Category Archives: Alzheimer’s Disease International

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.

 

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’s 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’s)
  • 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.

“We share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,” 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.

“Together we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan” 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.

“As 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,” Ms Swaffer said.

“We have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer’s Disease International, such as Dementia Australia, to empower others to have a voice.”

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.

“According to Alzheimer’s Disease International research, someone in the world develops dementia every three seconds,” 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.

“Dementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,”Ms Swaffer said.

“It is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,” 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 dementiahttps://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)

 

Support Dementia Alliance International

Volunteer at Dementia Alliance International

Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living well with dementia. Thank you Jennifer for allowing DAI to publish this during September to help us raise awareness of dementia, and the fact that so many people can live positively with it.

Jennifer has represented DAI twice this year, giving presentions at the ADI Alzheimer’s University in London, and the photo we have added here was taken last week. See this tweet thread to read how well her presentation was received.

A Glorious Opportunity

Image source: ADI 2018

Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village.

Jennifer worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 12 years ago as she knew things were not right and was diagnosed 9 years ago with Alzheimer’s Dementia. This is her story.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‘mini stroke’ I lost the use of my left arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008, I developed auditory/visual hallucinations hearing children screaming babies crying and was seen conducting conversations with non-present people I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad whom I found on the internet had done work on Iris Murdoch and Harold Wilson so when he told me in 2009 I had Younger Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later Memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. Although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems and we can even reverse some of the decline.

I have started a memory group for folk where I live based on the Japanese model of using the three R’s (Reading Writing and Arithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead.

For me my Dementia is an unexpected gift, a wonderful opportunity and great privilege.

My husband was a great supporter until he died unexpectedly 7 years ago but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can do emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to also help others cope.  My son  set up my website gloriousopportunity.org and makes my educative films which are all available there to anyone.

There are no rainbows without rain!

Jennifer Bute © 2018

Please make a donation to DAI, so we can continue to support members like Jennifer.

Hello, my name is Carol Fordyce

On day seven of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.

This is me… Getting on with life!

Carol and Brian Fordyce

Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015. 

I had various problems and issues for over twenty years, which began in my mid thirties.

When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.

I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.

From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.

I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.

But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.

This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.

I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.

Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.

So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.

We have a great life even with DEMENTIA. You can too.

Carol Fordyce © 2018

Please consider making a donation to DAI, so that DAI can continue to support members like Carol

DAI in Chicago #1

Many of DAI’s members were in Chicago this year for ADI’s longest running international Conference on dementia.

We are proud of all of our members who presented at the conference, whether as invited Plenary speakers, as part of DAI’s panel session or in the concurrent sessions.

Everyone did a truly amazing job.

Or, like one of DAI’s co founders, John Sandblom, who presented in the Opening Ceremony! Our blog today is of Johns speech, and we thank him for representing us all so very well.

Johns speech notes are available to read below, although he did also ad lib quite a lot!

His slides are available here…

Improving quality of life for people with dementia

Slide one: Thanks to ADI for the invitation to be part of the opening ceremony for their 33rdInternational conference, and for sponsoring our stand in the Exhibition Hall. Thanks also to Alzheimer’s America for co-hosting the event.  When I first met Mr Harry Johns, the CEO of Alzheimer’s America, he said, please just call me Harry!

My sincere thanks of behalf of DAI to the Alzheimer’s Association of America for co hosting this event, and thanks also to the LEAD coalition for their sponsorship supporting our members to attend. Special thanks also to DAI members for their hard work in fundraising for us all to be able to attend this event.

As one of eight co founders of DAI, I am honoured to represent our members today, and to have been invited to speak.

DAI is an organisation which now focuses on many things, but our primary focus is on improving the quality of life for people with dementia and their families, and advocating for them globally for the realisatin of our human rights.

Slide two: This slide is one of DAI’s graphics, and is a global overview of dementia – based on data from ADI’s World Alzheimer’s Report in 2015, and the data on the WHO website this year.

Slide three: Dementia Alliance International is the global voice of dementia, and is a registered non-profit organisation whose membership is exclusively for people with a confirmed diagnosis of any type of a dementia, whose membership is now represented in 47 countries.

We seek to represent, support, and educate others living with the disease, and the wider dementia community. DAI is an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy, full and equal inclusion and improved quality of life, empowering people to live with dementia, not only die from it.

DAI has been in a strategic partnership with ADI since 2015, and we thank them for their ongoing support.

Slide four: The power of what DAI does is enormous and it helps improve the quality of life for  our members.

Slide five: DAI is very proud to it’s YouTube channel was listed in the top 20 dementia channels in2018.

Then briefly discuss how these platforms support our members through global online conversations

Slide six: DAI has made their global focus about campaigning for human rights and access to the CRPD at organisations such as the United Nations, Convention of the State Parties on the Convention of the Rights of Persons with Disabilities and the World Health Organisation.

Our mission is to empower people with dementia to live more positively with dementia, and to demand quality health care and disability rights. To fulfil this mission, we work with governments, other organisations and individual members of civil society to create change in programs, practices and policies that affect people with dementia and their families, now and into the future.

It is imperative there is NOTHING ABOUT US WITHOUT UT, and this is our undisputed HUMAN RIGHT.

Slide seven: DAI wishes everyone a successful and enjoyable conference.

Thank you.

John Sandblom
Co-founder, Board member and Treasurer
Dementia Alliance International