John Sandblom is a co-founder, Board member and the Treasurer of Dementia Alliance International (DAI). This is his keynote presentation at the opening Ceremony of the ADI Conference in Chicago. He shares the value of joining DAI, and of self advocacy.
“Improving quality of life for people with dementia” by John Sandblom
If you are watching this now, please consider donating to DAI. If you had been privileged enough to attend this conference and listen to John in persn, it would have cost you much more than the registration fee of more than $800 to attend the conference.
DAI is a 501 (c) 3 registered charity; a non-profit organization of people with dementia from 49 countries seeking to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Our activisnm for the human rights for all will continue.
Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Join DAI here
Or you can subscribe to our newsletter or weekly blog, by registering your email.
In May 2019 DAI was delighted to host one of our “A Meeting Of The Minds” Webinars, “Learnings from Patients and Families”, presented by Dr Daniel Potts. We thank Dr Potts sincerely for giving up his time, and sharing his incredible insights, expertise and learnings, as well as his own deeply personal story. It’s an important webinar worth sharing again here.
About the webinar: A neurologist and care partner for his father, Lester, who became an artist after the diagnosis of Alzheimer’s disease, Daniel Potts found his life and practice have changed because of the experience with his father. He feels the experience has produced greater empathy, compassion, and understanding, which has increased his own effectiveness as a physician and educator.
Dr. Potts highlighted his experience with his father, show some of Lester’s art, will speak about specific ways his practice has changed, and will give some suggestions that may be helpful for other providers. Additionally, he will discuss some realistic expectations persons living with dementia and care partners should have of their providers and looks forward to gaining knowledge and understanding from the webinar audience, as well.
If you are watching this, and are employed or in a financial position to support DAI, please consider donating to us. In doing so you assist supporting more Webinars like this one, as well as people living with dementia globally. Thank you.
Dementia Alliance International (DAI is a non-profit group of people with dementia from 49 countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.
DAI’s vision is “A World where all people are fully valued and included.“
Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia.
You can also subscribe to our newsletters or weekly blogs by visiting www.infodai.org
Supported by the Oregon University, the Alzheimer’s Association and many others, DAI member Jerry Wylie features in this wonderful video talking about the value of peer to peer support.
In fact, like many others with dementia, he sees it as an ‘essential service’ that everyone should be referred to soon after diagnosis. We are proud of all that Jerry continues to do since stepping down as our Vice Chair last year.
Congratulations Jerry, and thank you for all that you continue to do.
ARC Linkage Project – A good life: developing a new quality of life instrument with older Australians for economic evaluation in aged care.
This project sought to develop a suite of quality of life measures or quality of life scale for older personsthat can be used for quality assessment and economic evaluation in aged care across community and residential aged care settings.
In order to be used for economic evaluation, the measures must be preference-based. That means the identified quality of life domains will be weighted according to the importance of those domains to older people.
Unlike other quality of life measures, these measures were developed from their inception with older people.
The project has sought to be inclusive in recruitment, including people with cognitive impairment and dementia if they are able to provide informed consent to participate. Initial eligibility was determined by providers and final eligibility by the research team. Participants were not required to undertake any cognitive testing as part of eligibility determination or for data collection.
In late 2019 the project launched its website which will be updated throughout the project: https://www.qol-acc.org/
Chief Investigator organizations: Flinders University, University of Sydney, Australia National University and Dementia Alliance International, and our Chair Kate Swaffer who is based in Adelaide, has been actively invovled in the project.
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 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 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.
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 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.
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.
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.
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).
Listen to DAI Chair, CEO and co founder Kate Swaffer, on being a nurse, volunteering for DAI, and why we need your support.
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.
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)
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.”
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)
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.
During the current COVID-19 pandemic, members of DAI and almost all others are rightfully extremely worried about the impact on their day to day lives of this outbreak, including being able to shop in their communities for the most basic of supplies.
In most countries cinemas, almost all essential services such as restaurants, conference venues, hairdressers, beauty therapists and nail salons have been ordered to close. Physical distancing measures are in place (commonly referred to as social distancing), In some countries, no more than two people can meet in any one group, and they must be 1.5 metres apart.
If you have demenetia, or know someone who does, please refer them to DAI, or to their local or national Alzheimer’s organisation, as many are also now providing online support.
These are extraordinary and extremely stressful and upsetting times for most people, perhaps especially older persons and marginalised groups such as people with dementia, and the information below may be of interest.
It is a challenging time for everyone, and enhances why access to clear, accurate, and up-to-date information is essential.
Alzheimer’ Disease International (ADI)
ADI has recently published a position paper on COVID-19 with members of their Medical and Scientific Panel, which as their strategic partner, our Chair Kate Swaffer was asked to contribute as an author, and provide a quote. The global impact of COVID-19 is unprecedented, particularly on vulnerable groups such as people living with dementia and their families and caregivers. We hope that by sharing such information, we can assist persons and families in making informed decisions about how, when and where to seek help at this difficult time. You can read the full article here…
Within the article, several important topics are addressed:
IsCOVID–19 different for people with dementia?
Different countries’ guidance on how and when to seek further treatment
Difficult decisions around hospital admission and triage
Other information on COVID prevention and treatment and additional challenges to consider for people living withdementia
The following is a précis of recently received information from the WHO Working Group webinar on COVID-19 and Non Communicable Diseases (NCDs) webinar:
The United Nations three strategic priorities:
Contain the spread of the COVID-19 pandemic and decrease morbidity and mortality (WHO SPRP/2)
Decrease the deterioration of human assets and rights, social cohesion and livelihoods
Protect, assistant and advocate for refugees, internally displaced people, migrants and host communities particularly vulnerable to the pandemic.
The WHOs three strategic priorities:
Rapidly establishing international coordination and operational support
Scaling up country readiness and response operations
Accelerating priority research and innovation.
Links between COVID-19 and other Non-Communicable Diseases What we know so far:
People of all ages can be infected by COVID-19.
The risk of becoming severely ill with the virus appears to increase for people who are 60+.
People living with NCDs also appear to be more vulnerable to becoming severely ill with the virus, in particular people living with:
Cardiovascular disease (e.g. hypertension, persons who have had, or are at risk for, a heart attack or stroke)
Chronic respiratory disease (e.g. COPD)
Smokers are likely to be more vulnerable to COVID-19
The International Disability Alliance (IDA) is providing many updates to the disability community, as well as hosting webinars and live Facebook chats. DAI has regular opportunities through the IDA to contribute to policy and publications about disability to ensure people with dementia are included.
Many other orgnaisations are hosting webinars and live Facebook chats; listing them here is difficult as there are simpy too many, and new opportunitiues from different organisations and individuals are emerign every day.
In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.
Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships. DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.
DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.
Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family, attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.
The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.
They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.
Please find below a list of materials already published.
Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]
The Organisation for Economic Co-operation and Development (OECD)
As part of the OECD’s response to this crisis, they have launched a platformthat provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.
Alzheimer’s Disease International (ADI)
Alzheimer’s Disease International (ADI) is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.
Dementia Australia (DA)
In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19: