This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.
The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.
Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.
As part of the project two resources were created:
The Many Voices of Dementia Advocacy, a short film with seven people living with dementia in different countries, talking about their experiences of self-advocating, their motivation and top tips.
Christine Thelker’s story
The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.
After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.
Hilary Doxford’s story
Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.
I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.
5 Top Tips from self-advocates
“Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia
“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada
“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA
“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.
“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.
For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:
The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.
With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.
By working together, the impact of self advocacy makes a much bigger difference.
Along with Professor Peter Mittler, Howard Gordon attended the recent Global Disability Summit in London, representing Kate Swaffer and DAI at the Civil Society Forum and Global Disability Summit in London on 23rd – 24thJuly 2018.
Whilst they DAI members wear many hats and advocate at many levels locally, nationally and internationally, Howard and Peter were attending the Summit as members of DAI. Amy Little from GADAA and the Alzheimer’s Society UK supported our members, also enabling DAI to have brochures and materials on the MarketStall she was hosting.
It was also pleasing to note that Nigel Hullah from the 3 Nations Dementia Working Group was also in attendance. Working collaboratively and together, we are so much stronger, especially wheh trying to represent 50 million people.
We have had a lot of activity since this Summit was held, which happened in Chicago, so the number of blogs in our draft folder is rapidly growing, and as we don’t want to overload you, we will only post weekly at this point.
For World Alzheimer’s Month, we intend to have a daily blog, so keep your eyes on your inbox from the 1st of September.
Howard wrote this summary for us:
In June, I learned of the Civil Society Forum and the Global Disability Summit that was to be held in London, organised by the International Disability Alliance and the UK and Kenyan Governments.
On further investigation, neither days appeared involve anyone living with Dementia as a speaker or delegate and I contacted the International Disability Alliance for clarification. After numerous emails from myself, Kate Swaffer and others we finally secured three places as delegates for the two days, one for the Alzheimer’s Society and two for DAI but sadly even though I tried up to the day before, no speaker.
DAI shared a stand with GADAA, the Stride Project and The Alzheimer’s Society and during the intervals we were there talking to delegates and making connections with DAI and the Stride Project.
The objectives of the summit were:
Raise global attention and focus on a neglected area
Bring in new voices and approaches to broaden engagement
Mobilise new global and national commitments on disability and
Showcase best practice and evidence from across the world
During the two days there were many opportunities to talk about rights, post-diagnosis support, services, funding and inclusion and although there was no opportunity to speak, I had taken copies of one of the DAI statements prepared by Kate Swaffer and some were placed on the stand and others I handed out as I spoke to delegates, at least DAI’s message was communicated.
One of the videos shown at the Summit
The main opportunities that may come from the two days are:
New DAI members in three African countries.
An invitation for DAI to be involved in the work of the UK Department for International Development and.
A meeting with Sir Philip Alston who is undertaking a UN special investigation into poverty and disabilities in the UK.
The Charter for Change, is full of promise but the devil is in the detail and whether Governments and organisations follow through with their commitments.
If the reaction of a member of the House of Lords to being told I have Dementia during our conversation is anything to go by, I have my doubts.
You can find a shortened version of the charter here:
The two days were different in that the forum was more about DPO’s and NGO’s whereas the Summit was not unexpectedly, more a political backslapping exercise.
My name is Howard Gordon from Sheffield in the UK, I am a person living with COPD, Alzheimer’s and Frontotemporal Dementia, here today as a member of, and representing Dementia Alliance International, and our Chair and CEO, Kate Swaffer. DAI is an organisation that represents the 50 million people currently living with dementia. I am one of them.
The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.
Dementia Alliance International is the global voice of people with dementia, and Alzheimer’s Disease International is the global voice on dementia. Both are lead organisations of the Global Alzheimer’s & Dementia Action Alliance and the impact of dementia as a disability, and on women are two areas of our focus.
On the occasion of this Global Disability Summit, we ask that the you take notice that many national health systems exclude the collection of data on their citizens over age 60, others only report data to age 49, and less data is collected on women and girls than on men.
There is a need to disaggregate data by disability, sex and age to understand the state of women with disabilities, especially in LMIC’s and remote communities, and informing policies to ensure their effective inclusion and the full realization of their human rights.
Together, we urge continued attention to neurocognitive disorders in national data sets and refer the commission to the work of the Global Dementia Observatory project of the WHO which is developing a knowledge and practice exchange for Member States in support of the Global Dementia action plan as adopted by the WHO in May 2017 and the PAHO regional dementia action plan.
We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.
Professor Peter Mittler stated in 2016; “Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This could be considered as an example of systemic discrimination against millions of people.”
As a member of Dementia Alliance International representing the 50 million people currently living with dementia, and those being diagnosed every 3 seconds, of which the majority are living in lower and middle-income countries, we ask to be included; which also means support to be includes, both in terms of our cognitive and or other disabilities, and funding to enable attendance. Dementia ensures for the vast majority of people, an enforced form of poverty, due to the discrimination and stigma still experienced.
Dementia Alliance International would also like to remind delegates here today that people living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability.
Everyone with dementia is a rights bearer under the UN Convention on the Rights of Persons with Disabilities (CRPD). All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.
Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.
It is also imperative the impact on women and girls of dementia is considered.
Women are disproportionately affected by dementia. More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.
Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons.
Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.
Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.
Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).
The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way. Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.
Gendered barriers to mobility and accessing justice lead to isolation and exclusion.
Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.
Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.
It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.
Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.
In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.
Finally, we ask governments, Member states, NGO’s, DPO’s and Civil Society to consider their responsibility to provide the financial support so often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with
“Nothing about us, without us”,
We therefore ask we leave no one behind, including people with dementia.
The media need to refrain from promoting the perception that we are all suffer, I do not suffer now but I know I will suffer later in my journey, but I do not want to be referred to as a sufferer. If I had Cancer, the media would refer to me as a fighter, yet I am a fighter, I fight every day to live within the reducing limits of my Dementia. Just because I have a terminal disability, does not mean I should not be treated to equally with other persons in my community.
Dementia is no longer a silent disease, we have rights under the UN conventions and we no longer wish to be subjected to the philosophy of BPSD leading to Chemical Restraint, Sectioning and Involuntary Care.
I do not consider myself a sufferer, I am a fighter, fighting my co-morbidities and fighting for our rights
DAI also looks forward to the day when we no longer need to define people by disability, and we are all treated equally.
We therefore ask we leave no one behind through the full implementation of the CRPD, including people with dementia.
Sources for the statement:
The Dementia Alliance International, the World Health Organisanisation, the United Nations, the CRPD, the Global Alzheimer’s and Dementia Action Alliance, and the Alzheimer’s Society UK.
Although there are seven days in a week, this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.
The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.
The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.
There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.
Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.
As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.
Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.
It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UKto discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.
We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.
Working together, we will improve the lives of people with dementia and our families.
It is not acceptable to continue to do anything, about us, without us.