Mrs Phyllis Fehr, Board Member of the Dementia Alliance International (DAI) and Vice Chair of the Ontario Dementia Advisory Group (ODAG) presents in Geneva at the 17th Session of the CRPD Committee, March 20th, 2017.
On March 17 2015, Kate Swaffer, co-founder and then co-chair of Dementia Alliance International placed human rights for all people with dementia on the global stage at the World Health Organisation First Ministerial Conference on Dementia in Geneva. Just over two years later, there have been many people with dementia working tirelessly globally to further this cause, in their local or regional communities, or at the national or global level. After this event, Professor Peter Mittler became DAI’s Human Right Advisor and we and others living with dementia have been attending events and meetings in Geneva or New York many times now since that landmark day.
It is a very liberating time for all people with dementia as together we collectively pursue our human rights, and DAI is proud that Phyllis is representing us all in Geneva today. We have no doubt the Ontario Dementia Advisory Group (ODAG) are even more excited and very proud to have Phyllis Fehr there today, (Phyllis is ODAG Vice-Chair), as we collaboratively work together to ensure human rights are achieved for all, including people with dementia.
Here is the link if you wish to follow the event. Phyllis will give her 2 minute speech today, Monday, March 20th at the WHO in Geneva. http://www.unog.ch/unog/website/news_media.nsf/(httpNewsByYear_en)/427AC09275A960C4C12580E5003A283D?OpenDocument
PRESENTATION BY PHYLLIS FEHR, Board Member of Dementia Alliance International (DAI) at the 17th Session of the CRPD Committee, March 20th 2017
I am pleased to be here today on behalf of Dementia Alliance International, and also as Board Member of the Ontario Dementia Advisory Group.
Dementia Alliance International is a global organization run by and for people with dementia.
It’s an exciting time to be involved in the global movement to gain human rights for people with cognitive impairments.
Framing dementia as a disability is still very new, but it is being discussed as a policy direction and human rights issue.
When it comes to the United Nations Convention on the Rights of Persons with Disabilities, our goal is simply to ensure that people with cognitive impairments are treated like people with other disabilities.
Dementia Alliance International has been working to inform that debate and influence its direction.
We are making progress.
The World Health Authority, in its proposed Global Action Plan for a Public Health Approach to Dementia, has placed the human rights of people with dementia; empowerment and accountability as three of its seven cross-cutting principles. These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.
Not only is progress being made at the global level, but also in my home country of Canada.
For the first time in Canadian history, a group of people with dementia, The Ontario Dementia Advisory group and our national Alzheimer’s organization have joined with a coalition of disability groups to speak with a common voice for the inclusion of people living with dementia in the implementation and monitoring of the CRPD.
This approach to human rights and the CRPD reflects the model being used at a global level by Dementia Alliance International and Alzheimer’s Disease International.
The Board of the Ontario Dementia Advisory Group, all of whom are DAI members, included access to CRPD as one of their recommendations in testimony before a committee of the Canadian Senate.
“The CRPD is important as it helps to spell out practical steps to ensure persons with dementia enjoy human rights on an equal basis with others.”
I am often asked how the CRPD will apply to the human rights of people dementia.
Let me give you an example – a medical diagnosis of dementia frequently results in the automatic loss of a driver’s license.
Is it not our fundamental right to have our ability to drive evaluated by an independent assessment of functioning?
That’s why people with dementia need full access to the CRPD.
The issue of human rights has been an interesting journey so far.
We still have lots of work to do.
People living with dementia are included in the broad definition of disability in Article 1 of the Convention, but have not been included in its implementation.
We need a seat at the table.
We also have to improve knowledge about why human rights are important to people with dementia and why they need to fight for their rights.
People with dementia need to think of the Convention on the Rights of Persons with Disabilities as a tool to enable them to access fundamental human rights to which they are currently excluded.
I am looking forward with great anticipation to this 17th session of the CRPD and the committee’s consideration of the initial reports submitted by Canada and other countries.
Dementia Alliance International welcomes the election of Robert Martin, a person with an intellectual disability as a member of the CRPD Committee.
Over the next 8 years, if not sooner, we would like to see a person with cognitive impairments* caused by dementia elected to the Committee”.
Thank you for your attention.
* Please note, people with varying types of cognitive and other disabilities prefer the term ‘cognitive disabilities’
The briefing note about the event is attached below:
Fellow dementia advocate and DAI member, also co founder of the Purple Angel initiative, Norm McNamara from Torquay in the UK is once again rocking the world with his World Rocks Against Dementia (W.R.A.D.) initiative. This year, there are 74 events in 12 Countries around the world. It is not too late to host your own event to raise awareness of dementia, and it could be as simple as spending time with a friend or neighbour with dementia, listening to music together, or hosting a major event as is being done by many around the world.
W.R.A.D. is a worldwide event raising the awareness of dementia, which was celebrated in 16 countries in 2016 and supported by Alzheimer’s Disease International and Dementia Alliance International. It is through the efforts of many individuals, small groups , and large or small organisations globally that we can and will change the world view of dementia. Well done Norms for keeping this great initiative going.
Norm has received letters from the UK Prime Minister Mrs Theresa may and former Prime Minster Mr David Cameron in support of his work, and DAI congratulates him and his team for all they do for all people with dementia, and our families.
Celebrating all women on International Women’s Day and all of the wonderful men who might support us! Of course, many women with dementia live alone, or have another woman supporting them; we celebrate you all. We also acknowledge the impact of dementia on men and sons, but know from the reports and data, that dementia impacts far more women than men globally, either as care partners or as women who are diagnosed with dementia.
There are many reports you can read about this, including the newsletter DAI sent out recently if you are on our mailing list. In case you are not subscribed, I have added the information in our e-News below.
Women are much more likely to be affected by dementia than men. The majority of people living with the disease and those most at risk of developing dementia are women, and women account for an overwhelming majority of care partners and health professionals;
Women make up the majority of care partners- two thirds in higher income countries, and many more in low and middle income countries;
There is not enough research on dementia and women. There is a need for more research with women as participants and gender dynamics of the disease;
Due to pressure of other activities – Professional, Mother, Care partner, Homemaker – Women have less time and are less likely to see health providers early;
By 2050, 68% of the 131.5 million people with dementia will live in low and middle income countries. In these countries, the primary care partner is much more likely to be female.
Last week, an event was hosted in London by GADAA, “Women and dementia: A Global Challenge”. The recording of the event will be available to view soon. Kate Swaffer, DAI’s Chair, CEO and Co-founder was one of the women presenting, and you can read her speech notes here…
The Global Alzheimer’s & Dementia Action Alliance (GADAA) aims to connect a broad spectrum of wider international civil society organisations (iNGOs) including international development organisations, health-focused NGOs, disability rights champions, older people’s networks, human rights organisations, faith based groups and women’s organisations. Through the GADAA network we aim to champion global action on dementia and to support iNGOs in responding to the global challenge. DAI is a member of the GADAA Steering Committee.
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.
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.
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.
It is very clear from the data, my personal experience, and that of DAI members and others, that;
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.
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;
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 to Civil Society Organisations must include
Recommendations to International, Regional and National Policy-makers:
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.
Author: Kate Swaffer © 2017
Chair, CEO & Co-founder, Dementia Alliance International
Download the slides here:
Bredesen, D (2014), Reversal of cognitive decline: A novel therapeutic program, Aging, vol 6, (9), 707-717.
Bredesen et al (2016) Reversal of cognitive decline, Aging, Vol 8, No 6.
Erol R, Brooker D, Peel E, (2015) Women and dementia: A global review, Alzheimer’s Disease International, London.
Godfrey J, El-Badri N. (2009) Toward optimal health: advising aging women about dementia, Journal Of Women’s Health, 18(7), 929-933.
Lang L, Clifford A, Wei L, et al. (2017) Prevalence and determinants of undetected dementia in the community: a systematic literature review and a meta-analysis. BMJ Open 2017;7.
OECD, 2015, Addressing Dementia: The OECD Health Policy Studies, OECD Publishing House, Paris.
Podcasy JL, Epperson CN. (2016) Considering sex and gender in Alzheimer disease and other dementias, Dialogues in Clinical Neuroscience, 18 (4), 437-446.
Swaffer, K 2015, Reinvesting in life is the best prescription, Australian Journal of Dementia Care,http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription
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.
Szoeke, C 2015, National Dementia Congress Presentation, http://www.slideshare.net/informaoz/dementiacongressfeb2015-szoeke
World Health Organization, (2012) Dementia: A Public Health Priority <http://www.who.int/mental_health/publications/dementia_report_2012/en/>
In January DAI hosted a Master Class “But you don’t look like you have dementia” about what is feels like when people who have been medically diagnosed with this or that type of dementia are accused of not looking like they have it. Kate Swaffer, our current Chair and CEO, and a co founder of DAI was maliciously accused of this late in 2016, to the point of feeling bullied by a reporter into disclosing decades of private, confidential and very personal medical to strangers and lawyers, and providing two highly confidential medical documents to the reporter. Once the reporter realised she was not a medical fraud, he still wrote a defamatory story which she responded to here…
Our Master Class “But you don’t look like you have dementia!”, held in an attempt to expose how commonly this occurs to most people ‘living well’ (at least publicly) with dementia, and how hurtful it is to people with dementia and their families. It also offers some advice on how to cope with it, and hopefully is helpful to those living without dementia, especially those who persist in doing this.
These people are the ones who have sat in doctors rooms and been told they have a dementia of this or that type, or a family member has it; they are the people told to get their end of life affairs in order and get acquainted with aged care services (often now referred to as Prescribed Disengagement®[i]).
Their families have been sitting alongside them, trying to hold it all together, and pick up the many pieces falling around them.
This phrase is said all too often to people with dementia who are publicly appearing to live too well, whether they have become public advocates, or are simply living well in their local communities. We even have many stories of staff working in advocacy organisations saying it, as well as many care partners who volunteer for these organisation’s.
One woman from Australia, diagnosed for over ten years, but still living alone in her own home, and living beyond dementia, said in response to to Kate’s blog, of her own recent 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 late stage for them to really have it, needs to stop, and in the worst cases, could be seen as a disability hate crime. There are too many people who have been medically diagnosed with dementia now in the public eye, either as speakers, authors, advocates or bloggers and who may not look like they have dementia, but in reality, not all the doctors around the world can be wrong. It is offensive, to the person diagnosed, to their families, and to their medical doctors, and quite simply, it has to stop.
It is harmful, hurtful, and wrong for anyone without dementia to accuse someone living with a chronic progressive terminal illness, that when diagnosed in the earlier stages of the disease, has mostly invisible disabilities.
In reality, as many people with dementia are now being diagnosed much earlier in the stages of the disease or condition causing their dementia, and although still being provided with late stage dementia management, they can and do often live well for many more years than was previously thought possible. And unlike something like Downs Syndrome, there is not a particular ‘look’ to dementia.
You can watch the recording of our webinar here… Please listen, and learn.
By Mary Beth Wighton, Person diagnosed with dementia, Chair of the Ontario Dementia Advisory Group and member of Dementia Alliance International. First published: July 2nd 2015. Thank you Mary Beth forgiving us permission to share your experience here.
When I say I have dementia, there is usually a stigmatized response: “Gee you don’t look sick.” “You are too young to have dementia.” “I’m not good at math either.” “Everyone gets forgetful.”
What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don’t believe I have a disease that has no cure and ultimately will die from. One such person said that I “…can walk and talk so I’m fine.”
What else do I need to do in order for all people to believe me?
Perhaps the better question is why do I feel the need to convince them? And why am I disappointed, hurt and sometimes angry with them that they don’t?
Rest assured I have received a diagnosis of probable Frontemporal dementia. I have been through the gamete in seeing doctors, tests, and been under high-scrutiny. My brain has been picked and prodded at. I’m so sick of it, that I have told Dawn I’m done with doctors and don’t want to see and more. I will do the basic requirements necessary for me to retain my personal insurance. That most likely means a yearly visit to the world renowned brain hospital Baycrest to see the Head, Division of Neurology, Dr. Morris Freedman.
I’m reminded of the apostle “Doubting Thomas” who refused to believe that the resurrected Jesus had appeared to the other apostles until he could see and feel the wounds of Jesus.
Skeptic, why do you not believe I have dementia?
I am unable to show you my diseased neurons that are not firing on all cylinders. I am not alone in this as most people having dementia experience this stigma. I am fortunate in that I have an early diagnosis. This has enabled me to have the time and ability to learn about my diagnosis and prepare accordingly.
Dementia does not mean: I am old and always forgetful.
• am a person
• have a diagnosis of dementia
• have great long-term memory
• struggle with short-term memory
• struggle with making decisions
• struggle with math
• struggle with understanding humour
• struggle with understanding complex movies
• struggle with word finding
• am not as compassionate to others as I once was,
• take a great deal of medication that makes me tired (not lazy), and
• I am loved by many.
Reader, take the time to understand dementia. It doesn’t take long. Educate yourself. I would hate to think that you too are a skeptic.
On Monday and Tuesday of this week, I attended the WHO meeting in Geneva, REHABILITATION 2030: a call to action. Download the full call to action here: REHABILITATION 2030- A Call For Action, and follow this link to download a number of other background papers if you are interested.
This meeting was the first of its kind focused on rehabilitation, similar to the First Ministerial Conference on Dementia held in March 2015, where I placed rehabilitation for dementia onto the global stage in my keynote speech. Everyone, including people with dementia have the right to rehabilitation. There were well over 200 people in attendance in the Executive Board room, representing organisations and almost all types or causes of disabilities from all around the world. I’d guess it was the first time dementia has been represented at a special rehabilitation event like this.
After introductions on Day 1 by Dr Krug on the importance of rehabilitation for all, he stated that we all must bring this topic into the political arena, as without change in policy, little will happen. He also talked briefly of the need to fully integrate rehabilitation into health care systems globally.
Following this, we watched a short film, with a very clear and strong message that;
“Everyone must be able to access available, and affordable rehabilitation services.”
I have many pages of notes from the two days, but feel rather than overload (or bore) you, there will be a s series of blogs covering the two day meeting over the next few weeks, commencing with here with Blog #1.
Early on Day 1, we heard three testimonies from people living with disabilities, who, without rehabilitation, would not be living productive and meaningful lives today. These are the notes I took from these powerful testimonies:
Rita works at the WHO, discussed why rehabilitation is essential. Cycling was a passion and also how she met her husband – but an accident with a car caused her severe spinal injuries, paralysed her, and caused many other medical problems. Basically, she said, she has been reconstructed, and is lucky to be back at work.
She says to people who tell her she is a miracle, but that it is not a miracle, but mostly due to full and authentic package of rehabilitation!
Family and friends and colleagues also important, but motivation and never give up attitude is what has helped as much as rehab. The result was a ‘new me’ but allowing her to live beyond her paralysis and other critical injuries – without it, she would still be like a robot, unable to walk properly, work, function and have a good life. She chose a holistic path for pain, instead of the addictive drugs; rehab has a huge impact, with immense value. Finally, she stated:
Works at UNICEF as a program specialist. He became blind in his late 20’s due to an explosion – rehabilitated, but still a very difficult journey. From a small lower SES small town in India, he says he was luckier than many other Indians, which was simply due to care and services being arranged by himself, not the health system. Support of family and friends was CRUCIAL, and even medical doctors do not know what is available; there was a lot os trial and error, and he found out through others living with disabilities, not the health system what was available. It was the only way he achieved, as there are no services. On top of that, all services in India are urban centric, even though most people live in rural communities, not the cities. Also, the quality of services was poor, e.g. given a shorter cane, simply because one for someone tall was not available – causing the chronic backache!
He was told “To forget everything as you are blind now”, and you can do things like basket weaving instead of living your life!! He was very angry and said he wanted to tell them to shove the basket… He was also told it would be 5 years before services, just in case his sight came back – he took out his eye and said, do you think this will grow back!
Things must change – his own experiences of rehabilitation and services was self sought and fought for, and costly. Most with disabilities live in poverty – he was lucky he had funds, and some support from his employer. System structures must be set up to make it affordable for all. Finally, he said, which I thought was the quote for the two days:
She is the Executive Director of the Association of Spinal cord injury in Cambodia, which she established in 2012. Ms Sohka became a paraplegic during the civil war in Cambodia; at that time, no rehabilitation, no medical support, and the situation was getting much worse. Her family took her to the rehabilitation camp, and pushed hard for a humanitarian pathway.
She needed her family to earn money to support her rehabilitation and the equipment required, of which none was provided by health system in Cambodia. Finally, she said:
These were indeed three very powerful testimonies, and I have little doubt there will be many people diagnosed with dementia who will, as I did, relate to them. It has almost certainly been the self prescribed rehabilitation and lifestyle changes, that have allowed me to slow the progression of my own dementia.
I was there in my capacity as one of eight co-founders, Chair and CEO of DAI, representing all members of Dementia Alliance International, and in reality, all people with dementia globally. There was no opportunity at the meeting to make a formal statement, although we had the opportunity to respond to three questions prior to the event. You can see our statement here:
As this is Part 1 of a blog series about rehabilitation and dementia, I will mention that there was however, only one opportunity to ask a question which was on Day 2, so I put the DAI sign up and was invited to speak. My question to the panel was this:
“How well will dementia and rehabilitation be focused on and how will we ensure people with dementia receive rehabilitation?”
Dr Shakhar Saxena, the Director of the Department of Mental Health and Substance Abuse at the WHO, answered very positively. He stated that we will all need to wait until the Global Action Plan for Dementia is accepted, but that if it is accepted (we all expect it to be), then he is confident it will be taken seriously. He said the WHO want to start a public campaign to remove the misconceptions around dementia [as DAI has begun], but additionally, the WHO will be collecting information from countries to find out what they are doing, and use the Global Dementia Observatory to pull together the data. Dr Sazena stated clearly the WHO will be relying on DAI to assist with this, as we are proving it can be done, and rehabilitation is very useful to enable us to live good lives for longer, as well as contribute significantly to society.
Marc Wortmann, CEO of our close partners, Alzheimer’s Disease International, sitting next to me, and I were both very happy with this response.
It is obvious, when the conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries is that “Dementia receives the worst care in the developed world”, that this is unacceptable.
It now seems clear that rehabilitation and proactive disability support for all newly diagnosed people with dementia has the greatest potential to change that. DAI is showing this by example of its members are living meaningful and significantly productive lives. There is also much emerging evidence showing it is possible to slow down and even reverse cognitive decline in some types of dementia, when diagnosed in the very early stages or at the pre dementia stage. We need to embrace this emerging evidence, or the negative impact to dementia care and our prognosis will be impacted greatly if we don’t.
It is also why we must continue to push for a human rights based approach in aged and dementia care, that includes rehabilitation and active disability support in the same way people would receive after a stroke or other brain injury. This will move us towards improving quality of life and well being for everyone including our families and care partners who support us, not just those with dementia or requiring aged care services.
[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.
Over the last few weeks and months, I have been watching with interest various matters in the UK, things happening to people with dementia there, that are a lot more than unhelpful. Wendy Mitchell has written a number of excellent blogs on her experiences of being denied Personal Independence Payments (PIP), and I know Chris Roberts and have no doubt many others have also recently had significant issues around similar things. It seems they want us to live as well and as independently as humanly possible, but then when we do, we are not believed we have dementia, and for many, funding is cut, the very thing that is needed to maintain this independence.
Thanks to the Internet and social media, I often connect with professionals who may be able to offer support, and have connected with Rosalind Hughes via Twitter. Obviously, DAI does not endorse people or organisations, but if we feel sharing the services of a particular individual or organisation to our members might be of value, we do so. This blog is one of those times.
Rosalind Hughes is a solicitor and Head of Just Caring Legal. She has worked in the legal profession since 1995 and has become particularly interested in adult social care over the years due to her work at the Citizen’s Advice Bureau.
Having met families who were wrongly paying for substantial care home bills, who are experiencing significant healthcare issues such as Alzheimer’s, or other forms of dementia, cancer and Parkinson’s to name but a few, she felt driven to set up her own specialist firm dedicated to challenging these cases. Rosalind has a great deal of empathy with families who have been wrongly denied access to NHS Continuing Healthcare and seeks refunds of care fees and offers other vital services to complement her work to provide a holistic service. We do not know her fees, but her guest blog below may be able to support some members who run into issues such as the ones Wendy Mitchell is facing.
By Rosalind Hughes, Solicitor and Head of Just Caring Legal
“Recognising that the care needs of a family member with dementia are more than family and friends alone can manage can be hard. Finding and affording a way of meeting those needs so they can continue to live as full a life as possible can be just as tough.
Many people don’t realise that there is full NHS funding available for care and nursing home fees where an adult needs ongoing support outside hospital as a result of disability, accident or illness. This funding, called NHS Continuing Healthcare is not financially means-tested and is managed and distributed locally by NHS Clinical Commissioning Groups (CCGs).
However, access to NHS Continuing Healthcare funding can be a particular struggle for people suffering from dementia. Some are lucky enough to be found eligible, while others with similar levels of need have to fund their own care or rely on local authority funding, which is means-tested and increasingly relies on having to be “topped up” and paid for by by third-parties, sometimes to the tune of hundreds of pounds a week.
Why this lottery? It is mainly because the criteria for assessing NHS Continuing Healthcare eligibility, which hinges on the person having care needs arising from a “primary health need”, leaves too much room for interpretation. While the National Framework for NHS Continuing Healthcare and NHS funded nursing care has been in place since 2007 to give guidance to CCGs, in reality there is very little consistency in decision-making. Also, the complexity means many people struggle to understand (and are often not fully informed) whether their loved ones are entitled to NHS Continuing Healthcare.
A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and Age UK among its members) concluded that the NHS Continuing Healthcare system is failing people across the country. Entitled Continuing to Care?, the report describes how many people are being unfairly denied this desperately needed support. And how even those who are granted NHS Continuing Healthcare funding are often given inadequate care packages that don’t meet their needs.
The National Framework makes clear that eligibility for NHS CHC is not dependent on a particular disease, diagnosis or condition. It is based purely on establishing a ‘primary health need’ and a full assessment of the nature, complexity, intensity and unpredictability of someone’s overall care needs.
Yet the Continuing Healthcare Alliance found that people with Dementia are regularly incorrectly denied NHS Continuing Healthcare on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS Continuing Healthcare. This can be incredibly distressing and frustrating for families and loved ones who believe that their loved ones actually do meet the eligibility criteria.
The National Framework also makes it clear that just because needs are being ‘well-managed,’ this does not mean they are no longer a factor and should not be marginalised. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS Continuing Healthcare withdrawn because their condition has “improved or stabilised”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.
The report concludes that many decisions on NHS Continuing Healthcare are budget-led rather than needs-based and person-centred as stipulated by the National Framework. There can be conflicts of interest within CCGs, where the person in charge of assessments is also the one charged with hitting savings targets on NHS Continuing Healthcare.
This can make applying for NHS CHC a highly distressing and frustrating experience. On the other hand, it also means in many cases, decisions can be challenged on the basis that the National Framework has not been properly followed. The Times Newspaper recently ran the story of how Vicki Keiller, a 90-year-old woman with dementia, paid nearly £100,000 in care fees when she should have been receiving NHS Continuing Healthcare. She got her money back – but only after a two-year struggle between her determined son Don, a university lecturer, and the local CCG. Success stories are possible with a bit of perseverance and first-class knowledge of the National guidance and benchmark cases such as Coughlan.
So, what advice do we have for people who believe that a loved one with Dementia should be receiving NHS Continuing Healthcare? In a nutshell, it is this.
Don’t believe everything you are told
You may hear that your loved one “won’t be eligible” for NHS CHC because they are not “at death’s door” or “don’t have to be PEG-fed” – or that someone at the CCG has already carried out an assessment and they don’t qualify. But there are rules about the assessment process which the NHS has to follow, and these include carrying out an initial checklist to decide if an NHS CHC assessment is appropriate, when asked to by the family. If they do not comply you can challenge this.
Keep meticulous dated records of care needs
When challenging an NHS CHC decision, evidence of care needs is crucial and the family have a unique perspective. Care home or hospital/medical records sometimes omit vital relevant information so check them regularly to make sure they are accurate, complete and up to date. Keep your own detailed journal charting your loved one’s condition and needs, especially (not solely) in the 12 vital NHS CHC “domains” – a copy of these can be downloaded here. Cross reference this with the care records to ensure they present a true and accurate picture. If they don’t, challenge and question those in charge of the care.
Unfortunately, it is regularly reported that CCGs may be making decisions on NHS CHC eligibility based on budgets rather than purely on care needs. It is often only those, like Don, who refuse to give up, that succeed. If local disputes resolution fails you can take the case to an Independent Review Panel, and if this fails, to the Parliamentary Health Service Ombudsman. At Just Caring Legal, I am regularly guiding clients through this complex process and I feel passionate about making a difference and seeking to secure positive outcomes for vulnerable elderly clients.”
Thank you Rosalind.
“Patient care is more than just healing — it’s building a connection that encompasses mind, body and soul.
If you could stand in someone else’s shoes . . . hear what they hear. See what they see. Feel what they feel. Would you treat them differently?”
CEO Toby Cosgrove, MD, shared this video, titled “Empathy,” with the Cleveland Clinic staff during his 2012 State of the Clinic address on Feb. 27, 2013. Published on February 27, 2013.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)