Category Archives: Alzheimer’s Disease International

Dementia care & palliative care webinar: during and beyond COVID-19

DAI is pleased to highlight a panel presentation by DAI Board member, Christine Thelker from Canada,  at an important webinar on dementia and palliative care during COVID and beyond. Thank you Christine, for speaking up for all of us.

All of the presentations and discussions were not only informative, they were extremely enlightening. Christine’s speech comes in at 4:40 mins in the video recording of the session:

Download Christine’s slides here, and read her speech notes from the ADIHelpAgeIntWHPCA Palliative Care Webinar below:

Dementia, Palliative Care and COVID-19

Slide 1: I would like to start by thanking ADI, for the invitation to offer my reflections on this important topic, and congratulate you on hosting this important webinar.

Slide 2: The topics I will cover today are

  • Palliative Care
  • Advanced Care Directive
  • The impact of the Coronavirus pandemic

Slide 3: DAI COVID-19 graphic of services, for reference.

For people with dementia like myself, we have been facing serious discrimination in terms of being denied health care, and  we are definitely never offered Palliative Care until the very end stage, this was and is the case long before Covid 19.

You can see that DAI have been very proactive in terms of providing support for people with dementia during the pandemic, and this slide highlights our support.

Because palliative care is based on individual needs, the services offered will differ. I have lived experience of palliative care, for myself, and for members of my family, and past professional experience working on Demetia units in Long Term Care in the nursing feild.

Since the covid pandemic, many people have not been able to access palliative care, and are therefore being denied adequate relief of pain or other symptoms of illness such as nausea and vomiting and others.

Resources such as equipment needed to aid care at home, Assistance for families to come together to talk about sensitive issues,Links to other services such as home help and financial support.

Support for people to meet cultural obligations, Support for emotional, social and spiritual concerns, as well as Counselling and grief support for them and their families has also been missing.

Many people are in fact, dying alone.

Slide 4:  I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself. As an advocate, I don’t just want to feel good about what I am doing, I want tangible change.

We are facing even more stigma and isolation since the covid pandemic, as are most older people.

Palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness, it identifies and treats symptoms which may be physical, emotional, spiritual or social.

As Kate Swaffer says: “People with-OUT dementia are not used to enforced isolation, or social and physical distancing, while people with dementia experience it from the day we dare to share our diagnosis.”

Isolation, stigma, discrimination and distancing (social and physical) are the daily realities of most people living with dementia.

We are all facing increased difficulties due to limited access not only to equipment, in home support, equipment including PPE, and health care including palliative care.

More people over 80 have died from covid, without access to Palliative Care, and without the support of their families, due to the restrictions imposed upon health care systems and society in general.

Covid 19 has highlighted that a great many people are experiencing personal signs of distress. This is a normal human responses to the pandemic, but one which has highlighted that people with dementia are having normal human responses or signs of distress to the changes forced on them by dementia – rather than BPSD.

Related to palliative care, is Advance care planning, which is more important than ever in these uncertain times. In the months ahead,thousands of people will face the prospect of becoming suddenly and seriously unwell. Distressingly, they will probably have to face being denied health care.

I’m concerned that many people do not have an Advanced Care Directive, mainly because they don’t understand that just because we tell our people what we want does not mean that will happen if its not on a legal document. and many people over 65 are without an Advance Care Directive, creates  serious and probmatic issues as we face the impact of the COVID pandemic.

An Advance Care Directive is important as nearly 50 percent of people who become ill, will not be able to make their own end of life medical decisions at this very difficult time in history,  although it may make no difference at this point as the elderly and infirmed, including people with dementia are being denied medical care.

This is an all too real, sad and sobering thought.

Again, this highlights yet another area we have failed our most vulnerable.

Slide 5: This slide highlights the services available from Dementia Alliance International. In closing, I want remind you of my quote from earlier that clearly states how I feel:

“I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself”.

THANK YOU.

About Christine Thelker:  Christine is a board  member of Dementia Alliance international having served as one for a number of years now. She also co-hosts a  number of peer to peer support groups. She is from Vernon British Columbia Canada, and describes herself as bright, fun and adventurous. Who at 59 says, her sense of humour has grown, since her diagnosis. Widowed at 47 and then diagnosed with Vascular Dementia and Cerebrovascular Disease at 56. Christine worked for Interior Health Authority for 13 years in various sites, most loved work was in Dementia Care and End of Life Care. It was here that she felt she did her best work.

Advocating for families and Patients, advocating for better training for workers working in Dementia Care, and although she says things still have not changed, she is hopeful with more people using their voices the changes will happen. She knows firsthand how people’s abilities are stripped instead of embraced and advocating is the only way to make change happen. She also advocated for better working environments for the workers. In June 2020, Christine’s first book was published, For This I Am Grateful, and she continues to advocate and write about the need for a human rights approach to dementia. Christine’s motto since diagnosis is “I’m not done yet”.

Dementia Innovation Readiness Index 2020

Expert panel launch the the Dementia Innovation Readiness Index 2020: 30 Global Cities.

Cities Around the World Need to Prepare for Innovations in Dementia, according to a New Report from the Global Coalition on Aging (GCOA), Alzheimer’s Disease International (ADI) and Lien Foundation.

Partners launched the Dementia Innovation Readiness Index to Challenge Cities to Develop and Adopt Innovations Across the Global Dementia Community, on October 8, 2020.

The Global Coalition on Aging (GCOA) and Alzheimer’s Disease International (ADI), in partnership with Singapore’s Lien Foundation, presented findings from the 2020 Dementia Innovation Readiness Index showing that cities have largely failed to support innovation in dementia comprehensively, though bright spots exist. 

By mid-century, the number of those aged 65 or older set to double, and nearly two-thirds of the world’s population will live in urban areas, up from just over half today. The number of older people in cities is growing faster than in rural areas, according to the OECD. 

Given these shifts across society, the need for local leadership to address dementia is clear, yet the Index findings suggest that cities around the world have not fully leveraged opportunities to support the development or adoption of innovations in dementia care, treatment and support and should take a leadership role in dementia innovation readiness. Rated on a 0-10 scale, the top five performing cities in the Index overall were London (8.4), Glasgow (7.8), Manchester (7.7), Amsterdam (7.5), and Vancouver (7.5). Top-performing cities tend to be in high-income countries with some level of nationalized healthcare, and a national plan in place that helps to promote innovation at the city-level. 

Among the 30 cities profiled, assessments reveal that London and Glasgow lead in strategy and commitment and community support for individuals living with dementia, as local associations play a pivotal role in the formation of the national response on dementia. 

“This year’s Dementia Innovation Readiness Index establishes the foundation for high impact, action-oriented initiatives to promote collective action from governments, industry, NGOs, academics and other leaders,” said Michael W. Hodin, PhD, CEO, GCOA. “Cities must rise to the challenge presented by global aging and build the capacity and opportunity to improve health outcomes for people living with dementia because they are at the forefront of innovation in their communities.” 

Measured against 26 indicators and across five categories, including strategy and commitment, early detection and diagnosis, access to care, community support, and business environment, findings revealed that while leadership is present throughout the global community to meet the overwhelming demands for quality dementia care, significant gaps persist. 

“The Index gives us a snapshot of how prepared some of our major cities are to embrace dementia innovation,” said Paola Barbarino, CEO, ADI. “During COVID-19 we have seen how important cities have been in managing the pandemic. With their large concentration of population, cities have an opportunity and a challenge to drive best practice. From a policy perspective, the Index provides a call to action for local and national governments to drive policies to better the lives of those affected by dementia and their loved ones.” 

The Index’s main findings include: 

  • Cities must take charge to execute against national dementia plans. Tasking ministries, agencies, civil servants, or other permanent policy bodies with implementing a plan at the local level can help to ensure dementia remains front-and-center, even as political leadership changes, and when plans are backed by adequate funding, they are a key enabler of dementia innovation. 
  • Cities must advocate for flexible and transparent funding models enabling regions and cities to adapt national programs and frameworks to local contexts. 
  • Cities need to know where they stand with regard to the number of people in the community living with dementia. Accurate, early diagnosis can help to ensure that people living with dementia are able to access high-quality care; that the progression of their disease is appropriately managed and monitored; and that they will be able to expediently access innovations in treatment and care as they become available.
  • National-level efforts to improve diagnosis rates for dementia should be aligned with the local community. One of the most common misconceptions about dementia is that it is simply a normal part of aging, and cities must be ready to deploy population-specific messaging, screening tools, and other resources that are adaptable to the diverse communities residing there. 
  • Post-diagnostic support is a highly localized but under-addressed opportunity for cities. City stakeholders can collaborate across the medical, social, and policy fields to ensure that locally tailored post-diagnostic support is in place and that healthcare professionals and other community service providers have the knowledge and training to connect people with relevant programs. 
  • Local governments and service providers must ensure that there is a sufficient supply of affordable and high-quality community-based care providers — including day care, respite care, and in-home care — so that people living with dementia are able to access needed resources. In areas where the care workforce is insufficient to adequately support people living with dementia, local stakeholders can help to build the workforce through training, increased access to educational and vocational services, as well as immigration, thus creating local jobs while solving for the impending care crisis. 
  • Cities should engage and fully leverage non-profit Alzheimer’s and dementia associations as experts in the community. 
  • Dementia-friendly principles are the tools and practices that make an organization, community, or society-at-large more accessible and livable for people with dementia, but they also enhance cities and improve quality of life for all citizens. 
  • Cities have a role in enabling new and existing funding models for dementia research. For example, venture capital funding (through organizations like the Dementia Discovery Fund) and social impact bonds by cities can spur innovation. Such efforts will serve as a catalyst for breakthrough research and offset the perceived risk brought by slow therapeutic progress and growing investor hesitancy toward dementia. 

The Index also identifies examples of leading practices – in cities large and small, developed and developing – across the five key areas of the Index, which can serve as a model for others in the global community. 

“Aging and urbanization are the twin defining trends of our time,” said Radha Basu, Research Director, Lien Foundation. “As societies age and dementia becomes more common, this Index issues a clear call to city-level leaders and help cities learn from each other on how to best manage this great, global challenge to health and social care.” 

Insights from the Index were informed by input from interviews and surveys with global key opinion leaders and subject matter experts (including scientists, advocates, researchers, clinicians, business leaders, and people living with dementia). As well as 

secondary research that was gathered from global authorities including ADI, the Organisation for Economic Co-operation and Development, the World Health Organization, and other publicly available sources. 

Click here to read the Dementia Innovation Readiness Index 2020: 30 Global Cities.

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.

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: 

● 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. 

● 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. 

● 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. 

● 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. 

● 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. 

● NCD prevention and health promotion continues to be prioritised to protect and strengthen population health and health systems, especially under ‘lockdown conditions,’ 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. 

● 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. 

● 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. 

● 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. 

● 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. 

● 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 Baldé, International Diabetes Federation, Guinea 
4. Mr Stephane Besançon, Santé Diabète, 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 Núñez 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’s 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 Ríos, O´Neill 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’s 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 – https://www.who.int/emergencies/diseases/novel-coronavirus-2019 and including a very recently released publication for children – https://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 – co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC – co-hosts James McKillop & Dennis Frost, UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST – co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor), AU/NZ/SG
  • Thursdays 1:00 PM CDT – co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT – 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 – 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.