Category Archives: Dementia

Human Rights and the Confinement of People Living with Dementia in Care Homes

Todays blog is an important Human Rights Law Journal article, Human Rights and the Confinement of People Living with Dementia in Care Homes published on 18 June 2020.

By Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming.

Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

You can download the full article here…

This article is one of three, as part of a research project many members of DAI were involved in as participants of the research, and at the Summit. The project ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ aimed to explore:

  • current barriers to liberty and community access for people living with dementia in RACFs; and
  • the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.

The first published article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.

#HumanRights4All

DAI Cookbook Project

Image source: Dementia Alliance International

DAI Members: we invite you and your families to contribute to the DAI Cookbook project.

Food made with love

Hello everyone and thank you for reading this blog!

September 2020 will be an important month for Dementia Alliance International; during the month of September we will commit all of our efforts to raise funds to ensure the continuity of DAI and our free membership, and member services.

With that, we would like to ask you for a contribution of a few minutes of your time to join us with this exciting venture.

Two of your members, Christine Thelker and Jan Douglas, along with Kate Swaffer are organizing the production of a DAI e-Cookbook

It was inspired by another wonderful DAI member, Terry Montgomery! Thank you Terry.

We would all love for your favorite recipes to be included in this wonderful book.

We are asking that you submit two (2) of your FAVORITE recipes.

Depending on how many recipes we receive, and what category they are in, will determine which recipes are used in the book.

Please submit your recipes, photos and stories by July 16, 2020. 

We have categories for the following recipes:

  • Starters (appetizers)
  • Salads and homemade dressings
  • Soups
  • Breads
  • Main meals
  • Desserts
  • Recipes specifically for brain health

Along with your submission, send us a photo either of yourself, or of the prepared recipe, and a short paragraph about the recipe, what the recipe means to you and your family. [we have already received a number of recipes – thank you!]

Please also note if your recipe is gluten free, sugar free, etc.

Please send them to [email protected]

See this example of a short paragraph about a recipe:

Hearty Beef Vegetable soup
“I always made this on cold winter days, for when the kids came in from playing in the snow and just in time for my husband to arrive home from work, this soup brought our family together, I made it with love.”

We all look forward to reading your stories and sharing your recipes to other DAI Members, and hopefully, to the world.

It will be produced it as an e-Cookbook available on Amazon, and ALL proceeds will go directly to Dementia Alliance International. Dementia Alliance International.

Stay safe and well,

Christine, Jan, Terry and Kate

Finally, a reminder to register for our June 2020 “Meeting Of The Minds” Webinar, Dementia, Human Rights, Selfcare and COVID-19

Communicating with a person with aphasia

Image source: Kate Swaffer

In the last few weeks, a lot of people and organizations who have never before used zoom (or a similar online platform) have had to meet online for work, family and social gatherings.

Even organizations who have been using zoom for a long time, have started producing help sheets and other resources on how to use it. At last… the world is catching up, and people with dementia really appreciate it!

Online communicating is difficult, but for many who are diagnosed with dementia, is preferable to a phone call, as we can see the others persons face and expressions, and therefore alsohave a visual cue beyond a name of who we are talking to.

For those with dementia who also have aphasia such as Primary Progressive Aphasia, it is not easy to communicate in person, let alone online, hence we wanted to post this blog with some tips and other resources.

DAI has posted blogs on aphasia previously, including a short video in 2016 on a post titleed Understanding Aphasia. This DAI blog also has a caregivers guide, produced by the National Aphasia Association, and the following video is worth watching (again).

The National Aphasia Association in America also has a lot of useful information on their website.

Tips for Communicating with a Person with Aphasia

These tips may make it easier for you to understand and talk with people with any type of aphasia. To help a person with aphasia communicate with you, try the following:

  1. Get their attention before you start speaking.
  2. Keep eye contact.
  3. Watch for body language and the gestures used.
  4. Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
  5. Keep your voice at a normal level. You do not need to talk louder unless you are asked to (we are not all hearing impaired).
  6. Keep the words you use simple but adult. Do not “talk down” to the person with aphasia, as if having aphasia (or dementia) means having intellectual deficits.
  7. Use shorter sentences, and if possible, repeat key words that are important to understand.
  8. Slow down your speech, but not so much that is sounds insulting or patronising.
  9. Give the person time to speak; it may take longer.
  10. Try not to finish sentences or find words for them; this poem may help explain why.
  11. Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
  12. Ask the person with aphasia to draw, write, or point when  having trouble talking.
  13. Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
  14. It is ok if the peson makes mistakes sometimes. They  may not be able to say everything perfectly all the time, but neither may you.
  15. Let them try to do things for themselves, even if they need to try a few times. Help me when help is asked for. Unless it is dangerous there is no need to intervene uness asked to.
  16. Aphasia does not equate to an intellectual disability, but rather is a language impairment or disability

Whilst DAI currently does not have peer to peer support groups specifically for people with aphasia, if we have enough requests to do so again, we will do o ur best to set one up. Contact us at [email protected] if you or someone you support is interested.

Register now for our June “Meeting Of The Minds” Webinar, Dementia, Human Rights, Selfcare and COVID-19

Wally Cox says #Hello

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

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

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

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

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

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

Wally, tell us a little about yourself.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

**************************************************************************

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

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

Supporting people with dementia through COVID-19

This DAI infographic provides an easy reference to support for people with dementia globally.

During the current COVID-19 pandemic, members of DAI and almost all others are rightfully extremely worried about the impact on their day to day lives of this outbreak, including being able to shop in their communities for the most basic of supplies.

In most countries cinemas, almost all essential services such as restaurants, conference venues, hairdressers, beauty therapists and nail salons have been ordered to close. Physical distancing measures are in place (commonly referred to as social distancing), In some countries, no more than two people can meet in any one group, and they must be 1.5 metres apart.

DAI is providing additional support to DAI members at this difficult time by hosting a number of extra support groups, reported on recently.

If you have demenetia, or know someone who does, please refer them to DAI, or to their local or national Alzheimer’s organisation, as many are also now providing online support.

These are extraordinary and extremely stressful and upsetting times for most people, perhaps especially older persons and marginalised groups such as people with dementia, and the information  below may be of interest.

It is a challenging time for everyone, and enhances why access to clear, accurate, and up-to-date information is essential.

Alzheimer’ Disease International (ADI)

ADI has recently published a position paper on COVID-19 with members of their Medical and Scientific Panel, which as their strategic partner, our Chair Kate Swaffer was asked to contribute as an author, and provide a quote. The global impact of COVID-19 is unprecedented, particularly on vulnerable groups such as people living with dementia and their families and caregivers. We hope that by sharing such information, we can assist persons and families in making informed decisions about how, when and where to seek help at this difficult time. You can read the full article here…

Within the article, several important topics are addressed:

  • Is COVID19 different for people with dementia?
  • Different countries’ guidance on how and when to seek further treatment
  • Difficult decisions around hospital admission and triage
  • Other information on COVID prevention and treatment and additional challenges to consider for people living withdementia
The World Health Organisaton (WHO):

The WHO provides daily updates and many other resources – https://www.who.int/emergencies/diseases/novel-coronavirus-2019 and including a very recently released publication for children – https://www.who.int/news-room/detail/09-04-2020-children-s-story-book-released-to-help-children-and-young-people-cope-with-covid-19

The following is a précis of recently received information from the WHO Working Group webinar on COVID-19 and Non Communicable Diseases (NCDs) webinar:

The United Nations three strategic priorities:
  1. Contain the spread of the COVID-19 pandemic and decrease morbidity and mortality (WHO SPRP/2)
  2. Decrease the deterioration of human assets and rights, social cohesion and livelihoods
  3. Protect, assistant and advocate for refugees, internally displaced people, migrants and host communities particularly vulnerable to the pandemic.
The WHOs three strategic priorities:
  1. Rapidly establishing international coordination and operational support
  2. Scaling up country readiness and response operations
  3. Accelerating priority research and innovation.

Links between COVID-19 and other Non-Communicable Diseases What we know so far:

  • People of all ages can be infected by COVID-19.
  • The risk of becoming severely ill with the virus appears to increase for people who are 60+.
  • People living with NCDs also appear to be more vulnerable to becoming severely ill with the virus, in particular people living with:
  • Cardiovascular disease (e.g. hypertension, persons who have had, or are at risk for, a heart attack or stroke)
  • Chronic respiratory disease (e.g. COPD)
  • Diabetes
  • Cancer
  • Smokers are likely to be more vulnerable to COVID-19

The International Disability Alliance (IDA) is providing many updates to the disability community, as well as hosting webinars and live Facebook chats. DAI has regular opportunities through the IDA to contribute to policy and publications about disability to ensure people with dementia are included.

Many other orgnaisations are hosting webinars and live Facebook chats; listing them here is difficult as there are simpy too many, and new opportunitiues from different organisations and individuals are emerign every day.

Please contact us if we can assist in any way.

What we can’t do alone, we can do together.

Human Rights in Residential Aged Care

Image source: Devon Bunce. Procuded as part of the Summit: Human Rights for People Living with Dementia

In this time of COVID-19, when everyone is being asked to keep a distance from each other, and to remain isolated, some groups in our community who already experience social isolation and confinement. This especially includes older people, and those living in nursing homes (residential aged care), as those providing care being encouraged to become more risk averse, benevolent and paternalistic in their approaches to ‘care’.

Different countries seem to have approached the safety and welfare of vulnerable groups in varying ways. For example. in the UK, we have heard anecdotal evidence from colleagues and members that doctors are prioritising the health – and lives – of younger people over older people, and we have heard of many deaths of older people in the UK because of this inhumane approach. In Australia, care providers were advised the following: “We got a sector email yesterday to providers to say that keeping disabled ppl locked up wasn’t environmental restraint if it was for ‘therapeutic’ purposes and on medical advice. “

In part due to these types of responses to the Coronavirus pandemic, DAI Chair, Kate Swaffer felt it timely to report on the current outcomes of a research project she was involved in at the University of Technology Sydney and the University of Wollongong.

The project is called ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’.

The aims of the project were to explore:

  • current barriers to liberty and community access for people living with dementia in RACFs; and
  • the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.

The three project outcomes of the project so far include a published article (open access online), an anthology and the project report, as attached below.

Journal Article* – Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes (2019)
Authors: Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Anthology – Human Rights for People Living with Dementia: An Australian Anthology (2020)
Edited by Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming

Project Report – Safe and Just Futures for People Living with Dementia in Residential Aged Care (2020)

Safe and Just Futures was funded by a Dementia Australia Research Foundation Victoria Project Grant, with additional funding support from Law Health Justice Research Centre, University of Technology Sydney.

The research team was led by Dr Linda Steele (UTS), with associate investigators: Kate Swaffer (DAI, UOW and UniSA), A/Prof Lyn Phillipson (UOW), Professor Richard Fleming (UOW), and , and research assistant Ray Carr (UTS).

The research team thank the presenters at the Summit who enriched what was learnt through the data. The project would not have been possible without all of their informed input and enthusiasm. They also thank the advisory group, including:

  • Dennis Frost
  • Tamar Krebs (Group Homes Australia)
  • Lynda Henderson
  • Elaine Pearson (Human Rights Watch)
  • Bobby Redman
  • Dubhglas Taylor
  • Eileen Taylor
  • Karen Williams (ADA).

*Reference in Chicago Style:
Steele, Linda; Swaffer, Kate; Phillipson, Lyn; Fleming, Richard. 2019. “Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes.” Laws 8, no. 3: 18.

Clowning and Dementia, by Professor L Brandão

Join us soon for our February 2020 “A Meeting Of The Minds Webinar”

Clowning as a medium of promoting the communication and wellbeing of adults living with cognitive impairments

Presented by Professor Lenisa Brandão, on

  • Wednesday, February 26, 2020 (USA/CA/UK/EU)
  • Thursday, February 27, 2020 (AU/NZ/JP/SGP/TWN)

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


About the Webinar: In this session, Professor Brandão will talk about her journey as a Speech-Language Therapist in becoming a clown facilitator for promoting communication and wellbeing. She will tell the story of the clowning group of older adults living with aphasia with whom she works with in Brazil. Professor Brandão’s presentation will also explain the value of nonverbal communication. Additionally, she will outline the key elements that made her choose active clowning as a medium to promote the experience and expression of communicative empowerment. Finally, Lenisa will provide an overview of her professional plans in working with clowning and older adults who live with aphasia and/or dementia.

About Professor Lenisa Brandão: Speech Language Therapist, Doctor in Psychology, Posdoc in Cognitive Science and Psycholinguistics. Senior Atlantic Fellow at the Global Brain Health Institute. Herthesis was about how people living with Alzheimer’s disease (AD) tell personal stories and how that relates with their cognitive abilities. Lenisa’s posdoc study was about how visual and verbal prompts can help people with AD maintain topic and express more ideas in conversations. Her recent work concentrates in the use of theatre and clowning as a medium of expression for people who survive stroke and live with aphasia.

Lenisa’s personal experience: her father lives with normal pressure hydrocephalia and her grandmother (a great story teller) had aphasia in the last years of her life.

Wednesday, February 26, 2020 (USA/CA/UK/EU):
  • 10:00 am  Honolulu
  • 12:00 pm  Pacific
  • 1:00 pm    Mountain
  • 2:00 pm    Central
  • 3:000 pm  Eastern
  • 5:00 pm    Porto Alegre, Brazil
  • 8:00 pm    London/Glasgow/Dublin UK
  • 9:30 pm    Paris, Munich, Amsterdam, EU
Thursday, February 27, 2020 (AU/NZ/JP/SGP/TWN/CHN):
  • 6:00 am    Brisbane, AU
  • 6:30 am    Adelaide AU
  • 7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
  • 4:00 am    Perth AU/Taipei//Beijing
  • 9:00 am    Auckland, NZ

The Webinar runs for 1.5 hours.  

Check your time if not listed above with this link. 

Register now…


COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

Donations are appreciated.

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

WITHOUT YOUR 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 300.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI

Become a DAI Associate or Strategic Partner today

Volunteer for DAI

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]

Thank you.

You can view videos of previous DAI “A Meeting of the Minds” Webinars on the You can view videos of previous DAI “A Meeting of the Minds” Webinars on the DAI YouTube Channel

Please note: Whilst we usually publish the recording of the event on YouTube afterwards, it does not include the Q & A sessions, and occasionally, we do not publicly publish recordings of your online Webinars at all, so if you don’t register to attend, you may miss seeing our events.

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. 

Happy New Year & Happy 6th Birthday DAI lo

Welcome to 2020, and Happy 6th Birthday, and congratulations to everyone at Dementia Alliance International (DAI) for such a successful 2019.

Today we share some of our achievements for 2019, which include (but are not limited to) the following:

  • Celebrating our 5th birthday on this day last year! Special thanks to Graeme Atkins for his delightful song
  • Our continued strategic partnership with Alzheimer’s Disease International; we thank them for their continued sponsorship and support
  • Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
  • Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
  • The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
  • Collaboration with the Alzheimer’s Society UK and the 3 Nations Dementia Working Group on a Directory of Resources on advocacy, and a short video: The Many Voices of Dementia, released in July
  • DAI held its first Capacity Building Workshop in Las Angeles in July
  • DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
  • Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
  • A second volunteer, Tamara Claunch from Houston Texas joined  long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
  • Membership is increasing steadily
  • Increases to additional new free members services, including, for example two Living Alone Social peer to peer support groups
  • Updates to many of our Governance documents and By Laws, soon to be announced and shared
  • It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
  • We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
  • The WHO launched their new Quality Rights initiative and Toolkit. DAI members Professor Peter Mittler and Kate Swaffer both contributed significantly to this on behalf of DAI
  • Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
  • Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
  • We have two formal publication in progress, finally, to be released sometime in 2020
  • Finally, please find the time to complete the DAI Survey on Advocacy and involvement in Dementia Research and Policy; Responses are needed by January 15, 2020. Thank you.  

Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.

DAI thanks you all for your hard work.

Universal Health Coverage Day 2019

December 12  is  International Universal Health Coverage Day, a day where  we must remind governments AND health care providers that everyone has a right to health.

As background on the history of this day, in 2014, the Universal Health Coverage Coalition started to celebrate 12 December as Universal Health Coverage (UHC) Day,  commemorating the date on which the UN General Assembly officially recognised the importance of UHC. It is a United Nations-designated day, which was officially resolved on 12 December 2017.

Since then, the day has become the annual rallying point for the growing global movement for #Health4All.

Every person—no matter who they are, what health condition they have, or where they live, should be able to get the quality health coverage and services they need without facing financial hardship.

DAI knows that most people with dementia do not receive full health coverage, nor adequate post diagnostic support to live with dementia; instead, they are too often only advised to go home and prepare to die.  And for those people with dementia and their families who choose a different pathway, the cost is often crippling.

Three months after the historic high-level meeting the the United Nations General Assembly on universal health coverage (held on 23 September 2019),  we understand that dementia was not specifically included in discussions, in spite of the many years of global advocacy by DAI and ADI.

This is not a positive outcome for the more than 50 million people currently livign with dementia!

This high-level meeting, held under the theme “Universal Health Coverage: Moving Together to Build a Healthier World,” aimed to accelerate progress toward universal health coverage (UHC), including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.

Yet, we know that people with dementia are still being denied access to health care, all over the world. 

Let’s all rally together to ensure everyone, including people with dementia are not left behind in the 2030 Sustainable Development Goals Agenda!