From Diagnosis to Delegate - SDWG's Stuart Dougall reflects on Alzheimer Europe's 2023 Helsinki Conference

Since being diagnosed with young onset dementia aged 58 in January 2022 Stuart Dougall has joined the Scottish Dementia Working Group, participated in dementia research, and been the face of Alzheimer Scotland's 2023 Dementia Awareness Week. Here he reflects on a new part of his dementia journey, representing the SDWG at Alzheimer Europe's 33rd Conference in Helsinki in October 2023.

When I was invited to represent Alzheimer Scotland on behalf of the SDWG at the 2023 Alzheimer Europe conference it was a real honour. To be honest, I was apprehensive as it is such a prestigious event, I didn't want to let  anyone down and I didn't really know what to expect.

Then, when I think of the journey I am on, what a journey it has been. Diagnosed with early onset dementia - Alzheimer's sub type at the age of 58 in January 2022, I thought that my life was basically over - I could never have imagined getting the opportunity to represent Alzheimer Scotland at an international conference.

Prior to setting of the Alzheimer Scotland Active Voice Lead, Wendy Rankin-Smith, had set up a WhatsApp group so that all the Active Voice reps and staff attending conference could keep easily keep in touch - communication being a big consideration for people with dementia.  On the morning we set off my wife Lorraine and I met Chris (Active Voice Development Officer), and NDCAN members Anne and Elaine at Edinburgh Airport - it was like meeting family, and this is one of the great things about the SDWG and NDCAN, we are basically one big family.

The flights to Helsinki, via Oslo, were on time and the organisation was first class thanks to Wendy (and, of course, Chris, for sticking to Wendy's plan!!). On arrival at Helsinki Airport we were met by a lovely gentleman who was to transfer us to our hotel. He provided us with a running commentary about Helsinki on the way, and it was a great start to our time in the city.

On arrival at the hotel Wendy gave us a rundown of the plans for the coming days and continued her excellent organisational skills by arranging for us all to meet for dinner, introducing us the the AHP contingent attending the conference. This was especially helpful for Lorraine as, whilst she had heard much about everyone, it was nice to meet people in person and everyone was so welcoming.

The hotel was linked to the conference centre and the facilities included a gym which I found particularly useful as it allowed me to keep to my daily gym routine which is an important part of my day. The breakfast facilities were excellent, there were plenty of seating areas, and it wasn't too noisy which can be stressful for someone with dementia.

At the conference itself there was a meet and greet for people with dementia and their guests, and a quiet room identified should we require time aware from the conference. Seats in the front rows of the main hall were reserved for the use of people with dementia and their guests.

Prior to the official opening ceremony people with lived experience and their carers/supporters were welcomed by members of the European Working Group of People With Dementia, including SDWG member Margaret McCallion who is vice chair of the European Working Group.

There were so many interesting conference sessions taking place at the same time if was difficult to choose what to attend - the only down-side of the whole experience!

In one of the last sessions of day one our NDCAN colleagues, Elaine, Barry and Anne, were presenting in the National Dementia Strategies session in which they spoke about "ensuring meaningful engagement with those with loved experience" - telling the story of how they and the SDWG engaged with hundreds of people with dementia and carers as part of the consultation the Scottish Government's fourth National Dementia Strategy. What a way to finish day one .... they were absolutely fantastic!

After this it was off by bus to Helsinki City Hall for a welcome reception, returning to the hotel by "shank's pony" or, in our case, the city tram. Fortunately, NDCAN colleague Anne took on the role as our tour guide. The trams are regular, clean, and very easy to navigate, especially with our new official tour guide Anne!

Day 2 commenced with an early start to ensure our poster presentation was up and ready to view from 8:15am. Luckily, we were appointed an excellent spot right next to the refreshments. Being the shy, unassuming person I am I was sent forth at the break times to engage with delegates at the poster presentation and, with NDCAN friends Anne and Elaine, we had plenty of interested passers-by all day.

It was another day of interesting sessions, supporting our AHP colleagues in the morning at their presentations and in the afternoon fellow SDWG member Margaret McCallion, along with Fiona McLean and Elaine Hunter brought a tear to our eyes with their fantastic contributions to the Living With Dementia session. Margaret provided a reading from her chapter of the book 'Occupational Therapy and Dementia' which has the voice of lived experience at its heart. I'll certainly be buying the book and may even be able to get it signed by the authors!!

At the conclusion of the afternoon sessions it was time to head off into the city - guided again by Anne - where we enjoyed a Thai meal. On returning to the hotel we had the pleasure of some down time in excellent company - a great opportunity to get know other delegates a little better.

At the start of day 3 I used some down time to catch up with colleagues attending the conference to discuss a webinar I was to present on following my return from conference.  Lorraine used the opportunity to grab a couple of hours with a walk around the nearby indoor shopping centre - the largest in Europe!

After lunch it was time for the session that included my presentation. I hope it went well and that I represented the SDWG and AHP colleagues well. Lorraine got a little emotional and said she was proud of me, presenting me with a wee Lindt chocolate teddy purchased during her morning shopping spree.

A short break followed before the closing ceremony and one of the conference highlights. Fellow SDWG member Margaret Northedge couldn't resist having a go on a Swiss Horn being played by a couple of musicians saying goodbye to Helsinki and welcome to Geneva in 2024.   I didn't realise she had so much puff, but there was no holding her back and she definitely made her presence heard by departing delegates.

Following the closing ceremony Anne took charge again and we headed into the city for a traditional Lapish meal (sorry, but Rudolph was very tasty!). On returning to the hotel, all pressure now off, everyone had a thoroughly relaxing evening.

Reflecting on the conference, although on the face of it it seemed long and intense days, in reality they were very enjoyable and extremely encouraging hearing about what the future may bring.  

Lorraine was blown away by all that the 48 countries in attendance are doing for people with dementia, and recognised the need for Scotland to continue to be proactively getting the positive, awareness raising messages out there.  She has now joined NDCAN!

Before heading home Lorraine and I were able to catch a few final hours sightseeing in the town centre and stopped at a local cafe for a hot chocolate whilst watching a flurry of snow - what a way to finish a memorable few days. Thank you every for your support and the opportunity.

You can read a full report of the Active Voice input to the conference here