BU Research Blog

We have been attempting to engage with the public in a number of ways recently. The first was via having a stand at an Alzheimers Care Show in London, not quite the same as the Care Show at the BIC which targets those working in the care world (we had a stand there too and lots of interest, but in a business sense), the show in London was different in that it was advertised and open to anyone interested in dementia. The organisors sold hundreds of tickets in advance to those working in the field but tickets were on sale on the day for anyone worried about their memory or their family members. This was a slightly novel approach and on the second day, a Saturday, there was a lot of footfall from people directly affected by dementia rather than those working in the field (who swarmed in on the first day). It was interesting to hear this audiences views about what Universities should be doing to address their concerns, and is an area that vexes me as we are not a campaigning organisation, nor are we a service, but we clearly need to engage with and work to our key stakeholders agendas and concerns to be having genuine impact. Training professionals working in the field is an obvious one (and the key issue raised at our own local carers forum last year) as was the need for more information to sign post people along their dementia journey (and is one of the areas Claire House-Norman and her team are currently fundraising for). However one of the big issues raised was the need to challenge perceptions about dementia, the assumption that people with dementia are less able, lost, require ‘special’ treatment that results in marginalisation and stigmatisation. Now this aspect was really interesting to us in BUDI as we also have an arts and dementia project on the go at the moment where we are collecting written accounts from people with dementia and the general public about what they think dementia is/means to them and peoples’ views and experiences about dementia; this will be exhibited at the Festival of Learning in June. Standing windswept at Bournemouth beach this weekend – one of our general public venues (we, BUDI staff and volunteer BU students, have been all over in the last week with further venues this coming week, for examples in supermarkets, shopping centres, hotels, sports centres, libraries, and schools) it struck me how many people steer away, physically and mentally, from the word dementia. Our pop ups and papers blowing around in the wind at the beach attracted attention and laughter from passing members of the general public as we raced around to pick stuff up and tie it down, and did result in some people stopping to talk about and write about their experiences/thoughts. Free sweets also pulled in teens and families to stop and talk but to not necesssarily write as they didn’t know what dementia was or didn’t want to write down their experiences. Also some people stopped, read the sign and made comments about dementia and did a physically body swerve. We also got a lot of people who did stop and write about their views and experiences (and we are currently at about 400 stories in total) but there seems to be a general fear? aversion? negativity? to the word dementia which makes our arts project even more important as we are trying to get people to think about dementia and question and challenge the negative stereotypes that abound about this condition.  Engaging with the public about issues perceived as ‘difficult’ in some ways isn’t easy, nor is it easy to find practical ways for our University based work to have real impact, but we have started the journey and are open to any creative ideas others might have about how else we might go about engaging!