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
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.
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.
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:
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.
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.
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.”
People with dementia are still not provided with disability assessment or support soon after diagnosis.
Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
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:
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.
35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
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.
Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
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.
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.
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.
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.
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.
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 contactedNCRADabout 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 theNational Forumin 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 recommendThe Alzheimer’s Associationfor 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 contactNCRADto see how you can help further research. I donated blood along with donating my father’s brain.
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:
The Many Voices of Dementia Advocacy, a short film with seven people living with dementia in different countries, talking about their experiences of self-advocating, their motivation and top tips.
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.
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.