'Hope for a better future ....' - a report on Alzheimer Europe's 2023 Conference by Elaine Deehan, NDCAN

NDCAN member Elaine Deehan was one of a number of Active Voice members who attended Alzheimer Europe's 33rd Conference in Helsinki in October 2023.  In this report on the event Elaine says 'Kittos' (thank you) Finland for an inspiring conference that offered hope for a better future for the prevention, early detection, treatments and experiences for people living with dementia and their carers.

I attended the Alzheimer Europe Conference (#AEC33) in Finland in October 2023. Along with colleagues from the Active Voice Team, the Scottish Dementia Working Group and the National Dementia Carers Action Network.

There was a large Scottish contingency there, including university staff from the Alzheimer Scotland Centre for Policy & Practice, and Alzheimer Scotland's Deputy Chief Executive, Jim Pearson. Also attending and speaking was Professor Craig Ritchie from Scottish Brain Sciences, and colleagues from DEEP (Dementia Engagement & Empowerment Project).

There were 1,000 delegates in attendance at the Messukeskus Helsinki Expo, representing 48 countries, including 56 people living with dementia and 66 carers.  Additional delegates participated online. 

I presented my speech alongside colleagues from the National Dementia Carers Action Network.  We discussed our Active Voice involvement in the consultation on Scotland's fourth National Dementia Strategy, described by the Scottish Government as 'a new story'. However, many of us felt that the issues we face are not new.  I spoke about how as carers we welcome the strategy but have concerns about the plan being over 10 years, especially given that the Office for National Statistics reported dementia as the leading cause of death in 2022. The need for implementation is urgent and cannot wait for ten years - a view echoed by many at the conference.

A common theme we hear from speakers is that dementia must be made a priority for governments across Europe, with concerns being expressed around ageing populations and about how societies will cope. Many spoke of the need for prevention through brain health strategies and public education.

We hear of longer-term research programmes in Finland, including the Finnish Geriatric Intervention Study to prevent Cognitive Impairment and Disability (FINGER) which looks at lifestyles and affects several countries.

On the first evening of conference we were invited to the Helsinki City Halls which contained a giant sculpture of fingers and I wondered if this had anything to do with the dementia initiative!

The speaker from the Interdem Project (www.interdem.org). a network of researchers from across Europe collaborating and looking at psychosocial interventions, spoke about the difficulties of getting funding for such crucial research. Professor Craig Ritchie from Scottish Brain Sciences highlighted the Brain Health Scotland STARS school project as a way of educating children about positive lifestyles to protect brain health.

Tammie Gottschlich is a nurse researcher from Scotland who spoke about the DAVOS Alzheimer's Collaborative, a healthcare system preparedness project for the early detection of Alzheimer's disease. Trials in Dumfries & Galloway developed a nurse led pathway for brain health assessments and biomarkers. Feedback was that increased testing gave a sense of security, and lifestyle questionnaires improved bad habits.  The focus group stated the importance of the same nurse contact. Dr Alan Duncan and Alison McKean have collaborated with the Scottish Dementia Working Group on this project and have had positive feedback.

Iris Linden from Alzheimer Netherland spoke about a timely diagnosis with mild cognitive impairment and the worried well. She discussed how peoples' preferences and how they perceived the necessity for tests could influence GP decision making. With evidence that GPs are more inclined to test if patients increase their insistence. For patients, feeling heard is important and shared decision-making balances expectations.

Delegates from Norway spoke about the HUNT longitudinal study (Nord-Trondelag Health Study). This involved 10,000 over 70 year-olds and 1,025 people living with dementia. One of the largest studies of its kind.  It found that most were diagnosed at a late stage with under 65 year-olds and over 90 year-olds less likely to get a diagnosis.  Those with a family history are more likely to get a diagnosis. 

Also from the Netherlands, Esther Van de Berg spoke about a study for speech detection and indirect speech comprehension and looking at early changes in social behaviour and empathy. Using a 'hinting task' where a brief story is given and a person may say one thing but mean another. Asking them 'what does it mean?' can be a useful tool for detecting dementia.

Professor Nikos Scarmeas discussed nutrition. The MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay) in Denmark was trialed in 2022 and whilst there was weight loss there was no improvement in cognition. In Spain the PREDIMED Mediterranean diet is linked to better cognitive health.  Researchers are now looking at chrono nutrition which assesses calorific intake peaks and troughs. Evening peaks show no cognitive impairment, but this needs more research.

A great, fun initiative from Luxembourg is the 'Airtramp', a giant air cushion which helps to promote motor skills balance and coordination.  Photos from a pilot project in a residential and nursing home showed a 91 year old man lying on his back with his legs in the air, demonstrating great suppleness!

It was interesting to hear the Finnish preference of using the term 'memory disorder' rather than dementia - associating dementia with the negative Latin meaning of madness/insanity. Discussing this with others we felt that dementia is much more than just a memory problem, affecting all senses and thinking skills.

I was aware of some speakers still referring to dementia as part of old age, as though it is a normal part of ageing and not a neuro progressive disease.  We must be aware of the language we use to break down stigma.

By far the best speeches were from those living with dementia.  The conference was opened by people living with dementia, with Chris Roberts, Chair of the European Working Group of People With Dementia (EWGPD), saying how the audience has grown over the years. how attitudes are changing, and how he now feels more part of society. The contribution from Petri Lampinen, the Finnish member of the EWGPWD, was inspirational. Petri learned to speak English to allow him to deliver his speech as the language of the conference is English, and he deservedly received a standing ovation from the audience.

Scottish Dementia Working Group member Stuart Dougall spoke about his work as part of an AHP Animation Working Group alongside Alison McKean and Elaine Hunter, and about the importance of people with lived experience sharing their personal stories. Stuart shared his own Top Tips animation and received a warm and positive reaction from the audience.

Phyllis Fahr from Canada spoke about living with an early onset diagnosis and told delegated how they should always use 'LUVE' when speaking to someone with a dementia diagnosis - Listening; Understanding; Validation; Empowerment. The importance of inclusion, especially around meaningful research came from many.

The coffee and lunch breaks gave us time to network with others and view the many poster presentations. I had discussions with a lot of participants from around the world.  I met two ladies from Wisconsin who have created an outdoor centre for people living with dementia, and I was able to tell them about the Alzheimer Scotland outdoor resource centre and provide contact details to allow them to make connections and share experiences. I received positive feedback from many delegates about our contributions to the conference.

Helsinki is a beautiful city and easy to navigate via its tram system. We were made to feel very welcome, with everyone we met speaking perfect English. The best part of the conference was spending time with like-minded people who are passionate about dementia. To see so many enthusiastic young researchers present their work fills you with hope for a better future for the prevention, early detection, treatments, and experiences for people living with dementia and their carers.

Kittos (thank you) Finland!!

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