Category Archives: Uncategorized

Extra support during COVID-19

 

 

 

In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.

Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships.  DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.

DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.

Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family,  attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.

An updated list of the DAI peer to peer support groups

Note: If you are not already in a DAI support group and wish to join one, please contact us at [email protected]

Weekly peer to peer support groups:

  • Mondays 1:30 PM CSTNEW GROUP – co hosts Christine Thelker, Phyllis Fehr and Kate Swaffer, US/CA
  • Mondays 10:00 AM ACST – co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC – co-hosts James McKillop & Dennis Frost, UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST – co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor), AU/NZ/SG
  • Thursdays 1:00 PM CDT – co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT – co-hosts Sid Yidowitch, Dallas Dixon & Kate Swaffer, USA/CA/AU
  • Fridays 2pm ACST – NEW GROUP – co hosts Kate Swaffer and Eileen Taylor, AU/NZ/SG
  • Fridays 2:30 PM CDT – co-hosts Christine Thelker & Diane Blackwelder, USA/CA

Living Alone Social Support Groups

  • Sundays 5 PM GMC, co-hosts David Paulson & Julie Hayden, USA/CA/UK, weekly
  • Sundays 5 PM AEST, co hosts Bobby Redman & Jo Browne, AU/NZ,  NEW – now being hosted weekly

If you are not already in a DAI support group and wish to join, please contact us at [email protected]

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Tackling COVID-19: New Platforms and Resources

The World Health Organisation

The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.

They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.

Please find below a list of materials already published.

Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]

The Organisation for Economic Co-operation and Development (OECD)

As part of the OECD’s response to this crisis, they have launched a platform that provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.

Alzheimer’s Disease International (ADI)

Alzheimer’s Disease International (ADI) is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.

Dementia Australia (DA)

In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19:

Tips for people living with dementia
Tips for carers, families and friends of people living with dementia
Tips for residential care providers
Tips for home care providers

LTC Responses to COVID-19: International Long Term Care Policy Network

Resources to support community and institutional Long-Term Care responses to COVID-19. This website has been assembled by a hopefully growing team of volunteers working on Long-Term Care research, to provide a space to bring together all those really useful resources we were spotting on Twitter. Please join if you can. Adelina Comas-Herrera (@adelinacohe).

Please feel free to contact us if you have other information or sites for us to consider sharing.

 

WHO Resources to support COVID-19

Announcing the new page on the World Health Organisation website:

Mental health and psychosocial support during COVID-19 on our website which people can access and download materials related to mental health and psychosocial support ( English and Arabic).

The materials include:

1.       WHO-developed infographics on:

·         Coping with stress 

·         Helping children cope with stress

2.       Mental Health and Psychosocial Considerations During COVID-19 Outbreak

3.       Briefing note on addressing mental health and psychosocial aspects of COVID-19 outbreak

Managing the Coronavirus

 

 

Over the last few months, the impact of the Coronavirus (COVID-19)has taken its toll on many of us. We would therefore like to acknowledge the significant impact the coronavirus (Covid-19) is having on communities and individuals across the world, especially older people and those who are vulnerable.

Our thoughts go out to those who have been directly impacted by this crisis. Our concerns for the wellbeing of our members and their families, and of all others is paramount and we recognise that the indirect elements like self-isolation in response to Covid-19 will also have impacts on many advocacy activities.

The negative impact on people with dementia and our care partners and families has been significant. People with dementia are worried about contractng it, as out immune systems are often lower.

Care partners with a family member in a nursing home, many who are now not allowed to visit, or can only visit with strict entrance protocol, are rightlfully fearful of the potential for the person they love, to die alone, and that they will never see them again.

The necessary social distancing is something many people with dementia already live with on an almost daily basis, but it is definitely worse when the whole world has to do this.

Simple measures such as thorough handwashing, using hand sanitiser if in public places, as well as when you get back home, are sensible. If you do have to meet face to face, stay at least 1.5 metres apart, wash hands before & afterwards.

DAI sent an email to its members, and the full data base today, with various updates as well as notice of a couple of webinarsabout managing COVID-19 on later this week.

It may also be helpful to know that art galleries and other organisations around the world have started promoting virtual tours:

The World Health Organisation – COVID-19 – is providing updates for individuals and organisations almost dail; sign up for their  updates, and read more about what you can do to protect yourself and your family here…

Finally, you may want to watch this update from Professor Huali Wang, who is the Vice President Alzheimer’s China Association, and a member of the World Dementia Council. Professor Wang explains how China has addressed the specific challenges of people living with dementia during these unprecedented circumstances.

 

International Women’s Day 2020

 

 

DAI and GADAA collaborated with others in 2017 to write a report and host an event, Women and Dementia in London for International Women’s Day. You can read the speech given by DAI Chair, Kate Swaffer here. The information we highlight again for International Women’s Day is still very relevant to women and dementia. It is especially relevant to the #IWD2020 theme this year, #EachforEqual, which we can all work towards.

An equal world is an enabled world. How will you help forge a gender equal world? Celebrate women’s achievement. Raise awareness against bias. Take action for equality.

Every three seconds someone in the world develops dementia. Globally, more than 50 million people have dementia, with almost 10 million new cases every year. Throughout the world, women are experiencing higher dementia prevalence rates than men and face gender-specific barriers to a high quality of life with the condition.

The impact of dementia is much greater for women than men the world over, as reported by the Global Alzheimer’s & Dementia Action Alliance (GADAA) in 2017. Although this alliance is no longer active, but the website is still available and continues to host information and reports.

Women & Dementia: A Global Challenge reported that dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide. It is now the leading cause of death for women in the UK, and it is the leading cause of death in women in Australia.

However, only twelve countries offer gender-sensitive responses to the disease.

The report found that women provide the majority of both unpaid and formal care to people living with dementia. Two thirds of primary carers worldwide are female, rising to more than 70% in lower and middle income countries. Carers of people living with the condition often have to make changes to their employment situation and women are more likely than men to reduce their hours to part-time, or stop work completely, to provide care to those living with dementia.

Some key facts about Women and Dementia

  • Dementia is listed by the World Health Organisation in the top five causes of death for women worldwide and is now the biggest cause of death for women in the UK.
  • Throughout the world, women experience higher dementia prevalence rates than men and face gender-specific barriers to living well with the condition.
  • Women provide the vast majority of both unpaid and formal care to people living with dementia, with around two thirds of primary caregivers around the globe being women, rising to more than 70% in lower and middle income countries.
  • The stigma surrounding dementia exists universally and extreme forms of discrimination can lead to the abuse of women. Older women affected by conditions such as dementia are exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition.
  • A recent UK study identified that women living with dementia are more likely than men to be prescribed psychotropic medication that can negatively affect their physical health.
  • In the US, 20% of female care partners have gone from working full-time to part-time, compared with only 3% of working male caregivers. 19% of working women care partners had to leave work to provide dementia care in the US.
  • Yet of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.

Hidden Voices: Women Speak Out on Dementia

On Thursday 19 October international civil society members and policy-makers from around the world came together to learn more about one of the 21st century’s biggest global health priorities and its effect on women worldwide.

Introducing the 2020 Board of Directors

DAI is very pleased to introduce the 2020 Board of Directors, and to inform you of DAI’s updated Governance structure.

This year, we have included two positions for people who are not DAI members, which is not different to other organisations who have staff, except that ours are not yet able to be paid. One day, we aspire to have paid roles, for staff, including members.

2020 Board of Directors:
Chair/CEO, Kate Swaffer, Australia
Vice Chair, Alister Robertson, New Zealand
Treasurer, John Sandblom, USA
Eileen Taylor, Australia
Wally Cox, USA
Christine Thelker, Canada
James McKillop, Scotland, UK
Bobby Redman, Australia
Bill Turner, Australia

Two new non member (volunteer) positions:
Secretary, Sarah Yeates, Australia
Finance Officer, Tamara Claunch, USA

Most other organisations usually have many staff in paid roles, but due to a lack of funding, DAI is still not in a position to  do so. We remain indebted to both Sarah and Tamara for their willingness to give of their time freely, for the benefit of members and supporters of DAI.

Three Working Committees:
Internal Affairs
External Affairs
Governance

Within these committees, there is a permanent Finance and Fundraising Sub committee, an Action group, a Membership sub committee, and other teams (or committees) as required.

Professional Advisory Council:
This new group consists of a number of global dementia experts, researchers, medical doctors, an attorney, a CPA and others, to be announced soon.

Please note, our updated By Laws will be added to our website as soon as they have been finalised.

Finally, our Annual General Meeting (AGM) is to be moved to June each year, and the new board positions elected at this meeting will be effective in the next fiscal year. All of these changes have been approved in ine with our By Laws, and to improve our governance.

Listen to Alister Robertson in our first VodCast on why he believes in the work and vision of Dementia Alliance International…

About our new Vice Chair: Alister is from Napier in New Zealand was diagnosed with younger onset Alzheimer’s in 2014. Soon after his diagnosis he was fortunate enough to attend a day programme run by Dementia Hawkes Bay, which he now attends three days a week. Alister has become an active member of DAI, having been involved in our Action Group and Board. This week, at our AGM, he accepted the nomination as Vice Chair in 2020.  He is also a very active advocate for raising awareness of dementia in NZ and globally.

DAI members also wish to thank our strategic partners and sponsors, and every single person who so generously makes a donation to DAI.  Without your donations and sponsorship, we could not continue to provide free membership and services to our members and supporters.

Thank you. 

International Day of People with Disability #IDPwD

The International Day of People with Disability (IDPwD) is a United Nations-sanctioned day, celebrated internationally on 3 December, with the aim to increase awareness of gains to be derived from inclusion of people with disability in every aspect of political, social, economic and cultural life. It is imperative that persons with dementia are included in these campaigns.

The theme this year is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.

It focuses on the empowerment of people with disability for inclusive, equitable and sustainable development as anticipated in the 2030 Agenda for Sustainable Development.

  • We must ‘leave no one behind’
  • We must recognise disability as a cross-cutting issue, and
  • This must include people with dementia. 

It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore that all people diagnosed with dementia have inalienable rights to full and equal access to the CRPD and other Conventions, and to Universal Health Coverage, including rehabilitation.

To celebrate the International Day of People with Disability this year, and as we work towards claiming our rights, alongside all other people with any disabilities, let’s watch the first DAI Side Event from the CoSP in June 2019 again.

Support people with dementia to attend the Alzheimers Disease International 34th International Conference in Singapore in March 2020. Early Bird registrations have been extended to Friday, December 13, 2019.

Support Christine Thelker – From Canada to Singapore: A Quest for Human Rights

Supporting someone with Aphasia

The National Aphasia Association in the U.S. have published a short video on the new guidelines they have produced for care partners supporting someone with aphasia.

Many DAI members are living with a form of Aphasia, in particular Primary Progressive Aphasia, so this resource may be helpful.

Download the complete guide here.

 

Breaking News, via ADI

Biogen and Eisai announce plans to file for market approval of Alzheimer’s drug.

Published 22 October 2019 by Alzheimer’s Disease International.

Biogen and Eisai today announced that they will file for market approval for the drug aducanumab, an investigational treatment for early Alzheimer’s disease, following new analysis showing reduced clinical decline in people with early Alzheimer’s disease.

The Phase 3 clinical studies ENGAGE and EMERGE were discontinued in March 2019 following futility analysis by an independent monitoring committee that indicated the trials were unlikely to succeed.

Following the discontinuation of EMERGE and ENGAGE, additional data from these studies became available. After reviewing this larger dataset from the Phase 3 EMERGE Study in close consultation with the U.S. Food and Drug Administration (FDA), Biogen found that aducanumab resulted in significant benefits to patients. These improvements related to cognition and function including memory, orientation, and language, as well as improving daily activities like conducting personal finances, performing household chores, and independently traveling out of the home.

The discrepancy between the earlier futility analysis of the drug and the new analysis of the larger dataset is largely due to patients’ greater exposure to high dose aducanumab.

Alzheimer’s disease is the most common form of dementia, the collective term for a range of degenerative neurological conditions that affect memory, thinking, behaviour and emotion. There is no cure for dementia and has been no new treatment for the symptoms of dementia since 2002.

If approved, aducanumab would become the first therapy to reduce the clinical decline of Alzheimer’s disease and would also be the first therapy to demonstrate that removing amyloid beta resulted in better clinical outcomes.

Paola Barbarino, Chief Executive Officer of ADI, said: “This amazing therapeutic breakthrough from Biogen is like a ray of sunshine, the first we have had for a long, long time. I cannot overemphasise the importance of this announcement today as it will give also renewed impetus to markets for the discovery of more pharmaceutical treatments. I want to stress to all those living with dementia now that aducanumab is not yet available and further tests need to be made but it is the light at the end of the tunnel we have been hoping for so long!”

Samantha Budd Haeberlein, Vice President, Late-Stage Clinical Development at Biogen, said: “We believe that these positive results for aducanumab represent a turning point for patients, caregivers, physicians, and scientists in the fight against Alzheimer’s disease. We look forward to working with the FDA and regulators around the world to find a path to make the drug available to patients. Most importantly, we envisage a future where physicians may finally have an option to offer patients to help reduce clinical decline in Alzheimer’s disease.”

Kate Swaffer, Chair, CEO and Co-Founder of Dementia Alliance International (DAI), said:

“It is with both excitement, but also some apprehension that people diagnosed with dementia receive this news. For too long the focus was only on a cure, and we have also had many failed trials. To know we may be close to a disease modifying drug, as we have for so many other chronic conditions such as diabetes, increases hope for us all.”

We are assured that Biogen will work to gain market approval for aducanumab as soon as possible, working closely with regulatory authorities, institutional review boards and principal investigators. They plan to have submit their Biologics License Application to the FDA by early 2020 and will continue dialogue with regulatory authorities in international markets.

The clinical trial for this drug is not open to new patients at present, but Biogen aims to offer aducanumab to eligible patients previously enrolled in clinical studies. ADI will continue to work closely with Biogen and Eisai, and to advocate for improvements in detection and diagnosis, availability of specialists and access to healthcare centers, to support the eventual roll-out of aducanumab.

More information on this ground-breaking new drug will be available at the 34th International Conference of ADI in Singapore in March 2020.

To answer any questions you might have, Biogen have created a website with information for patients and caregivers, previously enrolled trial participants, principal investigators and key medical experts in the U.S. at https://biogenalzheimers.com.

To find out more, read Biogen’s press release.

Where in the world is DAI?

DAI Membership Map

Where in the world is DAI?

Well, almost everywhere. We have members in 49 different, and a great many are very busy locally, nationally and internationally.

DAI members attend meetings and events at the United Nations in New York and Geneva,  the World Health Organisation in Geneva, and meetings or specific advocacy events in Lausanne, Washington, Sydney, Canberra, London, and quite literally, cities and towns all over the world. There are simply too many to list!

The voices of all people impacted by dementia matter, and our advocacy,  and for some, activism is important and is increasing, both in terms of the numbers of people with dementia and/or their families becoming involved, and the ‘volume’ of our voices.

We are being heard, but little has changed:

  1. People with dementia are still being advised to ‘get their end of life affairs in order’, and offered little if any support to live positively and independently, for as long as possible.
  2. The style of language being used in all forms of the media remains persistently negative, disabling and disrespectful; there has been little change in terms of language in the clinical and academic sectors either.
  3. Researchers and health care professionals still do not manage dementia as a condition causing cognitive and other disabilites, many even insisting on th medical model of post diagnostic care. This is in spite of the fact that the World Health Organisation Factsheets on Dementia have stated for some years now  that “Dementia is a major cause of disability and dependnce in older persons.” 
  4. People with dementia are still not provided with disability assessment or support soon after diagnosis.
  5. Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
  6. People with dementia continue to be physically and chemical restrained in nursing homes.  The 2018 Human Rights Watch report on this in the USA is deeply distressing.
  7. Neglect and abuse within nursing homes, and also in the community is still high.
  8. Elder abuse is still especially present.
  9. When talking to people more recently diagnosed with dementia, it is clear the Dementia Friendly initiatives have done little to change what happens for them at the time of diagnosis, or after. In the broader context of civil society including health care professionals, they have rarely changed attitudes, and have barely, if at all, decreased the stigma or discrimination still being experienced.

Attitudes to dementia have not changed

In the recent  ADI World Alzheimer’s Report on Attitudes to dementia, some of the key findings of the report include:

  1. Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia.
  2. 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
  3. Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.
  4. Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
  5. 40% of the general public think doctors and nurses ignore people with dementia.

These findings, in particular number 4, are deeply disturbing, and are likely a further indication of the lack of tangible impact of advocacy.

So,  if dementia advocates keep doing what has always done, and keep getting the same results, unless WE change, nothing will change. As a prominent care partner Jayne Roberts said last year, “Everything has changed, and nothing has changed.

As advocates, we need to re-asses our plan(s) of action.

Perhaps one of the key factors in why very litttle has changed, epecially for newly diagosed peopel with dementia, may be that we should ALL be working together more collaborativley, with each other, both individually and between organisations.

The challenge with that of course, is that many organisations and many individuals have differing agendas, or are more  concerned about funding. Of course, funding for all organisations is very necessary, but it is not yet adequately helping people diagnosed with dementia, or our families.

It is definitely time to do something different; just what that is yet, from the perspective of DAI, is still under review.  

#Hello, my name is Tomofumi Tanno

Tomofumi Tanno says hello, all the way from Japan, but via a presentation he made in ADI Chicago last year!

Tomo is a remarkable dementia advocate living in Japan, and last year, with the support of Kumiko Magome, who translated for him on this occasion, Tomo talked about what it has been like, being diagnosed with younger onset dementia at the age of 39.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.