Our Annual Conference 2024

On Friday 20 September, we welcomed almost 400 delegates to the Edinburgh International Conference Centre (EICC) for our Annual Conference. The theme for the day was ‘Your choice, Your voice, Your future’ and we had a range of informative sessions and wonderful presenters. All sessions were recorded and can be viewed on our website here. 

Welcome and Opening Session

At Alzheimer Scotland, the voice of lived experience is at the heart of everything we do, and our conference was opened by Tommy McLean (the Scottish Dementia Working Group) and Maureen Huggins (the National Dementia Carers Action Network). Tommy and Maureen shared their personal experiences. Tommy as a person with dementia and Maureen as a former carer.

We had a ministerial address from Maree Todd MSP, Minister for Social Care, Mental Wellbeing and Sport who joined us by video link.

Our Opening Session keynote speaker was Scott Mitchell, Peoples Champion, Dame Barbara Windsor Dementia Mission. In 2022, the UK government announced a National Dementia Mission that Scott had helped campaign for in his late wife’s name - ‘The Dame Barbara Windsor Dementia Mission’. Scott spoke about his life with Barbara, the impact that Alzheimer’s disease had on their lives, his campaigning work and the commitment he has to the Mission.

Alzheimer Scotland Chief Executive, Henry Simmons addressed the conference. He spoke about the overarching conference theme of ‘Your voice, Your choice, Your future’ and talked about each of the individual session themes.

Some key points from Henry’s address

• There have been some differences in the ways that dementia is portrayed by organisations. There are two camps emerging – one camp that wants to tell the difficult, but very real, hard experience that people go through and the other camp sharing how people can live well with dementia. We don’t want a split between dementia communities but want to find a middle ground. Returning to the core principles of what drives all our work and practice – that concept of personhood. Ensuring anyone going through the experience of dementia has their right to choice, their voice is central to their future, and we must do all that we can to protect their personhood. We will never step back from fighting for those with advanced dementia and we will always encourage people to live well with dementia knowing that it’s not an easy journey but knowing through every step you will live better if you are given power, choice and control.
• There is a real issue about the rights of people at risk of developing dementia or who have dementia. Here we have a drug (lecanemab) that is approved by the MHRA, who say it is safe with the right restrictions, a drug that has some solid evidence, been accessed by NICE on the back of a system that has done nothing in decades to look after the rights to treatment for people at risk of developing dementia or who have dementia. We are now hearing it’s too costly to put in place the structure needed. Our position is that we know coming down the line will be more drugs of this nature – are we going to miss the opportunity for these treatments to be delivered in Scotland. We are going to do everything we can, not just to argue for lecanemab but to argue for preparedness. We need to get ready. It’s a right based issue, not just about evidence.
• You’ll hear later about the progress of our Brain Health Clinic. The fact that we have a walk Brain Health Clinic in our Brain Health and Dementia Resource Centre in the heart of Aberdeen that over 100 people have attended and have received information and support about how to protect their brain health its remarkable. We should be multiplying that and rolling IT out rapidly. This is the nature of preparedness that is required.
• It’s remarkable that we do not have a plan for long term care in Scotland. We do need to be working together - we need to think about alternatives. We have had really positive meetings with the Cabinet Secretary for Health and I’m optimistic that the work from the (Long Term Care Commission) report may lead to a greater collaboration at the highest levels of government to really think about how we look after the future long term care needs of people. My hope that is that we will reach a point where we won’t see a care home as something that people have such a traumatic experience of. We’ll have long term care facilities that alternatives to large scale care homes. That it feels right and driven by that individual’s choice. Long term care options that are actually what the person wants. We’ll never give up on bringing an end to inequality for those with advanced dementia who are having to pay for care at that point when it is clearly healthcare needs.

• We should be so proud of our Scottish researchers. Scotland is awash with practitioners and researchers dedicated and devoted to research. Scotland shouldn’t be sitting on the periphery of some of the major investments, we should have a crack at the whip and show what Scotland can deliver. We are trying hard to get Scottish office to go down to the UK government and support our arguments in this area.

Session 1: Protecting personhood

This session addressed the importance of seeing the person first and foremost, rather than the disease. Everyone has the right to remain part of their local community - to contribute and be seen as a valued citizen, regardless of their diagnosis. The session outlined the importance of personhood, dispelled misrepresentation of ‘living well with dementia’ messaging and addressed characteristics such as disability and sexual orientation that should be considered when delivering high-quality, person- centred practice. Speakers were:

• Kate Swaffer (activist and author) ‘Putting the ME back in deMEntia’
• Professor Louise Ritchie (University of the West of Scotland) ‘Defining Personhood’
• Jennifer Hall (Alzheimer Scotland) ‘Personhood and Dementia – Back into the Closets?’
• Professor Karen Watchman (University of Stirling) ‘Shine a light on learning disability & dementia’ 

Watch the Opening session and Session One here.

 

Delivering high quality dementia support specific to each person’s needs has come a long way in the last 40 years. This session reflected on the 10 years since post diagnostic support was made a national commitment by Scottish Government, updated us on the initial year of the world’s first Brain Health Clinic, and celebrated innovative developments, such as the recently launched virtual reality football experience at Hampden Park. Speakers were:
 

• Rynagh Flynn (Scottish Dementia Working Group) ‘Why practice innovations are so important’
• Hugh Masters & Helen Skinner (Brain Health Scotland) ‘Scotland leads the way: Pioneering brain health service’
•  Maureen Taggart (Alzheimer Scotland)
  ‘Celebrating 10 years of Scotland’s national commitment to Post Diagnostic Support’
• Dr William Kavanagh (Abertay University)
  ‘Game Changer - VR-Aided Football Reminiscence Installation at Hampden Park’
•  Michelle Miller (Healthcare Improvement Scotland)
  ‘Launching a national improvement programme to reduce stress and distress for people living with dementia’. 

With a vision for green spaces and social prescribing to be integrated into high quality dementia support, this session will showcase, through visual and sensory representation, the benefits of utilising outdoor spaces to support people with dementia, their family members and carers. Presenters reflected on the evidence based learnings from Alzheimer Scotland’s first Outdoor Brain Health & Dementia Resource Centre and shared details of future plans for more outdoor facilities. Speakers were:

• Gillian Councill, Kenny Wright & Andy Miller (Alzheimer Scotland) ‘The Future is Green: Harnessing Nature’s Power for Dementia Care’

Watch Session 2 and Session 3 here.

Alzheimer Scotland launched its ‘Commission on the Future of Long Term Care in Scotland’ report in May 2024. The Commission, led by former First Minister of Scotland and Alzheimer Scotland Ambassador Henry McLeish, identified a clear lack of strategic planning and commissioning for long term care arrangements in Scotland and no clear national or local plans as to how we best address the current and future long term care needs of people with dementia, and more specifically, people with advanced dementia.
This session provided an overview of the 16 recommendations that Alzheimer Scotland is urging Scottish Government to implement as a priority, along with an overview on the global economics and impact of long term care for people with dementia. Speakers were:

•  Fiona Catterson, (National Dementia Carers Action Network) ‘Why long term care is so important’
• Jim Pearson (Alzheimer Scotland)
  ‘The Commission on the Future of Long Term Care in Scotland’
• Adelina Comas-Herrera (Global Observatory of Long-Term Care) ‘The future of long term care’
  

Recent press headlines have been dominated by the news of new drug developments and trials. Given the increased pace of dementia research, these kind of headlines are hopefully just the beginning of further breakthroughs. This session addressed what has been happening in Scotland with regards to dementia research, and what the future may hold. Speakers were:

• Stuart Dougall (Scottish Dementia Working Group) & Marion Ritchie (National Dementia Carers Action Network) ‘The importance of dementia research’
• Alison McKean (Alzheimer Scotland) - ‘Brain health and dementia research developments’
• Dr Tom Russ (University of Edinburgh) - ‘Where is dementia research taking us?’

Watch Session 4 and Session 5 here.