Along with Professor Peter Mittler, Howard Gordon attended the recent Global Disability Summit in London, representing Kate Swaffer and DAI at the Civil Society Forum and Global Disability Summit in London on 23rd – 24thJuly 2018.
Whilst they DAI members wear many hats and advocate at many levels locally, nationally and internationally, Howard and Peter were attending the Summit as members of DAI. Amy Little from GADAA and the Alzheimer’s Society UK supported our members, also enabling DAI to have brochures and materials on the MarketStall she was hosting.
It was also pleasing to note that Nigel Hullah from the 3 Nations Dementia Working Group was also in attendance. Working collaboratively and together, we are so much stronger, especially wheh trying to represent 50 million people.
We have had a lot of activity since this Summit was held, which happened in Chicago, so the number of blogs in our draft folder is rapidly growing, and as we don’t want to overload you, we will only post weekly at this point.
For World Alzheimer’s Month, we intend to have a daily blog, so keep your eyes on your inbox from the 1st of September.
Howard wrote this summary for us:
In June, I learned of the Civil Society Forum and the Global Disability Summit that was to be held in London, organised by the International Disability Alliance and the UK and Kenyan Governments.
On further investigation, neither days appeared involve anyone living with Dementia as a speaker or delegate and I contacted the International Disability Alliance for clarification. After numerous emails from myself, Kate Swaffer and others we finally secured three places as delegates for the two days, one for the Alzheimer’s Society and two for DAI but sadly even though I tried up to the day before, no speaker.
DAI shared a stand with GADAA, the Stride Project and The Alzheimer’s Society and during the intervals we were there talking to delegates and making connections with DAI and the Stride Project.
The objectives of the summit were:
Raise global attention and focus on a neglected area
Bring in new voices and approaches to broaden engagement
Mobilise new global and national commitments on disability and
Showcase best practice and evidence from across the world
During the two days there were many opportunities to talk about rights, post-diagnosis support, services, funding and inclusion and although there was no opportunity to speak, I had taken copies of one of the DAI statements prepared by Kate Swaffer and some were placed on the stand and others I handed out as I spoke to delegates, at least DAI’s message was communicated.
One of the videos shown at the Summit
The main opportunities that may come from the two days are:
New DAI members in three African countries.
An invitation for DAI to be involved in the work of the UK Department for International Development and.
A meeting with Sir Philip Alston who is undertaking a UN special investigation into poverty and disabilities in the UK.
The Charter for Change, is full of promise but the devil is in the detail and whether Governments and organisations follow through with their commitments.
If the reaction of a member of the House of Lords to being told I have Dementia during our conversation is anything to go by, I have my doubts.
You can find a shortened version of the charter here:
The two days were different in that the forum was more about DPO’s and NGO’s whereas the Summit was not unexpectedly, more a political backslapping exercise.
My name is Howard Gordon from Sheffield in the UK, I am a person living with COPD, Alzheimer’s and Frontotemporal Dementia, here today as a member of, and representing Dementia Alliance International, and our Chair and CEO, Kate Swaffer. DAI is an organisation that represents the 50 million people currently living with dementia. I am one of them.
The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.
Dementia Alliance International is the global voice of people with dementia, and Alzheimer’s Disease International is the global voice on dementia. Both are lead organisations of the Global Alzheimer’s & Dementia Action Alliance and the impact of dementia as a disability, and on women are two areas of our focus.
On the occasion of this Global Disability Summit, we ask that the you take notice that many national health systems exclude the collection of data on their citizens over age 60, others only report data to age 49, and less data is collected on women and girls than on men.
There is a need to disaggregate data by disability, sex and age to understand the state of women with disabilities, especially in LMIC’s and remote communities, and informing policies to ensure their effective inclusion and the full realization of their human rights.
Together, we urge continued attention to neurocognitive disorders in national data sets and refer the commission to the work of the Global Dementia Observatory project of the WHO which is developing a knowledge and practice exchange for Member States in support of the Global Dementia action plan as adopted by the WHO in May 2017 and the PAHO regional dementia action plan.
We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.
Professor Peter Mittler stated in 2016; “Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This could be considered as an example of systemic discrimination against millions of people.”
As a member of Dementia Alliance International representing the 50 million people currently living with dementia, and those being diagnosed every 3 seconds, of which the majority are living in lower and middle-income countries, we ask to be included; which also means support to be includes, both in terms of our cognitive and or other disabilities, and funding to enable attendance. Dementia ensures for the vast majority of people, an enforced form of poverty, due to the discrimination and stigma still experienced.
Dementia Alliance International would also like to remind delegates here today that people living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability.
Everyone with dementia is a rights bearer under the UN Convention on the Rights of Persons with Disabilities (CRPD). All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.
Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.
It is also imperative the impact on women and girls of dementia is considered.
Women are disproportionately affected by dementia. More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.
Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons.
Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.
Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.
Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).
The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way. Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.
Gendered barriers to mobility and accessing justice lead to isolation and exclusion.
Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.
Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.
It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.
Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.
In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.
Finally, we ask governments, Member states, NGO’s, DPO’s and Civil Society to consider their responsibility to provide the financial support so often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with
“Nothing about us, without us”,
We therefore ask we leave no one behind, including people with dementia.
The media need to refrain from promoting the perception that we are all suffer, I do not suffer now but I know I will suffer later in my journey, but I do not want to be referred to as a sufferer. If I had Cancer, the media would refer to me as a fighter, yet I am a fighter, I fight every day to live within the reducing limits of my Dementia. Just because I have a terminal disability, does not mean I should not be treated to equally with other persons in my community.
Dementia is no longer a silent disease, we have rights under the UN conventions and we no longer wish to be subjected to the philosophy of BPSD leading to Chemical Restraint, Sectioning and Involuntary Care.
I do not consider myself a sufferer, I am a fighter, fighting my co-morbidities and fighting for our rights
DAI also looks forward to the day when we no longer need to define people by disability, and we are all treated equally.
We therefore ask we leave no one behind through the full implementation of the CRPD, including people with dementia.
Sources for the statement:
The Dementia Alliance International, the World Health Organisanisation, the United Nations, the CRPD, the Global Alzheimer’s and Dementia Action Alliance, and the Alzheimer’s Society UK.
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.