Tag Archives: Kate Swaffer

International Women’s Day 2022

Today is International Women’s Day, and for the 2022 Dementia Alliance International blog, our focus is on the reality that dementia affects more women and girls than men and boys. The International Women’s Day #IWD2022 campaign theme is #BreakTheBias

This year, DAI joins the Global Alliance For the Rights of Older People #AgeWithRights campagin rally, with an event being on March 15/16, 2022. Please join us, to help #BreakTheBias. Follow this link for details and to register.

Woman, girls and dementia #IWD2022

By Kate Swaffer, DAI co-founder, 8 March 2022

  • Imagine a gender equal world.
  • A world free of bias, stereotypes, and discrimination.
  • A world that is diverse, equitable, and inclusive.
  • A world where difference is valued and celebrated.
  • Together we can forge women’s equality.
  • Collectively we can all #BreakTheBias.

On the International Women’s Day Website, we are asked to imagine a gender equal world. A world free of bias, stereotypes and discrimination. A world that’s diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women’s equality. Collectively we can all #BreakTheBias.

  • Celebrate women’s achievement.
  • Raise awareness against bias.
  • Take action for equality.

According to the World Health Organisation, there are an estimated 55 million people living with dementia globally, there are 10 million new cases each year, and dementia is currently the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.

Dementia also affects woman and girls, disproportionately to men and boys. In Australia (2020), it was listed as the second leading cause of death nationally for men and women, and the leading cause of death of women. In Canada, about two-thirds of Canadian living with dementia are women. According to Dr Kiely in 2018, women with dementia outnumber men 2 to 1 globally, and brain scans tell us that the rate at which brain cells are dying in the brain is faster in women than in men. In the US, it was also found that two-thirds of clinically diagnosed cases of dementia and AD are women, according to U.S. most European reports, and although it appears complex, female versus male longevity it not the only reason for this disparity.

A 2015 report by Alzheimer’s Research UK, “Woman and dementia: A Marginalised Majority”, it was the 5th leading cause of death, women more likely to have Alzheimer’s disease or another form of dementia, and “Between 60 and 70% of all unpaid dementia carers are women.”

In an Alzheimer’s Society UK blog written by Sherena Corfield in 2018 about women in rural areas demanding more action, she wrote, “Women are disproportionately affected by dementia than men. It’s the biggest killer of women in the UK. Despite this, it remains a hugely misunderstood health condition. This is particularly apparent for women in rural parts of the world, who often face the most extreme stigma due to a lack of awareness.”

The Australian Royal Commission into Aged Care found, found that apart from all of the other forms of violence, abuse and neglect in residential aged care in Australia, they estimated that 50 people every single week are being sexually violated; most of them are women with dementia.

As DAI seeks to represents the more than 55 million people estimated to be living with dementia and those people receiving a new diagnosis of dementia every 3 seconds, and works hard to empower people to get back to living, rather than go home and get their end of life affairs in order, as most people are advised to do. We also want to keep raising the issue that there is gender bias, and that dementia affects more women and girls than men.

We highlight again what we wrote on our blog for IWD2021:

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

As a female with dementia, I now not only experience continuing discrimination and stigma due to being female but the added stigma and discrimination due to a valid diagnosis of dementia, as well as ageism, as dementia is still seen as an older person’s condition.

If I thought I was invisible as a woman before, having dementia as a woman is like wearing a Harry Potter Invisibility Cloak!

By Kate Swaffer © 8 March 2022 #IWD2022
Co-founder, Dementia Alliance International

DAI Board Announces Resignation of CEO Kate Swaffer

The DAI Board Announces Resignation of CEO Kate Swaffer

It is with a mix of sadness and gratitude that the Board of Directors announces Ms. Kate Swaffer’s resignation as Chief Executive Officer of Dementia Alliance International, effective October 30, 2021.

Kate Swaffer is one of the eight co-founders of Dementia Alliance International (DAI), and our long serving former Chair, current CEO and board member of the organization. She has been instrumental in taking the membership from three to 49 countries.

In her years of dedicated service to the organizational mission of “Nothing about Us, Without Us”, DAI was granted consultative status with the Economic and Social Council (ECOSOC) of the  United Nations, and has worked closely with the World Health Organization, the NCD Alliance, The World Hospice and Palliative Care Alliance, the International Disability Alliance  where she secured Observer Membership for DAI, and she is still a board member of Alzheimer’s Disease International and has been a full member of the World Dementia Council, and worked with many other local, national and global organizations. 

Kate’s inspiring leadership and warm friendship have not only left a lasting impression on everyone within the organization as well as the new Board Members and the global dementia community, but a permanent legacy at Dementia Alliance International. 

Kate was eligible to serve on the DAI Board, as per the current DAI By Laws, until December 2021 but due to personal reasons, needed to step down sooner. Over the past 18 months, Kate has put in much effort not only to ensure the work she and the other 7 co-founders set out to do, continues, but more importantly, that the services and support DAI provides to and for our members and the dementia community will continue seamlessly. 

We are fortunate to have had this length of time for a transition period, and while we will miss her dynamic presence, enthusiasm, and leadership at the Board meetings, we wish her the best of health and to have more time for her other advocacy pursuits, and for herself and her family.

Kate commenced her advocacy work in 2009, and in 2010 was invited by the CEO of Alzheimer’s Australia, Glenn Rees (now Dementia Australia), to give a speech representing people with dementia, at the first Parliamentary Rally ever held in Australia. She also founded the Alzheimer’s Australia Dementia Advisory Committee in Australia, which held its first meeting in Canberra during World Alzheimer’s Month in September 2013. Kate was the inaugural Chair, and served her full term of four years, stepping back into the role for a few months until a new Chair and Vice Chair were found. 

Glenn Rees stepped down as the CEO of Alzheimer’s Australia to take on the Chair of Alzheimer’s Disease International (ADI) more than six years ago, so has therefore worked with Kate in two roles, first as the CEO of Dementia Australia, then as Chair of ADI.  Glenn said,

“I have had the privilege of working with Kate for over more than twelve years. In all that time she has single-mindedly pursued the rights of people with dementia without fear or favour. There are so many achievements – the leadership of the National Consumer Committee in Alzheimer’s Australia, the excellence of many presentations, the publications, the capacity to communicate via social media and presence on so many committees both governmental and in the NGO sector. But in the end, it is the values that drive an advocate that count and for integrity, generosity and commitment Kate has few peers – except those she herself would always generously acknowledge such as Richard Taylor. Climbing mountains has been Kate’s specialty and perhaps the pinnacle was addressing the Ministerial Conference on Dementia in 2015 – the human rights of people with dementia were put on the international agenda. The dementia movement in Australia and internationally have cause to be grateful to Kate.” 

DAI’s long serving volunteer, Sarah Yeates who is the Chief Executive Officer at the Caladenia Dementia Care, wrote,

Dear Kate, as someone who works in the field of dementia and has a passion for better outcomes for people living with dementia, I just wanted you to know what a difference you have made for me personally and for so many of my colleagues. Your willingness to call out injustice and apathy, not only locally but on the global stage pushes professionals like myself to do better, strive higher, and believe that there is always more to be done. You have taught me so much, and I continue to learn. Because of your work, my own has greater meaning, and hopefully is grounded in truly person-centred principles. On a personal level I thank you for your friendship over the many years we have worked together and promise that one day… we will have that glass of wine together!! Thank you for all you have taught me. All the very best to you and your family, and I look forward to continuing to work with you wherever I can be of assistance!! Lots of love, Sarah xx

In her own words, Kate said, 

“It is time for the new team to take the reins, and lead DAI into the direction its members want. I will always be happy to provide mentorship, and advice as requested to the board, and to members. The greatest professional work I have ever done, has been to support people diagnosed with any type of dementia, and I will continue to do this as a co-host of the DAI Peer to Peer support groups.

The fear and loneliness I experienced when first diagnosed, mostly due to the stigma and attitudes of others, was truly devastating, and the DAI peer to peer support groups helped, and continue to help our members get back to living more positively. No one person can do this work alone, and everything I have achieved, is because of the collaboration, hard work and support of the members and the current and past boards, and of so many others including DAI members. They all continue to inspire me.”

Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has. Margaret Mead

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Further information to the DAI Written Statement for CoSP14

In this article, we provide more detailed information to add to the Written Statement submitted for the 2021 ECOSOC High-level Segment of the CoSP14, by Dementia Alliance International in consultative status with the Economic and Social Council.

Dementia Alliance International (DAI) is the global voice of people with dementiam and has been in existence since it launched on Jnauary 1, 2014. We were foudned by eitht peopel with dementia, from three countries. In our Written Statement, we also represented Alzheimer’s Disease International, the global voice for dementia, also one of our strategic partners.

The World Health Organisation, in its Global Action Plan for a Public Health Response to Dementia adopted in 2017 and has highlighted dementia as a condition causing disabilities and placed the human rights of people with dementia at the core, including implementation of rights through the Convention on the Rights of Persons with Disabilities (CRPD) with empowerment, inclusion and accountability as three of its seven cross-cutting principles.

These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.   This approach to human rights and the CRPD reflects the standard being advocated for at a global level by Dementia Alliance International and Alzheimer’s Disease International.

The COVID-19 pandemic has highlighted past injustices for the more than 50 million people living with dementia, through increasing the spotlight on the isolation, stigma, discrimination, and lack of equal access to Universal Health Coverage and post diagnostic care or support.

Dementia is a major cause of disability and dependence globally, yet people with dementia are still advised to go home and prepare to die, rather than provided the appropriate disability assessment or support afforded all others with disabilities.

Many Articles of the CRPD highlight further how people with dementia are being left behind.

The pandemic has created a human and social crisis of unparalleled scale, and the outbreak and its multidimensional influences have disproportionally affected persons with disabilities, including people with dementia, and especially those with pre-existing health conditions, people from low socio-economic backgrounds, those in low and middle income countries and those living in institutional settings such as nursing homes.

Enforced segregation and institutionalization continues, and many other breaches of human rights have been under the spotlight as never before.

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’, because their rights are not being denied, and the CRPD is meant to be an instrument to ensure the rights of people with disabilities.

Living independently and being included in the community are essential to quality of life and well-being of all, including of persons with disabilities.

In spite of the CRPD, many persons with disabilities experience discrimination and many other barriers and challenges on a daily basis without being able to enjoy these rights and freedoms. These have not only been highlighted by, but they have been worsened by the COVID-19 pandemic.

Article 1 – Eligibility

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers may hinder their full and active participation in society on an equal basis with others.

From a human rights perspective, the biggest barrier is the ‘Iron Curtain’ that separates dementia from disability. This has led to the assumption that we are not included in CRPD and are solely a Health responsibility, rather than the joint responsibility of all government departments for the well- being of all their citizens.

This has led to persons with dementia being excluded by Member States from their implantation of the Convention and to the absence of evidence of the use of CRPD General Principles and Articles in the regional and national |Dementia Strategies launched by Member States who have ratified it.

Article 19 – Living independently and being included in the community

Living independently and being included in the community are essential to the well-being of persons with disabilities and living at home and in the community is not only the preferred choice of people with dementia but also an economic imperative for governments compared to costly residential care solutions. Yet, many persons with disabilities experience discrimination and numerous barriers, facing challenges on a daily basis without being able to enjoy these rights and freedoms. These have been exacerbated by the COVID-19 crisis.

With the adoption of the CRPD in 2006, the right to independent living and being included in the community was given legal recognition in the international normative frameworks as an essential part of the individual’s autonomy and freedom. The CRPD advanced a human rights-based approach to the disability inclusion in many spheres of life. Article 19 of the Convention recognizes the right of all persons, with or without disabilities, to live independently and be included in the community, with the freedom to choose and control their own lives.

It seeks to minimize abandonment, institutionalization and segregation in domestic settings through protective mechanisms and enabling environments for all.

Persons with cognitive disabilities caused by any type of dementia, especially those who are more advanced in the disease and who have very complex communication or personal care requirements, are frequently categorized as needing to live in institutional settings for their own safety and are being segregated. Their autonomy is ignored, and such reasoning conflicts with article 19, which stipulates the right to live independently and be included in the community to all persons with disabilities, regardless of their level of cognitive capacity, self-functioning or support requirements.

States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

19a. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.

19b. …access to in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

Article 25 – Health

The COVID-19 pandemic has caused unprecedented bias towards, as well as mistreatment or denial of medical treatment against people with dementia and other disabilities, through the withholding of medical and hospital treatment, including vaccinations.

25d. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent.

25e. Prohibit discrimination against persons with disabilities in the provision of health insurance and life insurance…

25f. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Article 26 – Habilitation and rehabilitation

  1. Enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:

26.b. Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.

The road to a diagnosis of dementia can be a long, stressful, beset by unrealistic expectations, fears based on myth, unfounded hopes and certain confusion.  We must change the approach of treating people with dementia as having lost capacity from the moment they are diagnosed; instead, it needs to be acknowledged that some people with dementia are now living 20 years and more beyond diagnosis and striving to live positively, not the life expectancy of 7 years as the current data reflects. We are not invisible; we are not children, and we will not be ignored or shunted aside.

It is our right – whether at home, on a bus, at a concert, a sports event, a restaurant, a doctor’s office to be treated with dignity and respect. We still count, we are loved, sometimes well-educated, verbose, funny, and above all human.

People with dementia are being left behind in the 2030 Sustainable Development Goals and the pandemic has significantly increased isolation and the violation of rights of persons with dementia.

They are also regularly excluded from many of the advocacy activities, or the global or national policy strategies wish as the development of National Dementia Action Plans to improve care and services for people with Non-Communicable Diseases (NCD’s) globally.

People with dementia need much more than inclusion, such as a seat at the table, or to be ‘given a voice’.

They need equal inclusion and full and equal access to the CRPD, like all others living with disabilities.

Information provided by Kate Swaffer, co-founder & CEO of Dementia Alliance International.

Launch of the 4th ADI From Plan To Impact Report


DAI’s CEO & co-founder Kate Swaffer was recently invited to be a panellist at the ADI Side Event for the launch of their 4th ‘From Plan To Impact Report’.

We introduce this blog-post with a reminder there continues to be a lack of equal access to the CRPD and other Conventions for all people with dementia.

Below is the transcript of Kate’s brief presentation and summary of the Side Event.

Kate Swaffer, World Health Assembly 2021
ADI Side Event, 26 May 2021

Thanks so much Paola and thank you once again for the invitation to join this panel at this important World Health Assembly Side Event which you are hosting. As always, I feel humbled to represent the more than 50 million people living with dementia globally.

It’s been really inspiring to hear from our colleagues around the world, and the progress that is being made, and also to have examples of such great leadership from Indonesia and the Asia Pacific, and in Kenya and Africa. I guess as always, my role is to be a bit of a Devil’s Advocate, and I wanted to highlight a number of issues that people with dementia particularly feel need to be considered in National Dementia Plans.

There continues to be lack of recognition in policy, and in post diagnostic support and services for dementia that it is a major cause of disability.

There continues to be a lack of access to disability assessment and support, referrals to rehabilitation after diagnosis, although it is great to know that the WHO are currently developing guidelines on rehabilitation for dementia.

There needs to be a focus on Rights in national plans, and a focus on stigma and discrimination because all of the time I have been involved in this space I have not seen any change in the prevalence of stigma and discrimination, anywhere in the world [nor does research or the multiple reports about these issues].

What is frustrating for me personally and for people with dementia that I talk to, is that ADI were talking about a rights-based focus for dementia as far back as their report in 2012 that I have read, and I made three calls to action at the WHO First Ministerial Conference on Dementia in 2015, which were about:

  1. That we have human right to a more ethical pathway of care, that
  2. we have access to the same human rights and disability rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities, and
  3. that research does not only focus on a cure, but on our care, including rehabilitation.

So, in summary we don’t seem to have come too far with progress for people with dementia. We have made progress but as Paola and others, and Tarun have said, we are well behind the 2025 target, and less than 100 countries have national dementia plans

  • We have made progress, but we are well behind the 2025 target
  • > 100 countries still do not have National Dementia Plans [in fact, only 40 contries have National Dementia Plans]
  • We do need a Rights based focus is needed in all national dementia plans and policies [comment in chat box of someone also advocating for that]
  • We need strategies to support well-being and quality of life for people with dementia and our families
  • It is important we need to strengthen health systems; only today I was talking to someone in Adelaide Australia where I live whose mother suddenly needs a significant amount of in-home care, and there is none available for the next 12 months. I live in a rich country, and this is not really good enough!
  • There is a growing concern on the impact of dementia on women and girls
  • There are still very poor diagnosis rates and poor post-diagnostic care
  • I totally agree the focus on risk reduction as with all other chronic diseases is imperative, and needs to be included in national dementia plans
  • Dementia must continue to be seen as a priority and we must not let it be diluted due to the very necessary responses due to covid.
  • Still poor diagnosis rates and lack of post diagnostic care
  • Risk reduction, in line with other diseases, is increasingly important

Dementia must continue to be seen as a priority, and not be diluted due to the very necessary responses we have all had to implement due to the COVID-19 pandemic

I do have hope, but also feel as Gill Livingston has said, the time to act is now.

Thank you.

Footnote: Governments, Alzheimer’s organisations, health care professionals and service providers all around the world need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia, which was also highlighted in the 2012 WHO-ADI Report, Dementia: a public health priority.

Watch the ADI side event in full here:

Introducing our new Chair, Alister Robertson

Alister Robertson, NZ

As we celebrate our 7th birthday this week, we are also delighted to introduce Dementia Alliance International (DAI) member Alister Robertson as our new Chair.

Alister has been a member since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

We are truly delighted to introduce Alister Robertson as our new Chair to  you. Alister has been a member of Dementia Alliance International (DAI) since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

Alister is taking over from Kate Swaffer who continues as a board member, and the CEO.

About Alister: Alister’s new leadership role has been endorsed and welcomed by the Board of Directors and by our members, and is recognition of the hard work Alister has done globally for our members, and in New Zealand where he is on the Board of Alzheimers New Zealand and a member of their Advisory Group.

He has a strong commitment to supporting people with dementia to have a voice, and to be included locally, nationally and globally.

Alister graduated from Lincoln University, Canterbury New Zealand in 1978 with Bachelor Agricultural Commerce. Spent the following 30+ years in the rural finance sector lending money to the primary sector.

In 2009 Alister and his wife, Charlene decided they would like to do something together, given their four sons had finished their schooling and were doing their own thing. Alister and Charlene resigned from their respective jobs, sold their newly built home and purchased a Motel in Taupo, which they sold four years later.

They then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They had a retail and café business until Alister’s dementia diagnosis.

Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. He endeavours to follow the advice of trying to maintain a healthy brain by way of diet, remaining socially involved, good sleep, staying mentally active and exercise. Alister is a keen cyclist, which is his main mode of transport and this helps keeping him fit.

Alister participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI, as well as more people with dementia globally to join for peer-to-peer support, and to get involved in the global work done by DAI.

Help people with dementia to continue to be included, to be supported and to have a voice, by donating today. 

Thank you.

What’s it like to live with dementia?

 

 

On the final day of Dementia Awareness Month, we share a short video of one of our co founders, Kate Swaffer talking about three things she now knows about dementia.

As a co founding member of DAI, Kate has often said she is glad she co-founded DAI, because it provides support, gives people hope, and helps them to ‘reclaim their lives‘, after it has been stripped away.

Whilst not all members join peer to peer support groups, and not all members become active in DAI, those who do, regularly say: “DAI saved their life”. DAI is Life Changing.

3 Things I know [about dementia]

The Drum, SBS, Australia

Introduction by Ellen Fanning, 5 May 2020,
Reporter Stephanie Bolte

When [DAI co-founder, Chair and CEO] Kate Swaffer started to see words upside down over a decade ago, she thought it was a result of brain surgery she’d had. It turned out she was one of more than 26,00 people in Australia under the age of 65 with what’s known as younger onset dementia. 

Told to get ready to die, Kate’s world seemed to disappear overnight, but she realised it didn’t have to, and she has gone on to co-found Dementia Alliance International and advocate across the globe for dementia in practice to be seen as a disability. She sat down with reporter Stephanie Boltje, before the Coronavirus shutdown, to explain three things she knows about dementia.

Since you’re here…

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

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia to continue to have a voice, by donating to DAI.

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.

Webinar “DAI: 5 years on”

 

Please note: this is one event, set in a number of different time zones.


“Five years on: Why DAI? Where have we been? Where are we going?”

 

ABOUT THE WEBINAR: With a new diagnosis of dementia every 3 seconds, it is not surprising that DAI has continued to grow since its launch five years ago. Our presenters, John Sandblom and Kate Swaffer are both co founders, and are also co hosts of peer to peer support groups and very active board members. They are both often asked why and how DAI was set up. In this Webinar, they will cover the history of DAI, provide an overview of what DAI has achieved to date, and discuss where they see the future of DAI.

The most imporant part of DAI’s work is the weekly peer to peer support groups for members, and the global advocacy for claiming our human rights and disability rights. This webinar will also be an opportuntity for members, families, as well as our sponsors, supporters, academics and professionals working in the field to tell us what they would like to see in terms of DAI’s future direction.

By working together collaboratively, we are all stronger, and can achieve even more than what the original founding members first dreamed of. We welcome everyone to register and join us for this EXCITING Webinar. Without you all, DAI would not be where it is today.

PRESENTERS: Kate Swaffer & John Sandblom

John and Kate are co founders of DAI, and have been active board members from day one of this organization. They were also very in the setting up of DAI prior to the launch on January 1, 2014.

John has lived in central Iowa, in the US for all of his life except for college which was eastern Iowa at the University of Iowa. He spent the majority of his working life in business-to- business sales, first print advertising followed by television advertising and then telecommunications sales. He was diagnosed with Younger Onset Atypical Alzheimer’s Disease at the age of 48 in 2007, by a gerontologist that specialized in dementia.

Kate grew up on a farm in rural South Australia, and has lived in Adelaide Australia since 1977. She commenced her professional career as a nurse, specialising in dementia and aged care, and then worked in operating theatres. She has also worked as a chef, and also in health care sales. She is very active globally for DAI, has published two books on dementia, two poetry books, and is involved in research into dementia at three universities. Kate was diagnosed with younger onset dementia (svPPA) aged 49 by a neurologist in Adelaide.

Register here…

DATES/TIMES:

Wednesday, January 30, 2019 (USA/CA/UK/EU)

10:30 am Honolulu
12:30 pm Oregon Portland/San Francisco USA
12:30 pm Vancouver CA
2:30 pm Des Moines/Chicago USA
3:30 pm New York USA
3:30 pm Toronto CA
8:30 pm London/Glasgow UK
9:30 pm Paris, Munich, Amsterdam, EU

Thursday, January 31, 2019 (AU/NZ/JP/SGP/TWN/CHN)

7:00 am Adelaide AU
6:30 am Brisbane AU
7:30 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei TWN/Beijing
5:30 am Tokyo, JP
9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Apologies for some of the early or late times; it is really difficult to host one event which suits all time zones; we will record this presentation for those who are unable to attend.

Check your time if not listed above by opening this link.

We hope to see you there!

DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE, AND E INVITE YOU TO MAKE A DONATION.  

WITHOUT DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $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 400.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE… 

CERTIFICATES OF ATTENDANCE: If you are still waiting on a certificate of attendance from any of our educational webinars, please email us at [email protected]

OPTION: Our event ticketer, Eventbrite, charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Thank you.

Hello, my name is Christine Thelker

Image source: Christine Thelker

On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!

Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.

Joining DAI saved my life

DAI & Christine Thelker © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Christine. Become a DAI Sponsor or Associate today.

One day until the 71st World Health Assembly

The 71st session of the World Health Assembly officially opens on Monday 21 May. Although the official agenda does not begin until Monday, the action starts days before.

DAI is working more closely with the NCD Alliance and many other organisations, now also including the Worldwide Hospice Palliative Care Alliance (WHPCA), and we will be joining the NCD Alliance #ENOUGH Campaigns this week, and the many activites of the WHPCA. As dementia is a non communicable disease (NCD), and we have ahuman right to appropriate palliative care, these are important for us all.

Here are two of the #NCD Alliance campaign messages:

ENOUGH:  Time to translate commitments to action for NCDs. At #WHA71 we must put people 1st, make #NCDs an investment priority backed up with evidence-based policies, protect children from obesity and give all #PLWNCDs access to treatment #enoughNCDs #beatNCDs
Calling all leaders at #WHA71. We have had ENOUGH. We want and need you to commit to putting people first by involving #PLWNCDs in the decision making process. Our health is our right, and all people need action to protect it right now! #enoughNCDs #beatNCDs #NCDvoices

Below is a list of some of the meetings DAI is attending and the many interesting side-events throughout the week:

  • 20/5 – 10:30 amWalk the Talk: The Health for All Challenge – walk or run – led by WHO
  • 20/5 – 18:00 – 19:30 pm – Panel discussion on Saving Lives, Spending Less: A Strategic Response to Noncommunicable Diseases
  • 21/5 – 9:00 am – Opening of the World Health Assembly
  • 21/5 – 10:30 – 11 am – NCD Alliance meeting
  • 21/5 – 2:30 & 4:00 pm – Meetings with the WHO
  • 21/5 – 18:00 – 19:45 – NCD Alliance Side Event: ENOUGH. Making 2018 the year for action and accountability on NCDs
  • 22/5 – 17.00-19.00 – Global Rehabilitation Alliance Meeting
  • 22/5 – 18:00 pm – Taking Civil Society Engagement to New Heights
  • 23/5 – 8am – 11am – WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs
  • 23/5 – 16:30 pm – From the Ground Up: NCDs, TB and Resilient Health Systems
  • 23/5 – 19:00-19:50 – ADI Side Event: Mobilising Society: Inspiration for developing national responses to dementia
  • 24/5 – 7:30 am – Changing the Story: Creating a New Obesity Narrative
  • 24/5 – 12:30 pm – Reducing Sugar, Salt and Fat to Prevent NCDs: Bold Initiatives and Success Stories
  • 24/5 – 16:30 pm – Human Rights in Global Health
  • 24/5 – 8 -10 am – Global Health Council, Living Goods, IntraHealth International, Frontline Health Workers Coalition – Diverse Pathways and Partnerships to Universal Health Coverage

Other involvement including times and days to be advised in our role working with  Worldwide Hospice Palliative Care Alliance,  are based on their goal to “To build increased commitment for an essential package of palliative care as part of UHC amongst WHO and member states”. 

I’ll do my best to keep DAI members and supporters updated each day, as the Assembly progresses and outcomes from the many meetings and Side Events I am involved in take place.

Kate Swaffer, DAI Chair, CEO & Co-founder
#WorkingForAllPeopleWithDementia