Salford Institute for Dementia Newsletter: Spring/Summer 2020

NEWSLETTER/

SPRING/SUMMER 2020

ISSUE 7

Welcome from Director Welcome to our Spring 2020 newsletter. In this issue we draw attention to two research studies that have recently completed, one with a longstanding collaborator, 6 Degrees, funded via the Big Lottery Fund known as Empowered Conversations.

We also report on the evaluation of our Dementia Associate Panel, our unique approach to user-led partnership and involvement of those living with dementia and their care partners. An in-progress initiative, the Teaching Care Homes project is also featured. We are just beginning several other projects, one with the HallĂŠ Orchestra where we will be evaluating new musical initiatives they will be offering to people in the community and in care settings, another with Together Dementia Support evaluating their Big Lottery Funded groups for people living with dementia in the community, including a group aimed at South Asian people. So, as some projects come to an end, we also have projects in progress and new projects beginning and we will report on these in future issues of this newsletter.

We have been very fortunate to have had Chris Sewards working with us on a secondment basis as one of our community engagement officers for the last 18 months, he has now returned to his substantive role with Aspire. We are pleased to welcome Sophie Bushell back after her maternity leave.

This year, Dementia Action Week takes place between the 11th and 17th May. In light of the public health issues surrounding coronavirus we have had to make the decision that we will not be running our events as planned this year. Do keep safe in these unsettling times and we hope to host another open day event when it is safe to do so. We have also had to make the decision to temporarily close The Hub and the groups we run for the foreseeable future. We will be pleased to welcome all existing members, and new members too, when we resume our groups as usual.

Professor Anthea Innes Coles-Medlock Director, Salford Institute for Dementia

St Peter’s, Manchester

Last year’s successful open day, this year’s will take place on Wednesday 13th of May

SPOTLIGHT ON MEMBERS OF THE TEAM/ DR MEGAN WYATT/ Megan worked with the Salford Institute for Dementia as a Research Associate from September 2019- May 2020. Between September and December 2019, she evaluated different Dowager Countess Eleanor Peel Trust funded projects that aimed to investigate how people living with dementia and their care partners can live well within the Greater Manchester community. Megan then worked on the Empowered Conversations project where she is helping to evaluate a communications course for carers of people living with dementia.

Megan’s background is in the Arts and after she achieved a first-class honours degree in Fine Art and a Masters in Art practice, she went on to undertake a PhD which investigated how people living with dementia engage with and experience painting whilst working alongside an artist-researcher. We wish Megan well in the future as she pursues her art.

CONDOLENCES /

We were saddened at the peaceful death at home of Ron Bowker who, along with his daughter Gail, has been an avid participant of our music groups over the last 2 years and an active member of our Dementia Associate Panel. All of us at the Salford Institute for Dementia would also like to thank Gail Bowker for the donations we received following Ron’s funeral to support our work, we are so grateful.

DEMENTIA ASSOCIATES/ VERA SHAW/ Vera became involved with the Institute for Dementia in 2013. Vera became active with the Institute when she contributed to the original design and development of the Dementia Hub. Vera brings a wealth of experience and knowledge to her role as a Dementia Associate from her past career and her present caring roles.

Vera trained as a nurse in Salford in 1980 and spent 10 years working in the area of Neurology. For the past 20 years, Vera has supported her Father who lives with Vascular Dementia and for the past 11 years Vera has also supported her brother, also living with Vascular Dementia.

Vera continues her caring roles whilst also living with memory issues herself for the past 3 years.

Vera is a busy lady with her involvement in numerous community groups across Greater Manchester in addition to her continued input with

nursing students in the School of Health and Society, conference presentations and community engagement activities. Vera does find time for hobbies and she is passionate about music, singing in her church choir and attending theatre productions when she can. Vera also takes a keen interest in alternative therapies including aromatherapy, meditation and massage.

Through Vera’s experience of caring for her father and brother, she became passionate about trying to improve the lives of those who are living with dementia or caring for someone living with the condition.

She also has a keen interest in new and current research surrounding how the lives of people living with dementia can be improved and how carers can be supported. In her role as a Dementia Associate, Vera uses her knowledge of dementia to support others who

RON BOWKER – 15.12.1931 – 01.02.2020 Ron started coming to the Hub at the Salford Institute for Dementia with his daughter Gail in June 2017. He loved every aspect, the environment, the groups but most of all the friendships he made. Ron always said that the hub was a place where he felt wanted. As an Associate, Ron collaborated with researchers and highlighted that it is still possible to live well with dementia.

Prior to Ron’s diagnosis of vascular dementia in 2015, he was a carer along with Gail for his wife of 59 years, Gerry. Gerry had dementia with Lewy

are living life in similar ways.

Vera’s dedication and experience in supporting people living with dementia to have worthwhile lives provides a valuable perspective which contributes to the work of the Institute. Most importantly, Vera offers a perspective from someone living with memory issues and is a strong advocate for raising awareness and hearing the ‘voice’ of people living with dementia.

Bodies, so Ron knew what it was like to live on both sides of the dementia spectrum. He was passionate about music having been a drummer and percussionist as a young man. His love of opera and classical music shone through when partaking in the music sessions in the hub.

Ron loved life and lived it to the full. He represented the hub at conferences and panel events, never shy in meeting visiting dignitaries and guests. Ron will be sadly missed, his infectious cheeky laugh and boyish glint in his eyes will never be forgotten.

RESEARCH/ In this issue we focus on three studies conducted at the University of Salford. The first two are now complete: the Empowered Conversations project funded by the Big Lottery Fund and conducted in partnership with 6 Degrees, and the second the Dementia Associates Panel Evaluation funded via the Dowager Countess Eleanor Peel Trust. We also report on an ongoing initiative, the Teaching Care Home initiative.

EMPOWERED CONVERSATIONS LOTTERY FUNDED PROJECT/ Being unable to communicate is frustrating. We all value connecting with others and being understood.

For people living with dementia communication difficulties can be challenging and painful, and the same goes for those who provide care and support.

Family care partners can find communicating with loved ones particularly challenging, because they have grown used to connecting in certain ways.

Sixty-four percent of family care partners in England say they have limited support for the range of psychological and social needs they experience.

The Empowered Conversations course was designed to enable care partners to establish and maintain good relationships with those they support.

Course facilitators were mainly current or previous care partners and are trained to provide specific communication techniques, ways of managing conflicts and working with difficult emotions. The course was developed at the University of Salford’s

Institute for Dementia in partnership with an organisation called Six Degrees Social Enterprise.

A 3-year research project on the Empowered Conversations course has ended. As part of this research study we interviewed 28 family care partners about their experiences of the Empowered Conversations course and analysed this following a rigorous framework analysis method. The course was made up of two-and-ahalf-hour sessions and originally ran over 4-weeks.

At the final session, 85% of care partners rated satisfaction at 8 or more, and 90% of care partners rated their confidence to recommend the course to a friend in a similar situation at 9 or more.

Observational data and the interview data found that a substantial number of care partners wanted more sessions and that relational stress was not sufficiently covered. So the course length has been increased to 6-sessions and will continue to be delivered across Greater Manchester and beyond.

Empowered Conversations course

Empowered Conversations course, Trafford

DEMENTIA ASSOCIATES PANEL EVALUATION/ This evaluation included eighteen people (10 care partners and 7 people living with dementia) in the Greater Manchester area who are working with the Salford Institute for Dementia (SID) as Dementia Associates. The evaluation period was 18 months and adopted a mixed methods approach to explore the impact of the Dementia Associates Initiative on the wellbeing of people living with dementia and their care partners. The design of this evaluation provided a ‘before, during and after’ structure to address the overall research question: What impact does membership of the Dementia Associate Panel have for people living with dementia and their care partners?

Methods included semi-structured interviews, selfreport questionnaires and analysis of meeting minutes and semi-structured focus groups to address the aims of the evaluation.

Through adopting a model based on inclusion, participation and citizenship principles we found that the members of the Dementia Associates Panel felt empowered to share their views. This helped fulfil their own personal needs whilst also providing a forum enabling their agendas for change to be raised and addressed. It was evident that at the beginning of the evaluation many participants felt isolated and had ‘nowhere to turn’. However, at the end of the data collection period, Associates spoke animatedly about having a sense of purpose and feeling included and valued. It was found that the unique and integrated approach of the Associates group with the University provided participants with numerous opportunities to engage in research, education, public awareness and community engagement activities and to support Associates ambition of creating and contributing to a wider impact.

TEACHING CARE HOMES INITIATIVE/ For the last 2 years the staff from 16 care homes across Greater Manchester, the University of Salford, Manchester Metropolitan University and Greater Manchester Health and Social Care Partnership have been collaborating as part of the Greater Manchester Teaching Care Homes project. One strand of this collaboration is Workforce Development. The vision was to support the development of communities of excellence within Greater Manchester Teaching Care Homes and also to support the evolution of a wider community of excellence of care homes across Greater Manchester Health Education England funding to support workforce development for care homes in the North West of England was used to undertake this work.

Following co-design meetings with stakeholders from and related to the care home sector an approach was agreed that focussed on engaging, empowering, enabling and equipping care home staff and managers to be the leaders for the development of these communities of excellence. The University of Salford facilitated the opportunity for care homes to appoint learning coaches who would train to facilitate the ‘Excellence in Resident Centred Care’ (ERCC) programme in their care homes. The two-day training programme was delivered to the care home learning coaches by the ERCC programme leaders from Canada. Care home mangers and learning coaches are reporting how their colleagues are embracing this opportunity to reflect upon and refresh their knowledge and skills for best practice in care homes. https://the-ria.ca/resources/excellence-inresident-centred-care-ercc/. We will provide an update on this work as it progresses further.

PUBLIC ENGAGEMENT/

As always SID have been out and about, telling the public what we do. In September 2019, Gemma Lace led a session at the Biomed Soc Social, encouraging undergraduate students to get involved in dementia public engagement and outreach initiatives.

the second event called ‘Healthy Hearts =Healthy Brain’ was held in collaboration with Alzheimer’s Research UK, The University of Manchester and the University of Liverpool. At this event, local dementia research was showcased alongside SID support initiatives.

Other events Lace lab attended a number of biomedical science conferences including the Dementia Consortium Roadshow in Manchester (October), FTDUK 2019 in Cambridge (October) and the UK Extracellular Vesicles Conference in London (December) and Future Physiology 2019 in Manchester (December)

We also co-ordinated a number of events at Manchester Science and Industry Museum over the October half term. The first event was called ‘Blood and Bodies’ and covered the biology of dementia, and

Gemma Lace (and her three kids!) swam 537 lengths (in representation of the 537k people in the UK living with a dementia diagnosis) in 5 weeks for the Alzheimer’s Research UK #swimmingdowndementia challenge, raising a total of £472!

1. ‘Blood and Bodies’ 2. Biomed Soc Social 3. Healthy Hearts =Healthy Brain 4. Manchester Science and Industry Museum 5. UK Extracellular Vesicles Conference

1 2

3 4

5

DISSEMINATING OUR WORK/ We have been fortunate to present at various conferences locally, nationally and internationally as follows: CONFERENCE PRESENTATIONS/ Clark, A. and Campbell, S. (2019): Why do neighbourhoods matter for people living with dementia?: A UK case study. Invited Keynote. Veillesse, handicap et territoires inclusive: Enjeux et innovations dans les politiques de soutien a l’autonomie, Bordeaux [France], 18th October.

Clark, A. and Campbell, S. (2019): Why do neighbourhoods matter to people living with dementia and their families?, Centre for Ageing Research Ageing & Communities conference, Lancaster, 19th Sept.

Innes, A., Smith, S.K., Sewards, C. & Calvert, L. (2019) Can Memory Cafes improve the wellbeing of people living with dementia? UK Dementia Congress, Doncaster, UK. Morris, L., and Smith, E. (2019, November). Qualitative evaluation of a communication training for family care partners. Oral presentation at the Dementia Congress Conference, Doncaster, UK. Morris, L., Mansell, W., Innes, A., Wray, A. & McEvoy, P (2019, September). Empowered conversations: a communication training and approach for carers of people living with dementia.

Oral presentation, presented at the International Association of Perceptual Control Theory conference, University of Manchester, UK Smith, S.K. Assistive technology for people with dementia Danish, Dementia Research Centre, Copenhagen, Denmark. November 2019 Smith, S.K., Innes, A., Bushell, S. & Sewards, C. “What does it mean to be a Dementia Associate? Evaluating the Salford Institute for Dementia Associates Initiative.” 29th Alzheimer Europe Conference, The Hague, Netherland. October 2019 Smith, S.K., Innes, A. & Bushell, S. “Can live music performances improve wellbeing for people living with dementia? Evaluating the Music, Hospitals and Care Concert Club.” 29th Alzheimer Europe Conference, The Hague, Netherlands. October 2019 Smith, S.K., Innes, A., Della-Cerra, M. & Della-Cerra, M. (2019) Can a Gardening Club improve the wellbeing of people living with dementia. UK Dementia Congress, Doncaster, UK. Smith, S.K. Dementia Research at the Salford Institute for Dementia (2020). Presentation at the Dementia Link Practitioner & Staff Learning Event, Salford Care Organisation, Northern Care Alliance NHS Group Wilson, J. (2020) Analysing the Language of Dementia Diaries. Workshop delivered at Relationships and Communication in Dementia, March 19th 2020, Manchester UK.

One of our projects has produced a podcast, and you might be interested in viewing this as detailed below: Campbell, S., Clark, A. and Walsh, M. (Dec. 2019): Neighbourhoods and Dementia: Co-producing research with people living with dementia. Podcast for NIHR/Dementia Researcher.

Available at www.dementiaresearcher.nihr.ac.uk

WE HAVE ALSO BEEN BUSY WRITING UP OUR WORK IN VARIOUS WAYS: PEER REVIEW PAPERS/ Hicks, B, Innes, A. and Nyman, S (2019) Experiences of rural life among community-dwelling older men with dementia and their implications for social inclusion Dementia DOI: 10.1177/1471301219887586 Scerri, A, Innes, A and Scerri C (2019) Person-centered dementia care in acute hospital wards - the influence of staff knowledge and attitudes Geriatric Nursing DOI: 10.1016/j.gerinurse.2019.09.001 Scerri, A., Innes, A. and Scerri, C. (2020) “Dementia care in acute hospitals– A qualitative study on nurse managers’ perceived challenges and solutions” Journal of Nursing Management. https://doi.org/10.1111/jonm.12941 McEvoy, P., Morris, L., Yates-Bolton, N. & Charlesworth, G. (In press). Living with dementia: Using mentalization-based understandings to support family carers. Psychoanalytic Psychotherapy Odzakovic, E., Kullberg, A., Hellström, I., Clark, A., Campbell, S., Manji, K., Rummery, K., Keady, J. and Ward, R. (2019): ‘It’s our pleasure, we count cars here’: an exploration of the ’neighbourhood-based connections’ for people living alone with dementia. Ageing and Society

REPORTS/ Clark, A.and Campbell, S. (2019): ‘Paws for Dementia’ Dog Walking Group Evaluation. Report for the Open Doors Network and Greater Manchester Mental Health NHS Foundation Trust Innes, A., Smith, S., Wyatt, M. and Bushell, S. (2019) The Dementia Associate Initiative. University of Salford Smith, S., Bushell, S. and Innes, A. (2019) Evaluation of the Music Café (in association with Music in Hospitals and Care) University of Salford

BOOK CHAPTERS/ Mountain, G.A. & Smith, S.K. (2020) Promoting participation in meaningful occupation in ‘Timely Psychosocial Interventions in Dementia Care’, INTERDEM, Jessica Kingsley

BEST PRACTICE GUIDE/ Reynolds, L. and Innes, A. (launched November 2019) Changing the Rhythm of Care Healthcare Management Trust and University of Stirling

HIGHLIGHTS FROM THE SESSIONS FROM OUR GROUPS AT THE HUB/

We have had many fantastic sessions at our various groups in the last 6 months. Here we highlight 3 that were particular favourites. If you, or someone you know, are interested in joining any of our groups please do get in touch with us on 0161 295 2363 or email dementia@salford.ac.uk, we would love to see you!

We have enjoyed numerous and varied activities in the dementia hub over the last six months, a few of which we have highlighted here.

We had a wonderful afternoon learning all about an art technique called ‘Brusho Inks’. Our talented researcher Megan taught us how to create pictures that didn’t necessarily require the skills of qualified artists, although some of the pieces created were just fabulous!

Brusho Inks

We celebrated Chinese New Year with a visit from Joan Chiung who treated us to some home-made Chinese food and a fascinating talk on traditions surrounding the Chinese New Year Celebrations.

We learned to speak and write 10 simple Chinese words and Joan brought Chinese calendars and other traditional pieces for us to discuss.

Pancake day was an excuse for a treat during a recent Good Life Club. Our Associates made a mountain of pancakes for us all to enjoy with a multitude of toppings to choose from.

Chinese New Year

Pancake day

FOR MORE INFORMATION ABOUT THE SALFORD INSTITUTE FOR DEMENTIA: Visit: www.salford.ac.uk/salfordinstitute-for-dementia Tel: 0161 295 2363 Email: dementia@salford.ac.uk @InstForDementia Salford Institute for Dementia