Advocating dementia-friendly communities

In the lead up to the 6th Annual National Dementia Congress 2015, we had the chance to speak to Kate Swaffer, Consultant, Alzheimer’s Australia and Consumer Advocate, about creating and supporting dementia-friendly communities to empower people living with dementia.

Kate is living well with a diagnosis of younger onset dementia and has a focus on changing the post diagnostic support from that of Prescribed Disengagement™, a term she has developed and published on, to one of engagement, and on stigma and language. Kate also writes a daily blog about the critical issues impacting a person living with a diagnosis of dementia and their loved ones.

As a consultant for Alzheimer’s Australia and a consumer advocate, can you tell us a bit more about your involvement and what motivated you to generate awareness for people living with dementia?
Kate: When I was first diagnosed with dementia and started attending conferences and other events to learn more about dementia, I was constantly being told by people without dementia how it was for me, what I was feeling and what was best for me. However, no one ever asked me. Then the opportunities to become a consumer advocate with Alzheimer’s Australia national office came up and I decided the time was right for me to take it on as a volunteer. I was not working in any paid capacity anyway!

My role as a consultant transpired through advocating that it is not appropriate to decide what dementia-friendly is, without involving people with dementia in the meetings and work, in the same way able-bodied people would not decide what was disabled-friendly for people living with disabilities. As a paid consultant and a volunteer consumer advocate, my personal goal is to not only advocate for the issues facing people with dementia and empower others living with it to speak up for themselves, but it would seem that I have also become an activist – as in my opinion, things are not changing quickly enough and many are still not listening to us nor including us.

How important is community engagement and awareness of dementia?
Kate: The objective of a dementia-friendly community to engage people with dementia in everyday life is of course a very worthy one. Like cancer, dementia is not a single entity and it can be expected to affect functions like memory, language or understanding of space. As a person living with dementia, a dementia-friendly community means my employer would have assisted me to stay employed for as long as possible with the appropriate support for my disabilities and I would not have been given Prescribed Disengagement™ from my pre-diagnosis life. Prescribed Disengagement™ is the “prescription” of “disengagement” from a person’s pre-dementia diagnosis life given by most healthcare professionals at the point of diagnosis or soon after.

Community engagement and awareness is important in the context of people with dementia being able to live well, as without that, we will not get the required support to live with the varying and changing disabilities of dementia. Once people, including the healthcare sector and researchers, see the symptoms as disabilities – not the disease or dementia itself – then they will be more likely to engage in helping us to live well, for as long as possible.

What positive impacts do ‘dementia-friendly communities’ have on people living with dementia and their families/carers? Can you provide any examples?
Kate: A diagnosis of dementia exacerbates issues such as social inequality, stigma, isolation, loss of identity and discrimination. It also has the potential to set the person with dementia up to become a victim or ‘sufferer’, and their family caregivers to become martyrs. It has significant negative emotional, financial, social cost and impact on the person with dementia, their families, and society. It disempowers, devalues, demeans and lowers self-esteem and very negatively impacts wellbeing and quality of life.

Engaging people with dementia in dementia-friendly projects and providing dementia-friendly communities means people with dementia would be empowered to join the Fight Dementia Campaign, to fight for their own rights to live well, with the support of healthcare professionals and the community. They enable us to live in the community, with full access and the appropriate support, and without discrimination or stigma, in the same way as any other person with a disability.

In your personal experience, what are some of the most effective strategies to assist in living well with dementia?
Kate: Treating the symptoms of dementia in the early stages, as the gateway to supporting disabilities, not managing them in ways that restrict and hinder, and managing emotional changes with counseling and positive engagement, rather than treating the symptoms with drugs, have become paramount to my wellbeing and perceived longevity. If it is only end stage and death that is focused on, then we will have little chance of being supported to live well.

Can you briefly explain what you’ll be presenting at the upcoming Dementia Congress in February?

Kate: My presentation titled Younger Onset Dementia: Reclaiming my Life will discuss Prescribed Disengagement™, what it is and what the cost is to individuals with dementia, their families and the community, as well as reviewing two contrasting models of care. Finally, I will talk about the missing pieces of the puzzle, not only for people with younger onset dementia but in the global dementia-friendly work.

In addition, can you offer a brief explanation of the pre-conference workshop (titled “Diagnosed with Dementia: What Next?”) you are kindly facilitating with your friend and colleague, Maxine Thompson?

Kate: This workshop is aimed at healthcare professionals including medical practitioners as well as family carers and service providers including people working for dementia advocacy or carer organisations, regarding the next steps for their patients or clients following the diagnosis of dementia. It will include two case studies, and is focused towards post diagnostic support for people with younger onset, but the models of care being reviewed are applicable to anyone in the early to mid stages of dementia. The side product of the push for earlier diagnosis will mean there will be a greater number of people diagnosed earlier in the disease process and those who want support to live in their own homes as residential aged care is never a first choice. Two models of care will be discussed, with the focus on changing the post diagnostic experience from Prescribed Disengagement™ to one of engagement and support for disabilities. This workshop will allow you to work with your clients and patients to improve outcomes, wellbeing and quality of life.

Are there any presentations from the 2015 National Dementia Congress that you are particularly looking forward to and why?
Kate: I’m keen to hear the Behaviour Centred Care versus Person Centred Care: The Challenge of BPSD Management presentation, as I do not believe the sector is providing good care or person centred care as the norm, but rather as the exception, and believe the term BPSD and guidelines surrounding it has a lot to do with that, a project I will be working on, probably at the University of Wollongong for the next year or couple of years.

Hear more from Kate at the upcoming 6th Annual National Dementia Congress 2015 where she will be presenting on “Younger Onset Dementia: Reclaiming my Life”. Kate will also be co-facilitating a pre-conference workshop with Maxine Thompson on “Diagnosed with Dementia: What Next”.