Category Archives: Uncategorized

Where in the world is DAI? No

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.

#Hello, my name is Bobby Redman

On Day 5 of Dementia Awareness Month / World Alzheimers Month, we share Bobby Redmans story.  Thank you Bobby.

Note: as many members of  DAI prefer to call it this month Dementia Awareness Month, so that anyone who does not have the Alzheimer’s type of dementia does not feel excluded.

Image source: Bobby Redman

Hello, my name is Bobby Redman.

In 2015 at the age of 66, I was given a provisional diagnosis of mild cognitive impairment / fronto-temporal dementia after experiencing a range of symptoms, including a noticeable change in my ability to perform day to day tasks, some communication issues (both in speech and in my ability to follow conversations); and changes in my personality, picked up by close friends.

Since then, in spite of my scans identifying some shrinkage of the brain, with gaps appearing in my frontal lobe, the neurologist has been reluctant to confirm the diagnosis, given that “I am functioning too well” (His words not mine). I believe that some doctors are reluctant to give the diagnosis of dementia, thinking that they are being kind. With no cure being available, at this stage, they seem to think that an early diagnosis is pointless.

This is frustrating for those of us living with dementia that don’t see a diagnosis as an end, but as an opportunity to develop a support plan to include available interventions to assist us to maintain our levels of functioning.

Recent psychometric testing has confirmed what I have been telling the specialists for a while, in that my cognitive skills are significantly declining along with indications that my motor cortex is impacted, resulting in a decline in my motor skills. This confirms that I have a neurodegenerative disorder, and further tests are underway to see if they can give it a name – this would be far more important if there was any treatment / cure for the condition.

Before retirement, a year prior to my diagnosis, I practised as a psychologist, working with people with a disability. Much of my work was working with people and their carers to develop programs to assist people to function to their highest capacity, on a day to day basis.

This professional skill is why, I believe, that I continue to function “too well” in my doctor’s viewpoint. Trust me, it is not easy to be observing my own decline and capacity and to continually be looking for ways to re-habilitate myself, it would be wonderful to have a professional doing this for me, but the mental focus required for this is part of my personal program, so I don’t complain.

As I start to slip and am obviously less competent than I had been, some of my regular friends are starting to realise that things are not going as well as they appear. I am lucky, many of them are stepping forward and offering support – coming from a strong volunteering background, many of my friends, whom I have volunteered alongside are good, kind people wanting to help.

They don’t always fully understand, and I have to get better at letting people know what sort of things would help me….I am trying!

My newer friends are those who I have met through our work in dementia advocacy. This group of friends are like a global family; a family who you know is there to back you up when you are having a bad day. Without organisations like Dementia Alliance International (DAI) and Dementia Australia , I am unlikely to have ever got to know these people and who’s to say that I would be feeling as positive about my daily living if this had been the case. I thank my lucky stars, each day, that I have this group of amazing people on whom I can count – they give living well with dementia, real meaning.

Bobby Redman © 2019

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

#Hello, my name is John Sandblom

Welcome to World Alzheimer’s Month #WAM2019.  As we did in 2018, we aim to highlight the voices of our members, and this year, our families. The voices of everyone impacted by dementia matter, and today, we kick off #WAM2019 with co-founder John Sandbloms story of being diagnosed with dementia in 2007.

Johns personal story of being diagnosed with dementia was first published on his website, and is re-published here with permission. You can read his blogs here…

Early (Young) Onset Atypical Alzheimer’s Disease – one person’s story.

John Sandblom, USA

My name is John Sandblom and I am diagnosed with Young Onset Atypical Alzheimer’s Disease. I was first diagnosed at the age of 48 in 2007 with FTD by a gerontologist that specialized in dementia. He was the same physician that diagnosed my father with Alzheimer’s Disease in his early 70’s. My mother had been saying that my father was “losing it” for many years but I never really understood what she meant and if she was just complaining about normal aging issues with my father. I knew that he had made some very ill advised decisions in his late 40’s, 50’s and 60’s but I once again NEVER thought about the possibility of dementia nor did he ever admit that there was anything wrong with his brain or thinking.

My mother passed away from lung cancer and it was at that time we realized my father had some serious problems with thinking. We moved him in to a retirement community apartment and he managed on his own for a few years. He then began exhibiting serious problems with memory and behavior and it was no longer safe to allow him to drive according to his doctor. I was the only child that lived in the same city so I moved him in with me and we took away his car. This was met with extreme anger but we understood it was the disease and the fact that he never admitted or understood what was happening with him.

I suspect that he had effects from the disease as young as I did but he was self employed so when he made bad decisions it led to one business going under and him starting a new one. His bad decisions all make sense to me now because he had been an extremely successful businessman in his earlier years.After a couple of years living with me it was no longer safe to leave him home alone because he had nearly caught the house on fire and had flooded an upstairs bathroom because he forgot he left the water running. We got him placed in what was considered the best memory care unit in the area.

Fast forward to October of 2007. I had been on short term disability from work labeled with depression (I knew I wasn’t depressed but also knew something was wrong so whatever allowed me to be off work was OK) when my wife went against advice from others and called the physician’s office that had diagnosed my father. I went through many scans including a PET scan and neuropsych tests. The physician decided I had FTD. I was put on long term disability and applied for Social Security Disability. After an appeal the Social Security Disability was approved.

My wife and I started going to a support group that is provided by The Alzheimer’s Association, an organization I highly recommend for anyone with any type of dementia and their caregivers.  At this point I took that doctor’s word that I had FTD. After a little over a year I began to ask questions that he didn’t have answers for because I was not progressing as he expected. He became angry with me and I left his office that day thinking no one should EVER be treated that way by a health care provider. I had asked a friend I had made through the FTD Support Forum about getting in to see her doctor at Mayo Clinic in Rochester MN whose name is Dr. Bradley Boeve and is world renown in the dementia field.

He is a cognitive neurologist specializing in dementia which is what I highly encourage anyone that wants to be evaluated to seek out. I got an appointment with Dr Boeve but it would be 5 months before I could make it to Rochester, MN for a week that worked with my wife’s schedule and his schedule. He is the chair of his department and has substantial amounts of his schedule blocked out for research and teaching. He started from scratch and put me through an unbelievable amount of tests assuming nothing. They even repeated my PET scan.

By Thursday of that week he met with me and told me it was medically undeniable that I had a neurodegeneratve brain disease (dementia) but the question was which one? My scans did not match up to anything they normally see as the majority of the damage at that point was in an area described to me like a junction box for all the things the brain does and where executive function is controlled. This explained why I seemed fairly normal but could no longer be successful at work and had problems with things like time management. I could no longer multitask very well at all. But when most of your problems are all about executive function most people think there is nothing wrong with you. In my case I knew something was horribly wrong.

This was never in question for me. In fact, a couple of years before I was ever diagnosed I had an episode that I still can’t really explain but I got scared that I had Alzheimer’s Disease so I told my family doctor that which was met with “don’t be silly, you don’t have Alzheimer’s Disease”. It really wasn’t his fault, most people wouldn’t have had that thought in the first place let alone suggest it to their doctor at age 46. And it highlights a very big problem in healthcare today, training general practice, family practice, psychiatrists and internal medicine doctors on when to refer to a cognitive neurologist for evaluation of early onset dementia. Dr. Boeve told me it is his experience that a patient is usually correct. So if someone tells their doctor that dementia is a fear they should always be evaluated properly.

A while before I went to Mayo Clinic I met a local cognitive neurologist that specialized in dementia and was fairly new to the area.  She seemed like a very good person and a very knowledgeable doctor so I made an appointment with her. She held off doing any tests because she knew Mayo would want to do a lot of their own. Her name is Heike Schmolck, M.D. and I highly recommend her to anyone in Central Iowa who needs a specialist in dementia. After the findings at Mayo she agreed with those and felt like it was most likely that I had atypical FTD.

So I lived with that idea until early November of 2011. My father had passed away from complications from his dementia in the spring of 2010. I immediately contacted NCRAD about donating his brain for research. I was told at the time that I would never gain any knowledge from this donation, that it’s only purpose was for research which I want to support in every way I can so that hopefully my children and grandchildren will not have a chance of the same fate. Dr. Boeve had told me and my local doctor agreed that I had the same thing my father had suffered from and that there most likely is a genetic connection meaning any of my offspring would face a 50/50 chance of getting the disease themselves. In early November of 2011 I received the full autopsy report on my father’s brain. To my shock and the shock of my neurologist it showed he had Alzheimer’s Disease. That led to changing my diagnosis to Early Onset Atypical Alzheimer’s Disease (frontal variant). 

It is very scary for anyone with dementia to think about the distant future. To think about that is to admit what we will be reduced to and how hard it will be on those that love us. So I chose to concentrate on what I can still do to feel useful and feel like I am giving back in some way. I do volunteer work for my local chapter of The Alzheimer’s Association. I have been to the National Forum in Washington D.C. three years in a row (2010,2011 & 2012) to visit with our congressional representatives about issues important to those that suffer from dementia. I feel it is my obligation to do whatever I can while I still can to help all those that suffer and in memory of those that have suffered like my father. I stay very upbeat and not above making a joke about my condition on a regular basis.

I don’t take it lightly but like someone once said, in situations like this you can laugh or cry and I prefer to laugh.

Whether you are new to dementia or this is not a new subject for you, I highly recommend The Alzheimer’s Association for resources in your area and a lot more. When you go to the national website that is linked, you will find in the upper right hand corner there is a place where you can enter your zip code to find out where your nearest chapter is located. These people are always happy to meet with you or talk on the phone and help in any way they can! The association is also the largest private source of research funds for dementia in the world. If you can afford it, please donate to them! I also encourage anyone with dementia to contact NCRAD to see how you can help further research. I donated blood along with donating my father’s brain. 

Are you or someone you know diagnosed with Alzheimer’s or a related disease? Would you like support from others that are  diagnosed? If so direct them to http://www.dementiaallianceinternational.org/membership/  to sign up for FREE membership and many support options.

The Global Voices of Dementia: Resources for self-advocacy

July 16, 2019

The global voices of dementia self-advocacy

Dementia Alliance International (DAI), the Alzheimer’s Society UK,  and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.

The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.

Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.  

As part of the project two resources were created:

Christine Thelker’s story

The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.

 After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.

Hilary Doxford’s story

Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.

I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.

5 Top Tips from self-advocates

 “Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia

“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada

“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA

“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.

“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.

For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:

The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are  people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.

With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.

By working together, the impact of self advocacy makes a much bigger difference.

Global self-advocates who feature in the film and supported the project (Left to Right): Amy Su, Dennis Frost, Kate Swaffer, Kris, Christine Thelker, Agnes Houston, Hilary Doxford, Petri Lampanen and Veda Meneghetti.

 

 

 

Brian Le Blanc: Into the fog

It’s wonderful to share a recent Vimeo produced sharing the story of Brian Le Blanc with our other DAI members. Brian is a past Board Member of DAI, and an active advocate and international speaker.

He was diagnosed with Younger Onset Alzheimer’s disease (Early onset is the term used in the video). Thanks for all you do Brian and for this insight into your life with dementia.

Two of the founders of DAI (the late Dr Richard Taylor and Kate Swaffer) almost always ended their emails with ‘Onwards and upwards in the ever increasing fog!’

Fog is a definitely a good way to describe it!

And it’s a heartwarming break from the COSP this week!

Civil Society forum at the COSP

Tamara, Kate and Christine

This week Dementia Alliance International (DAI) is representing its members, and indeed, all people with dementia globally in New York at the Conference Of the State Parties (COSP) on the Rights of Persons with Disabilities (CRPD).

Christine Thelker braved travelling alone from Canada, and arrived in spite of a complete lack of disability support from Westjet airlines. Kate Swaffer traveller”d from Australia, also alone thankfully with excellent disability support. Airlines and airports in particular have a long way to go!

DAI is very blessed to also have a volunteer attend to support them this year, Tamara Claunch from Houston, who’s also a member of our soon to be announced Professional Advisory Council.

Remarkably, she has self funded to support our organisation, and we thank her sincerely for this incredibly generous gift to us all.

Stay tuned here, as our next blog will provide the times and the link to the first ever Side Event at this Conference on dementia as a disability.

The link to the United Nations live tv can be accessed here to watch the proceedings.

It may not be obvious to all, but this week really is one of the most significant actions of advocacy to improve the lives of 50 million people currently living with dementia.

June Webinar: Living with dementia in New Zealand

Join us for the next DAI “A Meeting Of The Minds Webinar, Living with dementia in New Zealand, presented by Liz Smith.

 

 

 

 

 

 

 

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

About the Webinar: Alzheimers New Zealand asked Litmus to research what it is like to live with dementia. For the research, we talked to people with dementia, their care partners, and couples living with dementia. I want to share what I learned from listening to 49 New Zealanders living with dementia. These people generously shared the stories of their lives after receiving a dementia diagnosis, the support services they need, how they live meaningful lives, and the impact on their relationships.

In the webinar, Liz will share six findings from the research.She has chosen these findings as they made her reflect on my understanding of dementia and challenged my attitudes.

About our speaker: Liz is a co-founding partner of Litmus – a leading research, evaluation, and design agency in New Zealand. She says: I have a curious mind. I am a solution seeker. I never claim to know the ‘right’ answer, but I have the tools and expertise to find one. I am a champion for equitable health and disability services. I believe people’s stories matter. Understanding people’s lives are central to creating positive system and social change. I have led research into the lives of disabled people, people living with cancer, families with disabled children, people living remotely, and those living with addictions.

I am happiest when I step out of my comfort zone, and I am dealing with complex issues and working with multi-disciplinary teams. I have worked on some of the leading social issues facing New Zealand – bowel screening, cancer care, well child, and mental health and addictions.

Register here…

Wednesday, June 26, 2019 (USA/CA/UK/EU)

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, June 27, 2019 (AU/NZ/JP/SGP/TWN/CHN)

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…

 

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

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE FREE 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
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  • $US 120.00 covers the average monthly cost of the MailChimp subscription
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THANK YOU.

Dementia as a Disability

Announcing the DAI Side Event during 12thSession of the Conference of States Parties to the UN CRPD.

Dementia Alliance International is pleased to announce we have been accepted to host a Side Event at the upcoming 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York on June 13, 2019. We are honoured to have a number of co hosts supporting this event, and to be supported by the United Nations and World Health Organisation, as well as the Australian government.

Dementia: the leading cause of disability

DAI Side-event during 12thSession of the Conference of States Parties to the UN CRPD

In 2019, the Dementia Alliance International (DAI) is celebrating 5 years of existence, and at this Side Event, we recognise the progress that has been made by people with dementia in the advancement of the rights of persons with dementia, as persons living with acquired cognitive disabilities.

Through the side-event, DAI aims to highlight the progress made towards claiming their rights as persons with cognitive disabilities over the past 5+ years, aiming to highlight dementia as a disability, and identify areas of further collaboration between the members of DAI and its international partners and all relevant stakeholders, including United Nations agencies.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries.

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care.

Speakers:

We are honoured to have Mrs. Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities to open the Side Event. Other speakers will discuss the relevance of their work to dementia as a disability; e.g. Bethany Browne from Human Rights Watch will discuss the abuse through chemical restraint of people with dementia living in USA nursing homes, from the Human Rights Watch report, “They Want Docile.”

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening the Side Event

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “QualityRights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

Background and history

Dementia Alliance International (DAI) is a 501(c)3 registered charity, and is the world’s leading organisation exclusively for people diagnosed with any type if dementia. It is an advocacy and support group of, by and for people with dementia, and the “theglobal voice of dementia”currently representing members in 49 countries. DAI’s vision is “A world where people with dementia are valued and included”. DAI represents the 50 million people currently living with dementia, and the projected 82 million in 2030 and 152 in 2050. Our membership is currently represented in 49 countries around the world, including many members living in the Low and Middle Income Countries.

From grassroots advocacy to global activism, DAI seeks to claim the human rights of people with dementia and ensure that our rights as disabled persons are secure. Dedicated to empowering all people to live a better life with dementia, DAI believes in the power of energy, creativity, human connections and joy as the shared inheritance of every human on earth. Our members advocate and educate locally, nationally and internationally. We speak at professional conferences and lead vast online communities of people. We work to reduce stigma and discrimination, bringing awareness to the truth that life can be well-lived beyond any diagnosis or disability, including dementia.

Concluded by the OECD in 2015, “people with dementia receive the worst care of any disease in the developed world” and indeed, DAI members report, anywhere in the world.

While it is challenging to fix serious problems that are global in scale, we have done it before. As a species, we have eradicated smallpox and polio. We have increased global life expectancy and we have reduced global childhood mortality rates.

The challenges we face are big, but this will not drive us to inaction and hopelessness, for we each carry the burden of making things better in our own chosen sphere.

We didn’t choose to have dementia, but we do choose to work towards a world where we have equal social inclusion as all others, and full and equal access to universal health care, including rehabilitation, and proactive disability assessment and support immediately after a diagnosis.

At Dementia Alliance International, we believe it is imperative to change misconceptions about dementia, address stigmas associated with it, discourage psychological and physical abuse of all disabled people, and demand that the voices of people with dementia be included in decisions directly affecting us. The stigma and discrimination experienced by people with dementia – and their families – is very real and incredibly disabling. Countering the myth that people with dementia go from the point of diagnosis, immediately to the end-stages of the disease, is extremely important.

At present, people with dementia are disenfranchised upon diagnosis. Our legal and social status is immediately reduced, and our human rights are stripped away.  We are excluded from equal and full inclusion in public spaces and activities and even viewed by some as “less than human”. Much of our work centers on reducing stigma and discrimination, bringing awareness to the truth that life can be well lived beyond any diagnosis – including dementia. Disability rights are another important arena. Like other disabled persons, we have the right to equal and full inclusion in public spaces and activities. And with appropriate disability support, we can continue to live meaningful and positive lives.

The misguided under-estimations of the potential of people with dementia continue to create oppressive and humiliating barriers to our full and equal engagement in society, and the continuing major breaches of our human rights through the systemic and endemic overuse of chemical and physical restraints, and though segregation and institutionalisation continue. Hence DAI members individually and collectively advocate for rights, and educate locally, nationally and internationally, at professional conferences, and in the vast online communities they have built, so that we are not reduced in legal or social status. DAI is dedicated to empowering all people live a better life with dementia.  It advocates for the right to equal and full inclusion in public spaces and activities.

DAI Chair, Kate Swaffer was an invited keynote speaker at the WHO First Ministerial Conference on Dementia in March 2015, and made rights and access to Universal Health Coverage the focus of her presentation. DAI’s global focus has been on human rights and disability rights, and we continue to work with organisations such as the World Health Organisation (WHO), the United Nations and others, to ensure that since the WHO Global action plan on the public health response to dementia 2017 – 2025, was adopted, national, regional or local dementia plans will include human rights, and people with dementia have full and equal access to the CRPD.

DAI is working hard towards ensuring dementia is not left behind in the 2030 Agenda, and its Sustainable Development Goals’ are not only achieved, but that dementia is also realised as a condition causing cognitive disabilities in its own right.

Co-sponsors: the Australian Government, the International Disability Alliance, Human Rights Watch, Alzheimer’s Disease International, Worldwide Hospice Palliative Care Alliance, and the Global Rehabilitation Alliance.

Download the event flier here…

Report: Forgotten in a crisis

ADI, GADAA and Alzheimer’s Pakistan launch report on Dementia in Humanitarian Settings
Forgotten in a crisis: Addressing dementia in humanitarian response, published yesterday by the Global Alzheimer’s and Dementia Action Alliance (GADAA) with ADI and Alzheimer’s Pakistan, has revealed that people with dementia are being ignored in times of humanitarian crisis.
This report contributes to a growing awareness of the need to address disability in humanitarian settings and is the first report to specifically highlight dementia.  
While there are guidelines in place to mandate inclusive support for people at-risk, they are rarely being implemented and do not currently go far enough to meet the specific needs of people with dementia, according to the report.
Paola Barbarino, CEO of Alzheimer’s Disease International, said: 
There are 50 million people living with dementia globally, 60 per cent in low and middle income countries where diagnosis is low and humanitarian emergencies are widespread. These people are currently ignored in emergency response planning. We are calling on all agencies to increase awareness and to adapt strategies, to better recognise the needs of this often hidden group.”

Dementia Alliance International was pleased to contribute a small part to this very important report.