Developing and evaluating Christmas events for people with dementia

1. Developing and evaluating Christmas events for people with dementia Dr Tracy Collins

2. The Royal Voluntary Service (RVS) (2012) reports that many older people are likely to be alone over the Christmas period Background

3. Background • Although Christmas can be a positive experience for many older people (Collins, 2013) it can be an isolating and excluding experience for some, compounded by multiple challenges such as family friction, increasing frailty, and a growing sense of passivity as established roles and relationships alter or are lost (Collins, 2014)

4. Background • People living with dementia and their carers may feel especially isolated and marginalised at this time of year • This paper draws on evaluative research findings from a community Christmas event held in December 2014 at the University of Salford for older people living with dementia and their carers

5. Developing the event • A working group of university staff and partner volunteers developed the event • Community Christmas provide resources to help plan and promote events: • http://communitychristmas.org.uk/

6. Obtaining funding • Make the Difference Try it Award, HEFCE and UnLtd • The Salford Advantage Fund • The Booth Charities • Waitrose Community Matters • Garden Needs • TESCO • Donations of chocolates, gifts for raffle etc.

7. Practicalities • Timing 11am until 2pm • Suitable venue, open but also ‘quiet’ room • Tree, decorations, crackers etc. • Voluntary transport, taxis • Refreshments and buffet lunch • Music and carol singing • Raffle and gifts, resources and contact numbers

8. Volunteers • 9 staff volunteers organised and attended the event. These volunteers also brought along family members and friends on the day • 19 student volunteers, including international students, attended the event some with family, children and dogs • The then Vice Chancellor, College Dean, local MP and BBC radio Manchester attended the event • Some volunteers came early and some came later others stayed for the duration of the event

9. Guests • 15 guests attended the event, 8 women and 7 men • 7 people were invited via Age UK • 3 people were invited via Occupational Therapists • 5 people heard about it through other networks • The original focus was on people living with dementia and their carers, however, invitations were later opened out to other local older people who would otherwise be alone

10. The event • https://www.youtube.com/watch?v=5kkARcZ7Nzg&feature=youtu.be

11. Aims of the research • To evaluate a community Christmas event • To explore the experiences of the guests and volunteers involved

12. A qualitative approach was adopted to explore the experiences and perceptions of the guests and volunteers involved in the Christmas event (Silverman, 2013) Ethical approval was gained from the University College Ethics Panel and informed consent was sought from participants prior to data collection (Israel and Hay, 2006). Pseudonyms were assigned to protect participants anonymity Methodology

13. Methodology • Seven staff and student volunteers (6 women and 1 man aged 23-58) participated in a group interview to explore and discuss their participation in the event • Seven guests (4 women and 3 men aged 62-86) took part in semi-structured interviews to explore their experiences and perceptions of the event

14. Methodology • The group and individual interviews were recorded and later transcribed. The transcripts were subjected to thematic analysis as it offers a practical and flexible method for qualitative data analysis (Braun and Clarke, 2006). A colleague also undertook analysis of the anonymised transcripts in order to increase trustworthiness

15. Three over-arching themes, with sub-themes, emerged from the interviews: Reasons for participants attending the event: Stress obligation, hard work and monotony Giving, doing and filling a gap Limited family, lack of friends, and losses Being alone and lonely, feeling excluded Preliminary findings

16. Reasons for participants attending the event • There’s only the two of us…because she’s only got one brother now her family has all gone. My family don’t live up here they live down South, there’s only my brother and he lives down there so… •   …My brother I don’t see that often…he doesn’t…the only time he comes here is if he is in the neighbourhood so I don’t’ get the chance to see him that often. • Jeff and Liz (guests)

17. Reasons for participants attending the event • Like I’m an only child, I don’t really mind, Christmas day like we have said is so family, I’ve got a lot of cousins and things like that and you know friends I would consider family but they are with their real families…So what would have been a lot of time kind of sitting on my own waiting for my mum and dad to do the tea or…it was being around people…I appreciated that on that specific day that…I wouldn’t be on my own but, but yeah a bit of a spare part sort of thing. • Jenny (student volunteer)

18. Preliminary findings • A different Christmas Day: the impact on volunteers and guests: • Meaning, a special day and memories of Christmas • Reciprocity, a multi-layered experience • A Different Christmas, a catalyst for change • Social belonging • Inter-generational relationships, feeling at home and valued

19. A different Christmas Day: the impact on volunteers and guests • I knew we were doing something good and that we were giving some time but I only had a certain…layer of understanding of that and I knew I was getting something out of it for myself in terms of my children seeing that there are other people not as privileged as them. But it was when I went to pick the woman up and her …friend and she said she had been up since five o’clock she had not been able to sleep because she was so excited and I just thought ‘God’ the realisation of how important that was. • Gemma (staff volunteer)

20. A different Christmas Day: the impact on volunteers and guests • Having the different age ranges, I mean there were even kiddies there, which was lovely you know, and one of the little girls came up and she made me a card…you know…god you don’t know how important that is…emotionally important…that was really lovely. • Peter (guest)

21. Preliminary findings • Learning, planning and moving forwards • Ongoing contact, building relationships and confidence • Developing supportive networks • Challenges and opportunities for future engagement • Sustainability

22. Learning, planning and moving forwards • On Christmas day there were a couple of people there that I already knew…I forgot her name she goes to line dancing…but she was there at that do…and her husband, I don’t know which one of them has Alzheimer’s but he used to work with me years ago. And they were there she was talking to me telling me about some club or something at…for people with dementia • Brian (guest)

23. Learning, planning and moving forwards • There are a couple of things that people at the University have mentioned, so someone from the Institute for Dementia has been in touch to ask for volunteers for coffee mornings and then, and you know that would really tie in because those people from the coffee mornings could come to the bigger event and you’ve got a local source of volunteers. • Jane (staff volunteer)

24. The findings illustrate that a range of people participated in the Christmas Day event for a variety of reasons The event itself had a positive impact, including the shared experience of social belonging, for all involved There are tangible longer term benefits as a result of the event, such as ongoing contact between participants and the development of supportive networks in the local community Conclusions

25. It is envisaged that this evaluative research will inform and support future sustainable community engagement projects of this kind and hopefully generate future funding for stakeholders Relevance to policy and practice

26. Further work • Following further analysis the findings of the research will be submitted to a peer reviewed journal for wider dissemination • Staff and students of the University of Salford will work with local partners on events for Christmas 2015 • Further research could be conducted for example, a larger longitudinal mixed methods study to examine the longer term impact of Christmas events

27. This work was supported by the Wellcome Trust [WT107307AIA] Acknowledgement of Funders

28. Braun, V. and Clarke, V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 2, 77-101. Collins, T. (2013) Remembering the past, looking to the future: Christmas as a symbol of change in later life widowhood. Ageing and Society, Available on CJO 2013 doi: 10.1017/SO144686X13000329 Collins, T. (2014) Managing widowhood in later life: the challenges encountered. International Journal of Therapy and Rehabilitation, 21, 2, 69-76. References

29. References • Israel, M. and Hay, I. (2006) Research Ethics for Social Sciences. Sage Publications Ltd. • RVS (2012) ‘Sad reality of Christmas alone for many older people’. RVS, Cardiff http://tinyurl.com/p2asefe (accessed 13 November 2013). • Silverman, D. (2013) Doing qualitative research. Sage Publications Ltd.

30. Any questions? • T.Collins@salford.ac.uk