ADI have a charter “I can live well with dementia’ – but still, no-one is telling us how to achieve it, or even that it is possible. For this International Charter to have any traction, people with dementia believe everyone, include their work.
I’m also unsure this phrase is helpful, as living beyond dementia seems more achievable, and more palatable, as many living with dementia do not feel like they are living well with it, and also, many do not even feel they are living better with dementia, i.e., better than the public perceptions of what that means, which is usually end stage.
Dementia is indeed a public health priority, and I was honoured to have been invited as a plenary speaker to present at the first WHO Ministerial Conference on Global Action Against Dementia in Geneva earlier this year.
Ministers from around the world, as well as experts from the research, clinical and NGO communities, were invited to come together in Geneva for the first time to discuss the global problems posed by dementia. I believe it was the first time a person with dementia has been invited to such an event, breaking the usual ‘about us without us’ mold.
The conference was supported by the Department of Health of the United Kingdom of Great Britain and Northern Ireland, and the Organization for Economic Cooperation and Development (OECD).
When I spoke at this event in Geneva in March earlier this year, I had 8 minutes as a key note speaker to talk about what is important to people with dementia in the global dementia sector.
The three of topics of significant importance to people with dementia are;
- That we have human right to a more ethical pathway of care
- Treated with the same human rights as everyone else, using the current Disability Discrimination Acts and the United Nations Convention on the Rights of Persons with Disabilities
- And finally, that research does not only focus on a cure, but on our pre and post-diagnostic care, and on pre and post vention including rehabilitation.
I am proud these three points were included in the Final Call to Action.
When I was diagnosed with dementia at the age of 49, I was told to get my end of life affairs in order, to give up work, to get acquainted with aged care, and to go home for the time I had left. I call this Prescribed Disengagement, but thankfully chose to ignore it and reinvest in life. With support from the disability sector, and self-prescribed authentic brain injury rehabilitation and other non-pharmacological and positive psychosocial interventions for dementia, including advocacy, I believe I have slowed the progression of functional decline. My neurologist now also believes this.
If I had been treated after a stroke, there are ethical and rehabilitative national and international guidelines; this needs to happen for dementia and although there is little research to support it yet, many of the risk reduction interventions need to be translated into practice in our post diagnostic care plans. They make good sense, even if there is little evidence yet.
It may not be a cure, but it will ensure we have a better quality of life, and I believe, research will ultimately emerge to prove it can slow the progression of dementia. If it only keeps people with dementia out of residential care for 12 months longer than we experience now, it will save governments billions of dollars. Many established mechanisms for development and assessment of clinical interventions have not been adapted to population ageing or to dementia. The time for this is now.
New, sustainable models of care that balance the role of family and government, and that overcome gender, living alone, culture and sexual preference inequities, are urgently needed. Advances in information and communications technology, assistive devices, medical diagnostics, and interventions also offer much promise and it is promising that the World Dementia Council has this as part of their focus.
I continue to work hard on re-empowering other people with dementia to reclaim their pre diagnosis lives, and on policy and research for dementia, on dementia friendly community initiatives in Australia and globally, in particular including people with dementia in this work and in these campaigns, ,and have a particular focus on a more ethical post diagnostic pathway or model of care.
Yes I want a cure, but more importantly, I want a better quality of life for the almost 47 million people currently diagnosed with dementia, where best practice is still the not the norm, but rather the exception. In rich western countries, this I believe is especially unacceptable.
People with dementia also need to be at the heart of the conversations about them. We may not be able to march in front of our respective Parliament houses, but we are marching online in large numbers for inclusion, research, better care, and against discrimination and stigma. This is our human right.
We do not yet know whether people are living longer and healthier lives or are simply experiencing extended periods of morbidity.
Alzheimer’s societies and associations around the world, and people with dementia need to access the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia. ADI in their 2012 report quite rightly highlighted this out, but nothing really happened to support it, although now, DAI and ADI are actively working towards this.
It is our human right not only to person centred care, and ethical care plans, which currently we are not often offered until we need palliation – if then, in some countries – but to a system and world that stops discriminating against and excluding us. The current system of care is unpalatable and unethical, and we deserve much more.
The commitment to human rights of PWD and to a Nothing About Us Approach at the Alzheimer-Europe conference has been greatly strengthened by the presentations by many people with dementia at the recent Alzheimer’s Europe conference in Slovenia. This also was the case at the ADI conference in Perth in April.
People with dementia are also on the global stage, advocating for our rights to be included under the United nations Convention of the Rights of Persons with Disabilities (CRPD), being actively spearheaded by a friend and colleague, and DAI member, Professor Peter Mittler from Manchester in the UK. Thank you Peter, for providing us with your expertise, wisdom and passion, and together, we will all ensure our rightful place to be recognised under this convention.
The CRPD campaign for people with dementia has gathered a lot of momentum and ADI is now in touch with the senior UN leaders who are also very supportive. We have been slow in tapping into the disability sector for people with dementia, all whom are living with disabilities and have a legal right to this legislation.
The EU has already embarked on laying the foundations for an EU-wide 5 year dementia strategy, following the announcement that the President of Luxembourg has made this the priority for his EU Presidency from January 2016.
Alzheimer-Europe has been working closely with EU and some decisions have already been made. For example, Scotland will lead it and specific roles and priorities have already been allocated to about 7 EU countries.
It will reflect the WHO Call for Action at the March meeting and this reflects Marc Wortmann’s resolution on prioritising people with dementia and those closest to us.
It’s obvious that the UN Asia-Pacific region should develop its own strategy; they were major contributors to the CRPD. It makes sense because of the demographics of ageing in across Asia and because Japan has already done a great deal, including financial support to other countries. WHO is doing a lot on dementia and is active in the region. Australia needs to be a part of this.
In closing, and following a six-week trip to the UK and Europe in June and July attending and speaking at dementia events, these are a few things I feel need urgent attention in the dementia sector are;
- The balance of research of cure vs care
- Common sense in post-diagnostic support, and a lack of ethical care plans that include rehabilitation and support for disabilities
- Knowledge translation
- Inclusion of people with dementia – e.g. the ADI Stigma report in 2012, promoted around the world as the experience of people with dementia and stigma, included only 6% of people with dementia in a cohort of almost 3000 people.
Perhaps this last point is something that Dementia Alliance International can help researchers with, as this organisation, launched on 1 January 2014 and now the peak body for people with dementia, as through this role, I have the opportunity to promote research opportunities to people with dementia, and I know there are a few gate keepers who actively keep researchers away from us.
Note: This blog is based on a presentation I gave at a Research Forum in Sydney during Dementia Awareness Month.
Author: Kate Swaffer © 2015