Another #DAI #Hello story, this time from DAI co founder, Kate Swaffer.
Hello, my name is Kate Swaffer. I am the current Chair and one of eight co founders of Dementia Alliance International (DAI). I received a diagnosis of the semantic variant of Primary Progressive Aphasia just over 11 years ago at the age of 49, although at the time I was told it was Sementia Dementia when first diagnosed.
The first 12-18 months were spent in fear and even thoughts of suicide. I cried for weeks, expecting the worst. My whole family loss hope for our future together.
Why? Well, not one person, including health care professionals told us there was still a good life to live, even with dementia.
Then through Dr Google, I met the late Dr Richard Taylor online, and first through his writings and then chatting via email and google hangouts, I then started to realised my life could go on. I used to tell him often, he saved my life!
The other life saving thing that happened, was being at university as they simply saw me as a person with acquired disabilities, and supportd be via their Disability Services to continue to live my life! This link takes you to an article I wrote about dementia, rights and disability.
Studying for me was a hobby, so it was meaningful, and fun. It also has the benefits of neuroplasticity, for which there is growing evidence for its value in terms of rewiring our brains.
Then, and now, most people have the very wrong misperception that a person diagnosed with dementia goes from diagnosis, almost immediately to end stage, almost overnight, even many of the health care professionals.
It may be at an unconscious level, but most people who are newly diagnosed are still being Prescribed Disengagement®, also a reason that keeps me motivated to contiue to be an activist for changing what happenes at the time of diagnosis, and campaigning for rehabilitation and other disability support for us all.
At best, we are told to get acquainted with community or aged care services, and to get our end of life affaris in order. We rarely receive referrals to disability services, or other allied health professionals such as speech pathologists to suppot language and communication disabilities.
This lack of post diagnostic support is a major breach of o ur most basic human rights.
I’ve written books and many articles since being diagnosed with dementia over the years, and continue to do so, as well as being very involved in research about improving the experience of diagnosis and quality of life for all people with dementia. I’m deeply grateful that Richard Taylor wrote and recorded a beautiful review of my first book, What the hell happened to my Brain: Livng beyond dementia.
My passion and goal is to empower people with dementia to live more positively and more independently with dementia, for as long as possible, rather than to only go home and prepare to die via aged care. The other is to find a way for us all to work together globally, to advocate for global change.
We are delighted to be able to share the story of one of our newer Canadian DAI members, Paul Lea. Thank you Paul, for being a wonderful new friend to those of in the support group you have joined, and for joining the Action Group to help us with our work for all members.
The tragedy of Pauls story, is that even in the 21st Century, in spite of all the advances in diagnostics and research, people are being discounted when they present to health care professionals with symptoms of dementia! His snippet on revenge near the end of his story, will for many, be very amusing.
“I’ve always been a fairly healthy person both physically and mentally but in 2005 I started noticing things were sort of unusual. Let me clarify that I started forgetting where I put things like my keys etc., sort of brushed this off and went on with my life.
I worked for a major clothing manufacturer where I was a quality auditor. I started noticing that I was having some difficulties performing my job. My responsibilities were to check the quality and the sizes of the jeans or shirts or jackets. I started having difficulties once I did the measurements of putting them back into the plastic wrappings. I was getting angry at myself because I didn’t understand what was going on and I knew sooner or later that my supervisor would question why I was having my coworkers, fold and put back into the plastic wrapping. I started noticing that at the top of my eyes were like fractured vision or like a kaleidoscope; I could still see and do everything else so it was just a nuisance.
As days and weeks went on I noticed other things like difficulty reading. I saw my family Dr. and told him about what was going on and he made a note in my file. In the spring of 06 while I was working my right leg went kind of like rubbery and there was a feeling of pins and needles and I could not walk. Now I have sciatica on the right side so I figured it was acting up again and also brushed it off and continued working. I should mention that I was getting headaches not severe but still enough that I have to take aspirins now this is unusual because I rarely had headaches so once again I saw my family Dr. and explained what was going on and he made some more notes in my file.
Fast-forward to the end of 07 and I thought I had an idea what is wrong with me. I had seen on the TV a commercial about a man going to the store and buying a lemon and then going to put the lemon in the fridge and see that all that is in the fridge is lemons. The theme of the commercial was Dementia.
So I looked up Dementia on the computer and mentally went over all of my symptoms and what they said were signs and I decided that I had Dementia. I went to my doctor and explained to him my findings and asked if I could get an x-ray for my neck because I thought maybe I had a pinched nerve because my right arm also went numb and limp. At this point I found myself arguing with my family Dr. who I have known for 30 years and thought of him as a friend. After about 20 min. he finally gave in and set up an appointment to get an x-ray of my neck.
When the results came back negative I asked him why did my leg and my arm go limp. So I asked him, do I have Dementia? He looked at me and laughed and said no I do not have a Dementia and that I am a hypochondriac and stop smoking. I left his office a little confused but once again I brushed it off.
Now this was the first week of December 2008. I drove my wife and daughter to the airport because they were going to Jamaica, on the way I got confused on which exit I should take. This was a little disconcerting because I take this route every day to go to my work. Aft I finally got them to the airport and brushed it off.
A week later I picked them up at the airport and drove them home but once again I found myself being confused as there was construction and I could not figure out how to get around tit to get them home There was a line of angry sounding their horns., so I closed my eyes hit the accelerator and went through a stop sign and got them home.
After Christmas I’m at the bank and all of a sudden I get this sharp very sharp pain behind my left eye kind of like a brain freeze when you had something very cold but this is different because I also lost vision in my left eye. I finished my business and walked to my car but then, I again lost vision my left eye. I chuckled thinking what is be next and I didn’t have to wait long because I as I was walking towards my car but I ended up walking into the car behind mine .
I’m driving home and I am noticing that I keep veering to the left ,I decided that I must need glasses and went to an optometrist. During my examination he asked me a number of questions and he picked up on something and excused himself and asked the receptionist to call the hospital and tell them that I need to be seen as soon as possible as he thinks that I’m having a TIA
So now things seem to be pretty interesting I am a hypochondriac I have lost peripheral in my left eye I keep veering to the left when I’m driving I do not have Dementia and now I’m told that I have or having a TIA in other words a stroke, I thanked the optometrist and went home.
December 26 I’m watching TV and I have the exact same sharp pain loss of vision symptom only this time I really felt strange so I called 911 and was transported to the hospital where I was put into a room and hooked up to a monitor. About a half-hour after that I went and had a CAT scan that I went and had an MRI.
I still did not know what was going on eventually, the doctor came out asked how I felt and I said I’m fine can I go home ?and he said no they are going to keep me overnight and I asked why not he said because I had a stroke.
When I think of someone having a stroke I think of someone who has some form of paralysis or having trouble walking or talking but I had none of these so I asked again can I go home? I told him that I felt fine and I just wanted to go home this time he looked at me and shook his head and said again no but this time, he said I had a massive stroke and I should be dead. I looked at him and saw that was serious and I said I guess I still mean I can’t go home.
I stayed a week in the hospital and he finally said yes I could go home.
My family Dr., yes the same one that called me a hypochondriac was retiring so I went to his party. And I got my revenge, he handed me a camcorder and asked if I could film his retirement party and I said yes no problem. I’m looking at the camcorder and could not figure out how to operate it so I walked around pretended I was recording the celebrations.
June of 09 a psychiatrist gave me some tests and diagnosed me with Vascular Dementia
VIDEO MESSAGE FROM BILL GATES AND MEDIA RELEASE FROM THE WORLD DEMENTIA COUNCIL:
Read the GatesNotes post here: http://b-gat.es/2hZ4qXSand watch this accompanying video in which Mr Gates talks about the areas he believes need focus in order to alter the course of Alzheimer’s disease:
“Respected philanthropist Bill Gates has invested $50 million in the Dementia Discovery Fund (DDF). This is Mr Gates’ first investment in dementia research, and a personal one, sparked by experience of Alzheimer’s in his family, which, in turn, spurred him to spend time learning about the disease. Alzheimer’s is the most common of the diseases causing the symptoms of dementia.
Through this investment, Mr Gates recognizes that dementia is one of the most urgent health and economic challenges facing the world today. It has enormous human and financial impacts. Despite this, we currently lack drugs to prevent or cure the condition. With increasing prevalence rates globally, the need for effective disease-modifying therapies is pressing.
The G7 Dementia Summit in London in December 2013 set ambitions to identify a cure or disease-modifying therapy for dementia by 2025 and seek innovative ways to significantly increase investment in dementia research. The World Dementia Council, established after the Summit to lead global action towards the ambitions, endorsed the creation of an innovative public-private equity fund to accelerate progress to these ends.
Launched in 2015, the DDF invests in pioneering research and companies to speed up the discovery and development of disease-modifying therapies. It is the world’s first-ever dementia-focussed venture capital fund.
Dr Yves Joanette and Raj Long, respectively Chair and Vice-Chair of the World Dementia Council, welcomed the announcement. Dr Joanette said, “We are delighted that Bill Gates is joining the global race to defeat dementia and applaud his foresight. His very significant investment is timely as we are up against the worldwide clock to slow-down or halt the diseases that cause dementia. Bill Gates’ involvement is a major boost in enabling further and faster progress in breakthroughs on which effective new treatments will depend. Such treatments are a crucial component of the wider global agenda on prevention and cure, and improved care for people living with dementia.”
We understand there are a lot of people who see this approach as futile, especially if they have been diagnosed many years ago and their dementia has progressed. Perhaps some even see it as a scam.
However, for many of us diagnosed with dementia who have already worked hard changing our lifestyles and improving our health, and who also believe by doing so we may also have slowed down the progression of our individual dementias, it is still hopeful. Make up your own mind, but please do not discount new evidence.
This protocol is based on evidence based research, and hopefully one day, advice for people with dementia on improving our lifestyle, our diet and offering us appropriate disability support and authentic rehabilitation will become the norm, as it is already for most of the other chronic diseases. Improving well being and quality of life, even if it is not a cure (and even if it does not reverse or stabilise dementia), has to be a good thing…
It was a very lively Q & A Session following this webinar and which lasted over an hour, although for privacy reasons, we never show that part of the webinar publicly.
In DAI’s “A Meeting of the Minds” monthly Webinar series, we feature people who have unique perspectives on dementia and who challenge the status quo, most often speakers who are highly regarded eminent international academics, clinicians and well regarded speakers. These monthly webinars focus on a variety of topics, and provide an opportunity for people with dementia to connect with the wider community of those living with the disease. To participate, you need only an Internet connection, while a webcam and microphone will ensure a fuller experience.
Our guest speaker this month is Dr David Jenkins presenting on Professor Dale Bredesen’s protocol which he is trained to provide for patients titled:
“Preventing, stabilizing and reversing early Alzheimer’s”.
About Dave: Dr Dave Jenkins qualified from Otago University Medical School in New Zealand in 1982. His career includes general practice, senior lectureships at Auckland medical school, executive director for education for an Asian corporate health project, and founding Humanitarian NGO SurfAid and currently is a functional medicine practitioner specializing in stabilisation and reversal of cognitive decline.
Dave has won many awards including the prestigious social entrepreneur award the Rainer Arnold Fellowship and in 2007 and SurfAid was chosen from over 49,000 NGOs was voted “one of the best Non Government Organizations in the world” in 2007 by the World Association of NGOs winning their humanitarian award for that year.
His main work and mission is to dramatically improve the screening, prevention and treatment for all people with cognitive decline in Australasia and beyond. He has trained with Professor Dale Bredesen who has documented reversal in cognitive decline and early Alzheimer’s in over 230 cases using a multifaceted metabolic enhancement program. Dave is now documenting the first reversals of mild to moderate Alzheimer’s in Australasia. Dave is planning to collaborate with Australian scientists and contribute to a multisite trial of “The Bredesen Protocol” in 2017.
About the Webinar:
1. Successful case studies will demonstrate the programmatic components of reversing cognitive decline using the Bredesen Protocols
2. Learn the current challenges of applying the Bredesen Protocols in Australasia and details of the future controlled trials
Take Home Message
Using a comprehensive and highly personalised Functional Medicine approach Professor Dale Bredesen has reversed over 230 cases of cognitive decline including MCI and early and moderate Alzheimer’s at a 88% success rate including improvements in symptoms, cognitive scores and hippocampal volumes. Seventy five percent of those that had to leave work went back to work. Very early signs in Australasia are also confirming that cognitive decline can be prevented, stabilised and reversed using the Bredesen Protocols.
Wednesday July 27, 2017, USA/CA/EU/UK
Start Time (USA/CA/UK/EU):
2.00 p.m. Pacific Time (San Francisco);
3.00 p.m. Mountain Time (Denver);
4.00 pm Central Time (Chicago)
5.00 p.m. Eastern Time (Washington DC, New York);
2.00 p.m. Vancouver, Canada;
11.00 a.m. in Honolulu, Hawaii
10.00 p.m. in the UK (apologies to our members in the UK and Scotland);
11.00 p.m. in Amsterdam, Paris and Budapest (apologies to our members in Europe).
ThursdayJuly 27,2017, 2017 AU/NZ/JPN
Start time (Australia/NZ/Japan/Indonesia)
6.30 a.m. in Adelaide;
7.00 a.m. in Brisbane, Sydney, Canberra, Melbourne;
You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.
COST TO ATTEND: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.
DAI MEMBER: FREE
UNEMPLOYED CARE PARTNER: FREE
EMPLOYED OR SELF EMPLOYED PERSON: FREE: PLEASE CONSIDER MAKING A DONATION
On Thursday March 2, 2017 DAI’s Chair Kate Swaffer represented DAI at an International Women’s Day event Women and Dementia: A Global Challenge, hosted by the Global Alzheimer’s and Dementia Action Alliance (GADAA) in London, following attendance at the World Dementia Council’s 10th meeting in Paris.
As the last two speakers, Faraneh Farin Kaboli from the Iran Alzheimer Association and Kate had less time than planned for their presentations due to a number of things, including the high interest in this event and global challenge, and questions following the other speakers. Kate’s prepared speech notes are being shared here, along with the slides, as the opportunity to get all the messages across was not possible. As her presentation was less formal due to time constraints, Kate did however cover some issues not in her notes, as outlined below.
The two issues she spoke about not referred to in her notes and which are of significant importance to women and dementia, is the missing voices of the young women and children, who have taken on the care role for a parent with younger onset dementia (YOD), and the four forms of stigma attached to dementia and especially to YOD. We experience the stigma and discrimination of dementia, we experience the stigma and discrimination people with mental illness face, as many believe dementia to be a mental illness (which it is not), as women, we still face significant sexism, and then for those with YOD, we face ageism, as we have what many see as an ‘old person’s’ disease.
GADAA will endeavour to make the video recording of this event available for those of you unable to attend, to view next week.
Being bold: living with dementia
By Kate Swaffer
Slides 1 and 2
Thank you for this opportunity to discuss women and dementia, from the perspective of the lived experience, and also from the perspective of the women who are members of Dementia Alliance International, the only global advocacy group, run by and for people with dementia.
Dementia is the biggest health and social challenge facing the developed world, and although I could reflect on the data and the ways in which women are disproportionately affected by dementia worldwide, in the time I have that is not sensible, and our other speakers have already covered it. You can access and read a comprehensive review on the topic in the 2016 ADI report, Women And Dementia: A Global Research Review on the ADI website. Since releasing their report Dementia: A Public Health Priority, in 2012, the WHO has been working on the development of a draft global action plan on the public health response to dementia, due to be submitted at the World health Assembly in May this year for approval.
As an example of the impact on women of dementia, in America, more than two thirds of the five million seniors with dementia of the Alzheimer’s type are women, they are twice as likely as men to develop dementia at the same age, and women have a more severe and rapid decline than men (Szoeke, 2015).
This study also look at the intensity of the impact on women, and noted women get far less support as care partners than men do in a similar role. I can certainly remember the fuss made over men when a mother was away from home, when my sons were at school, and the difference when it was the father who was out of town on business.
This graphic, from a study published in 2016 shows the relationship between males and females and possible risk factors for the development of Alzheimer disease and other dementias. Dementia risk factors, such as smoking, coronary artery disease, and brain injury with loss of consciousness, are more common among men than women. However, other risk factors, such as diabetes, obesity, and hypertension, are also more common among men, but women are disproportionately at risk for dementia when these conditions are present. Most studies of dementia examine risk by age. The longer life spans observed in women does not fully explain the sex bias for Alzheimer disease, but increases the over-all prevalence of all-cause dementia in women among the oldest old. Older age, family history of dementia, APOE-ε4 carrier status, and low education are prominent risk factors worldwide in both males and females.
Cognitive and physical functioning slowly deteriorates even without a person having a dementia in the same way our for example, our eyesight and skin change with ageing, and as we all know, dementia is not a normal part of ageing. Advanced age and our gender, two of the most prominent risk factors for dementia, are not modifiable. Lifestyle factors such as smoking, excessive alcohol use, and poor diet modulate susceptibility to dementia in both males and females, although the degree to which the resulting health conditions e.g., obesity, type 2 diabetes, and cardiovascular disease, impact dementia risk varies by sex.
Women as CEO’s: the prevalence of women in the data is far greater both in terms of those who are diagnosed, and also those who are unpaid care partners for someone diagnosed with dementia. Caring for others, not in the financial sense, has traditionally been a women’s role, at least in most western countries. We are most often the Chief Executive Officers of our families, and in spite of the feminist movement, women are more often the people actively doing the childcare, volunteering at school, supporting older parents, and often the ones who are cooking and managing a home for our families. Caring is what many women innately do, and they do it well. In my experience, I see that men do it well too, but it is more often the women in the family, juggling home duties, and now full time paid work as well.
But the impact of dementia on women may well be having an impact on impact on the recent gains in gender diversity in the workforce, and this is something that needs further investigation. Although women are still not treated equally to men in the same roles in the workplace, being forced to retire from work, either due to being diagnosed with dementia, or supporting someone with dementia, will impact this progress.
Dementia from the inside out
I am a woman with a diagnosis of younger onset dementia, and although not in the senior bracket I do know the various effects on women, as I’ve also been a family care partner to three people who have died from dementia. This has impacted my many roles, my self-identity, especially my role as a mother and a wife, in the way I would like to be, and my self esteem and overall emotional wellbeing. Dementia also ensured I lost my job, due to the loss of a driving license, which at the time, no one advised me of my rights as a person with disabilities caused by the symptoms of my particular dementia, to remain employed.
As a woman, the thought of not being able to fulfill what I believed was my role as a wife and mother, and especially my ‘duty’ as a mother, was devastating. The thought I would not remember them one day was and still is devastating. Whilst I can at least for now, rationalize that it is not my fault, I feel like I am failing my children, and failing my husband. They have never said this although I can occasionally see the stresses due to the changes are taking on them.
And for women (or men) with dementia living alone without a partner, they may become even more isolated after dementia, missing out on the emotional and physical support of a live in partner or Back Up Brain BUB. Whilst there will be many challenges ahead for us both, I feel very lucky to have a husband and two amazing sons to support me, but the emotional impact on them, mostly not talked about, is significant.
The impact of not being able to ‘care’ for my husband and children, or older parents, in the same way I have before dementia, is significant. And the feelings of being a ‘burden’, and of guilt are never far from my reality. Not to be able to ‘provide/ that same support, and then, to become the one needing support at such a young age, was and still is very difficult for someone who has been fiercely independent, and as well, who has always wanted to, and been the mother and wife ‘caring’ for them.
Loss of identity, loss of self, loss of feeling like I am no longer a ‘good’ wife or mother… these thoughts appear often, and never quite to go away.
Whilst younger women diagnosed with dementia, or with a parent with dementia have a few unique issues such as having to care for young children, elderly parents and being employed, we still have many of the same roles as most woman, and experience the same grief and losses of dementia, or if a care partner, the perceived losses of the relationships we had with our family member with dementia.
The human cost of being diagnosed with dementia is high not only to the person diagnosed, but our families. The physical and emotional challenges faced as a care partner are well known, but, I worry we are not doing enough to teach and empower women to make lifestyle changes aligned to the risk reduction evidence to reduce the risk of getting dementia, especially as the data clearly tells us we are at a higher risk.
The structure of families has changed over the years, with single sex parenting, gay couples raising children, mixed cultures living together, and the traditional ‘role’ of the women in western countries has most certainly changed significantly. Many men are househusbands, heterosexual, gay or other, and many of us are very comfortable with this emerging change in family structures and equality.
Many more women are living alone, and many of us would also normally be providing care for others. Dementia means this is no longer possible, and the psychological impact of our nurturing and other roles being taken away by the progression of the disease has a negative and disabling effect. The stigma, the discrimination and the characteristic isolation that a diagnosis of dementia brings with it ensure hopelessness.
The Prescribed Disengagement® (Swaffer, 2014) still given to most people following diagnosis potentially also creates a learned helplessness and exacerbates the hopelessness; it is unhelpful, unethical and promotes dependence. The emotional devastation of such a diagnosis can be crippling and so disempowering, it is easy to give up and not to fight for our lives. With a rehabilitative and disability-enabling approach to our care, our sense of well-being and quality of life potentially is increased significantly, along with our independence, despite the fact these approaches are not a cure. Living better with dementia, with improved support for the assets we still have, rather than the focus remaining on our deficits, is imperative.
Perhaps the biggest challenge in tackling the issue from a gender perspective is the stigma, discrimination, and the many myths and misperceptions about dementia. For example, those if us choosing to live well with dementia more publicly, with disability support for disabilities that to most, are invisible, are too often being accused of not having dementia, or lying about it, and this has become systemic, and could even be seen as a for of bullying. We need more education, of not only doctors, nurses and paid carers, but of our community and families.
Judy from Australia who has been living alone and beyond a diagnosis of dementia in her own home, for over ten years, and recently said of her experience of being accused of not having dementia;
“ A “close friend” challenged me recently when I explained that I just could not travel overseas, with the words “Anyway, you don’t have Alzheimer’s”, and each time when I tried to respond, kept hammering at me, repeating, “You do not. You do not!” Then with a voice of ultimate authority “Anyway, others agree with me!” implying that friends we have in common see me to be a fake, a pretender, a liar, whatever.
I felt terribly assaulted, as though I’d been stabbed, again and again – and by one of my closest friends?
I was in shock, asking myself -“Why would anyone ever do this to themselves. A life sentence! Losing so much of one’s quality of life – one’s mind? All the books you can no longer read, and so much more, and still trying to be “normal”. It was, and still is, just devastating to feel betrayed, by someone so close to you.”
This habit, based on myths and preconceptions that everyone with dementia must look and act as though they already in the late stage of the disease, needs to stop. It could also be seen as a disability hate crime. There are many people who have been medically diagnosed with dementia now in the public eye, as speakers, authors and advocates, who may not look like they have dementia. In reality, not all the doctors around the world can be wrong. To assume otherwise is offensive, not only to the person diagnosed, to their families and to their medical doctors. It is harmful, hurtful and wrong for anyone without dementia to accuse someone living with this chronic progressive terminal illness, that, when diagnosed early enough, may have mostly invisible disabilities.
The impact of dementia on women is high
It is very clear from the data, my personal experience, and that of DAI members and others, that;
Women are at a greater risk of developing dementia
Women are more often in unpaid care partner roles than men
Women are usually the CEO’s of the household in a heterosexual relationship, or are living alone
Women are more likely to give up work to support a family member
Women are often isolated in their role as care partners
Women diagnosed with dementia are deeply impacted and isolated
As a result, women are more often negatively affected financially, emotionally and physically than men, simply due to the percentages of women affected by dementia
This is not meant to dilute the human cost felt by men, either diagnosed with dementia or supporting someone with dementia
Dementia Alliance International
Through self-advocacy and then global advocacy across my roles in Dementia Alliance International, I have retained a sense of truly meaningful purpose, and the focus has been on my abilities and disability support, rather than on my cognitive deficits. It is also clear I could have remained in paid employment for much longer with reasonable adjustments.
DAI’s members are predominantly women, many with younger onset dementia, and the impact of dementia is significant. However, as we empower each other to take back control of our lives, and to be bolder by striving to live well with dementia, the impact of the human cost of dementia is slowly changing. We need more self advocates and local, national or global advocates, both men and women, as this re empowers us to live well with dementia, rather than to simply go home and prepare to die from it.
DAI: What we aim to do is empower everyone with dementia to reclaim their pre diagnosis lives, and to strive to reduce the negative impacts of dementia through self-advocacy and online support, with support groups, webinars and cafes.
To reduce the human cost and the economic cost of dementia, it is clear we need to manage the symptoms of dementia as disabilities, and affording people with dementia the very same rights as everyone else under the Conventions of the Rights of Persons with Disabilities.
A global perspective
From a global perspective, I feel civil society needs to support action on dementia from a gender perspective, by ensuring more longitudinal research is done on it, and that all national dementia plans include gender as part of their remit. Of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.
A Lancet Neurology paper reported that adoption of the following known to be associated with dementia may well “halve the cases of dementia and are some things we can all do and there are many studies and organisations such as the Alzheimer’s Society UK, Alzheimer’s Australia and others also support and promote these as risk reduction factors;
Healthy diet, including reducing alcohol or other social drugs
Keeping a good check on your blood pressure, cholesterol and blood sugar
Keep your brain active
The World Dementia Council has also made risk reduction, and research for improving care for those diagnosed and those supporting us priorities in their work, alongside research for a cure and disease modifying drugs and open data. They also have a included a focus on topics such as women and dementia, and stigma. Professor Dale Bredesen’s novel research indicates these factors may also be significant in reducing the progression, or even reversing cognitive decline, in patients with MBI, MCI or early dementia.
The Global Alzheimer’s and Dementia Action Alliance, of whom I also represent today in my role as Chair and CEO of Dementia Alliance International, one of four organisations on their Steering Committee, I can report that GADAA concludes the following recommendations.
Recommendations made by GADAA, included in the full report to be released next week.
Recommendations to Civil Society Organisations must include
International civil society involved in women’s health and equality work should incorporate the disproportionate impact that dementia and associated caring role has on women into policy and programming.
A broad-spectrum of iNGOs should support efforts to raise awareness of dementia as a global health priority and tackle stigma associated with the condition which can especially affect women.
Gender-focused iNGOs should engage with civil society groups working on dementia to ensure that dementia’s disproportionate effect on women is recognised and responded to throughout their policy and programming.
Dementia-focused civil society must ensure gender-perspectives are researched, discussed and acted on at every level of their influencing.
Slide 15 Recommendations to International, Regional and National Policy-makers:
A gender-perspective should be included in all dementia policies and plans, with sufficient resource allocation to ensure their implementation.
Women, including those living with dementia, should be fairly represented at all stages of developing health and social care policies related to dementia.
Women, whether living with dementia or as unpaid care partners, should have access to post-diagnostic support and benefit from social security programmes, especially in rural areas
Special attention needs to be given to supporting women with dementia that live alone. The WHO secretariat should monitor the impact on women of the Global Plan of Action on the Public Health Response to Dementia’s implementation.
Countries, regional bodies and international bodies should collaborate to share best practice and develop comprehensive gender-responses to dementia.
Let’s for one final moment, be reminded of the conclusion reached by the Organisation for Economic Cooperation and Development (2015) after an exhaustive data-based study of the world’s 38 richest countries is that;
‘Dementia receives the worst care in the developed world’.
This is truly extraordinary, and shocking, considering this was 67 years after the Universal Declaration of Human Rights (United Nations, 1948) was adopted. This Convention was meant to protect every citizen in the world, including people with dementia who live with disabilities due to their diagnosis of dementia. It is clear though, that people with dementia are still missing optimal support and care, even in the developed countries. As women are more affected than men by dementia, it is also an issue we must tackle as women, collectively, to ensure change.
Detection of dementia is essential for improving the lives of patients but the extent of under detection worldwide and its causes are not known (Lang 2017).
30 years ago, people were diagnosed with dementia late in the disease process, however the health sector is diagnosing people much earlier in the disease, yet still prescribing the same late stage post diagnostic pathway.
This promotes dependence on families, and then the health system.
Therefore, I personally believe the most impactful thing as a society we can do, is to work towards a more timely diagnosis, and then to stop ‘late stage dementia management’ which encourages dependence on families and the health system, and move towards a post diagnostic experience, that encourages independence through rehabilitation and disability support, and which is something we all have a basic human right to. We must also phase out institutional care that historically we know ensures worse care, as well as the segregation and chemical restraint that is taking place via secure dementia units and anti psychotics, towards a more humane, rights based approach to dementia. This is about our most basic human rights.
As a woman with dementia, a past care partner to people with dementia, a mother, a daughter and a wife, I implore you to think outside the box to create change so that we are all supported to live a higher quality of life and well being than is currently being experienced by most people impacted by dementia.
Szoeke C, Robertson J, Desmond P, et al. (December 2013) The Women’s Healthy Ageing Project: Fertile ground for investigation of healthy participants ‘at risk’ for dementia, International Review Of Psychiatry, 25(6), 726-737.
Dementia Alliance International is today launching the first edition of our conference guidelines based on feedback from people with dementia and family care partners since 2012.
Of course, it was not possible to receive feedback from the more than 47 million people currently diagnosed with dementia, but we did engage with hundreds of people from more than 12 countries.
Your feedback is important, and if you have ways in which the next edition of this document could be improved, we would appreciate hearing from you.
“Because members of Dementia Alliance International (DAI) have a unique perspective on conferences we decided to assemble responses from post-event informal email surveys of the past four years to see how people with demen a and care partners feel about the access, support, and enablement provided at professional mee ngs of Alzheimer’s Disease Interna onal (ADI) and other conferences or events.
In other words, we asked if such events are dementia friendly, accessible, and accommoda ng for people of all ages and disabilities.”
This month, Dr Rahman has written a really interesting research blog on identity, and we are extremely grateful to him for his expertise, his continued willingness to make time to do this for us at no charge.
This support of Dementia Alliance International and all people with dementia in general is greatly appreciated. Thank you Shibley.
What happens to identity when somebody is diagnosed or ‘undiagnosed’ with dementia?
A curious problem has arisen in English dementia service provision.
As a result of the perfect storm of the pressure on primary care to diagnose dementia, and the lack of sufficient resources to primary care, as well as the burgeoning pressures on the memory clinic service, there has been a significant number of people being ‘undiagnosed’ with dementia too.
But having any diagnosis of dementia forces you to make sense of your life as it is, against the background of how it was.
Recent research in dementia has thrown much light on self and identity, and, whilst interesting in itself, provides further clues about how best person-centred integrated care pathways might be best designed in future.
This article in my ‘research roundup’ series looks at recent advances in the research on self and identity in dementia, a hugely important area of research.
Inaccurate diagnoses of dementia in recent English dementia policy
Last year (20150, it was reported that researchers at the University of Sheffield had found that the number of ‘inaccurate’ referrals by GPs to memory clinics – centres to diagnose dementia – has doubled since the Government’s financial incentivising scheme had been introduced.
A study of 150 patients found that just over half – 52 per cent – who had been sent to memory clinics for scans since October were later found not to have dementia. This compared to rates of between 25 and 30 per cent before the scheme was introduced. Many had temporary memory problems brought on by depression or old age rather than dementia. Inevitably, every misdiagnosis of dementia has a back story too, although the opposite, of people languishing without a diagnosis, is frightful too.
On 26 February 2016, this policy issue had gathered momentum: in an article “Revealed: the dementia diagnosis drive that went too far” in Pulse magazine, Caroline Price (2016) wrote:
“Figures obtained from 11 NHS trusts showed 152% increase in the number of patients wrongly labelled as potentially having dementia under the diagnosis drive, causing them unnecessary anxiety and affecting the GP-patient relationship.
These data, obtained under a Freedom of Information request, reveal there were 10,019 GP referrals across 11 trusts in 2011/12, when the Prime Minister launched his ‘challenge’ on dementia, and that this more than doubled to 22,109 in 2014/15.”
The impact of a diagnosis of dementia: the notion of ‘patienthood’
Being given a diagnosis of dementia has a huge impact on your sense of personal identity.
The diagnosis is bound to invest a lot of emotional energy – particularly if you then go onto advocate in a public arena on behalf of people living with dementia as someone living with dementia yourself.
But if your diagnosis changes – this could well be not because a physician ‘has made a mistake’, but because more information has come to light – e.g. a change in thinking, or a change in the appearance of a brain scan.
The disclosure of the diagnosis heralds, arguably, the beginning of an additional identity of ‘patienthood’, which undoubtedly requires particular sensitivity. Sabat and colleagues are particularly helpful here.
“Another ‘fixed’ category would be the ‘patienthood’ of the person that is then combined with a particular diagnosis. Thus, a person’s diagnosis and status as a patient become the key features of identification in a narrative about the person, and the diagnostic label becomes an adjective that then describes the person and thereby restricts his or her social identity. As a result of such a limited identity that is, itself, based on a pathological attribute or set of pathological attributes, the person so labelled can easily become marginalized and essentially imprisoned in a web of negative stereotypes.” (Sabat et al., 2011)
The diagnosis itself can lead to a change of perceived identity with others around you, as Sabat, Napolitano and Fath (2004) note.
“When healthy persons refrain from engaging in malignant positioning of the person with AD in the early stages of the disease, the degree to which the person with AD experiences a loss of control, humiliation, embarrassment, and other losses can be ameliorated. As a result, the person’s remaining intact cognitive abilities may be sustained for a longer period of time than might otherwise be the case.”
It is often emphasised how empowering a diagnosis of dementia could be, in that it provides an account of symptoms, and allows you and your closest to plan for the future.
But a complete account, in honesty, needs to embrace how the identity of patienthood can be potentially disempowering too. In a recent study, some participants struggled with their newly acquired label of behavioural variant of frontotemporal dementia, whilst for others “the threat came from their reduced abilities or from lifestyle restrictions imposed upon them due to their illness” (Griffin, Oyebode and Allen, 2015).
The general importance of self and identity
The notion of what makes up “the self” is therefore relevant. From a research perspective, the self is very difficult to define, and researchers have based their studies on a wide variety of models and concepts (Caddell and Clare, 2010). However, empirical evidence regarding the impact of dementia on the self remains limited. (Clare et al., 2013)
Personal identity is defined as the state and feeling of being the same as a person described or claimed, and having unique identifying characteristics that remain stable over time.
Recently, there has been much debate in the literature regarding the extent to which identity remains intact in people with dementia (Caddell and Clare, 2011) – although this seems at odds, potentially, with rapidly disappearing fragments in “the orange” as depicted in the recent Alzheimer’s Research UK campaign for raising dementia awareness entitled “Share the orange”.
This chimes with the prevailing image of dementia as a loss of self and a change of identity leads to the situation that persons with dementia represent difference and otherness. Policies for an ageing society with a large number of persons living with dementia are influenced by this ‘shock doctrine’ of the fear of losing one’s identity and self (Naue and Kroll, 2008): though this may be altogether rather unfair.
Martin Conway (2005) in a challenging, and hugely interesting, article a decade ago threw back to the classical work of William James, emphasising that memory is an important feature of yourself. It would appear intuitively correct that your idea about yourself is based on your recollections of memories about yourself. But this can go wrong – and it is not impossible that this will go wrong in dementia.
Conway describes previous work on ‘coherence’, how the fact pattern about events say in the past are refashioned to emphasise information relevant to your current life. This link with your autobiographical past remains one of the most enduring enigmas of dementia ‘self’ research. Latterly, however, a distinction has been drawn between the continuous, coherent sense of identity that characterises normal human experience, the ‘ontological self’, and the types of self-knowledge that underpin and support it (reviewed in Clare et al., 2013).
But Conway also cites other work where this coherence can strikingly break down; for example a patient living with chronic schizophrenia who convinces himself he is a ‘grandmaster’ of chess despite a complete inability to play chess.
How you perceive changes in self and identity in diagnosis might relate to underlying cognitive processes, according to most recent research.
For example, from a cognitive point of view, patients in the early stages of semantic dementia with a complicated picture of loss of semantic knowledge, knowledge for types of things. This generally involves knowledge of objects, concepts, famous people, and public events, and engenders some particular language deficit.
According to Duval and colleagues (2011), a novel finding of theirs was that persons with semantic dementias had problems in recalling semantic personal events (though not episodic ones to do with events) related to their past selves, and also they seemed to have considerable difficulty imagining what they might become in the future.
This has implications for how people with dementias deal with their concepts of the future, and this field of ‘prospection’ is very interesting indeed.
Looking for the ‘ME’ in dementia
Or an “ecological self” represents awareness of the self as perceived with respect to the physical environment, through the processing of visual, auditory, and somatosensory stimuli. The continuous flow of visual information means that the entity is constantly aware of its position, posture and movement with respect to the environment (Caddell and Clare, 2013).
But such a theory clearly is ill equipped to predict distortions of self and identity which could be hypothesised to take place in the context of people living with higher order visual processing disturbances, say in posterior cortical atrophy?
The trick will be – as it is for most other areas of dementia research and service provision – not to consider dementia as one homogenous mass, and fall back on the individuality of all people living with dementia. This is looking for the ‘ME’ in ‘dementia’.
Caddell LS, Clare L. (2010) The impact of dementia on self and identity: a systematic review. Clin Psychol Rev. 2010 Feb;30(1):113-26.
Caddell LS, Clare L. (2013) Studying the self in people with dementia: how might we proceed? Dementia (London). Mar;12(2):192-209.
Caddell, LS, Clare, L. (2011) I’m still the same person: The impact of early-stage dementia on identity, Dementia, 10(3) 379–398.
Clare L, Whitaker CJ, Nelis SM, Martyr A, Markova IS, Roth I, Woods RT, Morris RG. (2013) Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life. Int J Geriatr Psychiatry. 2013 May;28(5):494-503.
Conway, M.A. (2005) Memory and the self. Journal of Memory and Language 53, 594–628.
Duval C, Desgranges B, de La Sayette V, Belliard S, Eustache F, Piolino P. (2012) What happens to personal identity when semantic knowledge degrades? A study of the self and autobiographical memory in semantic dementia. Neuropsychologia, Jan;50(2):254 65.
Griffin J, Oyebode JR, Allen J. (2015) Living with a diagnosis of behavioural-variant frontotemporal dementia: The person’s experience. Dementia (London). Feb 2.
Hulko, W. (2009) From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia. Journal of Aging Studies 23, 131–144.
Naue U, Kroll T. (2009) ‘The demented other’: identity and difference in dementia. Nurs Philos. Jan;10(1):26-33.
Sabat SR, Johnson A, Swarbrick C, Keady J. (2011) The ‘demented other’ or simply ‘a person’? Extending the philosophical discourse of Naue and Kroll through the situated self. Nurs Philos. Oct;12(4):282-92; discussion 293-6.
Sabat SR, Napolitano L, Fath H. (2004) Barriers to the construction of a valued social identity: a case study of Alzheimer’s disease. Am J Alzheimers Dis Other Demen. May Jun;19(3):177-85.
You can read his speech notes below, and view the recording of the session on our YouTube channel, also embedded here;
Presentation by Mr Glenn Rees, AM, Chair of Alzheimer’s Disease International:
WORLD ALZHEIMER’S MONTH 2015 #WAM2015
DEMENTIA ALLIANCE INTERNATIONAL WEBINAR 16/17 SEPTEMBER 2015
DEMENTIA: GLOBAL PERSPECTIVES AND PRIORITIES
THANK YOU FOR THE OPPORTUNITY TO TALK WITH YOU IN WORLD ALZHEIMER’S MONTH. SLIDE 2 A LOT IS HAPPENING DURING THE MONTH AND I WOULD BE INTERESTED IN YOUR VIEWS ON THE THEME AND THE ACTIVITIES.
IT GAVE ME GREAT PLEASURE DURING THE LAST HALF OF 2015 TO ADVOCATE FOR ADI TO ENTER A PARTNERSHIP WITH DAI RATHER THAN ESTABLISH AN ADI GROUP.
I HAVE BEEN AROUND LONG ENOUGH TO KNOW THAT, HOWEVER WELL-INTENTIONED, GROUPS THAT ARE SET UP WITHIN ORGANISATIONS ARE SUBJECT TO CONTROL WHICH OVER TIME LEAD TO FRUSTRATION AND TENSION
EQUALLY IT IS IMPORTANT NOT ONLY THAT DAI HAS POSITIONS OF ITS OWN BUT THAT ADI TOO HAS THE CAPACITY TO PURSUE ISSUES IN THE WAY IT THINK BEST, FOR EXAMPLE IN RESPECT OF THE BUSINESS MODEL FOR CONFERENCES OR THE MOST EFFECTIVE WAY TO PROSECUTE GLOBAL ADVOCACY.
SO PARTNERSHIP BASED ON MUTUAL RESPECT IS THE BEST WAY FORWARD AND SLOWLY I THINK WE ARE DEVELOPING A PLATFORM FROM WHICH PEOPLE WITH DEMENTIA WILL BENEFIT
A START HAS BEEN MADE. DAI HAS DETERMINED PROJECTS WHICH ARE A PRIORITY FOR SUPPORT BY ADI AND ESTABLISHED A BASIS TO DEVELOP CONFERENCES RUN BY PEOPLE WITH DEMENTIA THEMSELVES, STARTING WITH THE REGIONAL CONFERENCE IN NEW ZEALAND NEXT YEAR
I DETECT NOTHING BUT SUPPORT WITHIN THE BOARD AND THE ADI OFFICE FOR THE PARTNERSHIP AND CLEARLY THERE ARE ALZHEIMER ORGANISATIONS LIKE ALZHEIMER’S SCOTLAND AND NEW ZEALAND WHO HAVE A DEEP COMMITMENT TO THE PRACTICAL IMPLEMENTATION OF HUMAN RIGHTS FOR PEOPLE WITH DEMENTIA.
I WANTED TO START WHAT I SAY TO YOU IN THAT WAY BECAUSE IT IS IMPORTANT THAT YOU UNDERSTAND ADI WELCOMES THE POTENTIAL OF DAI TO GROW AS A FORCE IN ADVOCATING FOR THE RIGHTS OF PEOPLE WITH DEMENTIA. I DOUBT I CAN UNDERSTAND THE MANY FRUSTRATIONS MANY IF NOT ALL YOU FACE IN YOUR DAY TO DAY LIFE BUT IT IMPORTANT YOU UNDERSTAND THAT ADI REGARDS DAI AS AN EQUAL PARTNER.
SLIDE 3 WHAT I WILL TALK ABOUT TODAY IS:
THE 2015 WORLD ALZHEIMER’S REPORT THE GLOBAL IMPACT OF DEMENTIA
THE OPPORTUNITIES FOR ADVOCACY OVER THE NEXT 12 MONTHS
THE PRIORITIES THAT ADI WILL BE SEEKING TO INCLUDE IN A GLOBAL CALL FOR ACTION AT THE WHO NEXT YEAR
THE DRIVERS FOR CHANGE
SLIDE 4 I AM NOT GOING TO TEST YOU ON THE 80 PAGES OF THE 2016 REPORT BUT I DO HOPE YOU HAVE HAD AN OPPORTUNITY TO LOOK AT IT. IT IS A WELL RESEARCHED DOCUMENT THAT PROVIDES AN EXCELLENT BASIS FOR POLITICAL ADVOCACY AT THE GLOBAL LEVEL. IT IS PROBABLY AS WEARYING FOR YOU AS IT IS FOR ME TO PLAY THE NUMBERS GAME BUT IT IS THE IMPACT OF DEMENTIA ON HEALTH AND CARE SYSTEMS THAT WE HAVE TO GET ACROSS AS WELL AS THE HUMAN COST.
THE KEY FINDINGS ARE THAT THERE HAS BEEN A 12-13 % INCREASE IN THE GLOBAL ESTIMATES OF PEOPLE WITH LIVING WITH DEMENTIA SINCE THE 2009 REPORT WITH MUCH OF THE INCREASE TAKING PLACE IN LOW AND MIDDLE INCOME COUNTRIES. THE NUMBERS ARE EXTRAORDINARY
SLIDE 58 MILLION PEOPLE WORLD WIDE ARE LIVING WITH DEMENTIA IN 2015. THIS NUMBER WILL GROW TO 131.5 MILLION BY 2050
SLIDE 6 THERE WILL 9.9 MILLION NEW CASES OF DEMENTIA IN 2015
SLIDE 7 THE TOTAL ESTIMATED COST OF DEMENTIA IS US $813 BILLION, A FIGURE PROJECTED TO INCREASE BY 2018 TO US $! TRILLION – THAT IS A NUMBER WITH TWELVE ZEROS – A BIT OUTSIDE MY COMPREHENSION!
SLIDE 8 THERE IS A GREAT DEAL OF ANALYSIS IN THE REPORT BUT TWO ISSUES ARE WORTH A SPECIAL MENTION
FIRST, THE AUTHORS ASSUME IN THE PROJECTED FIGURES THAT THE PREVALENCE OF DEMENTIA WILL NOT VARY OVER TIME AND THAT IT IS THE AGEING OF THE POPULATION THAT ALONE DRIVES THE PROJECTED INCREASES. IN REALITY OF COURSE THE PREVALENCE COULD BE AFFECTED BOTH BY A CHANGING NUMBER OF NEW CASES AND LENGTH OF LIFE.
FOR EXAMPLE THE TREND IN HIGH INCOME COUNTRIES TO LESS SMOKING, LOWER CHOLESTEROL, LOWER BLOOD PRESSURE AND PHYSICAL EXERCISE MIGHT REDUCE RATES. ON THE OTHER HAND THE PREVALENCE OF DIABETES AND OBESITY IS INCREASING.
IN LOW AND MIDDLE INCOME COUNTRIES THE RATES MAY MOVE ADVERSELY AS TRENDS IN CARDIOVASCULAR DISEASE MOVE IN AN ADVERSE DIRECTION.
THE RESEARCHERS CONCLUDE AT THIS STAGE THAT THE RESEARCH BASE IS NOT SUFFICIENT TO MAKE CHANGES IN RISK FACTOR PROFILES
SECOND, THE AUTHORS NOTE WITH CONCERN THAT THE REVISED GLOBAL BURDEN OF DISEASE ESTIMATES FAIL TO CAPTURE THE FULL IMPACT OF CHRONIC DISEASES AND ESPECIALLY DEMENTIA ON DISABILITY, NEEDS FOR CARE AND ATTENDANT SOCIETAL COSTS. THIS FAILURE IS IMPORTANT BECAUSE IT MAKES GLOBAL ESTIMATES AN UNRELIABLE BASIS FOR PRIORITISING RESEARCH, PREVENTION AND HEALTH OR SOCIAL CARE AMONG OLDER PEOPLE.
I HOPE THE RPEORT IS HELPFUL IN YOUR ADVOCACY. WHILE SOME OF YOU MAY FEEL THE FIGURES CAN TRIVIALISE THE ISSUES I KNOW FIRST-HAND WHAT THE POLITICAL REACTION WAS IN AUSTRALIA TO THE US $1 TRILLION FIGURE. SOUND BITES ARE IMPORTANT.
SO WHAT ARE THE OPPORTUNITIES FOR ADVOCACY?
WE CAN I THINK BE WELL PLEASED WITH THE INCREASED GLOBAL RECOGNITION OF DEMENTIA AS A HEALTH PRIORITY WHILE BEING REALISTIC ABOUT THE TIME IT WILL TAKE TO RESULT IN IMPROVEMENTS IN QUALITY OF LIFE FOR THOSE WITH DEMENTIA AND THEIR FAMILY CARERS.
AFTER ALL IT HAS TAKEN MANY YEARS FOR SOME HIGH INCOME COUNTRIES TO MAKE DEMENTIA A FOCUS FOR NATIONAL PLANNING OR ACTION.
I REMAIN OF THE VIEW THAT AT THE GLOBAL AND LOCAL LEVEL THE NEED IS FOR REVOLUTION AND NOT EVOLUTION IF WE ARE TO TACKLE STIGMA AND THE ENDURING VIEW THAT DEMENTIA IS AN INEVITABLE PART OF AGEING RATHER THAN A CHRONIC DISEASE.
SLIDE 9 SO WHAT ARE THE POSITIVES AT THE GLOBAL LEVEL?
FIRST, THE ESTABLISHMENT OF AN EVIDENCE BASE. THE WORK OF MARTIN PRINCE AND THE 10/66 RESEARCH GROUP TOGETHER WITH ADI IN PUBLISHING WORLD ALZHEIMER’S REPORTS HAVE ENSURED A BASIS FOR SHARING GLOBALLY KEY INFORMATION.
THE INFORMATION BASE IS MATCHED IN IMPORTANCE BY A CHANGE IN LANGUAGE THAT EMBRACES DEMENTIA AS A PUBLIC HEALTH ISSUE, DEMENTIA AS A CHRONIC DISEASE, THE LANGUAGE OF PREVENTION AND REHABILITION AND THE RECOGNITION THAT DEMENTIA IS AS MUCH A SOCIAL AS MEDICAL ISSUE.
THE FIRST VICTORY IN ANY REVOLUTION IS TO HAVE OTHERS USE YOUR INFORMATION AND LANGUAGE. WE ARE NOT THERE YET BUT A GOOD START IS BEING MADE.
SLIDE 10 SECOND, THE MULTIPLICITY OF CHANNELS THROUGH WHICH TO PROSECUTE THE ISSUE OF DEMENTIA. TO MAKE THE POINT LET ME LIST THEM QUICKLY IN WHAT I PERCEIVE TO BE SOME ORDER OF IMPORTANCE
THE WORLD HEALTH ORGANISATION AND THE RECENT MINISTERIAL DEMENTIA MEETING WHICH RESULTED IN A DECLARATION
THE WORLD DEMENTIA COUNCIL ESTABLISHED AS A PLATFORM FOR GOVERNMENTS, INDUSTRY, NGOS AND PEOPLE WITH DEMENTIA TO SET THE AGENDA FOR TACKLING DEMENTIA
THE PAN AMERICAN PACIFIC HEALTH ORGANISATION AND ITS WORK ON AN ACTION PLAN TO SUPPORT LOWER AND MIDDLE INCOME COUNTRIES IN THE REGION OF THE AMERICAS
THE 2014 GLASGOW DECLARATION AND THE ADVOCACY OF ALZHEIMER’S EUROPE ON A EUROPEAN DEMENTIA STRATEGY
THE WORK BEING DONE BY THE ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT ON AGED CARE INCLUDING THE QUALITY OF CARE
THE WORK OF THE NON COMMUNICABLE DISEASE ALLIANCE IN ESTABLISHING A BASIS FOR COOPERATION ON PREVENTION ACROSS THE MAJOR CHRONIC DISEASES
THE GLOBAL ALZHEIMER’S AND DEMENTIA ACTION ALLIANCE FORMED IN RESPONSE TO THE G7 INITIATIVE BY INTERNATIONAL NGOS TO ENHANCE GLOBAL EFFORTS TO COMBAT STIGMA, EXCLUSION AND FEAR
MECHANISMS TO IMROVE ALL ASPECTS OF DRUG DEVELOPMENT
INCLUSION OF DEMENTIA WITHIN THE CONVENTION ON THE RIGHTS OF PEOPLE WITH DISABILITIES (CPRD)
THE CRPD CONVENTION IS A WIDE-RANGING AND COMPLEX DOCUMENT BUT SOME OF THE PROVISIONS THAT RELATE TO DEMENTIA ARE
ARTICLE 2 ON EQUAL RECOGNITION BEFORE THE LAW E.G. SUPPORTED DECISION MAKING THAT RESPECTS THE PERSON’S CAPACITY)
ARTICLE 19 (ON LIVING INDEPENDENTLY AND BEING INCLUDED IN THE COMMUNITY AND,
ARTICLES 24, 27, 28 AND 30 WHICH INCLUDE COMPREHENSIVE ACCESS TO SERVICES INCLUDING EDUCATION, WORK, PARTICIPATION IN RECREATIONAL AND SPORTING ACTIVITIES
THE BOARD OF ADI HAS ASKED THE CEO TO APPROACH ALZHEIMER’S SCOTLAND WITH A VIEW TO WORKING TOGETHER ON DEMENTIA AND HUMAN RIGHTS.
THE CHALLENGE WHICH I WILL COMEBACK TO LATER IS HOW TO SUSTAIN THIS INTEREST, AVOID DUPLICATION OF EFFORT AND ACHIEVE COORDINATION.
SLIDE 11 THIRD, THE INCREASING RECOGNITION OF DEMENTIA AS A PUBLIC HEALTH ISSUE AND WITH THAT THE POTENTIAL OF PREVENTION.
TWO OF THE MOST IMPORTANT CHANGES IN MESSAGING IN THE TIME I WAS CEO OF ALZHEIMER’S AUSTRALIA WERE THAT DEMENTIA IS NOT A NATURAL PART OF AGEING AND THAT IT MAYBE PREVENTABLE.
THIS OFFERS SOME HOPE OF ACTION WHILE THE LONG WAIT CONTINUES FOR MEDICAL TREATMENTS.
THE OTHER MESSAGE IS THAT DEMENTIA IS AS MUCH A SOCIAL AS A MEDICAL ISSUE – HENCE THE IMPORTANCE OF S11 OCIAL ACTION TO COMBAT STIGMA.
FOURTH, THE PRIORITY GIVEN AT THE GLOBAL LEVEL TO THE IMPORTANCE OF RESEARCH FUNDING IN ORDER TO IDENTIFY THOSE AT RISK OF DEMENTIA, TO FIND NEW TREATMENTS AND TO TRANSLATE RESEARCH INTO PRACTICE.
THE RESULT IS INCREASED RESEARCH FUNDING IN RECENT TIMES. HOWEVER, IT IS WELL BELOW WHAT IS REQUIRED IF IT IS TO BE TAKEN AS SERIOUSLY AS IS FOR EXAMPLE CANCER AND CARDIO VASCULAR MEDICAL RESEARCH.
BUT WHATEVER OUR DOUBTS THE COMMITMENT MADE BY THE THEN G8 TO FIND A CURE FOR DEMENTIA BY 2025 IT IS A USEFUL POLITICAL HOOK.
SO HAVING GOT TO THE POINT OF CAUTIOUS OPTIMISM ABOUT PROGRESS AT THE GLOBAL LEVEL OVER THE LAST 18 MONTHS IN GETTING DEMENTIA ON THE POLITICAL AGENDA I SUGGEST TWO KEY QUESTIONS REMAIN.
SO HOW DO WE FOCUS THE GLOBAL AGENDA?
SLIDE 12 I ASKED YOU ALL TO LOOK AT THE CALL TO ACTION IN PARAGRAPH 7.5 OF THE 2015 REPORT BECAUSE I BELIEVE IT SETS OUT IN SHORT SPACE WHAT ADI SHOULD BE SEEKING TO ADVOCATE FOR OVER THE NEXT 12 MONTHS.
THE ELEMENTS WE HAVE INCLUDED AS ELEMENTS FOR PLANNING FOR DEMENTIA AT THE GLOBAL AND COUNTRY LEVEL HAVE THE OBJECTIVE OF SUPPORTING THE PERSON WITH DEMENTIA TO STAY IN THE COMMUNITY FOR AS LONG AS POSSIBLE INCLUDE
AWARENESS RAISING OF DEMENTIA
CREATION OF DEMENTIA FRIENDLY COMMUNITIES THAT REDUCE STIGMA ASSOCIATED WITH THE DISEASE
PROMOTION OF RISK REDUCTION MEASURES
MEASURES TO IMPROVE DIAGNOSIS AND REDUCE THE AVERAGE LENGTH OF DIAGNOSIS
SUPPORT FOR FAMILY CARERS INCLUDING THROUGH INFORMATION, SOCIAL SUPPORT , RESPITE AND COUNSELLING
ACCESS TO LONG TERM COMMUNITY AND RESIDENTIAL DEMENTIA CARE SERVICES AND TO ENHANCED CARE FOR PEOPLE DEMENTIA IN HOSPITALS
SLIDE 13 A COMMITMENT TO PERSON CENTRED CARE AND TO CARE THAT MINIMISES THE USE OF MEDICAL AND PHYSICAL RESTRAINT
WORKFORCE STRATEGIES INCLUDING TRAINING
THE USE OF TECHNOLOGY TO ASSIST THE PERSON WITH DEMENTIA IN THE HOME AND TO EXTEND SERVICE REACH IN RURAL AREAS
RECOGNITION THAT DEMENTIA DESERVE GOOD QUALITY END OF LIFE CARE WITH RESPECT TO THEIR DIGNITY AND PERSONAL WISHES
THERE IS OF COURSE A RECOGNITION TOO OF THE NEED FOR INCREASED DEMENTIA RESEARCH FUNDING.
SLIDE 14 LET ME MAKE THREE OBSERVATIONS ABOUT HOW WE SHOULD APPROACH ADVOCACY
FIRST TO EMPHASISE THE NEED FOR DEMENTIA PLANS – PREFEREABLY WITH FUNDING BUT EVEN WITHOUT THEY ARE A FIRST STEP IN RECOGNITION OF THE ISSUES. ADI EXPECTS 25 COUNTRIES TO HAVE PLANS BY THE END OF THISYEAR.
SECOND TO INSIST ON SYSTEMIC CHANGE THAT TOUCHES ALL PARTS OF THE HEALTH AND CARE AND SOCIAL SUPPORT. WE ARE NOT GOING TO SUCCESSFULLY TACKLE DEMENTIA FOR EXAMPLE IN RESPECT OF TIMELY DIAGNOSIS AND DEMENTIA IN HOSPITALS IF WE DO NOT TAKE A SYSTEMS WIDE APPROACH. IT IS ONLY BY CHANGES SYSTEMS THAT PEOPLE WITH DEMENTIA WILL BE ABLE TO EXERCISE THEIR RIGHT TO CARE AND SUPPORT AS ALZHEIMER’S SCOTLAND ARE DEMONSTRATING
THIRD TO INSIST THAT THE MISTAKES OF HIGH INCOME COUNTRIES ARE NOT REPLICATED IN LOW AND MIDDLE INCOME COUNTRIES BY GIVING PRIORITY TO RESIDENTIAL CARE AT THE EXPENSE OF COMMUNITY BASED CARE AND SUPPORT THAT ENABLES THE PERSON WITH DEMENTIA TO STAY IN THE COMMUNITY FOR AS LONG AS POSSIBLE.
I WOULD WELCOME YOUR RESPONSE IN DISCUSSION THE PRIORITIES THAT HAVE BEEN ADVANCED BY ADI FOR A CALL TO ACTION
SLIDE 15 SO FINALLY WHAT ARE THE DRIVERS OF CHANGE?
FIRST, WE NEED POLITICAL LEADERSHIP OF THE KIND UK PRIME MINISTER CAMERON HAS DELIVERED THROUGH THE G7 GLOBAL DEMENTIA CHALLENGE. BUT IT HAS BEEN CIVIL SOCIETY THAT HAS HELPED SHAPE THAT INITIATIVE BEYOND RESEARCH AND STREAMLINING THE REGULATION OF MEDICINES TO INCLUDE PEOPLE WITH DEMENTIA, DEMENTIA CARE AND PREVENTION.
IF WE WANT FUNDING AND ACTION WE NEED TO BROADEN OUT THE POLITICAL COUNTRY SUPPORT FOR THE GLOBAL CHALLENGE BEYOND THE UK. THIS IS THE MISSING PIECE OF THE PUZZLE. WHAT OTHER COUNTRIES WILL STEP UP TO THE PLATE?
THE 2015 REPORT FLOATS THE POSSIBILITY OF A TRANSFER OF POLITICAL LEADERSHIP TO THE G20 GROUP OF NATIONS ASSUMING CONTINUED COMMITMENT AND ENGAGEMENT OF THE G7 GROUP OF NATIONS. THIS IS CRITICAL IN MY VIEW AS THE G20 ACCOUNT FOR ABOUT 80% OF THE WORLD’S POPUATION OF PEOPLE WITH DEMENTIA
SECOND, AMONG THE INTERNATIONAL ACTORS THE WORLD HEALTH ORGANISATION IS KEY. THE WORLD HEALTH ORGANISATION IS POSITIONED TO DO WHAT NO OTHER CAN DO IN DRAWING TOGETHER MEMBER COUNTRIES TO DISCUSS AND PRIORITISE ACTION IN PUBLIC HEALTH POLICY. THE RECENT MINISTERIAL COUNCIL IS EVIDENCE OF THAT AND MADE A GREAT START IN PRODUCING A WELL WORDED DECLARATION – BUT THAT WAS WHAT IT WAS, WELL WORDED WITH NO HINT OF ACTION.
SO ADI THROUGH OUR CEO IS WORKING WITH GOVERNMENTS FOR A RESOLUTION IN 2016 AT THE WORLD HEALTH ASSEMBLY TO LAY THE BASIS FOR A CALL TO ACTION.
WE WILL GET THIS COMMITMENT ONLY IF WE HAVE COUNTRIES TO SUPPORT DEMENTIA AS A HEALTH PRIORITY.
THIRD, ON ANY GLOBAL SCENARIO WE NEED A STRONG ADI AND STRONG ALZHEIMER’S ORGANISATIONS. IT IS THE EMOTIONAL ENERGY AND COMMITMENT OF PEOPLE WITH DEMENTIA AND THEIR FAMILY CARERS THAT HAVE CREATED AWARENESS OF DEMENTIA AND THE NEED FOR REVOLUTION OVER DECADES.
AS THE CHAIR OF ADI I CAN SAY IT IS A MIRACLE THAT ADI HAS MAINTAINED SUCH A FORCEFUL PRESENCE AT THE GLOBAL LEVEL OVER THE LAST 18 MONTHS WITH SUCH LIMITED RESOURCES. AND THESE RESOURCES ARE ALSO REQUIRED TO SUPPORT NEW AND EMERGING ALZHEIMER’S ORGANISATIONS IN LOW AND MIDDLE INCOME COUNTRIES.
THE WORK OF ADI NEEDS TO BE SUPPLEMENTED BY NEW PARTNERSHIPS THROUGH THE WORK OF THE GLOBAL ALZHEIMER’S AND DEMENTIA ALLIANCE AND ALZHEIMER’S ORGANISATIONS.
INDIVIDUAL ALZHEIMER’S ORGANISATIONS CAN PLAY A ROLE WAY BEYOND THEIR BORDERS. FOR EXAMPLE, AS ALZHEIMER’S AUSTRALIA DID BY ADVOCATING FOR DEMENTIA TO BE A PRIORITY ON THE BASIS OF ECONOMIC AND SOCIAL ANALYSIS, AS ALZHEIMER’S SCOTLAND HAS DONE IN CONSUMER ADVOCACY AND MORE RECENTLY IN MANDATING POST DIAGNOSTIC SUPPORT AND AS JAPAN AND THE UK HAVE DONE MORE RECENTLY IN IMPLEMENTING DEMENTIA FRIENDLY COMMUNITIES AND DEMENTIA FRIENDS.
THERE ARE NO PROMISES IN ADVOCACY ONLY HARD WORK AND COMMITMENT. MY DREAM IN THE NEXT 12 MONTHS IS TO ACHIEVE IN THE GLOBAL ADVOCACY OF ADI A CALL FOR ACTION IN THE WHO AND THE ATTENTION OF THE G20.
THANK YOU AGAIN FOR THE OPPORTUNITY TO SPEAK TO YOU AND I LOOK FORWARD TO SOME DISCUSSION NOW.
This weekly blog is late, due to time constraints caused by travels of the editor, and various other issues taking precedence which I will write about very soon. Please accept our (my) apologies.
However, there are a couple of interesting research reports I felt would be of interest to members this week, and a recently released ADI newsletter, the first one that DAI has a full page in as a regular feature.
Global Perspective Newsletter June 2015
Firstly, the Alzheimer’s Disease International Global Perspective Newsletter is out, with the first full page insert of news by Dementia Alliance International.
It is common to associate a diagnosis of Alzheimer’s disease with memory loss and while this is the case for many, new research has suggested that younger people (i.e. less than 65) with a diagnosis of Alzheimer’s disease will more commonly have problems associated with judgement, language and/or visual and spatial awareness, rather than memory loss.
This result was published in the Journal Alzheimer’s and Dementia and suggests a need for a greater awareness of the different symptoms associated with Alzheimer’s disease. This is something that Alzheimer’s Australia and other dementia advocacy groups around the world are committed to doing.
The study, which was undertaken in the UK and led by researchers from the University College London, analysed data from 7815 people in the US National Alzheimer Coordinating Centre database. Each participant had a diagnosis of Alzheimer’s disease, and a record had been made of the symptoms they had first noticed in the early stages of the disease. The average age of the group was 75, with the youngest person aged 36 and the oldest aged 110.
The results found that younger people with a diagnosis of Alzheimer’s disease more commonly displayed non-memory cognitive impairments (i.e. judgement, language, etc.), however the results also showed that the odds of depression and behavioural symptoms also increased with younger age. In comparison the odds of having psychosis (confused thinking) but no behavioural symptoms increased with older age.
ADI have also published an important report, Women and Dementia, with the purpose of this report is to understand the main issues affecting women in relation to dementia from an international perspective. The report examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal caregiving role for someone with dementia.
Across all regions of the world, dementia disproportionately affects women.
More women live with dementia than men. The prevalence is higher for women than for men; women are more at risk of developing dementia and the symptoms they live with are more severe.
Women provide a substantial proportion of informal care to people with dementia, with around two thirds of primary caregivers overall being women.
This figure is significantly higher in LMICs, areas which will account for 71% of the global prevalence of dementia by 2050.
The formal care workforce is predominantly female, providing the majority of health and social care in the community as well as in hospitals and care homes.
There is currently very little research focusing on the gender issues of living with, or caring for, someone with dementia and on the long-term impact of dementia on women as family and formal caregivers.
The report recommends that:
All countries need to understand the current and predicted prevalence and acknowledge that dementia disproportionately affects women. Accordingly, policy makers should review what support is currently available and what is required to meet future needs.
There is also a need for skilled care competencies for health and care staff and professionals working with people living with dementia with complex needs and co-morbidities.
In all regions people should be able to access appropriate information and support in place, enabling women across the world to continue to provide care, and to feel cared for themselves.