A bit of a glitch with my site but back on track once again…….
Supporting and Enabling People Living with Dementia
Kate Swaffer from Australia spoke about her experience of living well with dementia and that in spite of the losses and changes that she remains here. There was the recognition that whilst we should be striving for Dementia inclusive Communities that we are possibly far too down the line with the term Dementia Friendly Communities but need to go beyond this. Only by working together, keeping the lived experience of people with dementia at the heart of what needs to happen can inclusive communities be developed.
So include people living with dementia in every conversation about them, re-empower them to speak and advocate for themselves. The Scottish Dementia Working Group were highlighted as a great example of where people living with dementia take the lead voice in raising awareness- ‘our journey, our voice.’
Helga Rohra spoke again today and how she does not want to be seen as a victim of dementia but as a victor of dementia. Inclusion is a basic human right and that enablers are needed to help people to live well with dement
Dr Al Power, who I met with at the start of my travels, gave a keynote speech on enhancing well being for people living with dementia with 4 aspirations to help bridge the gap between the philosophy and reality.
1# Focus on wellness, not simply illness
By focusing on the deficits and stages of dementia we can over medicalise dementia with the risk of losing sight of the person behind the diagnosis. When people with dementia feel angry, sad or scared it is often considered to be a behavioural, psychological symptom of dementia (BPSD) and they are not afforded the same opportunity as those without dementia to experience these normal emotions without being labelled.
2# Strive to avoid using stigma and fear to advance our cause
Dementia is not an enemy combatant and we cannot demonise dementia without demonising the person. So the use of language is key as it can affect the beliefs, actions and of others around us acting as a barrier to critical thinking. Earlier on Kate had highlighted the language guidelines ‘See the Person, Not the Dementia’ developed by Alzheimer’s Australia.
3# Significant operational shifts to foster well-being in all environments
A culture change is needed to ensure relationships are valued over tasks although if systems still focus on tasks then this is not going to work. Dedicated staffing is also very important.
4# Shift from friendly to being inclusive
Whilst the intensions of being dementia friendly are good it can come across as patronising so care needs to be taken with this approach and what might work better is to develop authentic partnerships that support full social citizenship.
Policy, Practice and Economics
The presentation delivered by Chris Lynch from Alzheimer Scotland was positively received as well as my own (thanks Shibley for the photo) which described some of the work taking place on both a national and local basis to improve the experience for people living with dementia admitted into a general hospital setting. It was really heartening to hear that Scotland is seen by many other countries as taking positive steps to support people to live well with dementia.
Great links made with colleagues undertaking similar work around the globe including Professor Mark Yates from Victoria, Australia. Look forward to working together in the future.
The Gala dinner took place on the evening and was a great way to celebrate the 30th birthday of Alzheimer Disease International. A wonderful evening of celebrating good work around the world, music, fun and conversations with like-minded people. To top it all each female was given a beautifully wrapped gift, which turned out to be a bottle of perfume!
The last day of the conference was tinged with sadness as I reflected on the great people I’d met or heard speak. So much learning to take home with me but also relationships developed for future collaborative working.
I attended the Dementia and Acute Care session which kicked off with Michael Splaine (Policy Advisor for Alzheimer Disease International) who spoke about the all too familiar challenges faced by people living with dementia admitted into hospital and the need for ‘thoughtful hospitalisation- is this admission really necessary’?
Acute hospitals are very much in the brain care business but they just don’t know it and with the increasing numbers of people with dementia and cognitive impairment, you cannot just unit your way out through the provision of ‘acute care of the elderly’- it’s about supporting dementia to be everybody’s business.
Birgit Dietz an architect from Germany delivered an excellent workshop on sensual architecture for people with cognitive risks providing an excellent rationale for recommended changes.
The session concluded with Professor (and General Practitioner) Dimity Pond presenting results from a study of the discharge process and transitional care for people living with dementia and their carers. She identified the many barriers to effective discharge planning with the recognition that people with dementia are often excluded from rehabilitation support (something also flagged up by Kate Swaffer). Demand for post-discharge services also often exceeds availability of services.
This is the first time I have had the opportunity to attend an international Dementia conference and hopefully will not be my last. So many opportunities to learn about different approaches and the practical application as to how to take these forward. It was also reassuring to know though that in Scotland although there is still a way to go, we are on the right tracks.
If we remember the reasons why and for whom we are on this journey and take every opportunity to support the inclusion of people living with dementia and carers in communities including the planning and delivery of healthcare services we will get there.
‘I am no longer accepting the things I cannot change
I am changing the things I cannot accept’