Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.
Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:
Implementing the Global Dementia Action Plan into policy
“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.
I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”
Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.
In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
We are not provided with rehabilitation or other re-abling post diagnostic support
We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
These points are all relevant to national dementia plans
By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:
Significantly improve the quality of life of persons with dementia and our families and care partners
Reduce the economic cost of dementia to individuals, families and governments
Ensure dementia inclusive and accessible communities
The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.
The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.
The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.
Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of community–based rehabilitation is to help people with disAbilities, by:
Establishing community–basedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
This is important in the context of the GDAP and in the development of national policies.
For our communities to be supporting people with dementia, based on human rights, a new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.
We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.
Focus on well being/QoL
Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
disAbility assessment and support , immediately post diagnosis
Grief and Loss counselling, not just information about BPSD.
Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
Support to maintain pre dx lifestyle
Support to continue working if YOD (and is a personal choice)
Support to continue usual activities, socialising, sport, recreation, community engagement, etc
Inclusive and accessible communities (not just dementia friendly)
It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).
DAI’s Next Steps:
Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
Supporting Alzheimer’s societies in developing HR policies & plans
Continuing to submit parallel reports to the UN and the WHO
Promote human rights approach to dementia at all conferences and events
Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
Working with disability organisations, e.g. IDA and IDDC
DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:
Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.
Finally, I have some questions for countries and civil society to consider:
To what extent are your dementia policies based on human rights?
How closely do you work with other disAbility organisations in your country or region?
Do you know how they have used CRPD?
Will you join them to ensure that people with dementia are included?
How are we going to measure 75% of countries have implemented the GDAP by 2025?
Chair, CEO & Co-founder
Dementia Aliance International
Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.
World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.
For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.
As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar. Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.
Whilst DAI has held a number of workshops as part of the Alzheimer’s Disease International or Regional conferences, including in Melbourne, Budapest, New Zealand and Japan, we have not yet held our own DAI conference, seminar or event where people can attend in person.
We will also hold this as an online webinar at the same time, so that others can join us, and this event will replace our usual “A Meeting Of The Minds” Webinar in September. It will therefore be in two times zones, on September 19 & 20, 2017, but is still only one event.
Let’s hope this becomes and annual event, working together with local or national Dementia Advisory or Working Groups or Teams of people with dementia and their families, towards ensuring a better world and a stronger voice for all people impacted by dementia.
We apologise to those who live in a time zone where for you to attend it will be extremely inconvenient, but we do hope to record the sessions so they will be avialable to watch afterwards on our YouTube channel.
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.
We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the brilliant local, regional, national or worldwide advocacy some members are involved in.
Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.
There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.
That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5 years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.
People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.
And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.
We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.
So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.
Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia. Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.
There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!
Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year. You can view Chris’s documentary here…
Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.
It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!
Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.
In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.
It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!
In March, we hosted a Webinar with Teepa Snow, which was informative, and very well attended. This week, as part of our Dementia Awareness Week UK #DAW2016 activities, we are adding the recording of it here. Our gratitude to Teepa for her time ad wisdom, and deep knowledge about how to support people with dementia.
Together, we earn from each other, and together respecting and listening to each others unique view points, we can all make a difference.
Hi everybody I hope you are all enjoying this conference. I feel privileged to be here and will share it with my Dementia friends who could not be here.
My name is Agnes. I have been living with Dementia of the Alzheimer type for ten years now.
As you can see from this slide, dementia is more than memory. In the UK, it’s classified as a mental health condition with physical and social implications.
DAI note: In Australia and other countries, it is not classified as a mental health condition or illness, but as a group of physical conditions that cause cognitive impairment or dementia
Yet why is it at our dementia reviews? Doctors and nurses concentrated on and test our memory. Yet for us living with all types of dementia, we seem to receive no guidance on how to cope with sensory and other stuff.
As For me, nobody asked about my sensory challenges, and when I brought it up no assistance was given, either practical or emotional.
I found my help and understanding at the ADI conference 2011 in Toronto.
Yes 5 years ago!
I was given the proper words to use for my Dementia and sensory challenges, so I could ask for help in Scotland at our annual Dementia review can you include:
Sensory and give it equal attention
Then if we have sensory challenges, sign post us on to services like opthopist for visual problems and audiology for hyperaccusis, and Neurology for other issues.
PLEASE ask your questions in a way
In 2014 at the European conference in Glasgow, Life changes trust funded over 35 PWD to attend. It’s good to help us financially to attend these conferences.
Why? So that we can talk to each another and share our experiences and take it back to our own countries and Alzheimer associations.
That is when this booklet was decided upon.
We realised we came to conferences and that little was being presented about sensory challenges and Dementia. Yet behind the scenes we the PWD, are sharing stories and helping one another to try and come to terms with our scary daily sensory challenges.
This booklet is the result of interviewing 24 PWD all ages and different types of Dementia. We don’t profess to have the answers. We tell our lived experience then relate what we do and we hope this booklet will encourage you to think how we can assist with these issues.
Whilst Donna was transcribing these interviews common themes emerged and she spoke of these as the four A’ s:
September 2015 in Slovenia
I spoke at the European working group session and gave a preview of this booklet. (At the time no DVD was available). Here is some feedback and quotes on the slide.
Slide7 (people from York)
This booklet would not have happened without collaboration from people with Dementia, who gave of their time? And shared their lived experience.
This photo was taken at a DEEP (Dementia Engagement and Empowerment Project).
Event in London, and you can see how happy we all were to see the booklet in print, and hear how well it has been received.
We wish the professionals would listen.
As Elaine said it’s a relief to meet others with the same symptoms I no longer feel alone.
Another Person said, Dementia is more than Memory.
Feedback from the booklet has been positive. We have been asked to give permission to have it translated into other languages.
Like Welsh and Italian, and an architect Birgit Dietz we meet in Slovenia has taken a particular interest in how to use this information in her field. People with dementia and their CARERS have already taken it to GPs and opticians to explain their symptoms.
People with dementia feel empowered and no longer alone when they read this booklet and recognise their own experiences being described by others. It’s good to know others have it too.
After 7 years of my sensory journey I have just been told that I am officially going on the partially sighted register a few months ago. My eye consultant said after extensive and repeated tests lasting months, and consulting with your Dementia consultant:
“This is all we can do for you (put prisms in your glasses). It is not an eye issue, your eyes are healthy. It is a brain/dementia issue”
Last month after a requested visit to see an audiologist, I was officially diagnosed with Hyperaccusis. The audiologist said I was nearly off her chart and she was surprised I could cope with the Sensory overload when I leave the house.
Slide 1I Think I will leave the last words to Ross, a person living with Dementia for over 16 years now. He said:
“A lot of people have been interviewed for this booklet. We can’t all be wrong, so please take a copy. Look at it, listen to it and take something out of it.”
This booklet can be downloaded for free on the life changes trust website, and there is also links to the DVD online as well.
The legacy of this project is the increased awareness in people with dementia, their carers and friends. The professonials are also spreading the word.
We would also like to remind you we have two special events this month as well.
On January 13/14, we are hosting an online zoom room event, to celebrate the 2nd birthday party of DAI. DAI Members will receive the invitation in your inboxes very soon.
The next DAI A Meeting of The Minds Webinar, Living with dementia: new perspectives, is with Dr Al Power, whom many of you have already registered for. Please register now if you haven’t already, as we already have a large number of registered attendees. You can register here…
Reminder to our supporters registering for our monthly DAI A Meeting of The Minds educational Webinars:
We rely on an honour system for our online registration process, and if you are not a member of DAI, and therefore a person with a medically confirmed diagnosis, and you are not a non professional carer/care partner who is not in paid employment, we do charge a small fee of $35.00 for you to register. This is our only form of income, and helps us to help people support themselves, and to live more independently. Thank you for your understanding.
Welcoming new members and supporters at all times
People with a medically confirmed diagnosis of a dementia can join for free, and attendance at all events and for services, is also free.
Once you become a member, you can get involved in many ways, including joining an weekly online support group, or our private Facebook groups, as well as our events and online cafes, all for no fee.
Anyone else can subscribe to our e-newsletters and weekly blogs, also for free.
It is delightful to be able to share our members stories with you, and this week, we have a lady from Mexico who has written a beautiful story of her experience with both dementia, life and becoming a member of Dementia Alliance International.
Our sincere thanks to you Wendy, for allowing us to share your life with our readers here.
DAI: “My Experience”
Written by DAI member, Wendy Sanchez, November 22, 2015
Three years ago, at age 68, I was in a deep depression. I’d lost – in rapid succession – my home, my job, my driver’s license, my dreams. I reached deep inside myself for an old dream; that of walking the Camino de Santiago across the entire country of Spain. It was that or give up.
I completed that pilgrimage, wrote and published a book shortly thereafter, and then took a nosedive, mentally and physically. My decline and the sudden arrival of dementia symptoms in my life were alarming. Well meaning friends and family denied the obvious. I was completely confused until I read the book “Still Alice”.
It was right out of my journal; and I quickly sought diagnosis, going first to my psychiatrist who had treated me for years for depression and a history of chemical dependence. She also had my test results from the past few years which indicated a consistent decline. When I told her of my recent experiences with “Alice”- like FTL symptoms, she agreed with my observations – with tears in her eyes – and started me on Aricept that very day.
We had previously discussed that I presented with multiple markers for developing dementia: heredity, history of drug and alcohol abuse, decades of treatment for clinical depression, frontal lobe trauma from car accidents and spousal abuse, and YEARS of acute sleep apnea undiagnosed and untreated.
I’d almost expected the diagnosis, yet the shock was enormous nevertheless.
I had no transportation to get back and forth to doctors for much testing and I wasn’t in need of numbers to validate what I’d felt for years. One psychologist visit and one brain scan were enough to document “mild to moderate cognitive decline”.
As many of us report, it initially felt like a death sentence to me; a dose of cruel reality that screamed “no hope” like a neon lamp. Being single and not of independent means, I began to outline my suicide plans, like many before me had. As an RN for decades, I knew there would come the inevitable ‘point of no return’ that heralded the end of my independence.
So the months since my diagnosis in March 2015 have rolled onward. I returned to
Rural Mexico where I’d been living for 1.5 years with the intention to “take a lover and go snorkeling”. Hardly a wise plan because I was falling frequently, suffering anxiety attacks, challenged with word finding, speaking, understanding, and most executive functions. I was also getting lost or disoriented, couldn’t find any information about what was happening to me, and scared to death.
At that point, I vaguely remembered a reference in “Still Alice” about DAI and ? (the other organization). I found their websites, clicked on members’ writings, found a trail of personalized information, and began to follow the leads: first to make contact with an individual (Morris) who lived close by in Northern California. He’d been a published sociologist and professor prior to diagnosis and guided me toward publications and writings by others’ as well, one of whom I have later come to know on line (Jeanne). Someone else (Jay) contacted me on Morris’ suggestion just as I was searching for a support group.
I felt like Dora the Explorer on a journey of Hope.
Quickly I realized there were tools with which I could design a rehab program for myself. Once I began to follow it, positive results soon followed. Although incredulous, I actively follow that structure now. The “perfect” days that fall with grace from the sky are seductive in that I think the doctors made a mistake. As many of my peers confirm, the overall experience we share is often one of a roller coaster.
Finding DAI has made a huge difference in my life: I have been invited into and participate in a weekly support group online, co-ordinated by Mick, who skillfully
Facilitates meetings globally. The dedication and commitment of Mick, Kate and others in DAI make advocacy for international dementia rights a tangible vision.
It’s been an inspiration for me to see peers continue to “fight the good fight”, regardless of the toll it takes on their energy reserves. My own personal journey is detailed in a Blog I began in order to advocate and educate friends, family, acquaintances (and their contacts) about the face of dementia; to dispel myths and fears about diagnosis and treatment; to describe our challenges and suggest helpful methods of communication. Being encouraged to continue writing by DAI members and blog readers reinforces that I can still write and hopefully serve others via that medium.
And, in that process, my words to friends and family have morphed from defensive – explaining what’s “wrong” with me – to creative advocacy as I remember that I am still a powerful writer with a voice to be heard.
The Blog in and of itself has been my own personal therapy yet it has impacted quite a few folks already. I only need to review a few months to see that Hope lives, that Life continues, and – most of all – that I am NOT alone in this.
DAI brought humor back into my life at a time when I was sure it had abandoned me. What can be more soul healing than shared laughter?
Author: A grateful member of DAI, Wendy Sanchez, Yelapa, Jalisco, Mexico
Copyright: Wendy Sanchez, 2015
Editor: Kate Swaffer
The last three days I have been representing Dementia Alliance International at an ADI Regional meeting and Philippine Neurology Association conference in Manila. In fact, getting here at all was a major challenge, as due to the terrorist attacks in Paris, and Mr Obama and other heads of countries being here for APEC, security was really increased, and the airport cancelled for all flights for over 12 hours, of course, on the day I was to depart from home. On top of that, there have been bushfires and a heatwave back home, with catastrophic bush fire warnings, and we have been unable to go home earlier than we initially booked!
Anyway, the hospitality in Manila has been exceptional, and the friendliness and hospitality of the people here truly spectacular. The dinner last night was a highlight, with all regions of the country putting on a performance, including the neurologists and other medical doctors. It was extremely competitive, and very entertaining.
The conference itself was perhaps more for neurologists, as it was hosted by the Philippine Neurology Association, and many of the speakers presented the scientific data and pharmaceutical side to dementia, but it was an important step for DAI to be represented here, and especially to encourage them to include people with dementia in their programs in the future.
After the Dementia Friendly Communities session today, which I presented at along with five other presenters from the region, including Japan who started this movement about 20 years ago, it was enlightening, and we all learnt a lot from each other.
The thing I am most pleased about, is that DAI will be able to support people with dementia in the countries represented here, such as India, Indonesia, Hong Kong and Singapore, and though this channel of support for each others work, we can give a stronger more global voice to people with dementia. We have had our first support group, for people with dementia in Nigeria, and I foresee there will be many more to follow all over the world. Mick Carmody, our support group facilitator and host and also a fabulous chap and poet, will certainly have a lot to get him our of bed every single morning!!
There has been a lot to take in, and it has been very tiring, but I will write up a full report especially on the DFC session today, for another blog.