Category Archives: Human rights

Being bold: Living with dementia

Speakers: Professor Dawn Brooker, Association for Dementia Studies, University of Worcester; Tania Dussey-Cavassini, Swiss Federal Office of Public Health Professor; Dr Anne Margriet Pot, World Health Organisation; Faraneh Farin Kaboli, Iran Alzheimer Association; Kate Swaffer, Dementia Alliance International; Special guest and MC: Baroness Sally Greengross.

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.

Slide 3
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.

Side 4
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).

Slide 5
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.

Slide 6
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.

Slide 7
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

Slide 8
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

Slide 9
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

Slide 10
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.

Slide 11
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.

Slide 12
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

Slide 13
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
  • Quit smoking
  • Physical activity
  • Healthy weight
  • 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. 

Slide 14

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.

Finally…

Slide 16
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:

Women and Dementia_IWD_GADAA_London_2 March 2017_Swaffer

References

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/>

 

“But you don’t look like you have dementia”

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.

[i] http://journals.sagepub.com/doi/abs/10.1177/1471301214548136?ssource=mfr&rss=1; http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/

REHABILITATION 2030- A Call For Action # 1

 

On Monday and Tuesday of this week, I attended the WHO meeting in Geneva, REHABILITATION 2030: a call to actionDownload 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.

Introduction

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:

Three personal testimonies:

1. Dr Rita Sadana 

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:

“Rehabilitation gave me a second life worth living.”

2. Dr Gopal Mitra

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:

“Leaving no one behind, does not mean, leaving almost no one behind!”

3. Ms Cheat Sohka

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:

“Rehabilitation taught me to see a future, and that it was possible to continue to live and contribute to society.”

 

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.

Representing DAI

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.

 

Mary’s 4th Blog from the UN Social Forum

screen-shot-2016-10-27-at-6-39-56-amFollowing on from our first blog, welcoming you to the new year, we begin the years blog series with our first one being the last account from Mary Radnofsky of the Social Forum she and Peter Mittler attended last year, representing DAI and all people with dementia.

Thanks again to them both for their excellent work, and special thanks to Mary for writing this particular series of blogs. It is quite a long read, so grab a pot of tea or coffee, and sit yourself down in an arm chair for a very interesting read.

Mary’s 4th Blog from the UN Human Rights Council – Social Forum

10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)

You know that family reunions are often fraught with peril when your cousin the hunter is seated next to your aunt the vegetarian, or when your nephew in med school talks about his latest dissection over turkey & gravy. Sometimes the things people say make us uncomfortable at the dinner table, and when it’s family, we often let them know – either with a disapproving glare or an interruption, sometimes a raised voice or an abrupt departure. Rarely does it come to slinging a handful of mashed potatoes across the room. (In fact, no food fights were allowed when I was growing up.)

So at the United Nations, when people with common problems but multiple perspectives get together to discuss how best to solve them, I was very comforted to see that everyone behaved quite respectfully.­ For the most part, everyone had to hear each other out if they wanted a seat at the table.

I saw only one exception, and it was on the last day of the forum. An audience member who’d been given two minutes to comment was rambling on through the five-minute mark with no intervention by the moderator. Another lady in the audience was squirming in her chair, looking around, raising the palms of her hands, then looking at me, as if appealing to me to do something. I whispered, “It’s ok; the moderator will handle it.” She shook her head no, slapped her knees, and loudly said, “But she’s not doing a thing!”

I was shocked by the breach in protocol, not having seen anything like it in over 20 hours of meetings. So I tried to calm her, and again whispered, though more firmly, “The moderator will take care of it.” She whipped her head around to search the audience and roll her eyes, then made an audible protest about how much time was being used, and how unfair it was. She’d metaphorically thrown a handful of mashed potatoes against the wall. But none of it stuck. No one reacted. I sat very still, facing forward, with my eyes focused on the panel of experts, also ignoring the outburst. But I expected a gravy boat to come flying from the opposite corner at any second.

About a minute later, the moderator thanked the speaker for her comments, and gave the floor to the next person. This is a civilized place, and moderators understand that sometimes it’s more important to allow a vague, meandering voice to be heard, than it is to respect time limits.

There may be criticism, avoidance, and disagreement, but no food fights at the UN. Enjoy.

Tuesday, October 4, 2016 Making Development Inclusive.

Moderator: Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Department of Social Development of South Africa

Ms. Judith E. Heumann, Special Advisor for International Disability Rights of the U.S. Department of State

Mr. Michael Njenga, Board Member, Pan African Network of Persons with Psychosocial Disabilities, stated that the purely medical model for assessment is not effective. There must be a needs-based social model.

Ms. Priscile Geiser, Chair, International Disability and Development Consortium IDDC

Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disability, UNICEF

(see the panel on UN WebTV: of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date)

Interactive Dialogue

Gian-Pierro Griffo, from Italy, spoke about the UN Sustainable Development Goals (SDGs), and that people with disabilities need to be consulted on the decisions and events that affect their lives. People are the actors in their own country in working for development. They have the capacity to apply the Convention, so their knowledge and competence need to be included.

Peter Mittler stated that disability organizations are dissatisfied with the implementation of the Convention, and with the lack of accountability of countries for CRPD. (Slide the Time Index to 1:02 of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date.) Peter wants to ensure that people with disabilities are co-partners on governmental committees for implementation, as the Convention requires, and he wants disaggregated statistics about children with disabilities in schools.

Tuesday, October 4, 2016 Side Event: Underrepresented Groups of Persons with Disabilities.

Co-organised by the African Disability Forum (ADF), Pacific Disability Forum (PDF), World Federation of the Deafblind, World Federation of the Deaf, International Federation for Spina Bifida and Hydrocephaly, International Federation of Hard of Hearing People, co-sponsored by the Permanent Missions of (TBC), with support from the International Disability Alliance. (Transcription available at https://synchshare.de/ida-cassandra)

Peter was given a generous amount of time to speak. Part of what he said was on quality of care, “We have evidence from the Organisation for Economic Co-operation and Development (OECD) that dementia gets the worst care in the developed world and we know it is unsatisfactory in the less-developed world. Many don’t get a diagnosis. Because young people are leaving the villages, old people are left isolated.

Peter also spoke on the successes of DAI: “We have persuaded the Alzheimer’s Disease International, which is the main international organization for people with dementia, with 85 national societies, to support our policies. So now they have a human rights policy, which includes full access to the CRPD and other conventions.”

Peter was critical of progress saying, “As far as we can see from CRPD reports, not a single member state has included people with dementia in their implementation of the convention; we ask why not, because we are fully entitled to it in Article one. That is indisputable, yet we are absent.” He added that, “About 30 countries have launched dementia strategies. They’re quite good dementia strategies; they contain the right ingredients and they may say nice words about the CRPD, but they don’t use the CRPD which they have ratified in creating dementia strategies.”

Peter also discussed the rights of children: “I’m sorry that no one in this meeting has mentioned that of the 57 million children out of school, more than a third are children with disabilities… I’ve been trying to draw attention to this for 15 to 20 years, ever since 1990 when the UN promulgated Education for All… We have a promise of a report from UNICEF institute of statistics in Montreal, with disability-disaggregated data for the first year of the SDGs but it’s in the coffin marked ‘when data become available.’ There is only some focus on children already in schools. And the UNESCO monitoring reports have said that, year after year after year. Some of us have protested about it; nothing has happened.”

I then spoke about the need for “Rehabilitative Education” (academic or skills learning) for people with dementia: (Transcription available at https://synchshare.de/ida-cassandra)

“My name is Mary Radnofsky; I’m from Dementia Alliance International. My comment is about lifelong learning. I’m interested in knowing if “Rehabilitative Education” is considered part of this category of inclusive learning. When people with dementia are diagnosed, it is assumed that they can no longer learn and this is, of course, a myth that needs to be broken; it is entirely false.”

I said that “Rehabilitative Education” should apply to people with dementia, since cognitive education is already guaranteed for people with disabilities to be lifelong learners. This could be another tool for us in the legitimate argument for RE-teaching us things that we lose due to degenerative brain diseases. Despite myths that we can no longer learn, the DAI Chair is getting her doctorate, I explained. I strongly advocate for anyone with dementia to be able to take courses in finance, formal logic, or math, for example, when we start to lose the ability to balance our checkbook or manage finances. And I declared that this “Rehabilitative Education” should be funded, just as any other rehabilitative speech or physical therapy.

Tuesday, October 4, 2016 Strengthening Accountability

Moderator: Mr. Stefan Trömel, Senior Disability Specialist, International Labor Organization (ILO

Ms. Malena Pineda Ángeles, Chief of program persons with disabilities, National Human Rights Institution of Peru

Mr. Alastair McEwin, Commissioner, Human Rights Commission, Australia, wants to eliminate discrimination against people with disabilities, so they have equal rights before the law, and promote principle of human rights the same as with the wider community. He says a government should be able to set up standards in any issue, to give community guidance, to be sure they comply with their Disability Discrimination Act. But he also said it takes time and resources to maintain and monitor changes.

Ms. Godliver Omondi, Senator from Kenya

Mr. Geir Jensen, President of the World Federation of the Deaf-Blind – made a statement read by assistant. He spoke of capacity-building by the International Disability Alliance (IDA) which has provided technical support to advocates from over 90 countries in 62 national overseas workshops. People became engaged with treaty bodies. Specific and mainstream monitoring processes were managed. Increased use of these mechanisms reinforced UN mechanisms too. As they are not a homogeneous group, he said, it’s a challenge to include all disabilities; there is a lack of reasonable accommodations , and extensive training is still needed for assuring the CRPD perspective is recognized.

Peter Mittler criticized the CRPD regarding accountability, to hold member states responsible for including a person with disabilities (Go to Time Index 59:45 at http://webtv.un.org/search/strengthening-accountability-social-forum-2016/5155220168001?term=social%20forum&languages=&sort=date.) Peter says that member states are not complying with implementation of CRPD Article 4, and that pressure should be put on them by the Office of the United Nations High Commissioner for Human Rights (OHCHR) as a direct outcome of the Social Forum.

Wednesday, October 5, 2016

Peter and Mary met in the café with Zhijun from the Peoples Republic of China, who was in Geneva studying about human rights, and asked about people with dementia in China; he said the challenges they still have, are for families to deal with stigma, hidden [harmful] practices, and basic human rights issues.

Peter and Mary also met in the café with Catalina Devandas (from Costa Rica), UN Special Rapporteur on the Rights of Persons with Disabilities, who asked us to suggest ways in which Member States can provide services for people with dementia for her upcoming report. Basically, she says, it is be the obligation of the state to provide support from a human rights approach. We told her about some of the DAI documents we’re working on, (e.g. the report on accommodating people with dementia at conferences, and creating dementia-friendly communities) and that we needed to get them ok’d by the DAI president to send them, but that we would get a summary to Catalina by the end of October, which she said would be fine, since her report would be published in March 2017.

Wednesday, October 5, 2016 Realizing the Human Rights of Persons with Disabilities

Moderator: Mr. Vladimir Cuk, Executive Director, IDA.

Ms. Theresia Degener, vice-chair of the CRPD Committee insightfully and clearly-explained about the implementation of the CRPD and monitoring of the practices in the 30 first countries that have been reviewed.

Wednesday, October 5, 2016

Implementation of Agenda 2030 under the CRPD: The Future We Want

Moderator: Bat-Erdene Ayush, Chief, Right to Development, OHCHR Academia

Ms. Abia Akram, CEO National Forum of Women with Disabilities of Pakistan

H.E. Ms. María Fernanda Espinosa Garcés, Ambassador Extraordinary and Plenipotentiary, Permanent Representative of Ecuador to the United Nations in Geneva

Ms. Eppu Mikkonen-Jeanneret, Senior Adviser for Global Social Policy, Ministry for Foreign Affairs of Finland

Ms. Sanja Tarczay, President of the European Deaf-blind Union

Watch on UN WebTV here…  

Interactive DialogueMary suggested the creation of a CRPD resource database: (Slide the Time Index to 35:35 at http://webtv.un.org/search/implementation-of-agenda-2030-under-the-crpd-contd-social-forum-2016/5157102747001?term=social%20forum.) Mary said, “In the three days of this forum, I’ve heard people speak of some wonderful programs they have created or observed in their countries or communities…”

“I suggest that the United Nations Human Rights Commission create a Library of Best Practices, with Primary Resources used in each country that has ratified the CRPD, to improve the conditions of life for people with disabilities. These documents would not be reports by officials, but rather they would be brochures, workbooks, educational booklets, handbooks to help people in airports, computer programs to assist people, phone Apps tied to the CRPD, etc.”

Whatever we can do to spread knowledge, will help people with dementia to make better decisions about what they want and need, to fulfill their human rights.

Closure of the Social Forum was celebrated in a “Family Photo” by a few of us at the end of the meeting. (I’m not in this one because I was taking it!) You get the idea: the world’s family at the annual reunion, each with a special dessert to offer.

Mm-mm! Good!

Mary Radnofsky PhD

Celebrating the International Day of People with Disability

We celebrate the International Day of People with Disability (IDPwD)

In doing so, we also applaud the work of many of our members and all people living with dementia around the world who have been working in their local communities, or on the national or global stage towards a human rights based approach to dementia and our access to the Convention on the Rights of persons with Disabilities (CRPD).

This year’s International Day of Persons with Disabilities also falls alongside the 10th anniversary of the adoption of the CRPD. Last year on this day, the #aday4all hashtag became the most popular across the internet. We all hope this happens again in 2016!

screen-shot-2016-12-03-at-7-47-10-amDementia Alliance International recently became a member of The International Disability Alliance (IDA), with what is known as Observer Status, and we are actively working towards full membership status. For those of you who are new to IDA, it says on their website:

We are united for the rights of persons with disabilities on the world stage

“The International Disability Alliance is an alliance of eight global and six regional organisations of persons with disabilities. We advocate at the UN for a more inclusive global environment for persons with disabilities and their organisations. The Convention on the Rights of Persons with Disabilities (CRPD) is our touchstone. We are invested in ensuring that the 2030 Agenda and the Sustianable Development Goals are inclusive and in line with CRPD. We support organisations of persons with disabilities worlwide to take part in UN and international human rights processes, and use international accountability mechanisms.”

Why is this important to people with dementia?

This is important for people with dementia to ensure our rights and recognition at the highest levels as people living with disabilities, caused by dementia.

It is imperative as we all work together towards the demand we made in Geneva at the WHO First Ministerial Conference in Dementia, March 2015 for a human rights based approach to dementia,  and an approach that must include proactive rehabilitation and disability support.

Simply put, if communities must provide wheelchair ramps, they must also provide support for people with cognitive disabilities to live an independently in their communities as possible, and with equal access that others can expect, and are afforded.

If through providing proactive disability support for all, including people with dementia, our communities are dementia enabling and dementia accessible, then they will automatically be better for everyone of any age to live and thrive in.

Thank you to the outgoing DAI Board

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On 15/16 November, DAI held it’s this Annual General Meeting, and sadly we had a number of resignations, but also a number of nominees to fill the vacancies; This year, for the first time, we had more nominees than vacancies. Some members have resigned for health or personal reasons, and others as they have felt it time to allow new members to take leadership positions. Perhaps the most important thing as leaders that we can do, is pass the baton to new members.

It is an exciting time for DAI, and this week, as Chair, I would like to specifically thank the outgoing board members. In the next few weeks we will be providing our first formal Annual Report for our members as well, and I am thrilled to know that Dementia Alliance International, an advocacy and support group, still remains of, by and for people with dementia, and is making excellent progress.

Thank you to the outgoing Board 2016 members 

We extend our deepest thanks and sincere gratitude to Susan (Sue) Stephens, who has served on the board since we started on January 1st, 2014. DAI started with seven co-founders, from four different countries, and Sue is one of our founding members from Canada. Sue’s wisdom, intellect and humour has been invaluable to us, and we know our friendship will continue. Thank you Susan, from us all.

Special thanks also to our outgoing Vice Chair Helga Rohra, Board members Leo White and Jeanne Lee, and outgoing co-opted board member Mary Radnofsky. Whilst we are sad to see you move off of the board, we accept and understand your personal needs to step down, for health or personal reasons.

Sue, Helga, Jeanne, Mary and Leo: we greatly valued working with you on the board, and know we will still be in contact with you as your DAI family.

DAI has been honoured to have you all working more closely with us, and have been humbled by your friendship and work for all DAI members, and for all people with dementia globally.

The commitment to DAI and vision of all of our out going board members has been truly commendable, and we will miss you all greatly as board members. Being a board members brings with it a commitment in time and energy, and a loyalty to our organisational mission and vision, but does not prevent members from being active in their own local or national dementia communities. I have no doubt many of you will continue to work tirelessly for the good of all people with dementia in your own communities.

Next week, we look forward to introducing you to our new Board members for 2017.

Sincere thanks from us all,

Kate Swaffer
Chair, CEO & Co-founder
on behalf of the DAI membership

Update 2 on the Social Forum by Mary Radnofsky

My Impressions of the United Nations, Human Rights Council, and Social Forum at the Palais des Nations in Geneva, 2016.

by Mary L. Radnofsky.

Thank you to Mary and Peter for representing Dementia Alliance International members, and all people with dementia so well.

screen-shot-2016-10-27-at-6-39-56-am“The United Nations – It’s one of the hallowed halls of peace we learned about in history books. But there I was, at the UN Human Rights Council for the Social Forum, October 3-5, 2016 with DAI Human Rights Advisor, Peter Mittler.

Most Americans think of the UN as being in New York, but it also has an important regional presence in Addis Ababa, Bangkok, Santiago, and Geneva, where we practiced our best Swiss French in buses and restaurants, and met with representatives of Member States and other Non-Governmental Organizations to discuss the Convention on The Rights of Persons With Disabilities (CRPD) – in every variant of English you can imagine.

To a baby-boomer like myself, the UN is a place of almost mythical significance, where post-World War II leaders came and sat, side by side, to listen and speak to one another, to try and understand social, economic, political, and other constructed problems that have bitterly divided humanity. That is why, under the inspiring leadership of Eleanor Roosevelt, the 1948 General Assembly of the UN adopted the Universal Declaration of Human Rights, which became the launch pad for later Conventions, including the CRPD.

Despite my childhood imaginings, I realize the UN is not magical, but rather a civilized place where persistent, hard-working people (whose names may never be known) have found common ground outside their geographic boundaries for the purpose of helping each other get along and find a better quality of life.

From around the world, people come to the UN speaking dozens of different languages. In this modern Tower of Babel, we all have a “shared disability.” It is, in fact, inherent in the very nature of humanity – linguistic and cultural divergence.

Such a disability could have forever prevented us from communicating ideas across borders. Yet through ongoing accommodation (e.g. the UN simultaneous translation, sign language, and closed-captioning system), we’ve learned to understand each other, with a little extra effort. But we also need some good will to interpret subtle concepts and cultural sensitivities in translation, because it’s not always easy to understand how someone else perceives the world.

In my brief time at the UN, though, I rediscovered in many people some of the fundamental truths that seem to easily cross national and linguistic boundaries, and define the human race. People proudly “admitted” that we can’t succeed alone, because we’re social creatures; we need each other. We need to feel useful and appreciated. We want to take care of one another because we are One. Yet we are also individuals, and we are defined, in part, through our unique relationships with each other. It was the best hope for humanity I’ve ever seen.

This year’s Social Forum included representatives of the 167 Member States officially having ratified the CRPD (not including the USA, unfortunately, but I’m going to work on that). Now that DAI is an Associate Member of the International Disability Alliance (IDA), we can advocate at the UN for including persons with dementia in any accommodations discussed for people with disabilities. This gives us an important, global platform from which to speak the truth about living with dementia, and how we want our governments to support us.

Peter and I both took the opportunity to ask questions and make comments at plenary and side sessions, to ensure that the voice of people with dementia was heard. From the number of positive responses to our interventions (most of which were recorded on the UN’s webcamTV, so see the links below), I think our voices were heard. Here’s the context of what we discussed.

Monday, October 3, 2016

As with most long-standing organizations, there were many formal, official speeches at this conference. For starters, we heard the President of the UN Human Rights Council, the UN High Commissioner for Human Rights, and Colin Allen, who is Chair of the International Disability Alliance (IDA). Mr. Allen communicated with sign language, and through his interpreter, explained that 80% of people with disabilities worldwide live in poverty, so he urged states to empower us all to eradicate it. While all speakers cited human rights as the basis, Mr. Allen specifically called for “Humanity, by the people, for the people, and with the people.”

It is an especially compelling argument these days, as we continue to witness acts of atrocious inhumanity not only in war zones, but in so-called “developed” countries, some of which still institutionalize people with disabilities in horrible conditions.

Session: Embracing Diversity & Awareness Raising

Professor Anna Lawson, Disability Studies Director in Leeds, England, spoke of the need to conduct research to provide evidence for reforming government policies. She acknowledges the importance of statistics, but more importantly, realizes the need for qualitative data that can reveal truths about environments that don’t lend themselves to easy classification. She also understands that qualitative methods can explain WHY problems exist, and reveal how marginalized people live in rural, remote locations, or behind institution walls. They don’t communicate in the way people usually do, in part because they’re children, elderly, or people with dementia. She seems to really understand QUALITY OF LIFE issues.

Catalina Devandas Aguilar, UN Special Rapporteur on the Rights of Persons with Disabilities, and herself a wheelchair user, explained that in communities and in the media, there are relatively few, and mostly mistaken images of persons with disabilities.

She said we need to make a paradigm shift; we are under-represented in movies, TV, and in research, for example. To bring about change, we must be included, and this debate must be taken beyond the disability community; it must be viewed on the human rights level of the global stage. She is also concerned with the rights of women, children, and the elderly, and recognizes that many people with dementia are often part of other able and non-disabled communities that already suffer discrimination for different reasons, so their human rights must be protected from all angles.

Peter spoke about the need for Member States to include people with dementia in the implementation of the CRPD. (See Peter’s comments on UN WebTV; click on the link and advance the Time slide indicator to 44:32. http://webtv.un.org/search/persons-with-disabilities-and-human-diversity-social-forum-2016/5152740834001.)

I spoke (ok, nervously at first, so forgive the trembling in my voice!) to discuss the importance of ethnographic research using evolving methodology, not just pre-determined checklists based on a medical model, to investigate the subculture of dementia that exists within every society. (See Mary’s comments on UN WebTV; click on the link and advance the Time slide indicator to 47:46 http://webtv.un.org/search/accessibility-and-non-discrimination-social-forum-2016/5152740831001.)

I will describe the next set of sessions in coming blogs, and include more photos. If you’d like more details, feel free to contact us at [email protected] or go to UN WebTV to watch the whole Social Forum yourself. It’s broken down into sessions, so you can start here, if you like. (http://webtv.un.org/search/opening-session-social-forum-2016/5152740796001)

The Best is Yet to Come!”

Mary

DAI Media Release: conference guidelines

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.”

You can download the full report here supporting-and-accommodating-people-with-dementia-at-conferences-and-other-events_2016, or email us for printed copies at [email protected]

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