policy Network

Resources to support community and institutional Long-Term Care responses to COVID-19. This website has been assembled by a hopefully growing team of volunteers working on Long-Term Care research, to provide a space to bring together all those really useful resources we were spotting on Twitter. Please join if you can. Adelina Comas-Herrera (@adelinacohe).

Please feel free to contact us if you have other information or sites for us to consider sharing.

 

Managing the Coronavirus

 

 

Over the last few months, the impact of the Coronavirus (COVID-19)has taken its toll on many of us. We would therefore like to acknowledge the significant impact the coronavirus (Covid-19) is having on communities and individuals across the world, especially older people and those who are vulnerable.

Our thoughts go out to those who have been directly impacted by this crisis. Our concerns for the wellbeing of our members and their families, and of all others is paramount and we recognise that the indirect elements like self-isolation in response to Covid-19 will also have impacts on many advocacy activities.

The negative impact on people with dementia and our care partners and families has been significant. People with dementia are worried about contractng it, as out immune systems are often lower.

Care partners with a family member in a nursing home, many who are now not allowed to visit, or can only visit with strict entrance protocol, are rightlfully fearful of the potential for the person they love, to die alone, and that they will never see them again.

The necessary social distancing is something many people with dementia already live with on an almost daily basis, but it is definitely worse when the whole world has to do this.

Simple measures such as thorough handwashing, using hand sanitiser if in public places, as well as when you get back home, are sensible. If you do have to meet face to face, stay at least 1.5 metres apart, wash hands before & afterwards.

DAI sent an email to its members, and the full data base today, with various updates as well as notice of a couple of webinarsabout managing COVID-19 on later this week.

It may also be helpful to know that art galleries and other organisations around the world have started promoting virtual tours:

The World Health Organisation – COVID-19 –¬†is providing updates for individuals and organisations almost dail; sign up for their ¬†updates,¬†and¬†read more about what you can do to protect yourself and your family here…

Finally, you may want to watch this update from Professor Huali Wang, who is the Vice President Alzheimer’s China Association, and a member of the World Dementia Council. Professor Wang explains how China has addressed the specific challenges of people living with dementia during these unprecedented circumstances.

 

Seasons Greetings

We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.

As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.

From those early days of eight (8) founding members with dementia representing three countries, we have come a long way.  Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.

For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.

One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.

DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of¬†“A world where people with dementia are valued and included.”.¬†¬†

That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.

In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested.¬†

DAI is very proud to have recently partnered with Dementia Australia¬†(DA), which you can read more about¬†in our¬†Media Release. They are¬†the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.

In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.

We congratulate Dr Jennifer Bute on the recent release of her first book,¬†Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year¬†Somebody I Used to Know¬†continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs.¬†

DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.

Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and on receiving her Honorary Doctorate from the NUI Galway.

DAI continues to make submissions to governments on our rights, on dementia plans,  on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.

We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people. 

The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:

  • 2000: Dementia Advocacy Support Network International (DASNI)
  • 2002: Scottish Dementia Working Group (SDWG)
  • 2006: Alzheimer‚Äôs America Early-Stage Advisory Group (EAG)
  • 2012: Highlands Dementia Working Group (HDWG)
  • 2012: European People with Dementia Working Group (EUPDWG)
  • 2013: Dementia Australia Dementia Advisory Committee (DADAC)
  • 2013: Irish Dementia Working Group (IDWG)
  • 2014: Dementia Alliance International (DAI)
  • 2014: Japan Dementia Working Group (JDWG)
  • 2014: Southern (Kiama) Dementia Advisory Group¬†¬†(DAG‚Äôs)
  • 2014: NZ Dementia¬†Advisory Committee (NZDAC)
  • 2015: Ontario Dementia Advisory Group (ODAG)
  • 2016: Dementia Advocacy Awareness Team (DAAT)
  • 2017: 3 Nations Dementia Working Group (3NDWG)

It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.

Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.

There are only 15 days left to make Christmas REALLY COUNT, through the PayPal fee-free + 1% Christmas Donation deal. 

 

 

 

 

Media Release

November 28/29, 2018

Dementia Australia and Dementia Alliance International to globally champion rights of people living with dementia. Dementia Australia has formalised its relationship with Dementia Alliance International and today signed a new memorandum of understanding (MOU).

Dementia Australia CEO, Maree McCabe said the MOU recognises both organisations are aligned in their purpose to promote awareness and understanding of dementia and to advocate for the autonomy, independence and human rights of people living with dementia.

‚ÄúWe share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,‚ÄĚ Ms McCabe said.

Dementia Alliance International Chair, CEO and Co-founder, Kate Swaffer said the organisations would advocate together to expand the awareness and understanding of dementia across the aged care, disability and health care sectors in Australia and on the world stage.

‚ÄúTogether we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan‚ÄĚ Ms Swaffer said.

Dementia Alliance International is the peak organisation with membership exclusively for people with a medically confirmed diagnosis of any type of dementia from all around the world.

‚ÄúAs the¬†global voice¬†of¬†dementia,¬†Dementia Alliance International provides a platform for the many people living with dementia¬†who are capable of representing themselves, or speaking up for those who are no longer able to,‚ÄĚ Ms Swaffer said.

‚ÄúWe have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer‚Äôs Disease International, such as Dementia Australia, to empower others to have a voice.‚ÄĚ

Worldwide it is estimated there are 50 million people living with dementia. This number will almost double every 20 years, reaching 131.5 million in 2050.

‚ÄúAccording to Alzheimer‚Äôs Disease International research, someone in the world develops dementia every three seconds,‚ÄĚ Ms Swaffer said.

Dementia Australia is the national peak body and charity for people of all ages, living with all forms of dementia, their families and carers. Dementia Alliance International is the global peak body representing people with dementia.

‚ÄúDementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,‚ÄĚMs Swaffer said.

‚ÄúIt is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,‚Ä̬†Ms McCabe said.

For further information visit the Dementia Australia website at www.dementia.org.au or Dementia Alliance International at https://www.infodai.org.

Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and care partners. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au

Dementia Alliance International(DAI) is a collaboration of individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. DAI is a registered charity in the USA, and the global voice of dementia. https://www.infodai.org

Dementia is a Global and National Health Priority Area 

Media contacts:¬†Louise Handran¬†[email protected]¬†+61 490 128 304 / Kate Swaffer¬†[email protected]

When talking or writing about dementia please refer to Dementia Language Guidelines.

Image: Ms Maree McCabe, CEO, Dementia Australia and Ms Kate Swaffer, CEO, Dementia Alliance International, signing the Memorandum Of Understanding (MOU)

 

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