Feedback from previous UK Dementia Congresses
Every now and again one witnesses an event that totally changes the perspectives of participants. Such was the session in which representatives of the Living with Dementia Programme and the Scottish Dementia Working Group described the realities of their everyday lives - the challenges but also the positive aspects.
Some concluded that, rather than a death sentence, their diagnosis of dementia had been a new beginning for them - offering opportunities to discover a new purpose, learn new skills and find new friends. The effects on the audience were clearly profound. One said: 'I have been a nurse for 28 years and a specialist for 16. I now realise that we are not the specialists - YOU ARE.' Another said, 'This is the most moving learning experience I have heard for years.'
Hazel Heath, nurse consultant and consultant editor, Journal of Dementia Care
For me the keynote address from Ken, John, Eddie and their colleagues who are living with dementia and their subsequent parallel session was the highlight of the conference, in particular the challenge issued to us as professionals: that we need to communicate and work together with people experiencing dementia and their families.
Not anything new it might be said, but how often do we really hear that message when it is communicated by a person living with dementia or their family? It's certainly a message I will continue to try and hear, with renewed vigour. Thank you.
Jenny La Fontaine, Research Officer, Oxford Institute of Ageing
The representatives of the 2nd UK Convention for People with Dementia held in October 2007 and Dr Daphne Wallace gave a remarkable insight into what it is like to live with dementia. But when an invitation to ask questions was extended by the panel, the stunned silence from those sitting in the auditorium was deafening.
How long is it going to take those of us without dementia to start talking to people living with dementia? There is so much wisdom, knowledge and experience to be shared and we have so much to learn.
Rhonda Knight, senior lecturer, University of the West of England
The most startling fact for participants at the congress was Dr Jacob Roy's statement that most people with dementia live in low and middle income countries (71% by 2040). It was amazing to hear how much the Alzheimer's and Related Disorders Society of India has achieved in his country.
Education and training of all those involved with caring for people with dementia has been the key to success as indeed it should be in our country with its infinitely greater resources.
Dr Nori Graham, Vice President of Alzheimer's Disease International
The first full day of the Congress started as every dementia conference should start: with people with dementia talking about their experiences. It's vital for all of us 'dementia professionals' to listen to the real experts. Dr Daphne Wallace (now diagnosed with vascular dementia) described the denial she encountered upon telling colleagues about her orientation and word-finding difficulties, being met with responses along the lines of 'we all have those problems'.
But for Dr Wallace, who had been described earlier in life as a 'verbal athlete', the problems were new. It's essential to focus on the abilities and strengths that people retain, but never lose sight of the impact on the individual of the process of change and loss they are going through. We need to practice the true meaning of empathy - not comparing a person's experience with our own experiences, but truly listening and seeking to understand what's going on for them.
Buz Loveday, dementia trainer
This was my first Dementia Congress and I was not disappointed. There was energy for learning, sharing, reflection and making connections that I have not experienced at a conference for a long time with a wide range of sessions that sometimes made choice difficult. And how to fit lunch in when there were discussion sessions that would be missed!
It was exciting to hear finally of policy and practice developments that have the potential to make a real difference to the lives of people with dementia - the development of a national dementia strategy (Nadine Schofield, CSIP), resources from the My Home Life project that aim to celebrate existing best practice in care homes and promote care homes as a positive option for older people (Tom Owen, Help the Aged/City University) and the use of SOFI (short observation framework for inspection) in the inspection of care homes (David Francis, CSCI).
However, it was the plenary session 'It's your future' and 'From both sides of the curtain' delivered by people with dementia from the Living with Dementia programme and the Scottish Dementia Working Group that laid down the most significant gauntlet to the Congress audience. It is not enough to just listen - to 'hear the voices of people with dementia' - we must engage and take action with people with dementia. Ensuring this key message is at the heart of the dementia strategy and other policy developments should be a commitment of all who attended Congress and I look forward to hearing the results at next year's event!
Rachael Litherland, Innovations in Dementia CIC
I do think that it is a shame that so few doctors are aware of the variety and value of the additional perspectives that are portrayed at this annual event. Dawn Brooker's lampooning of the IPA annual meeting talking about 'Pharmacological and Non-Pharmacological Treatments' left an indelible message for me.
Reducing the impact of all therapies and other human interventions to the status of 'Non-Drug' is an appalling indictment of what doctors apparently think. As dementia is 'core business' for GPs, geriatricians, neurologists and psychogeriatricians, it would be good to think that next year more of them will come and participate!
Niall Moore, consultant old age psychiatrist, Bristol
It was great to see so many practitioners from care homes and other settings getting up from their seats, communicating their ideas, sharing their expertise and adding to the wealth of knowledge on improving quality of life and quality of care for people with dementia.
Tom Owen, My Home Life: Quality of Life in Care Homes
'We painted the doors red and changed the toilet seats to red': there is nothing new in this, but what was remarkable was that Katy Jenks had taken her staff with her and brought about real change in her unit at Braemount Nursing Home. Many people talk about it or make excuses for not doing it, but by using evidence based changes she has improved the quality of life her residents have. A breath of fresh air!
Jenny Henderson, Alzheimer Scotland
'I am an Alzheimer's Commando, me,' said a member of the Scottish Working Dementia Group opening the Congress. His powerful message about having nothing to lose by publicly taking on his disease and fighting to the end stayed with me throughout the whole event.
At last, I thought, the personal has become political. I hope he went to some of the presentations and workshops because it is clear that so much progress is being made on so many fronts of the struggle for better outcomes for individuals and their families and against stigma, injustice and social exclusion.
Maria Parsons, Director, London Centre for Dementia Care
The joy of the conference for me came from the pervasive feeling of 'family' - accommodating people of all generations: hardened (or softened) old campaigners alongside neophytes, professionals of every persuasion and perspective, together with some carers and some patients.
All were treated and received with respect and a library of topics lighter and heavier was explored with benefit in this spirit.
David Jolley, old age psychiatrist, Tameside and Glossop
It is refreshing to go to a conference where you really do learn some new ideas that can be put into practice. There were many useful sessions ranging from the practicalities of introducing music therapy, to descriptions of audit tools to improve practice in care homes.
I learned about the use of 'talking mats', a simple picture-based system to aid communication, the realities of pet therapy, and the simple but so helpful idea of always having items with you to help stimulate conversation with people with dementia.
Dr Amanda Thompsell, consultant old age psychiatrist, London
Since I have been working in this field (over 25 years now) I have been impressed by two revolutions. The first was when we began to take serious notice of the subjective experience of people with dementia; we came to understand that this experience is meaningful and to be valued. This first revolution resulted in ideas of person-centred care, which nowadays we take very much for granted.
The second revolution was apparent at the 2007 Harrogate conference - it is that we are now inviting people with dementia to speak from the podium as valuable contributors. This is the natural evolution of person-centred approaches and I thought it was just wonderful. I was amazed and delighted at these contributions and I look forward to hearing more from our 'clients' in the future.
Paul Whitby, clinical psychologist, Avon and Wiltshire
I found the energy at the conference inspiring, that so many like-minded people are now gathering to learn from each other demonstrating how professional and how true partnership working is benefiting people with dementia.
I specifically enjoyed a session about the role of speech and language therapists with people with dementia, demonstrating what can be done with only a few changes, but a lot of imagination. That's what the congress was all about: being imaginative and helping us all to the vision to see how much better it can always be.
Lynne Phair, consultant nurse for older people, West Sussex Primary Care Trust
I particularly enjoyed the contribution from Elizabeth Anderson of the Bradford Dementia Group on the neurological underpinning of disturbed behaviour in dementia and person-centred care: 'Emotions come first' is now imprinted on my memory!
I also enjoyed the whole trans-disciplinary atmosphere including people with dementia and their carers who had a central role. A shame there weren't more psychiatrists and physicians there.
John Wattis, consultant old age psychiatrist, Huddersfield
The lively debate about the ethics of using technology in the homes of people with dementia was put in perspective when a delegate, who has dementia, came and ordered one of our monitoring systems for herself. [The Just Checking system uses movement sensors to help track a person's activity via the internet.]
She explained she was happy for her friends to be able to 'see' when she needs more help, and when she doesn't. It makes you wonder if we are in danger of letting our own fears of technology be a barrier to it being deployed by people with dementia to maintain their independence and control?
Celia Price, Just Checking
As a relative newcomer to the field of dementia research and also as the daughter of someone with dementia I found the conference welcoming, informative and compassionate.
Joan Murphy, researcher, University of Stirling
The debate about the use of lies on the first evening really challenged my thinking. I was struck by the persuasive arguments and the questions that were generated. Even though the voting did not go the way I'd expected, it gave me a real insight into what our collective wisdom is around this issue and our openness to debate such controversial issues in dementia care. A great and challenging start to a really thought provoking conference.
Paul Edwards, Bradford Dementia Group
Keeping updated has been hard this year - hours alone hunched over the computer, squinting at websites but... what a happy two days to be at this conference and be wonderfully updated AND with socialising and friendship renewal/extension and meeting/face-to-face with key national experts. The session on medication was especially useful.
Cynthia Heymanson, dementia trainer
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