Well what a week it’s been, intense but such a great experience. Making the most of the downtime to catch my breath and update my notes on my way to Adelaide after a 3am start.
I feel so privileged to have had the opportunity to participate in the international conference for Alzheimer Disease International and met with some wonderful people along the way, learning so many new things and revisiting some of my previous understanding. I couldn’t possibly record all of this but will try and articulate some of these key themes.
Highlights Day 1
The opening ceremony was performed with an aboriginal blessing to help delegates articulate their messages and understanding complemented by a performance of song, didgeridoo and dance led by Dr Richard Walley of the Nyoongar aboriginal people whose rich culture dates back to over 40,000 years.
The Nyoongar have a deep continued connection to their land and believe that everything in the landscape has meaning and purpose and that life is a web of inter-relationships where people and nature are partners through community connections. A life with meaning and purpose is essential for all citizens but particularly so for people living with dementia who can experience a fragile sense of self.
Elizabeth Gelfan- Stearns (co-producer of Still Alice) spoke about the main character of the film struggling to stay connected to who she was. The book ‘Still Alice’ was self-published by the author Lisa Genova after being rejected by over 30 publishers, it has since gone on to spend 40 weeks on the New York Times Best Seller list.
Dr Jacob Roy- Kuriakose (current Chair of Alzheimer Disease International) and Elisabeth Beattie (Professor of Aged and Dementia Care) spoke about the need to create/ reclaim a consumer- focused experience that is, of the person living with dementia. Indeed the most powerful messages delivered at the conference were spoken by people living successfully with dementia illustrating the significant growth in dementia advocacy.
Partners of 30 years, Edie Mayhew and Anne Tudor spoke about their ‘bitter-sweet journey’ after Edie was diagnosed with younger-onset Alzheimer dementia at the age of 59 years. Both are now committed to improving the understanding of Younger- Onset Dementia and for the development of services that meet their specific needs. Edie spoke about focusing on her existing capacities and not on what she has lost with both facing their own humbleness everyday.
Helga Rohra from Germany is a national and international campaigner for the rights of people living with dementia and Chair of the European Working Group of people living with dementia and was diagnosed with dementia with Lewy Body at the age of 54 years. She eloquently portrayed the importance of viewing dementia as a disability, shifting away from the bio-medical stance towards a ‘life’ model with its focus on enabling people living with dementia to stay within their own community for as long as is possible.
Helga and also Kate Swaffer at a later session spoke about how no one can show you/ know what it is truly like to live with dementia and the challenges faced than the people themselves- the consumers. Meaningful inclusion in the workplace is essential in order to support continued citizenship in society.
Graham Samuels (president of the Alzheimer’s Association of Australia- Victoria State) described how the experience of people living with dementia is very much down to how the community as a whole responds and key to this is the need to tackle stigma and social isolation through social engagement and action.
A workshop undertaken by the group Global Action on Personhood’ (GAP) led by Professor Dawn Brooker looked at bringing the humanity back to ‘good skilled care’ focusing on living well rather than thinking in terms of ‘managing’ care. GAP in dementia is an international network of expert practitioners, people living with dementia and family caregivers who have in-depth understanding of person-centred approaches to care worldwide.
The aim of GAP is to promote the fact that personhood matters in dementia and that unless action is taken then the psychological, emotional and social needs of people living with dementia are marginalised. A call to action was given to actively seek the standpoint of people living with dementia at every opportunity and to support people to remain connected to their family and communities.
By changing the master narrative to living (well), emphasis is then placed on agency, making meaningful choices and decisions with an acceptance of an element of risk. Moving towards this bold strengths-based narrative fosters the opportunity for new possibilities, aspirations and hope which can often be lost in the dominant bio-medical approach to healthcare which ignores the social world, often neglecting the person’s experience and reducing care into a task-centred process- ‘sitting inside all day with nothing to live for’.
Colin McDonnell spoke about how the care provided at Starrett Lodge Care Home in New South Wales successfully demonstrates how this is realised through the ‘Bucket List’ goals developed by residents, for residents helping to create positive social networks and inclusion. I was fortunate to be able to spend some time with Colin which helped develop a deeper understanding of the work taking place there to maintain each resident’s personhood.
With the first full day over I had plenty to reflect on and think how this might be applied to my local area.