4.1 Stigma and negative attitudes towards people with dementia still pervade: the importance of working together
Contributor: Kate Swaffer, Chair, CEO & Co-founder Dementia Alliance International
Dementia Alliance International (DAI), was launched in 2014 by eight people all diagnosed with dementia, from the USA, Canada and Australia, due to the need for international collaboration between people with dementia. The goal was to increase equal inclusion, change attitudes, and reduce stigma. DAI still seeks to represent members, now in 49 countries, and is an organisation whose goals are to provide advocacy and support of, and for people diagnosed with any type of dementia, and global campaigning for human rights and access to the Convention on the Rights of People with Disabilities (CRPD) at organisations including the United Nations and the World Health Organisation. All services for DAI members, including membership, are free.
Many members still report they receive few if any services or support elsewhere, as most support is for care partners.
There has been an increasing emergence of self-advocacy and Dementia Working (or Advisory) Groups (DWGs) globally. In spite of this, DAI founders felt when it was launched, and still believe that by collaborating globally we will eventually have a stronger impact on policy and services.
In 2000, Christine Bryden and a group of international self-advocates founded the first online self-advocacy group, Dementia Advocacy and Support Network International (DASNI), although membership was not limited to people with dementia. Then, in 2002, James McKillop and others founded the Scottish Dementia Working Group (SDWG), the first national group
dedicated to the voices of people with dementia, funded by the Scottish Government and supported by Alzheimer Scotland. It took many years for more groups like this to materialise, and there are now a growing number of DWGs that are local, regional or national in demographic.
The late Peter Ashley and a group of UK self-advocates were part of the first DWG in the UK, which existed for only a few years, and were instrumental in the development and implementation of the English National Dementia Strategy and the Prime Minister’s Challenge on Dementia. The Alzheimer’s Society again funds a Dementia Working Group, which came about after a meeting of DAI members and their CEO Jeremy Hughes, planned to initially discuss setting up a DAI Chapter in the UK. Subsequently the 3 Nations Dementia Working
Group (3NDWG) covering England, Wales and Northern Ireland was established in May 2017.
It is also important to note there is a continuing emergence of self-advocates in countries primarily due to the work of DAI and some of the DWGs, as well as ADI members who are now determined to empower and enable the inclusion of people with dementia in their own countries.
As an invited keynote speaker to the World Health Organisation (WHO) First Ministerial Conference on Dementia in March 2015, representing DAI, I made the following three demands:
The current known National, Regional or Local Dementia Working Groups include:
2000: Dementia Advocacy Support Network International (DASNI)
2002: Scottish Dementia Working Group (SDWG) 2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
2012: Highlands Dementia Working Group, Scotland (HDWG)
2012: European People with Dementia Working Group (EUPDWG)
2013: Dementia Australia Dementia Advisory Committee (DADAC)
2013: Irish Dementia Working Group (IDWG) 2014: Japan Dementia Working Group (JDWG) 2014: Southern (Kiama) Dementia Advisory Group, Australia (DAG’s)
2014: New Zealand Dementia Advisory Committee (NZDAC)
2015: Ontario Dementia Advisory Group, Canada (ODAG)
2016: Dementia Advocacy Awareness Team, Australia (DAAT)
2017: 3 Nations Dementia Working Group (3NDWG)
2019: Finnish Memory Working Group 2019: Flemish Working Group for People with Dementia
2019: Icelandic Working Group of People with Dementia (IWGPWD)
2019: Dementia Advisory Group in Chinese Taipei
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1 That we have human rights to a more ethical pathway of care
2 Being treated with the same human rights as everyone else, under the Disability Discrimination Acts and CRPD
3 That research does not only focus on a cure, but also on care
These three demands were included in the Final Call to Action, and since then, there has been a snowball effect, and people with dementia are demanding human rights all around the world. These three demands also inspired a long-time disability expert and advocate, and DAI member, Professor Peter Mittler to become actively involved in supporting DAI. Peter is an Emeritus Professor of Special Needs Education, University of Manchester, UK. He is a former President of Inclusion International, and was a UN Consultant on disability and education, although has since retired.
The CRPD is relevant to persons with dementia because it defines persons with disabilities by saying ‘persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’
Regardless of dementia falling within the definition of ‘disability’ within domestic and international law, people with dementia continue to face a number of challenges to have their rights respected. Often, many of the stakeholders and policy makers do not even see the need for those of us advocating for our rights to be included and the stigma and misperceptions about our potential to continue to contribute abound. This is partly due to the fact that symptoms of dementia are often
‘hidden’ or ‘invisible’ disabilities, until progression into old age.
Yet, in spite of the increasing numbers of DWGs and individuals with dementia speaking out, the misperceptions of people with dementia continue.
A persistent view is that we go straight to late stage dementia upon diagnosis, and should be unable to function well, if at all. It is certainly not yet seen as the norm for people with dementia to be living positively, which is likely due to ignorance, negative attitudes about people with dementia, as well as stigma, and the pervasive 20th Century views of dementia.
The task of speaking out against people causing us harm is complicated (and sometimes precluded) by the fact that many of them are well-intentioned, medical staff, service providers, advocacy organisation and close friends or family who are also often our care partners, but who may be ignorant, unwilling or unable to take the time to find out about our wishes and needs. Although we are grateful for the support of family and friends, we have sometimes been demonized for needing them.
We have also been demonized for not needing them, and for daring to live positively with dementia, and the misguided under-estimations of our potential continues to create oppressive and humiliating barriers to our full engagement in society.
That younger people are more likely to be self-advocates does not mean they should not have a voice, nor does it mean they represent older persons in the later stages of dementia. It simply means they are less likely to accept the stigma, are often diagnosed much earlier in the disease process, and are therefore more functional for a longer period of time than was once expected for people with dementia.
Now that the WHO Global action plan on the public health response to dementia 2017-2025 1 has been adopted, human rights must be included in all dementia services, as well as national dementia plans and strategies. This not only means receiving a timely diagnosis, it means receiving rehabilitation and disability support at the time of diagnosis.
Borrowed from the disability community, one of our mottos is also Nothing about us without us, and we are asking governments and civil society for human rights in dementia care which includes us at every level, and includes proactive cognitive and physical rehabilitation, access to a timely diagnosis, and risk reduction and prevention strategies, and equal access to proactive disAbility support immediately following a diagnosis.
Many people with dementia are now advocating for the phasing out all institutional care, the cessation of segregation in locked dementia units, and for all health care staff to be fully competent in dementia as well as disability. We want ‘Inclusive Communities’ that provide us with the same access as all others with disabilities, aligned to the CRPD. Hence, many people with dementia are also now questioning whether Dementia Friendly Communities and Dementia Villages are in fact, further segregating us, and unintentionally increasing the stigma and sense of ‘otherness’, rather than supporting us to be included in our community on an equal basis.
Changing attitudes towards dementia is a key element in reducing stigma, but even changing the attitudes of people in developed countries continues to be a challenge, and we believe will take a novel approach;
the time is now for people with dementia to work together, rather than under the influence of their national associations.
People with dementia look forward to the day when we no longer have to be defined by our disease or our disabilities, and we are all treated equally.
References
1 World Health Organization. 2017. Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organization.
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4.2 A young person makes a difference – but have things changed?
Contributor: Dr Walter Dawson, Atlantic Fellow for Equity in Brain Health at Global Brain Health Institute, University of California, San Francisco
My father received a diagnosis of Alzheimer’s disease when I was eight years old. At this young age, I was confronted with the need to be a care partner for my father – an unusual role for a child. I was also confronted with the many challenges of the dementia care system in the United States, particularly for families like mine living in rural communities of low socio-economic status.
At the time (in the early 1990s), my family lived in a very rural part of the State of Oregon, where very limited services and supports were available for someone like my father.
Watching my father slowly lose his ability to be a parent was incredibly difficult. His behavior was often hard for me, as a child, to understand. Why did he wander and become lost in familiar places? Why was he so anxious, especially at night when his anxiety made it impossible to sleep? Ultimately, my father, whose love of words and language were his defining characteristics, lost his ability to speak.
My mother and I made the difficult choice to place my father in a memory care community when we no longer felt we could safely care for him ourselves. The day I realized my father would never return home remains one of the hardest in my life.
While my father began to receive the care he needed, his care was prohibitively expensive. Within just a few months, we spent all of our savings, including anything that had been set aside for my future college education.
Thankfully, my father became eligible for Medicaid, the public program that provides health care and long-term services and supports to low-income individuals and families in the United States.
Even though I was only a child, I knew the loss of our financial stability so that my father could be safe and properly cared for was not right. I knew my father and other people like him deserved better. I also knew I wanted to do something to help.
One day, I noticed my mother writing a letter and I asked her what she was doing. She responded that she was writing to our local Member of Congress about how impossibly expensive my father’s care was. I thought that I could write a letter, too. I thought that if only people with power and influence heard our story then change would happen.
People did listen to our story. The unusualness of a child advocating for his father was a powerful image.
Camera crews from the major news networks soon arrived at our door (in the middle of rural Oregon). It was not long before I found myself traveling to Washington, DC to testify before the United States Senate about my family’s experiences caring for my father and the need to create a better system of care. I remain one of the
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youngest persons in US history to ever testify before the Congress on any issue, let alone Alzheimer’s disease and dementia.