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‘Involving Older People: meanings and methods’BSG Scotland’s Conference, 14 June 2010
Edward McLaughlin and Ross Campbell
June Andrews and Irene Oldfather
Dawn Skelton and Jane Robertson
Professor Roger Clough

The conference, held in the Iris Murdoch Building, University of Stirling, was organised by BSG Scotland and the Dementia Services Development Centre, University of Stirling. It was attended by 70 participants, approximately one third were academics, one third NHS and social work practitioners and one third from other caring and voluntary sector organisations. Although most participants were from Central Scotland, others came from further away, such as Aberdeen, Scottish Highlands, London, Surrey, Brussels and Northern Ireland. 

During the day, our keynote speakers considered involving older people from a range of different perspectives. In the morning session, chaired by Professor June Andrews, University of Stirling, Professor Jill Manthorpe, King’s College London, spoke on Involving older people: vulnerability and adult safeguarding. Jill spoke first about the OPRSI Team, involving people aged 60+ years in research as older people, not necessarily as users or carers. Older people are also involved as consumers of research in various ways. In the National Elder Abuse Study (funded by Comic Relief), older people were involved in the preparatory stages, advised on language and expression and enabled the team to take a more gentle approach than asking directly about ‘abuse’.

Older people had also been involved in policy and practice research for the No Secrets review in England, and in a study that looked at older people’s views of systems, such as the Independent Safeguarding Authority (ISA). Jill spoke about the new ethical system in England, about definitions of safeguarding and where to draw the line. She concluded that researchers must be clear about the purposes of involvement and co-production, think through support and reflect on what worked. ‘At my age I want it to make a difference’ was a key message from older people.

Edward McLaughlin and Ross Campbell, members of the Scottish Dementia Working Group (SDWG), spoke about Involving older people with dementia. They talked movingly of their personal experiences of dementia. SDWG, run by members who all have a diagnosis of dementia, aims to be the voice of and for people with dementia in Scotland. Eddie and Ross described how the group started with support from Alzheimer Scotland. Members set the agenda and applied for funding from Comic Relief. Since its formation the group has campaigned on medical issues and respite care; met with Ministers and other politicians; submitted views to a wide range of organisations; played an active role in Alzheimer Scotland. They have produced three DVDs, worked with the Scottish Government in key areas, including the development of the new Scottish Government Dementia Strategy; spoken at conferences in Scotland and abroad; and contributed to the professional training of student social workers, doctors and nurses. Eddie described how they had taken part in over 100 activities, influencing politicians and others. A key message was: ‘We must earn respect by our actions’.  

Irene Oldfather MSP, convener of the Cross Party Group in the Scottish Parliament on Alzheimer’s, thanked members of SDWG for their inspiration and courage. Irene pointed out that it was not long ago that dementia was not talked about. As convener of the Cross Party Group (CPG) she was concerned to give voice to people with dementia and make them a priority on the political agenda. It is only in the last five years that dementia has appeared on the political radar screen. Whereas some CPGs are mainly discussion forums, Irene thinks this one should be proactive in pushing the agenda forward. For too long people with dementia had not had their rights respected. Extensive consultation led to the Charter of Rights, influenced by older people themselves. SDWG had been involved in the Charter of Rights and the Dementia Strategy. Irene said that we need to ensure that this is not just another piece of paper but must be properly resourced and put into practice. She pledged that ‘no door will go un-knocked and no stone unturned to pursue this’.

Briege McClean from National Museums of Northern Ireland gave the Tilda Gaskell Memorial Lecture. Briege spoke about the Live and Learn Project – an intergenerational approach. The project helps people enjoy old age by using the resources of the museums with people who do not usually visit museums. The project had secured Big Lottery funding for five years, including a budget for transport. Briege described examples of creative learning programmes, including folk museums giving demonstrations of traditional crafts on site; and a painting project for people with dementia. Drama and role play was also used, for example in a rural activity project. Briege illustrated the projects with photos and quotations which brought the activities and their benefits to life. Briege also spoke about two case studies of intergenerational practice. One involved Adelaide House Care Home and students from Queen’s University producing a book of memories and stories. The other involved Wise and Wonderful Women (wwwdots) and Cregagh Road Primary School children in the project ‘The way things were’. The project was very popular with the children and broke down barriers between older people and children. Briege concluded that the Live and Learn Project had produced very positive outcomes.  

During the two hour lunch session, participants were able to network, look at exhibitions and view the posters displayed. There were presentations by each of the eight poster presenters, with discussant sessions, chaired by Dr Pauline Banks. The session was well attended and presentations stimulated much interest and 

The lunch time session also provided the opportunity for participants to view our sponsors’ exhibitions, visit the BSG stand, and take a tour of the dementia-friendly Iris Murdoch Building. 

The afternoon session was chaired by Professor Alison Bowes, University of Stirling. Dr Harriet Mowat, of Mowat Research Ltd. spoke on Supporting the Spiritual Journey into old age: Voicing the spiritual. Harriet began by stressing that ‘We are all ageing. We are all involved’, and said that we all have spiritual needs and that ageing is a spiritual matter. Some people express their spirituality through religion. With Jim Simpson, health care chaplain, and Fran Marquis, artist and potter, Harriet worked with people with dementia to consider: ‘How can people with dementia and their carers stay connected and continue their spiritual journeys?’ The project used a participative action research framework. The data included: observation; story telling and listening; development workers’ notes and diaries; interviews with development workers and staff; informal talk with volunteers, older people and carers. Relationship building was approached through story telling and hearing; food and fellowship; listening and introducing. Shared spiritual agenda was identified by creating expressive space. Harriet stressed the importance of confirming the spiritual through exchange, for example of gifts, remembrance and stories. Relationship building, creating expressive space and confirming the spiritual all contributed to sustaining the ‘conversation’ of the spiritual.

Professor Emma Reynish, Consultant Physician, Victoria Hospital Kirkcaldy, addressed the topic Frail older people: assessing needs and discussing expectations. She discussed different definitions of frailty, on which there is no clear consensus. Frailty includes three domains: dependency, vulnerability, and co-morbidity. Emma commented that older people account for a significant proportion of emergency admissions to acute hospital care, but that assessment of needs in such settings mainly focused on physical health and did not assess more complex problems. Evidence showed positive outcomes of a comprehensive geriatric assessment (CGA) which includes physical health, functional ability, cognitive and mental health and socio-environmental situation. From the results of these assessments in Fife, a new concept was identified: Dementia +, dementia in the context of frailty. It was estimated that 26% of admissions of over 65s in Fife would have Dementia +. Data on numbers with dementia in Scotland showed only 45% of the predicted numbers; Emma thought that the difference is probably explained by non-diagnosis of Dementia +. She concluded that the challenge for the future was to provide holistic care in the context of evidence based practice.

Professor Roger Clough, Lancaster University, then gave a presentation on Participation and involvement of older people in research: the wider implications. Roger asked: ‘What is it that older people can do well in research?’ He said the key test of quality research is whether the findings make sense to the worlds of people about whom it is written. Roger explored ways of expanding opportunities for older people. He pointed out that older people can have roles other than as research subjects, for example to advise and guide on objectives and methodologies. Roger emphasized you cannot presume that older people have all the research skills that PhD students take years to learn. We need to ask whether participants gained from involvement in the research and what difference was made to the outcomes. Many older people wanted something to happen as a result of the research. Roger concluded that participation challenges the model of a researcher investigating the researched; those contributing information are seen less as research fodder, more as mining their own experiences; researchers set out to understand the experience of others and older people can contribute to this.

At the end of the day, prizes were presented for the best posters to Christopher Lim, University of Surrey (first prize) and Pauline Banks, University of the West of Scotland (second prize).

All the speakers were very well received and stimulated wide ranging questions and discussion. The feedback was very positive for the speakers, posters session, lunch and other arrangements and suggests that the day was successful and an enjoyable experience for those who attended.

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