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.

Consumer- Focused

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.

Personhood 

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.

‘Live in the moment- it’s all I can do’

Taken from the film ‘Still Alice’ this resonates with me and key to my understanding as to what mindfulness is about:

* Present- be where you are

* Acceptance- tolerance towards others but also ourselves

* Kindness- Compassion and empathy

Moved to the city for the ADI Conference today not before walking to Burns beach- a 40 minute walk from where I’ve been staying over the last few days. The weather has been beautiful and hot but with a cooling breeze to make it bearable. Got speaking to a fellow nurse at the beach cafe who’d worked in Inverness and stayed not many miles away from me- small world.

Went along to the screening of ‘Still Alice’ which was followed by a panel discussion which included:

Rhonda Parker- CEO Alzheimer’s Australia West Australia ( and chair)

Glenda and Bronte Parkin- Glenda is living with a diagnosis of younger- onset Alzheimers Disease and Bronte is her husband and care partner

Marc Wortman- Executive Director of Alzheimer’s Disease International

Elizabeth Gelfand Searns- Co- Producer of Still Alice

Dr Yves Joanette- Neuroscientist from Canada

Rhonda asked all panel members the same question:

What is the best thing about the movie?

Responses included- bringing Alzheimers Disease to life, helps to increase conversations and face stigma. Challenges public policy and communities to understand and own it. That Dementia knows no boundaries and explores the impact on the person living with dementia- diagnosis, relationships and work.

Dr Yves Joanette spoke about how the ‘Still’ in still Alice is of uttermost importance- asking who are we really? Alice is ‘still’ Alice as is Glenda is ‘still’ Glenda and that love, emotions and relationships are still there and to see the person behind the condition.

If you haven’t yet seen ‘Still Alice’ then I encourage you to go.

Helga Rohra from Germany who is the chair of the European Working Group of people with Dementia posed the question as to ‘what dementia looks like’ after being told on many occasions, you can’t possibly have dementia (due to continued high- functioning) and that the faces of dementia are different. Kate Swaffer also speaks about this in her blog.

Looking forward to the formal opening of the ADI conference tomorrow.

Take me to the River

Hosing down boats after a good workout.
Hosing down boats after a good workout.
Evening paddle.
Evening paddle.

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Launch site - Freshwater Bay at Peppermint Grove
Launch site – Freshwater Bay at Peppermint Grove

One more day to go before the International conference of the ADI opens and so excited! The programme looks amazing and so many people I want to meet up with and sessions to link in with. Tidying up my presentation for Friday and looking forward to this opportunity although also a little apprehensive.

Managed to fit in some kayaking on the vast Swan river with an expert guide Dave Stevens  from Western Paddle Sports, culminating in a wonderful early evening paddle along to East Fremantle taking in the wonderful sights including eastern osprey, little pied cormorants and pelicans. Hopefully will also get the opportunity to return for the next 2 Tuesday evenings before flying back home. Looking forward to applying my newly acquired skills and confidence to get out in my kayak round the Black Isle when I get back.

Redback spider spotted in the Mail box today but tucked itself away in a hidey hole before I got the chance to see it- remind myself not to volunteer to collect post!

Welcome to the Beautiful South!

Firstly apologies for the delay in posting this blog but I seem to have hit the ground running which has not been helped by the inevitable jet lag which is further amplified by travelling west to east. It’s generally advised to allow one day per hour of time difference to fully recover from jet lag (UK to Perth 8 hours) but will have to make do with keeping hydrated (water of course), plenty of fresh air, meeting kindred spirits and gentle exercise -all of which I’ve managed to achieve so far.

Was privileged to meet up with Dr Al Power for tea, cake and a stroll around Perth city centre. Dr Power is a Geriatrician, Certified Eden Alternative Educator and Board Director and international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. He is also one of the key speakers at the International Conference of Alzheimer’s Disease International taking place from the 15th- 18th April in Perth. He spoke about the importance of supporting ways to enhance a person’s well-being – connectedness being one of 7 domains he identifies in this model. Enhancing well-being supports an approach which focuses on the person’s strengths and assets, moving away from the more familiar negative, deficit-based, bio-medicalised model.

I look forward to hearing more about the practical application of this model of well-being at Dr Al Power’s plenary session at the conference on Thursday. Can also thoroughly recommend his book ‘Dementia Beyond Disease’- Enhancing Well-being. Hopefully will also get the opportunity to meet up again on my second leg of this fellowship when I travel to the USA.

The weather has been very warm with just a few showers (thankfully downpours have mainly been overnight) but this has not got in the way of being able to take gentle walks through the beautiful nature here, providing meaningful opportunities for reflection on the intention of my fellowship.

Thanks for the photos Al.

Tea at Dome Westralia

Sleepless in Dubai

Somehow doesn’t quite have the same ring as Seattle! Well the good news is that I’ve arrived safely in Dubai, sadly though due to a delay in leaving the UK I have missed the connecting flight to Perth. I now have a 12 hour wait until the next flight out but the sun is shining although with my luggage in transit along with sunglasses and lotion, I will be keeping in the shade!

I’m sitting at a railway station, got a ticket for my destination ……….

O.k, well Inverness airport at least waiting my flight to Birmingham.

Welcome to my first attempts at blogging, lots to learn I’m sure so please be patient. I am just about to embark on a trip of a lifetime supported by a travel fellowship from the Winston Churchill Memorial Trust (WCMT). I work as the Alzheimer Scotland Dementia Nurse Consultant  in the Scottish Highlands and Islands (NHS Highland) and I am passionate about improving the experience for people living with dementia. I was lucky enough to have been awarded a travel fellowship to support me to visit Australia and the USA to explore ways to develop creative connections between people living with dementia, staff and communities.

I will be writing a formal report about my findings towards the end of the year once I return from the USA but wanted to document my travel and reflections as I went along. The WCMT are also supportive for Fellows to immerse themselves in the whole travel experience so will be blogging about my adventures along the way!

Thanks again to the Winston Churchill Memorial Trust and to NHS Highland, my line-manager Heidi May, my family Neil, Finn and Woody who without all their support this would not have been possible.

I would also like to dedicate this blog to my dear father-in-law Keith Mantle who died recently at the age of 89 years and had lived well with dementia up until the last few months of his life.