The last few months have been a time of change at the Stirling site. We have two new researchers, Kirsty Alexander and Kainde Manji (our new research fellow), who are continuing with the fieldwork interviews. Most of our participants were visited by Barbara Graham, our first research fellow. Barbara has now returned to Northern Ireland, but was glad to have met so many wonderful people from the Forth Valley and East Dunbartonshire during her time working on the Our Neighbourhoods project.
We have also ventured into new neighbourhoods by expanding the area covered for the fieldwork. In March 2016, we decided to reach out to organisations, people living with dementia and their carers from across the entire central belt of Scotland. We did this with the hope of finding more people interested in taking part in the research, and we are very pleased to report that we now have new participants from Glasgow, Edinburgh, Perth and Kinross. This means that we can understand the experiences of people living with dementia and carers who are from a range of urban and rural neighbourhoods – from those in inner cities and on the city outskirts to neighbourhoods in towns and villages.
We are very grateful to all of our 41 participants for welcoming us into their homes and sharing their experiences with us. So far 20 people living with dementia and 21 family carers have volunteered to take part in the project. We would also like to thank staff from a range of local organisations who have been more than generous with their time and effort. They have helped us network, distribute information and be in touch with potential volunteers.
As the first round of interviews come to a close, the next few months will be spent analysing our findings with our co-researchers in Manchester and Linköping ahead of commencing the second round in the Autumn.
Richard Ward, Kainde Manji and Kirsty Alexander
(University of Stirling)
Between the 27th June –1st July 2016 John Keady was invited to the Wicking Dementia Research and Education Centre, University of Tasmania, Australia to take part in an intensive week-long programme. During this time, John was filmed on dementia friendly community work for the University of Tasmania’s free Massive Open Online Course [MOOC] on understanding dementia, which last year reached over 70,000 people around the world and had the highest completion rate of any dementia MOOC in the world. Once editing has been completed and supporting learning materials written, the filming will lead to a more community orientation of the understanding dementia MOOC; John was also able to talk about the ESRC/NIHR Neighbourhoods and Dementia programme grant as part of the interview and the work going on here in Manchester and across the UK/Sweden as part of the Neighbourhoods study. During his time in Hobart, John undertook an evening public lecture with simultaneous transmission on Facebook [the video reached 1,993 Facebook users and 401 users viewed the live stream/video], completed an early morning radio interview and had a interview about the Neighbourhoods and Dementia study/dementia friendly community work published in the Mercury newspaper for Tasmania as well as lead and complete a 6 hour workshop with Centre staff.
It has been busy at the Greater Manchester site and we are extremely grateful to all those who have provided help and support. This includes all those who have offered advice on where to go and with whom to speak to find people to take part in the work, those who have provided feedback on our research design and methods for collecting data, as well as many people who have given their organisational support. Most importantly, we have been delighted by the number of people living with dementia who have volunteered to take part in the research and have told us their stories with warmth and honesty.
We set out in May 2015 hoping to find 40 people to take part and were fortunate to have 51 people volunteer, 49 of whom have gone on to take part in our research activities. We have involved 26 people living with dementia and 23 family carers. Thanks to them we are able to understand the experiences of living with dementia for a whole range of people not just those born and bred in Manchester, but also from right across the UK and overseas, and ranging in age from their late fifties to late eighties. We have spoken to people diagnosed with Young Onset Dementia, Alzheimer’s, Vascular Dementia and Pick’s disease.
Our data consists of many fascinating interviews, walks, photographs, diaries and films. Twenty-three carers have produced social network maps with us, we have been on 23 neighbourhood walks with people with dementia, completed 26 home tours, and 2 people have completed movement-diaries for us. We have been working hard to understand all the stories and information gathered and are beginning to develop some important ideas about what matters in people’s lives, where they live and the kind of support such as informal help as well as support from their neighbourhoods and communities. This analysis is also helping us to consider the sorts of things we like to ask people about when we re-visit them in the autumn of this year.
This month we are attending the British Society of Gerontology http://www.britishgerontology.org/ Annual Conference at the University of Stirling where we will present a symposium on our work from across the project sites. The symposium which is titled ‘Neighbourhoods and the new geography of dementia, care and support’ is exploring the experiences across Stirling, Manchester and Linköping as well as experiences from our sister project in Ottawa, Canada to consider about how people living with dementia and their families experience everyday life in their neighbourhoods. We have also presented our early findings at a range of events in the Greater Manchester region.
Andrew Clark and Sarah Campbell
(University of Salford and University of Manchester)