Conference Bursaries Scheme

National project
Award: Various
Timescale: June 2016 – January 2017

Project aims

One of the Trust’s priorities is to empower people affected by dementia so that they can do the things that are important to them. People living with dementia and carers have said how important it is that they are at events and meetings which are about the lives they lead on a daily basis.

The conferences, seminars and meetings that professionals attend are often places where conversations and discussions take place that then form the basis of policy papers and legal documents. 

It is important that people affected by dementia are fully included in these discussions.  No policy should be decided without the full and direct participation of individuals/ groups affected by it. This is not idealism but democracy at work.

Background

In 2015/16 the Trust provided 64 bursaries to attend dementia events, so that people with dementia and carers could influence meetings, seminars and conferences.  These included the Alzheimer Scotland Conference 2015, and the Alzheimer Europe Conference 2015 in Ljubljana, Slovenia.

Feedback was provided by everyone who attended and a report was produced, which can be found here. This report has been highly influential in explaining why it is so important that people with dementia and carers are given their rightful place at conferences about matters which affect their lives. Its findings recently influenced the UK government to provide 50 free places for people living with dementia at a national conference.

More Information

Based on positive feedback and significant interest in this type of funding, we decided to allocate a limited sum of money to fund conferences and other events bursaries in 2016/17 so that people with dementia and carers could continue to contribute to as well as influence meetings, seminars and conferences. 

For example, we provided Life Changes Trust Awards for 30 people living with dementia, carers and former carers to attend the Alzheimer Scotland Conference on 1 June 2015 in Glasgow. 

We provided 34 awards for people living with dementia, carers and former carers to attend the Alzheimer Europe Conference in Ljubljana, Slovenia, from 2-4 September 2015.

The Trust then funded bursaries for ten people to attend the Alzheimer Europe Conference in Copenhagen in October/November 2016 (three people with dementia and seven carers). We also funded three places (two carers, one person with dementia) at the Alzheimer Disease International (ADI) Conference in Japan in April 2017. 

In 2018/19, our conference bursaries supported:

  • 1 person to attend the ‘Forging New Frontiers in Dementia Research’, in Edinburgh (April 2018)
  • 3 carers to attend the ‘Alzheimer Disease International Conference’ in Chicago (July 2018)            
  • 5 carers to attend the UK Dementia Congress in Brighton (November 2018)
  • 1 person to attend the ‘2019 Care of the Dying Patient with Dementia for Nurses and AHPs’ conference in Manchester (May 2019)

People could apply for a bursary if they lived in Scotland and were:

  • a person living with dementia
  • an unpaid carer of a person living with dementia
  • a former unpaid carer of a person living with dementia, who stopped providing unpaid care in the past 24 months

Funding covered costs associated with attending the conference or event, including: conference fees; travel; accommodation; food and drink; costs for a supporter who is not the primary carer.

Outcomes we'd like to see

  • people living with dementia and carers are empowered to have a voice at a wider variety of conferences relevant to dementia   
  • people living with dementia and carers are involved in policy discussion and decisions
  • people living with dementia and carers are financially supported to have a voice at a wider variety of conferences relevant to dementia   
  • conference venues are dementia friendly to encourage and support attendance of those with dementia
  • organisers of conferences relating to dementia significantly include people affected by dementia

Case study

Feedback from conference attendees who recevied a bursary has included:

“The conference was brilliant. It was good to share knowledge and understanding. Having different people speak and finding out what they think about dementia was really useful.” (Carer) 

“Attending the conference and listening to the presentations inspired me and strengthened my resolve to remain positive. I was encouraged by the success stories of those living with dementia, in particular the coping strategies and the determination shown by individuals to make the best of what you have.” (Person with dementia)

“If we are not there, it is as if a football match has been arranged with all the officials being present, but no footballers invited to participate” (carer)

And what attendees said about why it was so important that they were at Conferences: 

  • “So that professionals could see real people, with real lives, living in the community with a diagnosis.” 
  • “To get our voices heard.” 
  • “No matter how much we tell people, no-one knows what it is like to be in our Heads. (It is) important for the newly diagnosed to know we can still do so much.”