Survey for people with disabilities in Asia or the Pacific

This online survey is anonymous and aims to understand whether and how people with disabilities in Asia and the Pacific are involved in disaster risk reduction.

It is your opportunity to express your biggest concerns and recommendations in relation to disasters, including at a time of a major health crisis such as the Coronavirus.

The responses will be used to develop recommendations to give to people who implement disaster risk reduction projects in Asia and the Pacific.

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Are you a person with disability living in Asia or the Pacific (including Australia and New Zealand)? We would like to better understand how disasters impact you through a10 minute online survey.

This online survey is anonymous and aims to understand whether and how people with disabilities in Asia and the Pacific are involved in disaster risk reduction, and what factors can help or hinder. You will be able to tell us your biggest concerns and recommendations in relation to disasters.  

The survey has been funded by the Australian Government. The responses will be used to develop recommendations to give to people who implement disaster risk reduction projects in Asia and the Pacific. 
 
The survey is available in the following languages: Auslan, Bahasa Indonesian, Bengali, Chinese (Mandarin), English, Easy Read English, French, Hindi, International Sign, Nepali, PNG Pidgin, Tagalog (some of these versions are not available yet so please check back soon if your preferred language is not yet available).

Click here for a link to the survey landing page.

Advocacy from GAROP

The Global Alliance for the Rights of Older People (GAROP) continues to advocate on behalf  of all older persons. Established in 2011, the Global Alliance for the Rights of Older People was born out of the need to strengthen the rights and voice of older people globally. They provided the following statement yesterday, for wide dissemination, and DAI thanks them for their work and comprehensive approach to the rights of all older persons.

146 States sign a joint statement of support for the UN Secretary-General’s policy brief

146 UN Member States have signed a new joint statement supporting the UN Secretary-General’s recent policy brief on COVID-19 and older persons. You can read the statement and see the list of supporting States here. This is an important development and useful for our advocacy.

FOR ACTION:

1. We encourage you to share this joint statement widely. You can consider using the following messages:

  • Thank your government for supporting this joint statement (or ask them why they have not supported it – it is important that governments know that civil society organisations are monitoring their actions).
  • Highlight the substantial number of supporting States from all regions of the world. This demonstrates growing international attention to older people’s rights and a clear consensus on the need to do more to protect these rights.
  • Encourage your government to support the ‘recommendations’ being negotiated remotely as part of the Open-Ended Working Group on Ageing (OEWG) process. This joint statement and the UN policy brief add to the global momentum building around older people’s rights and it is important that your government participates actively and has a voice in the OEWG process.
  1. In addition to this, you must contact me if you would like to add your name to our Open Letter to the UN Secretary-General. The letter now has over 120 supporters and this is growing every day. [DAI has today signed on to this Open Letter]

Official response to GAROP from the Director-General of the WHO

Please find attached the response received from the WHO Director-General to our letter of 20th April (also attached again for reference).

Thank you to those of you who followed up directly in support of our letter. You can refer to this official WHO response in your advocacy around older people and COVID-19.

The letter provides a helpful summary of how older people are currently included in the various WHO existing guidelines and resources. It also mentions the upcoming specific guidelines about older people. The GAROP Steering Group is considering our next steps and further opportunities for follow-up and collaboration.  Please get in touch if you have suggestions.

Further information

Ellen Graham
Secretariat Coordinator
Global Alliance for the Rights of Older People
Twitter: @GAROP_Sec

Dementia Action Plan: a first for New Zealand

Dementia Alliance International are delighted to have received permission to share with you the newly launched Dementia Action Plan for NZ, which we felt important to share this week following the 73rd virtual World Health Assembly in Geneva.

The Plan is the result of a collaboration between Alzheimers NZ, the New Zealand Dementia Cooperative and Dementia New Zealand.

The voices and input of over 300 individuals and groups have informed this important plan, which is to be launched in the media next week, an important the first step to encourage  government support and a long term commitment to dementia.

Read the Dementia Action Plan


Their statement:

Covid-19 has highlighted how much of a challenge dementia is for New Zealand. The number of people with dementia is growing fast and services are just not keeping up with the need. Indeed, after Covid-19 dementia will be one of the most significant issues facing our health system this century.

In response to the World Health Organization’s calls for action on dementia, many countries around the world are implementing dementia action plans. In light of this urgent need, the dementia sector has worked collaboratively to prepare a Dementia Action Plan for New Zealand.

We have sent the Dementia Action Plan to Ministers Clark and Salesa. This Plan is the culmination of effort from right across the sector. Our three organisations (the New Zealand Dementia Cooperative, Alzheimers New Zealand, and Dementia New Zealand), along with our wider Working Group, spent many months undertaking the formation, analysis, and consultation of this important document.

However, we could not have done it without the support of the dementia sector. Thanks are due to everyone who took the time to provide feedback on the draft Plan. The draft Plan was circulated widely and consulted on from November 2019 to January 2020. We had a combination of written correspondence, survey feedback, phone conversations, and face-to-face meetings, and we received information from over 300 individuals and groups.

The response was invaluable – and affirming. There was overwhelming support for having a Plan and for the vision, mission and action areas. We took the feedback on board, and the Plan improved as a result. A summary of the consultation response is provided here.

We expect Ministers will take some time to consider this, but we are confident that it will achieve our goal – to put a stake in the ground and a call to action from the sector for Government to follow-through on a commitment to dementia.

We know that there is a high level of goodwill and can-do attitude throughout the sector – and plenty of collaboration happening. We just need some political leadership now to bring everything together cohesively. And we can’t afford to wait too long. The very unfortunate reality is that Covid-19 has made life harder for people affected by dementia.

This is not just because of the personal impact of the crisis, such as the problems caused by lockdown and isolation, but the pandemic has created a range of long-term and significant financial and funding issues for charities such as local Alzheimers organisations.

Inevitably, this will affect the services they provide, and there is a very real risk that existing services – which are already woefully under-funded – will be further compromised.  The bottom line is that charities like ours must receive much-needed financial relief or the government must expect to shoulder much more of the community services load that we currently provide.

So, we stand ready, willing and able, right now, to work with the Ministry, District Health Boards, and across the community organisations to bring this into action. Covid-19 has brought the immediacy of the need for this Plan into sharp relief.

Having said that, we do understand that the world is currently going through an unprecedented scenario in dealing with the Covid-19 pandemic. Many organisations will continue to adapt their services over this time.

However: the principles and values of the Plan – and its role as a catalyst for change – remain the same. We know that ‘getting back to normal’ is probably a not really an option for much of our society – and we are eager for the innovation demonstrated in the sector to come to the fore in the way that this Plan unfolds.

Congratulations Alzheimer’s New Zealand

Discrimination Campaign – COVID19 #WHA73

The International Disability Alliance and the International Disability and Development Consortium have launched a Covid19 Discrimination campaign to call to raise awareness of examples of the discrimination that persons with disabilities experience in accessing services and call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.

The issue:

The one billion persons with disabilities are one of the most excluded groups in our society. The World Health Organisation and various other UN agencies are reporting that people with disabilities are being disproportionately affected by COVID-19.

The issue of discrimination is particularly pressing. Evidence suggests that persons with disabilities are among the hardest hit during the COVID-19 pandemic. Dangerous narratives have been emerging that people with disabilities cannot contribute to the response to COVID-19, make their own decisions and most worryingly, that their lives are not considered as worth saving compared to others – in direct contradiction of the UNCRPD and all other human rights instruments.

The Aim:

The campaign will raise awareness of examples of the discrimination that persons with disabilities experience in accessing services (such as health services) during the global pandemic. It will call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.

This phase of the campaign will launch to coincide with the World Health Assembly. The public facing elements of the campaign will support the advocacy statement given to the World Health Assembly. The campaign will use the World Health Assembly to highlight the particular barriers persons with disabilities experience accessing health services and why the need to act is so critical and urgent.

Key Campaign Messages:

  • People with disabilities are being disproportionately impacted by the COVID-19 pandemic.
  • Information is not being made available in accessible formats, so persons with disabilities are denied their right to make informed decisions.
  • Negative attitudes mean persons with disabilities are often considered less of a priority to receive critical health care, or their lives seen as worth less than the lives of persons without disabilities.
  • Social distancing may be particularly challenging for persons with disabilities who require support with personal care.

Persons with disabilities are also more likely to live in institutional settings, which have been shown to be an environment where the COVID-19 virus is exacerbated.

Physical buildings (including health facilities, and testing and quarantine centers) are often inaccessible, and reasonable accommodations like interpreters are often not available.
In many situation, COVID-19 health responses have hindered access to other health services for persons with disabilities. Often, these health services are important and lifesaving, such as rehabilitation services and medicine for people with epilepsy.

Women and girls with disabilities face additional barriers to accessing sexual and reproductive health and rights.

World Health Assembly Statement

The Seventy-third of the World Health Assembly will take place in Geneva, Switzerland from 17 – 21 May 2020. The WHA is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board.
The International Disability Alliance (IDA) and International Disability and Development Consortium (IDDC) members have submitted written statements to be considered under provisional agenda item 3 Address by WHO Director-General devoted to the COVID-19 pandemic response in advance of the opening of the Health Assembly.

Access the official statements here.

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Dementia Alliance International, a an organiszation representing the more than 52 million people with dementia, who are all people with acquited disabilities, thanks IDA and IDDC for their continued advocacy to realise the disability rights for us all.

WHO 73rd World Health Assembly: ADI Statement

WHO 73rd World Health Assembly Statement submitted by Alzheimer’s Disease International

Written statements exceptionally considered under provisional agenda item 3 Address by WHO Director-General devoted to the COVID-19 pandemic response in advance of the opening of the Health Assembly.

Honourable chair and distinguished delegates,

Alzheimer’s Disease International (ADI) is the global umbrella organisation of Alzheimer associations, representing over 100 associations and federations and in official relations with the WHO since 1996.

In light of the global COVID-19 pandemic, we would like to express several concerns on behalf of the 52 million people living with dementia globally, and the millions of others impacted by the condition.

Age is the biggest risk factor for dementia, and we know the elderly are the age group being most seriously affected by COVID-19. With that in mind:

1. In view of the widespread global shortages of medical resources, especially ventilators, it is vital that healthcare professionals have clear guidelines to facilitate extremely difficult decision making – often in pressurised triage situations – about access to treatment.

2. When available, such guidelines should not be used in a way which is discriminatory on the basis of age or of having a condition like dementia. The rights of people living with dementia and their families must be respected and upheld.

3. Families all over the world are faced with incredibly difficult decisions about whether or not to hospitalise a loved one, risking not acting in their best interest but often having to decide without medical training or knowledge. Governments should help families facing these situations.

4. Elderly people in long-term care, the majority of whom have dementia, have been hit particularly hard by the COVID-19 pandemic – with a great number of COVID-19 related deaths occurring in long-term care facilities. In many countries, long-term care is seriously under-funded. It is imperative that governments recognise the need to integrate and coordinate health and long-term care and to fund both equally.

5. It is essential that the mental health and wellbeing of our world’s elderly populations is supported, in particular because they are a group already at greater risk of social isolation, and social distancing measures will apply to them for longer. We call on all governments to include dementia in their COVID-19 response plans.

6. We implore all governments to support palliative and end of life care for all individuals, especially those living with dementia who may be distressed and unable to express pain.

7. Social distancing measures during the COVID-19 crisis are necessary to control the spread of the virus but have resulted in increased isolation and great disruption to people’s daily activities that contribute to brain health. As a result, we are concerned that the number of people experiencing cognitive decline may increase. We will continue to follow this nascent area of research, and to support the distribution and awareness of the WHO risk reduction guidelines.

8. People with dementia often have other non-communicable diseases (NCDs) including mental health conditions. The prevalence of these conditions is likely to increase as a result of COVID-19. This crisis has shown that the people living with NCDs are not given commensurate funding or support services.

9. Diagnosis rates for dementia have decreased during the outbreak as people are afraid to attend clinics. This will greatly impact on people’s prognosis due to later diagnoses and cognitive decline occurring due to lack of support or access to medication. In addition, more families will be unable to access timely information on the condition and receive adequate psychosocial support. As a consequence, stigma may increase.

10. The possible disruption to clinical trials could be particularly devastating for those living with dementia, given that there is currently no disease modifying treatment and disease progression will exclude participation.

11. The mortality associated with the pandemic will also impact dementia prevalence. The data on dementia-COVID-19 mortality is sparse, and we are concerned that the data around the number of people with dementia, who are dying in their homes, is not being recorded accurately.

We are concerned that the factors outlined above will undermine progress being made towards achieving the targets of the WHO’s Global action plan on dementia. We will continue to work with our member Alzheimer and dementia associations and the WHO to maintain progress, but it is essential that every Member State includes dementia in their responses to COVID-19. Otherwise, people living with dementia – who’s concerns are so often side-lined at the best of times – will be left behind.

 

 

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

 

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 

Wally Cox says #Hello

We recently had the pleasure of sitting down with one of our Board members, Wally Cox, to find out more about his experiences as a person living with younger-onset dementia. This interview is part of a new series we are doing at Dementia Alliance International (DAI) that explores the lived experience of people around the world who are living with any type of dementia.

Please donate today to our campaign to help raise funds to provide improved online support and services for our members and their families, who like Wally, all live with and are facing dementia.

This month, we are highlighting Wally’s story in honor of International Day of Families 2020.

Every year, the United Nations supports this worldwide observance on 15 May. The 2020 COVID-19 pandemic is a challenging social and global health crisis which brings into sharp focus the importance of protecting vulnerable individuals and families, as well as fostering greater equality for all.

DAI’s vision is a world where all people are valued and included.

We recognize that dementia affects not only people living with a diagnosis, but their families as well. In times of crisis, it is families who stand together, shelter one another, and care for one another. We applaud Wally and celebrate him as a person living with dementia who shows us the meaning and value of family in times of crisis.

Wally, tell us a little about yourself.

I live in northern California with my wife, Pat. We have three kids and two grandchildren and have been married since the day after Pat graduated from high school.

I was diagnosed with dementia at 62. The doctors have diagnosed me with a few different things including frontotemporal dementia and Alzheimer’s, because they are not quite sure what is going on.

Dementia runs in my family. My grandmother became senile (that’s what they called it back then) when she was in her late seventies. Fast-forward a few years and my dad – who was in his sixties – started exhibiting some odd behaviors and doing things that were seemingly out of character. It wasn’t until he got into his eighties that the doctors said he probably had dementia of some kind. That was about the time that I started having problems. And I also have a brother who has been diagnosed with Lewy body dementia.

Q: What impact has this had on your family, having so many generations of people needing care and people needing to be cared for?

My grandparents lived very simple lives and didn’t have much, so when my grandmother got sick, the burden fell on my parents to help her out. There was no support for my mother when she was caring for my grandmother. Finally, they put her into one of those homes. She was there for a few years, drifted away and then was gone.

My dad is a little bit of a different story because my mother was dealing with him by herself. When he got very hard to deal with, I built a house for him next door to me so they could live separately. They were not rich. They were middle class. Half of my mom’s income went to support my dad, and then she was living on the other half.

Years ago, I had been a caregiver for my wife. She had gotten really, really ill twice. The second time, to the point of death’s door. So when I became sick, we had already learned through experience a lot about being a person who needs care and a lot about being a person who gives care.

Q: What has that transition been like, going from care-provider to care-receiver?

After my wife got sick, I built emotional walls between me and her because I was afraid of having my heart ripped out when she died.

I felt like if I put some distance between us, I could survive losing her.

But through counseling and some really honest conversations, we got through that. In the process, I learned that I didn’t need to build walls. I needed to build connections.

When I got diagnosed with this disease, I became a person who needed care. My first reaction? To build walls again because I was ashamed of what I had.

The day I was diagnosed, she told me that she would never leave me, that she would always be there for me, and that she was with me to the end. Just like I couldn’t cure her, she can’t cure me. But she can be with me and that means a lot.

Q: In your opinion, what can we do as a nation and as a society to support and protect vulnerable people and their families in times of crisis?

I think that in the United States, we have done a pretty poor job as a government and as a society in understanding how to best do this.

The doctor who diagnosed me with dementia relocated to Palo Alto – a rather affluent area. He said that a lot of his patients, upon hearing that their mother or father has dementia, the first words out of their mouth are ‘We have got to find a [care] home for them’. As if they are disposable.

My wife’s aunt and uncle live in Tasmania. She has had a stroke and uses a wheelchair. They have all sorts of help – offered by the government – to help them stay in their home. People bring them meals. They come and help with the garden. They help with her care and get her showered because her husband is quite old – almost 90 – so he can’t do these things. The government has gone to extraordinary lengths to help them continue live in their home, which is actually a lot cheaper than if they had to go live in an elder care home.

The Tasmanian government is measuring success by being able to keep you in your home, and that does not seem to be the theme that we see in the United States.

I think that you’re measured by what you do to the least of you, how you treat the least of you: the most vulnerable, the children, the invalids, and the sick. As a person with dementia, what a lot of people don’t understand is that I still have feelings. I still have intelligence and the ability to relate. I forget things and I don’t always do things right, but I am a human being.

Q: In your experience, how does DAI make a difference in the lives of the families of people living with dementia?

As a support group co-host, I meet lots of new people.  Sometimes they come to our online support groups for a long time and sometimes just for one or two visits. But overall, the one response we have heard from people is that when they leave that meeting and are back with their families, they’re like a whole different person.

When you’re diagnosed with a fatal disease like this, you feel cast asunder and not really anchored to anything. You just kind of float around in the ocean of worry and concerns. Our support groups are a place where you can find rest. You share with your friends and you start looking forward to the next meeting, to the next week. You’ve got something coming up and you want to learn, and people make you laugh.

So, one way that Dementia Alliance International helps families is by helping people with dementia actually become better family members. I know that when I am less fatalistic and less depressed, I am easier to be around.

Also, caregivers get a break during our support group meetings. My wife knows I am occupied for that hour and a half. She gets the chance to do something else besides pay attention to me.

It also allows the caregiver to realize that dementia may not be as gloomy as first thought.

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This month, as we  highlight Wally’s story in honor of the International Day of Families, you can help Dementia Alliance International continue to represent, support and educate people living with dementia, their families, and the wider dementia community by donating to us to support more people like Wally.

In honor of International Day of Families, please show your support by donating today.

International Nurses Day 2020

We celebrate International Nurses Day around the world every year on May 12, which is the anniversary of Florence Nightingale’s birth. DAI also commemorates this important day each year to ensure nurses are honoured and recognised for their work.

Many of our members are retired nurses, and without nurses, many of the services we end up needing would not be available.

The World Health Organisation has also designated 2020 as the International Year of the Nurse and the Midwife, to recognise the important work they do, and the vital role they play in providing health services.

They also celebrated them on International Nurses Day, and DAI also celebrated and honoured nurses on World Health Day.

Today, Dementia Alliance International (DAI) is asking you to make a donation to support our important work, in honour of the many nurses in our organisation, and the work they have continued to do in supporting other so many other people also diagnosed with dementia.

Once a nurse, always a nurse!

Due to the Coronavirus pandemic, our sponsors may not be in a position to commit to further funding this year and beyond… We therefore need your help.

Please donate generously.

Back by popular demand: Montessori Principles to Improve Engagement

Presenters: Dr Cameron Camp & Gary Johnson

This DAI Webinar is back by popular demand, following the recent and very successful April Webinar. It is one event, set in a number of different time zones, and may not be available viewing after the live session.

DAY/DATE(S):

  • Tuesday, May 12, 2020 (USA/CA/UK/EU)
  • Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN)

Register here…

About the Webinar: This DAI “Meeting Of The Minds” Webinar is a repeat of the session we held on 29/30 April. It is a live event, not the recording of the first session, and both presenters will delve more deeply into the topic, and there will be time for Q&A.

These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.

How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®

About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.

About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.

Tuesday, May 12, 2020 (USA/CA/UK/EU):
  • 11:00 am Honolulu
  • 2:00 pm Pacific
  • 3:00 pm Mountain
  • 4:00 pm Central
  • 5:00 pm Eastern
  • 10:00 pm London/Glasgow/Dublin UK
  • 11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN/CHN):
  • 6:30 am Adelaide AU
  • 7:00 am Sydney/Melbourne/Canberra/Tas/Brisbane, AU AU
  • 5:00 am Perth AU/Taipei//Beijing
  • 9:00 am Auckland, NZ

The Webinar runs for 1.5 hours.  
Check your time if not listed above with this link.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners: FREE
  • HEALTH CARE PROFESSIONALS: FREE
  • DONATION TO ATTEND: $50.00 USD

Register here…

DONATIONS APPRECIATED

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE MEMBER OR STRATEGIC PARTNER.  

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI
Become a DAI Associate or Strategic Partner today
Volunteer for DAI

WITHOUT YOUR SUPPORT, DAI CANNOT PROVIDE THE FREE SERVICES CURRENTLY PROVIDED FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

World Health Day 2020: DAI Honours all nurses

It was World Health Day on 7 April 2020, and we celebrated the work of our nurses and midwives by reminding everyone of the critical role they play in keeping the world healthy. Nurses and other health care professionals (HCPs) are at the forefront of the COVID-19 response.

Frankly, without nurses, there would be no response to the COVID pandemic; without them, our lives would not be as safe.

Many DAI members were also qualified nurses or health care professionals, and although they cannot contribute to the current health crisis as nurses, due to having retired, their work has continued on through DAI.

Determination, service to others, empathy and compassion are the trademarks of all nurses. DAI salutes and thanks you.

Below we have shared some of the stories of a number of retired nurses wo are also members of DAI, not only to help raise awareness of the work done by nurses and midwives, but to raise awareness of the important work done by members of Dementia Alliance International (DAI).

Please support our work at this important time.

Listen to DAI Chair, CEO and co founder Kate Swaffer, on being a nurse, volunteering for DAI, and why we need your support.

Image source: Kate Swaffer © 1987

By Kate Swaffer: As a proud retired nurse, who has worked in aged and dementia care, and then operating theatres, it is heartbreaking to see just how hard our nurses are working globally to support the whole world through the COVID-19 pandemic, and this is too often without adequate infection control measures available to keep THEM safe.

Many people with dementia who take on leadership roles in DAI were also nurses or other health care professionals. It seems to be innately who ‘we’ are: helping others. In my life as a nurse and also a volunteer, which I have been doing since my early teens, DAI is the most important volunteer role I have ever undertaken.

Although I work at least as many hours every week as most other CEO’s, very often more, but without the same funding or respect as them, it is truly worthwhile leading an organisation that is so proactively working to support others with dementia to live more positively, and to advocate for human rights and disability rights.

But DAI needs your help. Without donations or partnerships, DAI could not continue, as we are not a well funded organisation; on top of that, we  still have no paid staff.

Image source: Maria Turner © 2020

By Maria Turner: “Apart from my family, my nursing career was everything to me, and I was devastated having to give it up. I had to retire from my work as a registered nurse after 30 years, and although I had spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and for Dementia Alliance International.

Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.

DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.

If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.

  • Do not ever let dementia define you.
  • Life doesn’t end with a dementia diagnosis, a new life begins.

Maria’s son Rhys also said: ‘Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.

This is in fact, why it is so important for people with dementia who were nurses to consider volunteering; whether it is at their local Red Cross or Church, or an organisation such as DAI.

It’s not just important it’s the fibre of our very beings.”

(includes excerpts from a speech given by Maria and Rhys at the ADI conference Chicago: Mother and Son)

Image source: Phyllis Fehr © 2020

By Phyllis Fehr: “As a person living with Alzhiemers and a former Intensive Care Unite (I.C.U.)  Nurse, I have always felt that this was a hidden and never talked about disease. When I was diagnosed I felt it was my new lease on life to change this so that other people living with dementia didn’t have to hide that they could have a voice and that we have support in each other.

During this time of COVID-19 it is never been more apparent to me that we need extra support. We all know what isolation feels like and to have this added burden of having to be isolated and not leave the house it’s very difficult, it’s a different kind of isolation. So I felt it highly important that we try and help people Living with Alzheimer’s and dementia to not feel so isolated, not feel so alone and to feel supported.

In my years of being a D.A.I. member the camaraderie and learning experiences that we have amongst us is absolutely phenomenal it helps me to get through my day-to-day life.

D.A.I. offers online peer to peer support groups. We learn from each other, we learn how to cope with the day-to-day challenges of living with dementia. We help each other to stay uplifted, we support each other in times of need and there’s no bigger need them at the present. So D.A.I. chose to add extra support groups during this time.  I think it’s been wonderful rather than having a once a week meeting we get together twice a week.

We help each other by saying what we’re doing to cope, so that others see that there still are ways to see your grandchildren even though they’re not in front of you. We discussed ways of helping us deal with our stress and anxiety over all of what’s happening and without these groups I don’t know if I personally  would be able to cope.

With my nursing background I know what is going on, I know how sick people are and I fear for other people who may get this disease. I also know that people with any type of dementia including Alzheimer’s are more vulnerable at this time and worry about getting this disease, so if we get any form of illness we all decline a little bit more and we’re all worried that if we get this where would we be.”

Image souce: Agnes Houston

By Agnes Houston: “I feel I was given a diagnosis and could either sink into the corner and be ‘done to’ or take control of my life. I feel like I am leaving a legacy for others so they can stand up and be a citizen, not a victim.” (extract from an interview for Elder Magazine, Seizing control of dementia)

Image source: Tracey Shorthouse

By Tracey Shorthouse: “Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Tracey is determined to keep her mind and her body active during the coronavirus pandemic with a variety of activities and hobbies at home…. In the old days, when I was a nurse, I used to use Davina McCall’s workout DVDs in a way to keep fit. She really inspired me. And I have started to do that again as it’s so important to keep my body moving.” (extract from the Alzheimers Society UK blog, ‘Life during lockdown’)

It is indeed important to keep moving at this time, and we recommend you contact your local gymnasiums, exercise physiologists, pilates or yoga instructors or other providers including physiotherapists, and ask if they have online group. Many are currently providing online telehealth visits like this for free.

Thank you for honouring nurses and midwives with us, and for your support.

We sincerely hope you will support DAI by donating or partnering with us. Thank you.