Involving Older Age: The route to twenty-first century ... · The Participants: Almost all were in their late eighties and early nineties and had either physical impairments or were

Involving Older Age: The route to twenty-first century well-being

Shaping our Age

The Five Local ProjectsJune 2013

Report Authors

Dr Martin Hoban, Research Project Worker, Shaping our Age

Vicki James, Research Manager, Royal Voluntary Service

Professor Peter Beresford OBE, Director, Centre for Citizen Participation, Brunel University

Jennie Fleming, Reader in Participatory Research and Social Action, Centre for Social Action, De Montfort University

Cover images: Participant in discussion: Strong friendships were made through working together;

Discussing the past; Friends group meeting and Group photography session

3Involving Older Age: The route to twenty-first century well-being Shaping our Age

AcknowledgementsWe thank all our participants in the five localities in which we worked for joining us on the journey of exploration into involvement and well-being. Whether they were involved in our project only briefly or for the longer journey, all their contributions are greatly appreciated.

We are grateful to our WRVS/Royal Voluntary Service hosts in the five local projects and to all staff and volunteers who supported our work in the Borders, Lancing, Kirklees, Sheffield and Thanet.

We thank those who produced the photographs for this report and for other reports produced as part of Shaping our Age: Glenn Edwards, Four-One-Six Media, Jan Hamblett, Diane Hinchliffe and Gavin Joynt. Thanks also to Glenn Edwards for the photo-films featuring our work in the Borders, Lancing and Thanet and to Four-One-Six Media for the photo-films featuring our work in Kirklees and Sheffield.

Sincere thanks go to our four Involvement Workers who stuck with us through thick and thin and for their energy and inspiration. Although by no means everything they produced could be included in our reporting, they have all informed the project’s wider learning.

Diane Hinchliffe: Kirklees and Sheffield

Chiara Vagnarelli: Lancing

Zenia Wainwright-Melnyk: Thanet

Elizabeth Walthew: Scottish Borders


Contents

Acknowledgements 3

Introduction 5

1 Borders Project, Scotland 8

2 Kirklees Project, West Yorkshire 15

3 Lancing Project, West Sussex 25

4a Sheffield Project - Northern General Hospital 34

4b Sheffield Project - Darnall Dementia Group 41

5 Thanet Project, Kent 52

6 Conclusion 63

Shaping our Age Reports and Photo-films 65

Other References 66

Appendix 1: Methodology – Further Details 67

Appendix 2: Creative Approaches 69


Introduction

Shaping our Age was about involving older people in improving their well-being and the well-being of others. It was a unique partnership project between WRVS, now Royal Voluntary Service, the Centre for Citizen Participation at Brunel University and the Centre for Social Action at De Montfort University. These three organisations share a commitment to involving older people in improving their well-being.

Shaping our Age was designed to provide new ideas and insights to the new and emerging issues around ageing. The project aimed to connect and interweave two key concerns: older people’s well-being and their involvement. We made a direct link between these two concerns because of the repeated failure to support and enable older people to be meaningfully involved in issues affecting their lives. This was important given the increasing numbers of older people and ever tighter resources for state support.

Shaping our Age was a participatory research project and was funded by the Big Lottery Fund for three years from 2010 to 2013. Its objectives were to:

• Explore how older people understand and define their well-being

• Develop participatory ways for older people individually and collectively to improve their well-being

• Provide the learning that can help to enable and support older people to improve their own well-being and the evidence base and tools for providers, commissioners and policy makers to transform the way they support older people’s well-being.

The project was implemented through four phases:

• Phase One: National consultation on well-being with a diverse range of older people across the UK

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Introduction

• Phase Two: Defining well-being indicators and the selection of five WRVS services to participate in five action research projects

• Phase Three: Local activities and action research in the five sites

• Phase Four: Dissemination and action.

This report presents a summary of the learning from each of the five local projects in Phase Three. For a fuller understanding of the project; its overall aims, methods, findings and recommendations it is necessary to read the accompanying Final Report (Hoban et al, 2013).

The approaches to the local projects were influenced by a number of factors:

• The skills, experience and working practices of the individual Involvement Workers who were recruited to facilitate initiatives with older people in the five locations

• The well-being indicators defined by older people arising from the national consultations (See Appendix 1)

• The principles of participatory research identified in the original bid to the Big Lottery Fund and presented in Appendix 1

• The local participants: their interests, abilities and aspirations

• The local contexts in which the projects were situated

• The requirements of the overall project as defined by the original bid to the Big Lottery Fund

• The management and professional supervision of Involvement Workers by members of the Shaping our Age Research Team: Vicki James, Royal Voluntary Service/WRVS Research Manager and Martin Hoban, Project Research Worker.

In the following chapters of this report we present separate summaries for the detailed work in each of the five projects which includes the learning arising from each.

1 Borders Project, Scotland

2 Kirklees Project, West Yorkshire

3 Lancing Project, West Sussex

4 Sheffield Project, South Yorkshire

a. Hospital consultations project

b. Darnall Dementia Group project

5 Thanet Project, Kent

The Aims of the Shaping our Age interventions in each project were:


Introduction

• To test out innovative approaches to engage older people in improving their well-being

• To identify the barriers to involvement they have encountered and how these might be addressed

• To identify the learning from this work to inform service delivery and practice for working with older people

• To make recommendations for change

It is important to note that in all projects, the methods and techniques used by the Involvement Workers contributed to an overall approach with involvement leading to individual and social well-being as the main objectives.


1: Borders Project, Scotland

Local Context: Royal Voluntary Service/WRVS Social Centres in Jedburgh and Kelso. Older people attend on a referral basis for one or two days a week and are provided with transport to the Centres. Both Centres provide breakfast, lunch and afternoon tea as well as a range of physical activities, games, crafts, trips, talks and entertainment. Each Centre has a Royal Voluntary Service/WRVS Deputy Service Manager and a group of volunteers.

The Participants: Almost all were in their late eighties and early nineties and had either physical impairments or were in the early stages of dementia. Most lived alone; had high support needs, limited mobility and memory issues. Roughly a third of them were men.

The Involvement Worker: Liz Walthew working two days a week for 13 months from March 2012 to March 2013.

The Approach: Working within a values framework of building trusting face-to-face communication with participants, the Worker mainly used the following methods: observation, meaningful conversation, facilitation and small group work. Activities centred mainly on discussion, memory work and games. The Involvement Worker had weekly contact with participants in the two Social Centres in Kelso and Jedburgh.

Project outcomes and sustainability: Key learning to inform practice and policy; a person-centred training programme developed and delivered; photo-film. Also a capacity building team funded by the Change Fund for a year in the first instance will liaise with a small group of people in the Kelso group to explore the potential for a community drop-in centre for people isolated in the community who are not eligible for the Social Centres.

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Key Learning

This section draws from the overarching learning we have distilled from the fieldwork in the two sites.

Acknowledging what already exists

There are already practices and services in place that create the necessary conditions to engage older people. These include:

• Social Centres within communities offer opportunities for older people to get out and mix with others

• Committed staff and active volunteers (many of whom are older people) benefit from being involved and take an active role in improving the well-being of service users

• A supportive policy environment for involvement. Government, local authority, health and third sector initiatives within the area which are concerned with supporting older people’s involvement in improving their well-being

• Available, accessible and affordable transport services: a vital resource to enable older people to access the Centres.

Key learning from the fieldwork

Involvement needs to be appropriate: An important question to emerge from our research in the Borders is to what extent older people in Centres can be more involved in shaping the services they currently receive and, indeed, shaping new services that will improve their well-being. For this group of older people, who could be seen as having high support needs, involvement was not necessarily about running activities or being in control of the Centres but rather about raising their expectations in wanting to engage in something that improved their well-being. Crucially it was about providing opportunities for them to be more involved in decisions about their own care, the services they receive and their involvement within the Centres. In addition, there needs to be opportunities for them to grow and continue to develop as human beings.

We observed two approaches to working with older people

1. ‘Doing to’ approach: An organisation-led approach that focuses on a medical view of participants and sees providing stimulation and activities more in terms of entertainment rather than meaningful engagement. There is also an emphasis on timetabling and task-focussed programmed activities. This culture of working



with older people can be sometimes patronising and may unintentionally create dependency on the service.

2. An involvement-led approach: Evidence from the fieldwork suggests that an innovative involvement-led practice to work with older people would help to increase involvement. This is particularly important with people with high support needs. The primary focus of this practice in this instance is to start where people are ‘at’ and to draw on their own experiences, knowledge and interests - in particular, how the potential of people can be supported to help them improve their own well-being and that of others.

The value of a conversational approach. We found that participants gain a sense of well-being from engaging in meaningful conversations with staff and volunteers. Participants value chatting and talking and when someone shows an interest in them. They also value the links that having conversations makes with other people. Being with others, company, talking, socialising, being treated equally and having a laugh also links with their sense of personal and social well-being. We also found most of the existing communication was between the older people and the staff/volunteers rather than between the older people themselves and participants were not gaining benefits from communicating with each other. The following quotes from Centre users reveal the value of conversation between older people at the Centres and how the group experience facilitated by the Involvement Worker brought real benefits:

Meaningful conversations also brought satisfaction to people working with older people. A member of staff said:

This comment from the Involvement Worker, further illustrates the benefits of meaningful conversations:

Often when I talk to one person others round about join and we end up with a more open conversation involving several people and they felt this was a real benefit as it is the only way that some of the older people join in.

That conversation over the game of cards is what this job is really about. It was fascinating for me and I feel I’ve had a much more satisfying day.

We must have more chats like that one today. I loved hearing other peoples’ stories of the war. I haven’t laughed so much for ages.

I enjoy just coming to the Centre but I enjoy it even more when we are all doing something together. Hearing what other people say is interesting and encourages me to have my say too.



One participant in the early stages of dementia identified how he had been encouraged to participate in conversations and the Involvement Worker’s part in helping him to do this. The Involvement Worker described what happened:

The importance of starting conversations from the interests and experiences of older people was highlighted. This example from the Involvement Worker shows how this approach can encourage the conversation to flow and how the service user can be encouraged to talk openly about their feelings. In this instance, conversation helped this participant to realise how much he appreciated his current living circumstances:

Education and training is required for an Involvement-led practice: A question to emerge in the early stages of this particular project was to what extent it would be possible to enhance the existing practice of staff and volunteers through education and training to inform a more involving approach. This led the Worker, in consultation with the research team, to work towards developing a training course on communication, person-centeredness and equality. Working with an external trainer, the Worker organised a pilot training course on communication, person-centeredness and equality and this was attended by staff and senior volunteers. A full account of the training is available in a separate report (McCall, 2013).

The training course was well received. One of the participants on the training course said:

He enjoyed the big conversations which I initiated as people who don’t normally speak joined in and it was good to listen to what others had to say. He said that during the conversations he listened and this helped him remember what he wanted to say as he could remember what the previous person had said. He said it was important that I was there facilitating and controlling –‘it made it okay to say what I wanted to’. He is concerned about his memory and feels that this inhibits him initiating conversations with others as he regularly forgets what he was going to say: ‘it’s okay to forget with you but I think others blame me.’

He talked at length of how it had been lovely to see them (son and family from Canada) and he told me some of the things that occurred whilst they were with him. But he also noted that it was good when they left. I asked questions about the visit and his feelings and he realised he had got used to living on his own and actually enjoyed it which he hadn’t really noted before.

I thought, crikey. Treating people with respect. It really starts off with Carl Rogers. I’ve been engrossed – yeah, well impressed with it – self personalisation, positive regard …



The training participants appreciated learning about person-centeredness and having the opportunity to meet together with staff and volunteers from other Centres to share experience and good practice. They also valued the fact that the training had been tailored to fit the Social Centres. They said that it would be useful as part of induction of new staff and volunteers to the service and hoped that the training would continue. These are some of the comments from the course evaluation made by participants:

The best thing about taking part was:

I think it would have been better if:

Participants were agreed that the two half-day training course was interesting, useful, valuable and thought provoking but most said that they would have liked it to have been longer.

What barriers exist to extending an involvement-led approach within services?

A belief among staff and volunteers that sufficient involvement is happening. However, the models of existing practice do not necessarily help older people to be more involved and thus have opportunities to improve their personal and social well-being.

Seeking to engage older people in a more participatory way is not a familiar experience for many. Participant sometimes have low expectations about their abilities to do things for themselves and to be more involved in decisions about their lives.

Was fit for purpose and very user friendly

The group discussions on all topics were very thought-provoking

Leaving with some very good ideas for the future

Good to go over scenarios and techniques and choices for use

Sharing experiences, enjoying the discussions, sharing practicalities

Learning about experiences of other Centres

Learning more about Social Centres

We had more of this. First training I’ve been invited to in a year and a half of volunteering.



Shaping our Age Involving Older Age: The route to twenty-first century well-being

Poor health and impairments can affect levels of involvement and lead to isolation within Centres. Some people with dementia, deaf people and others find it difficult to participate in conversations and group discussions. One of the local Managers said:

Volunteers not having enough time with preference given to practical tasks over building relationships with older people.

Traditional approach to service delivery. Older people are not necessarily involved in deciding and choosing activities. Focus can be on entertainment, practical tasks and timetabling/programming.

High support needs of some volunteers. Some volunteers can sometimes have as many or more needs as service users and require a great deal of support. This can act as a barrier as service users may not receive the necessary support to be more involved.

Recommendations

Older people can be involved both in shaping their own well-being within Social Centres and in informing services and policy which can promote social well-being within the Borders communities. However, this will require specific organisational policy actions to bring this about:

1. We need to start seeing older people in Social Centres in terms of what they can still do and achieve rather than as passive recipients of services and activities. To do this, staff and volunteers need to adopt an involvement-led practice that is fundamentally about listening to older people, finding out what is important to them in their lives and working with them to improve their well-being.

2. Adoption of involvement-led practice by organisation, staff and volunteers. There needs to be clarity about what level of involvement is appropriate for the older people concerned. To identify people’s starting points and work with them individually and/or with others.

• Targeted recruitment of staff and volunteers with appropriate ethos, values and people skills to work within this approach

• Induction and clear roles for volunteers as part of this approach

Poor hearing is the main one (barrier to involvement) – buzzing in the ears – trying to get tuned in – yeah, hearing pure and simple and it’s difficult to overcome that. They do want to get involved and it must be annoying and they don’t want to be a nuisance.



• Organisation, management support and supervision of staff and volunteers to work within this approach

• Obligatory face to face/group training for staff and volunteers which would include:

• Training for person-centred and social model approach to working with older people

• Individual work/group working

• Facilitation skills

• Modelling practice

• Equality issues

• Dementia awareness

• Development of appropriate criteria to monitor and evaluate improvements in both personal and social well-being among older people

• Opportunities for staff and volunteers to share concerns and good practice.

3. Build partnerships with national and local supportive policy initiatives such as Reshaping Care and Wisdom in Practice who are concerned with supporting involvement. In addition, work together across the third and statutory sectors, particularly at local level, to encourage involvement and well-being, intergenerational work, sharing expertise and to maximise funding opportunities.


2: Kirklees Project, West Yorkshire

Local Context: March 2012 to October 2012: The Involvement Worker engaged with older people and volunteers in a Royal Voluntary Service/WRVS Befriending service, Good Neighbours, Lunch Clubs, Darby and Joan club, volunteer led social clubs and volunteer coffee mornings. In addition, the Worker made contact with a variety of small voluntary organisations, church and pensioners groups within the Kirklees area, running guest speaker events on well-being and involvement and modelling an involvement-led approach through creative engagement. The Worker also established contact with a range of organisations working with older people including Kirklees Council and Age UK.

Participants: Older people, staff and volunteers engaged in services provided by Royal Voluntary Service/WRVS and other organisations including older men and women from the Asian Muslim and Sikh communities. These were ad hoc or one off interactions, not generally sustained over more than a few occasions.

Review of context: In October 2012, and following learning and operational developments in the Royal Voluntary Service/WRVS Kirklees service, the research team reviewed the intervention within local Royal Voluntary Service/WRVS services and decided to focus our engagement with older people outside of the service with groups in the broader Kirklees area.

Local Context: Participants and groups October 2012 to February 2013

• Small group of residents in Batley sheltered housing complex. The Worker met with this group weekly over two months and assisted group formation to discuss their activity preferences which resulted in them creating a knitting project to make blankets for third world countries. Four regular members of the group were women aged in their late 60s to 80s. From time to time other women and

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men joined in to socialise, to play games or in the case of one woman to make and sell cakes.

• Small friendship group in Huddersfield sheltered housing complex. The Worker met weekly with this group over three months. The group comprised varying numbers week to week but there was a core group of two men and three women aged between 74 and 90 years; two of them with multiple impairments (sight, hearing, short term memory loss, depression, restricted mobility, diabetes). The Worker assisted formation of the friendship group which included coffee morning, seated exercises and baking mince pies together for Christmas.

• Former carers and bereaved carers group in Huddersfield. The Worker facilitated the group to meet, discuss and try out some activities including calligraphy, art, poetry, reminiscence and working with computers. The Worker met weekly with this group over five months. There were five regular members of the group; three men and two women aged between late 60s to 80s. One of the men had dementia and was cared for by his wife who also attended.

• Blind and visually impaired people. Comprised older people; three men and three women aged between 69 and 92. This was a single session where the Worker and the group carried out creative activities exploring the relationship between well-being and the senses.

The Involvement Worker: Diane Hinchliffe working two days a week for 13 months from March 2012 to March 2013

Approach: Working within a values framework of building trusting face to face communication with participants, the Worker mainly used the following methods: observation, person-centred communication, individual work, small group work, facilitation. Activities centred on coffee mornings, discussion, creative and experiential activities, baking, poetry, knitting, crochet, photography, calligraphy, seated exercises and computer skills.

Project outcomes and sustainability

• March 2012 to October 2012: Recruitment of two Royal Voluntary Service/WRVS volunteers from the Asian community; positive learning and contacts for the local Royal Voluntary Service/WRVS on engagement with Asian communities; through networking raised the profile of the local service; raised awareness amongst older people of the importance of their involvement through creative guest speaker events at a number of older people’s clubs. See Appendix Two for collages and poetry produced during this period. Identified some gaps in service provision locally including a need for support for people who are bereaved including volunteers when they lose service users; people in their 50s who have suffered strokes, social groups for men.



• October 2012 to March 2013: Key learning to inform practice and services; formation of two new groups in sheltered housing now receiving support from Royal Voluntary Service/WRVS; former carers group now supported by local organisation, Making Space; photo-film of the work in the three main groups.

Key Learning

The Worker intervened in a wide range of different contexts, with a diversity of participants and used innovative methods to engage and support older people to be involved. This section outlines the key learning.

• There is emerging evidence that older people are looking for something different from the traditional services targeting them. Some said that they are more interested in active clubs and the University of the Third Age (U3A) was given as an example. Older people also said that they would appreciate having a say in the services they receive:

A contact from an organisation working with older people said:

• A key finding is that it is necessary to engage directly with older people, create opportunities whereby they can identify what is important to their well-being and work with them to create individual and collective solutions. Be prepared to change the activity if it no longer holds interest and work with older people to identify new interests and activities.

• Another important finding identified is in relation to the approach adopted by the Involvement Worker. Based on this approach, we have identified three key elements, which can inform a way of working with older people that can enhance their well-being. These are values, methods and activities. Important learning about this role from this context include:

• Making contact with older people and having no predetermined agenda

• Being alongside people in the setting – listening, talking, sharing

• Valuing difference

We are not asked what biscuits we like

Older people are not consulted enough

It’s not that they don’t want services; it’s just that they are getting savvier about how to spend their money, on what services, in meeting personal needs and interests.



• Working in small groups

• Valuing the experience and knowledge of older people

• Identifying participant interests from active listening

• Facilitating informal discussion and the generation and sharing of ideas

• Use of creative, meaningful and relevant activities.

Some of the comments arising from participants in the groups highlight the benefits for them of the Involvement Worker’s approach:

The sheltered housing scheme coordinators added other positive aspects of the Involvement Worker’s approach:

• It is important to see individual older people within a wider context. For instance as part of supportive families, friends and communities.

• Having good relations with the local authority and other third sector organisations to create a supportive local environment for involvement and promoting well-being: in this context, the importance of building links with Kirklees Council and linking with any support available. This partnership approach is particularly important when seeking to engage with groups who may be experiencing exclusion such as black and minority ethnic communities.

• Having committed and active volunteers both within and outside Royal Voluntary/ WRVS Service (most of whom are over 50) who benefit from their volunteering

I feel part of this group – whether you’re sat here talking or not talking, you feel part of it.

When we come in the lounge in a group, I go back to my flat and I just feel different … I just feel contentment from coming here … something lifts from me.

These last three weeks have been interesting, really interesting.

Something completely new, completely different … yes, I like that.

Well, I would say for myself it’s given me a great deal more confidence.

You (Involvement Worker) are always there to listen to what we say. You always have patience with us. You help us to understand …

She goes at the right pace … encourages … looks at the person.

She’s genuinely caring about the people that she’s working with … they felt respected and listened to.



and some of whom take an active role in improving the well-being of older people.

• Learning from local examples of good practice where volunteer-led activities seek to enable older people to become more involved. Local examples of good practice in this context include Lindley Chimes, Dewsbury and District Pensioners Association and Denby Dale Centre and its befriending service.

• Reaching out to older people where they live and meet rather them expecting them to use existing services to begin with. For instance, the Worker created a space in two sheltered housing complexes to create opportunities for engagement that led to the formation of two small groups.

• The importance of having a space to belong. This Involvement Worker aimed to create a therapeutic space for participants by arranging the seating for informal group interaction and use of music to create an environment to reflect the mood of the session.

• Starting the engagement with the lived experience and interests of older people and working from there. During this process, the importance of posing open questions to enable people to identify and pursue their own interests individually and with others. For example, in one of the groups, the participants decided that they wanted to have gentle exercise sessions. The Involvement Worker provided balls and bean bags and the members themselves suggested the activities based on their past experience of similar activities. They made the decisions on how much time should be spent on exercise and that exercise should be followed by refreshments and discussions.

• One-off activities and group discussions can work well for people’s input in developing ideas for service improvements as opposed to setting up a new group for this purpose. Also one-off visits can be useful for developing creative activities.

• Chatting over tea and cakes, feeling socially and emotionally supported, is equally as valid for individuals as is participating in an activity. One participant mentioned the importance of conversation alongside the activity:

Others mentioned other benefits:

Playing these games – helps your brain to be active.

Talking to one another just wakens your brain up.

Laughing, a bit of fun, making one another laugh.

You get fed up of sitting on your own and you’re knitting as you talk … about where you used to live and things like that.



Learning for involving disabled older people

There is an interface between disability and ageing. Many people age with physical and mental impairments and others acquire these as part of the ageing process. Disability raises issues about involvement and, in particular, the nature of the support required to involve older disabled people. In addition, the challenge of including people with dementia needs to be addressed by service providers. What follows are a few examples of how the Worker sought to engage older disabled people:

• An older woman with a visual impairment was unable to play tabletop games. This acted as a barrier to her being part of the group. The group, with support from the Worker, created a large print snakes and ladders game. Two women and one man – all service users - designed and made the board game. This removed the barrier and provided the opportunity for the woman to participate with others. The Worker said about this activity:

This led to a sense of pleasure in achievement for those who created the board:

• Supporting an older woman who was a wheelchair-user in a sheltered housing complex to attend meetings and to be part of the group. In addition, identifying with the person that she could make a contribution as a teacher of crochet and knitting and thus helping her to feel more confident and involved.

• Supporting people to be more involved through discussion of their interests and offering encouragement. One woman with a visual impairment started a group session as an observer and felt that she could not participate. After some encouragement and support, she played a few games of dominoes with the other women in the group and was pleasantly surprised by what she could do.

• Spending time to help disabled and visually impaired older participants to complete evaluation forms to enable them to have their voice heard and to inform the research.

• Using creative activities with blind and visually impaired people: for instance, the use of an activity that uses the senses as a means to explore subjective feelings and thoughts on well-being. An example of this is when the Worker created a poem with words shared by participants around an activity on well-being (see Appendix 2).

I encouraged the residents to complete the tasks in making the board and only helped if required.

We’re pleased aren’t we?



• In one of the groups, a carer wished to discuss how to involve her husband who was a person with dementia. It was recognised by the group that he could not readily engage with the group’s activities. At the same time, they acknowledged that just being in the group was beneficial as he liked to be around people. The carer would not have been able to attend without her husband being with her. The other participants in the group accepted his presence and saw him as a member of the group.

• The timing of sessions was seen as important for carers of people living with dementia. An afternoon start was valued most.

What barriers exist to extending this approach within services?

We have seen at first hand the vital work undertaken on the ground by Royal Voluntary Service/WRVS staff and volunteers and other organisations in providing services to older people. This work clearly makes a valuable contribution to the well-being of older people. We have also found that older people when given opportunities and support can make an important contribution to their own well-being and that of others. At the same time, we found that significant barriers exist to extending an enabling approach to services and practice. A number of barriers have been identified. These barriers have been drawn from the Worker’s broad involvement in both the early and late stages of her work in Kirklees.

• ‘Doing to’ culture: An organisation-led approach that focuses on a deficit model of older people. This is sometimes linked to a traditional approach to organising activities that reflects the requirements of organisations rather than what people want for themselves. These activities are often not productive as the trend is that these only last a month or so and then everything drops off as people lose interest. There is also a sense of passive engagement in such activities that are mostly run by external providers with minimal involvement from older people.

• Traditional older people’s groups as presently organised are not very accessible and inclusive for people with visual or hearing impairments, wheelchair users, older people with learning difficulties and older mental health users.

• Resistance to group involvement. We found that this is a complex area and that a number of factors militate against involvement. These include:

• Some older people feeling they have little to offer and lack self confidence to be part of groups

• Not wanting to be associated with stereotypical models of older people’s services. One participant summed up her attitude:



• Involvement is associated for some people with traditional groups and the formal roles, responsibilities and formalities involved

• Not wanting to take responsibility and take on the necessary commitment for leading groups. There is a link here with the previous point as perceptions of leadership are sometimes seen in traditional terms (for example, chairperson and committees roles) and in terms of organising activities. Participants said:

The Worker found that there was little recognition from participants of their significant contribution to making decisions within the groups established and supported as part of Shaping our Age.

• Some older people feeling too old to get involved and preferring to have things done for them and looking to younger people to fill this role.

• Ill health and restricted mobility act as barriers and can prevent people from going out to pursue their interests and to socialise:

• Sheltered housing, while having benefits can also be an isolating experience for some. People can be isolated in their own rooms and there can be a feeling of emptiness and ‘lack of life’ in these buildings. The sheltered housing centre appears, in some cases, to create dependence on leaders/others to organise programmed activities such as bingo and fish and chips. A coordinator of a sheltered housing complex identified a mindset of dependence amongst service users:

I would dread to think I’d be going to a Darby and Joan Club … I think it’s how you feel; how you look at other people … I just don’t want to go there.

It’s as if independence gets left behind at the door.

Paid workers in the area can run these things for us.

I just want to be led.

When I had my stroke and they got me walking again, I had visions of me in about six months going out and getting the bus and going off myself … I just couldn’t do it … I couldn’t go on my own, would have had to have somebody with me … very frustrated.

One of the big, big problems with older people, for their mental and psychological health is isolation.



Recommendations

1. An organisational commitment to involvement which is linked to local service development and the improvement of older people’s well-being

2. Recognise that older people know best how to improve their own well-being

3. Recruit, train and support staff and volunteers for an involvement-led practice. In particular, the importance of taking on board communication and engagement skills. Key areas identified include:

• Recruitment of staff and volunteers with the appropriate values and qualities for engagement work

• Training in person-centred communication for individual and group work and the involvement of older people in developing and delivering this training

• Listening and support skills

• The importance of sufficient time to provide quality contact

• Exploring service roles and strengths of volunteers so that they could contribute more effectively to the service

• Training on bereavement and loss for volunteers as many have to cope with the ending of relationships with older people after a substantial period of commitment.

4. Transform the model of service delivery to individuals and groups to ensure that older people are not just provided with an activity but are actively involved in identifying, developing and organising activities that can enhance their personal and social well-being. This is particularly important in addressing the needs of younger older people who are looking for more active involvement.

5. The value of small groups in enabling this process to happen. Small groups are an approach that can facilitate involvement and enable participants to share experience and skills and provide mutual support.

6. Explore further the value of creative activities which have been tested out by the Involvement Worker in Kirklees and particularly once off and group activities.

7. Acknowledge that some people prefer one to one support as opposed to being part of a group.

8. Involve and support older disabled people and people with dementia

• More awareness among staff and volunteers of the barriers faced by older disabled people in getting involved and how these can be overcome

• Practical and other support to provide the necessary support and encouragement to enable older disabled people and those with restricted mobility, health and sensory impairments to be involved



• Training in equality issues (including addressing ageism)

• Further research to explore how people with dementia and their carers can be more involved in service development

• The use of appropriate creative methods and activities for communication, one to one work and group activities.

9. Engaging black and minority ethnic communities

• Challenging often false assumptions that black and minority ethnic communities have support from extended families and, therefore, do not want/require support from external organisations. Also acknowledging lack of confidence of older members of black and minority ethnic communities to access external service provision and finding ways to overcome this: for example, providing multi language literature

• Building direct contact with black and minority ethnic communities via outreach work and no longer expecting them to access services but reaching out to explore partnership working.

10. Address challenges that some older people are feeling too old to get involved, do not want to be associated with traditional models of older people’s groups and do not want to take responsibility and traditional leadership roles.

11. Support the availability of accessible and affordable transport for disabled older people and particularly for those living in rural and dispersed communities.

12. The Challenge of accessing more isolated people. For example, the challenge to involve men in groups and activities, as they are perceived to be more solitary, less mobile and not able to easily access support. We believe that more research is needed in this area.


3: Lancing Project, West Sussex

Local Context: Royal Voluntary Service/ WRVS Chesham House Community Centre, Lancing: Chesham house offers a range of activities for older people including Chess, Scrabble and Cribbage clubs, Lunch Club, monthly Bingo sessions, reminiscence sessions and gentle yoga exercise classes. Its meeting rooms are hired by local groups including the local University of the Third Age. A Royal Voluntary Service/ WRVS community transport service operates from the Centre and office space is occupied by Adur Voluntary Acton. During the time that the Shaping our Age Worker was based at Chesham House, the new Royal Voluntary Service/ WRVS ‘hub’ structure was introduced and a new Locality Manager was based there from January 2013 to develop a range of new services.

The Participants: The group comprised five women and seven men ranging in age between 73 and 86: seven in their 80s and five in their 70s. Three of them had mobility problems (using walking frames/mobility buggies) and four were people with diabetes. All but four of them were living alone; one cared for her husband who was also a member of the group. The Involvement Worker engaged with this group weekly over 11 months.

The Involvement Worker: Chiara Vagnarelli working two days a week over 13 months from March 2012 to March 2013

The Approach: The Worker formed a group mainly comprising existing users of Chesham House and a few others from the local community. She worked with them in an involving way which encouraged open discussion, active listening and mutual support; taking advice from participants and acting upon it; recognising and openly acknowledging the skills of individuals; building their confidence and self-esteem and encouraging them to use their skills by taking on responsibilities and roles. Other methods and techniques used by the Worker included:

• Taking time, listening and building rapport

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• Taking an interest in individuals and demonstrating this by referring back to previous conversations

• Allowing time in meetings for discussions of interest to participants

• Taking advice from the participants around the location and timing of proposed meetings; setting charges for activities; design of newsletters updating on progress and posters promoting the activities.

• Being based at the Centre and building familiarity and trust with service users.

• Acting as facilitator not leader, encouraging people to converse and take the lead in running cookery sessions and group discussions.

• Circulating newsletters, updating group members, other older people and local organisations between meetings about the progress of Shaping our Age and giving information on future events and meetings.

• Keeping in contact with participants by individual letters and emails between meetings

• Creating a comfortable and inviting environment with refreshments

• Worker and group members providing a relaxed and friendly welcome to newcomers

Please see Hinchliffe and Vagnarelli, 2013 for more detail concerning this Worker’s approach.

Project outcomes and sustainability: Key learning to inform practice and policy; formation of an advisory group for Chesham House Centre and potentially for the developing Royal Voluntary Service hub. Known as ‘Friends of Chesham House’ the group developed its Terms and Conditions and elected three people into roles of responsibility. They became volunteers to continue with their role as ‘Friends’ as there was as yet no formal designation within the Royal Voluntary Service for user-led groups or forums. The group developed some self-help activity sessions including self-help computing, cookery advice and healthy walks. Members of the group formed close friendships with one another born out of working together for a common cause. The group contributed to a Shaping our Age outreach event held at Chesham House in November 2012. Called ‘Creating Connections’, this event involved delegates from local organisations who were concerned with addressing isolation and loneliness in older age. The Friends Group attended and took an active part in discussions. Two of them spoke at the event to the audience comprising 30+ delegates. The group was involved in preparing a short photo-film featuring their work. Before she left, the Involvement Worker tried to find a volunteer to fulfil the role of facilitator. She also worked with the members to build capacity and provide guidance on how to sustain the group. However, questions surround whether the group will be sustained into the future without support from a facilitator.



Key Learning

This section draws from the overarching learning we have distilled from the action research with the group which is now known as the ‘Friends of Chesham House’.


There were already practices and services in place that created the necessary conditions to engage older people:

• Local community support including organisations offering social groups, activities, clubs, outreach, transport and care for older people including voluntary and statutory sector organisations and churches

• Committed staff and active volunteers in Chesham House Centre and other local organisations (many of whom are older people) who benefit from being involved and take an active role in improving the well-being of service users

• A supportive working environment for involvement. Staff and volunteers in Chesham House Centre were committed to working with older people in an involving and inclusive way

• A supportive policy environment for older people’s well-being: Local authority, health and third sector initiatives in West Sussex including six Wellbeing Hubs which provide information, facilitate access to local services and promote healthy lifestyles.


Involvement-led practice – working with people to improve their well-being: The Worker took the time to listen to and encourage older people’s stories and to uncover any issues and concerns over well-being. She encouraged active participation and provided time and support for individuals to take part. Underpinning the approach was a belief that all older people, no matter what their personal circumstances or impairments, are capable of learning and development, can make valuable contributions and offer support to others. Having no pre-set ideas on what is possible; being led by the older people and responding positively to their suggestions were also central to her practice.

It is easiest to engage with people in their situation. Working in a Centre had considerable advantages. The Worker was able to get to know people quickly by joining in with their activities and engaging them in conversation whilst doing so. It was easy for her to form a group of enthusiastic participants.

Community Centres encourage social connectedness. Having somewhere



welcoming and accessible to meet with others for activities and social interaction provides significant well-being benefits for older people.

Supportive working relationships. A supportive and welcoming Centre Manager, staff and volunteers created an easy working environment allowing the Worker the freedom to develop her ideas and working practices without undue restriction.

The loyalty of the participants to and support for Chesham House Centre and the local Manager was a key driver in their commitment to involvement in Shaping our Age. The Involvement Worker was well aware of this:

The Worker’s approach of building on the existing services available in the Centre gained early commitment from the group.

Supportive organisational context. Local organisations in the voluntary and statutory sectors were interested in and willing to discuss the project and possible partnerships. The Centre Manager had a wide network of existing local working partnerships some of which provided opportunities for grant funding.

Older people need support to become involved in service development and delivery and funding should be provided for this. Support for the group was provided by Shaping our Age and included the Involvement Worker, meeting room hire and extra support for participation, e.g. transport costs, refreshments.

Skilled group facilitation is needed to support involvement. Our Worker was experienced in community work, participative techniques and creative engagement. She was committed to involvement, enthusiastic and sensitive and with a genuine interest in working with older people. Her facilitation skills were acknowledged by participants and staff alike. Participants said:

You know and if one person’s talking for too long for example, you can sort of bring us back in and let somebody else have a say.

I mean, you’ve made it more friendly by being personally interested in everybody. Most of the groups you go to, it’s more of a … you just go and do whatever you do and come away.

Some regular and local Centre users have said that it’s a way of them supporting the Centre and the Centre Manager who they see as working very hard at keeping the Centre up and running and meeting needs.



A member of staff at Chesham House said:

Keeping in touch through informal and formal communications between meetings helps to develop group commitment and bonding and kept members informed and on board. The Involvement Worker corresponded by letter and email between meetings and produced newsletters and posters keeping people informed about meetings and Centre events and activities (see Hinchliffe and Vagnarelli, 2013 for examples).

Help with transport is important for many. Limited mobility, inadequate public transport services and no access to private transport can restrict involvement for older people. Royal Voluntary Service/ WRVS runs a community transport service which supports older people’s involvement in services.

Recognise that ‘people are just happy to get together and socialise’. Some participants said that this was the main reason for joining the group; that it was something else to do and another opportunity for getting together with other people.

Older people are keen to help one another. For instance, participants agreed to cookery advice sessions to support a man who wanted help to improve his cooking. The evident need and persistence of this one individual was supported by the group. Participants highlighted the benefits gained from helping others:

One participant voiced his impressions of the role of the Friends group in spreading the word and getting more people involved in the Centre:

We all have our thoughts and I think if your thoughts are taken notice of then you feel quite satisfied … These people know what we’re thinking and our thoughts might help somebody else.

By belonging to this group I’m giving something back.

You know, if you’re doing something for someone else you do feel better.

If there’s a meeting of the group, I feel responsible to be here. And I think it’s a help that we all have our two penny worth to contribute. I feel quite proud to be a member of the group and able to influence things just a little bit.

I think Chiara has made us more aware of the fact that listening to people is much more productive and should be more deeply ingrained … Facilitating is listening and going with that – it’s listening, watching and learning …

Chiara’s been good at picking up what people might be able to do … she’s made them aware that they’re good at things – it definitely makes a difference to their confidence and happier I would say …



Shaping our Age Involving Older Age: The route to twenty-first century well-being

Achieving an outcome. The participants felt a sense of achievement and pride in taking an equal and active part alongside professionals in the Creating Connections event. For example, one of the participants who had a speaking role in the event had gained a lot from the experience. The Centre Manager said:

The participant in question was pleased that she had taken the brave step of speaking at the conference and that her talk was well received. The sense of self worth gained from the experience was evident:

The value of small groups. Working together in a group over a period of months and meeting together regularly forges deep and supportive relationships in which people feel sufficiently confident and relaxed to speak openly within the group. This is highlighted in the following comments from participants:


• Accessing isolated and lonely people for involvement in services is challenging. The Worker tried to access people not already engaged in

We are the core of the Centre and the object of the Centre was to sort of reach into the next outer and the next outer. In other words, we’re trying to spread it into the community from a small core.

She has gained in confidence through being invited to be involved in the conference and the fact that the presentation was very well received gave her confidence too.

Somebody said it was alright, but I hope it was … You know, it made you feel that you were part of what’s gone on in this meeting when you do something like that.

I think at this meeting we don’t mind speaking, whereas you might go to another meeting and you might think, oh, I’m not going to stand up and say anything …

… being one of the group I’m somebody because … you work with other people and you’ve made a mark on life instead of just being somebody that nobody knows anything about.

I think it’s a relaxing type of meeting this for ourselves … you can come here and relax and listen to what’s going on …

31Involving Older Age: The route to twenty-first century well-being Shaping our AgeInvolving Older Age: The route to twenty-first century well-being Shaping our Age


community groups and activities but this requires more time than was available to her, persistence and the active cooperation of other organisations.

• Ill health and limited mobility can restrict social participation. Lack of confidence in physical abilities, fear of falling and feeling vulnerable can lead people to stay at home which can lead to social isolation and loneliness.

• Sight and hearing impairments can make it difficult for people to fully participate in group social settings.

• Traditional approach to service delivery with rigid programmes and limited user involvement. Our work has revealed that an involving approach is not familiar practice. For example, a local partner charity aimed to introduce taster activity sessions to Chesham House Centre. It was agreed that the Friends group would be involved as advisers. However, when it came to it, the charity found it difficult to comprehend how working with the group could benefit them. This revealed a traditional ‘doing-to’ approach to working with older people.

• Time pressed local professionals. Opportunities for effective partnership working were limited by professionals who were often busy with wide remits, heavy workloads, their own timescales and targets and competing demands for resources and funding.

• Resistance to group involvement. Older people gave a number of reasons for not wanting to take on responsibility or become involved in other ways:

• Lacking self confidence; having low self-esteem; not feeling valued; having nothing to offer. These feelings often associated with bereavement

• Being too busy; having a full calendar

• Feeling too old and lacking in energy; feeling that younger people should take on roles and responsibilities for the group

• Not being prepared to be tied down; valuing the freedom that retirement brings; saying they have ‘done their bit’ during their working lives

• Suspicious; taking a long time to build trust in workers/initiatives

• Associating involvement with taking on traditional leadership and committee responsibilities which are daunting e.g. chair or treasurer. Participants in this group took on responsibilities without acknowledging their own contributions. For example, for clearing up, making tea, leading discussions, taking part in self-help sessions, public speaking in a conference. Eventually three of them even took on more formal roles of responsibility within the group.

• Organisational constraints can restrict the range of activities that are possible e.g. health and safety rules prevented the use of conventional cookers in the Centre for cookery demonstrations.



• Transport is needed to ensure that older people are involved in services. Limited mobility, inadequate public transport services and no access to private transport can restrict involvement for older people. Transport was highlighted by the Friends group as one of the chief barriers to involvement.

• Severe weather and early winter nights keep some older people at home when they would otherwise be out and about.

• Lack of knowledge on how to access information on services and support including e.g. financial advice

• Sufficient time and training is needed to develop a group so that it becomes self-sufficient. This varies according to the people involved; their skills and experience. For this group more time was needed to build the confidence and skills required for a continuing and sustainable role in the Centre.

Recommendations

The recommendations here would enable the group to move forward and to be sustained beyond the life of Shaping our Age. The recommendations would also build a context for involvement in the wider organisation.

1. A commitment to involvement within the organisation and recognition of its positive impact on older people’s well-being.

2. Recruit, train and support staff and volunteers in involvement-led practice and involve service users in the recruitment and training of staff and volunteers. Key skills areas identified are:

• Person-centred communication techniques: active listening; open questioning; focus on the individual; positive regard. Take as a guide the training course developed for the Borders Social Centres for use in Community Centres (McCall, 2013).

• Group facilitation knowledge and techniques: promoting individual contributions; taking on responsibility; mutual support; group cohesion; confidence building

• Allowing sufficient time for quality group and inter-personal contacts

• Disability equality training in how to involve people with impairments including people with visual and hearing impairments.

3. Actively involve older people in service development and organisation. Putting the older people first; being prepared to focus the service on them rather than the other way round. A service user forum model, like the ‘Friends’, should be replicated throughout the organisation. This would ensure that older people



are fully involved at all stages of service development, implementation and evaluation.

4. Provide training for older people in group facilitation and offer support in other ways to build and sustain the service user forum role.

5. Provide a budget to support involvement. This could be partly funded by participants but is likely to require further sponsorship. Funds could be required for:

• Transport

• Training

• Facilitation

• Room hire

• Refreshments

• Activity providers/speakers

• Materials for activities – e.g. arts and craft

6. Acknowledge that some older people feel they are too old to get involved and do not want to take responsibility and traditional leadership roles. Work with them to find out what is possible and appropriate for their well-being. Identify others who are willing to become more actively involved and work with them to encourage them to take on roles and responsibilities.

7. Support the availability of accessible and affordable transport particularly for disabled older people and for those living in rural and dispersed communities.

8. Try to reach isolated people and to encourage their involvement. Work in partnership with other local organisations to address this challenge. Work with existing service users to reach out to local contacts within their personal networks.

9. Working with other local organisations, ensure that older people are able to access the information they need to support their well-being. Ensure that information is available in a variety of formats and sources to suit different preferences.


4a: Sheffield Project - Northern General Hospital

Local Context: The Involvement Worker was based on an orthopaedic ward in Sheffield Northern General Hospital for four months in 2012. Her work focused upon the hospital experience of older patients including people living with dementia and their carers and contributed to a Sheffield Hallam University evaluation of a Royal Voluntary Service/WRVS on-ward pilot volunteer service. Whilst working in the hospital, the Involvement Worker also ran focus groups on the subject of hospital care with people living with dementia and carers in a community based dementia support group.

UK-wide it is estimated that 1 in 14 people (7%) aged over 65 have dementia, increasing to 1 in 6 (17%) of people over 80 years. In 2011 an estimated 6,382 people had dementia in Sheffield, expected to rise to 7,342 by 2020 and 9,340 by 2030. The largest increase will be in people aged 85 and over which will nearly double over the same period (www.alzheimers.org.uk).

It is against this demographic background and a growing interest in involving people with dementia and empowering them to influence services and policy, that Shaping our Age was involved in qualitative research with people with dementia and carers in Sheffield.

The Participants

A Hospital Consultations. The Worker conducted interviews with 32 patients and 11 carers. All patients were in hospital owing to hip fractures caused by falls. All but six of the patients were women and most were in their 80s or 90s. Nine of the patients had varying degrees of dementia. Patients stayed on the ward for an average of 20 nights.

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B Community Consultations, Darnall Dementia Group. Three focus groups with people aged between 61 and 92:

• Bereaved carers – three women and three men

• Current carers of people living with dementia - five women

• People living with dementia – three women, one man

The Involvement Worker: Diane Hinchliffe working two days a week from April 2012 to early August 2012. Following this period Diane moved to work with Darnall Dementia Group until the end of her contract (see Chapter 4b).

The Approach in the Hospital: Individual in-depth qualitative interviews with patients, or in the case of people with dementia, paired qualitative interviews along with their carers/relatives. Interviews were often split between several sessions to fit with the needs of patients and hospital routines. It was important for the Involvement Worker to be flexible in approach and sensitive to the constraints imposed by conducting interviews in a clinical environment. Purposive sampling was used to choose individuals for interview.

The Approach in Darnall Dementia Group: Focus groups with carers, bereaved carers and people living with dementia in three separate sessions. Participative activities were used in two of the sessions to stimulate thought and discussion leading to creative outputs including collage work and poetry (see Appendix Two).

Underpinning the approach in both settings was an understanding that people living with dementia form a highly heterogeneous group. Every participant was respected as an individual and there were no blanket assumptions made around their capabilities. Also, no matter what the degree of impairment, everyone was considered to be capable of offering helpful opinions.

Project outcomes and sustainability: Unlike the other Shaping our Age projects, the involvement work with hospital patients was short term and ‘consultative’. Although the Worker developed relationships over a matter of weeks with some patients, she was constrained from working with them in an involving way (see ‘Barriers’). It became evident early on that the development of a Shaping our Age ‘involvement’ project would not be possible on the ward and so when nothing new was arising from the interviews, the Worker left the hospital and started a new involvement-led project with Darnall Dementia Group. A report of the hospital consultations was released in December 2012 (James et al, 2012) and the evaluation report by Sheffield Hallam University drew on these findings (McDonnell, 2013).



Key Learning

This section draws from the overarching learning we have distilled from the work with patients and carers both in hospital and community settings.


There are already practices and services in place that create the necessary conditions to engage older people and in this context to support people living with dementia and their carers:

• The pilot on-ward volunteer service which supports people with one-to-one and group conversations, practical tasks and activities

• Committed staff and active volunteers in Darnall Dementia Group and other local organisations (many of whom are older people) who benefit from being involved and take an active role in improving the well-being of service users

• A supportive working environment for involvement. Principles of involvement are embedded in the ethos of Darnall Dementia Group.

• A supportive policy environment for involving people with dementia. Local authority, health and third sector initiatives in Sheffield which are concerned with supporting older people’s involvement in improving their well-being including people with dementia and their carers. Sheffield aims to be a Dementia Friendly City by 2015.


• Staying in hospital can be a stressful experience especially for people with dementia. Some participants coped well during their hospital stay. Some mentioned that staff were helpful, respectful and friendly.

However, there were more negative than positive comments including:

• Dissatisfaction with hospital routines and two associated extremes of activity – boredom or too much going on in terms of medical interventions

• Some staff with poor attitude to patients; not giving proper explanations; forgetting patients or making them feel as if patients were a nuisance

• Limited help at meal times for people who were unable to feed themselves or not motivated to eat and drink

• Feeling lonely especially when family were unable to visit

• People with dementia feeling distressed in the unfamiliar environment

• Anxieties about health, treatment and limited mobility



• Concerns about going home – whether they will go home at all or whether they will cope at home

• Whether people with dementia receive adequate attention and stimulation.

The following quotes from patients highlight some of these issues:

These comments from carers also highlight their own anxieties over hospital stays:

• The on-ward volunteer service offers support for patients and carers. Everyone interviewed thought the idea of the service was good for patients and carers and highlighted a range of benefits including company and conversation which lighten the spirit, divert patients from thinking about their problems and pain, break the daily routine and alleviate boredom. Support was considered to be particularly important for patients who do not receive visitors. Being moved away from their beds for an activity or group conversation was particularly beneficial. Carers with direct experience of the on-ward voluntary service gained comfort from knowing their relative was included. Carers without this experience would have appreciated the service visiting their own relative. The following quotes from some of the relatives/carers highlight the benefits of an on-ward volunteer service:

Boredom. Long days. Endless nights

I feel lonely very lonely … But my family’s doing what they can … I need them all the time if I can but they’re busy working. I want them here. They’re not here now – it’s half past three – I won’t see them till gone six and then maybe not again for two days

People think because you’re old that you’re not capable – given tea in a beaker not in a cup – like a baby

The trouble is, I worry you see. Will I go back? Will they take it off me (home)? Because I do want to go home

I mean, so many times they put me jug there and the glass there ... oh, and I could scream. I could throw it at ‘em. Because I can’t reach one and I can’t reach the other.

… he’s lost such a lot of weight and I think well if he was at home you know I’d know what he was eating … I’ve been bringing sandwiches in because he kept saying to me ‘I’m hungry’ …

He’s not known where he is, what he’s doing or anything and sometimes I don’t think some of the nurses are very helpful.



What barriers exist to involving older people to improve their well-being in hospital settings?

• Institutional barriers. The necessary focus upon clinical practices and procedures is priority on hospital wards and in the main, patients are passive recipients of those services. It was our experience that interventions which might challenge the traditional staff/patient relationship could be viewed with suspicion or opposition. Initiatives which aim to entertain or divert patients need to fit within the traditional roles of hospital staff, imposing a constraint on what is possible. The Involvement Worker proposed a creative project which was opposed for health and safety reasons and it was clear that any discussions around alternatives were not welcome.

• Busy staff. One of the intentions of the volunteer service was for group activities, games and creative pursuits. However, getting patients together requires hospital staff with the time to do this. Other priorities around hospital routines took priority and patients were rarely moved from their beds.

• Difficulties in communicating with people with dementia. This can be challenging but it is extremely important to keep people with dementia involved and stimulated. This requires the right staff and volunteers to be recruited and supported and for them to be thoroughly trained in person-centred communication and dementia awareness. On-line training is not considered to be adequate. The importance of recruiting people with the values to support people with dementia was highlighted by these carers:

It’s nice to think that somebody’s chatting to me mum about things that she’s interested in. You like all those old fashioned things don’t you, Mum?

She seemed really nice and she knew who she were and seemed familiar with her and obviously she was having a chat but I don’t know what about … it was singing or comedy or something like that wasn’t it? But you can’t remember what you chatted about … yes but she were right nice, personal touch and stuff.

… because different people will get on Ok with her, whereas others won’t so well. Different people will work better with dementia patients or with mobility issue patients or whatever. So, yeah, it’s about matching up …

Natural carers are born, not bred. Every patient is different; every day is a different day – volunteers need to gauge mood and respond accordingly.



• Absence of adequate communication between patients, staff, volunteers and carers. Many carers and patients were unaware of the on-ward service even when their relatives had received volunteer visits. The opportunity to engage relatives/carers in supporting the patient by communicating with the volunteers either directly or via patient diaries was often missed.

Recommendations for service improvements for hospital patients

1. Hospital improvements

• More socialising with other patients and a room dedicated to this

• Staff to treat patients in a dignified manner

• Carers to have open access to the ward to support patients with dementia

• Easier access to televisions and radio allowing individual choice.

2. Referral to the On-Ward Volunteer Service

• More information and a clear process for referral and selection

• Ensure that information about the on-ward volunteer service is always available including a ‘This is Me’ booklet at every bedside

• Introduce new patients/carers to the on-ward volunteer service as part of an induction to the ward

• Match patients with volunteers

• Facilitate a dialogue between volunteers and patients/carers

• A Royal Voluntary Service/ WRVS on-ward volunteer service coordinator to facilitate all of the above.

3. Operational suggestions for the On-Ward Volunteer Service

• Volunteers to find out about patients to cope more easily with particular behaviours; quickly respond to needs and identify topics of conversation or activities that the patients would appreciate

• Use the ‘This is Me’ booklet as an ongoing tool for communication between volunteers and carers

• Volunteers to introduce themselves and their role to patients and carers at each visit to a patient. This is particularly important when working with patients with dementia

• Volunteers to always wear the uniform



• Display on-ward information about the volunteer service

• Train volunteers in dementia awareness and disability awareness

• Allow carers free access to the ward to support patients with dementia

• Volunteers to be on the ward more often.

4. Suggestions for the Volunteer-Patient relationship

• Volunteers to use storytelling approach with patients

• Engage patients in music, craft, artistic activities and games either one-to-one at the bedside or in groups

• Volunteers to offer basic information or signpost/refer patients and carers on to others within the hospital able to provide relevant information and advice

• Volunteers to help more often at meal times

• Volunteers to calm and reassure patients who are distressed

• Volunteers to help patients more with small but important practical tasks like distributing earphones, fetching books, reaching personal items and running errands.


4b: Sheffield Project - Darnall Dementia Group

Local Context: Darnall Dementia Group is a charity providing day care for older people with dementia and people with early onset dementia and support for carers.

Our work with this organisation follows on from the focus groups undertaken for the Shaping our Age research in Northern General Hospital, Sheffield (see Chapter 4a and James et al, 2012).

The Participants: The core group of people who stayed with the process throughout comprised six women aged between 62 and 92. One of them was caring for her spouse who was living with dementia and four of them were bereaved carers. One of the participants, the oldest in the group, had Alzheimer’s disease. The Clinical Manager of Darnall Dementia Group attended all meetings and, on occasions, students of health care studies also attended.

The Involvement Worker: Diane Hinchliffe working two days a week from September 2012 to end of March 2013. Previously the Worker had been based at Northern General Hospital interviewing patients around their experiences of hospital and contributing to an evaluation of the WRVS on-ward volunteer service.

The Approach: Working to encourage and stimulate involvement and enjoyment using a range of creative methods and techniques; helping the group towards their goal of raising awareness of dementia within the community; facilitating a group development process and encouraging members of the group to take on responsibilities for creating a dementia awareness ‘toolkit’ for delivering their messages via community outreach; launching the toolkit to an event for professionals in February 2013 and further group development in preparation for outreach. The Involvement Worker encouraged involvement step by step using

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a range of methods and techniques under the following broad categories (see Hinchliffe and Vagnarelli, 2013 for further information on tools and techniques used):

• Scene setting – relaxation, welcome, mood, music, sharing, review of progress

• Group facilitation – listening to one another, creative thinking, fun and laughter, variety, pace, encouraging mutual support and participation, allowing space and time for contributions

• Confidence building – encouraging and acknowledging skills, contributions and achievements; taking ideas forward into action

• Challenging participants to try something new and step out of their comfort zones. As the Involvement Worker said:

• Creativity – arts and crafts: poetry, design and painting to get the message across

• Planning – diarising, timescales, short-term and long-term goals, homework; roles and responsibilities; review and evaluation. Holding the bigger picture for the group in relation to the task in hand and managing and demonstrating progress towards their goal

• Focusing on the individual and valuing their contributions – being sensitive to individual needs particularly for people living with dementia; one to one support where necessary. The value of confirming the contribution of the participants was highlighted by the Involvement Worker:

Project outcomes and sustainability: Key learning to inform practice and policy; increased personal confidence of participants who are now outreach volunteers, known as ‘Darnall Dementia Awareness Group’; dementia awareness toolkit of creative activities and games developed; information cards designed and printed for distribution (see Appendix Two); successful and well attended launch event for the pilot toolkit in February 2013; a photo-film created by the group to demonstrate the involvement-led approach using creative activities; participants trained in presentation skills and knowledge of dementia; the group has written its Mission, Philosophies and Values statement; Trustees of Darnall Dementia Group agreed to seek funding to support the continued work of the group and for the facilitator to continue in her role with them.

Just because activities are new to people and they don’t usually participate, doesn’t mean an idea should not be tried and that individuals cannot develop the confidence to participate.

Individuals who feel valued and listened to are more willing to contribute to the development of a project.



Key Learning

This section draws from the overarching learning we have distilled from the action research with Darnall Dementia Awareness Group.

Focus on Dementia

There are around 800,000 people with dementia in the UK and this figure is set to increase dramatically because of our ageing population; the risk of developing the most common forms of dementia such as Alzheimer’s disease increases with age. In recent years, dementia has attracted much more public and political attention. All four UK nations either have, or plan to have, national dementia strategies in place to address the challenge that dementia poses (Williamson, 2012).

The involvement of people with dementia in influencing services and public policy has only begun to develop over the last ten years and a service user movement of people with dementia, though growing, is still at an early stage. It is against this background that the work with people living with dementia and their carers was undertaken.


There are already practices and services in place that create the necessary conditions to engage older people and in this context to support people living with dementia and their carers:

• Community support in Sheffield including organisations offering opportunities for people with dementia and carers to get out and mix with others

• Committed staff and active volunteers in Darnall Dementia Group and other local organisations (many of whom are older people) who benefit from being involved and take an active role in improving the well-being of service users

• A supportive working environment for involvement. Principles of involvement are embedded in the ethos of Darnall Dementia Group.

• A supportive policy environment for involving people with dementia: Local authority, health and third sector initiatives in Sheffield which are concerned with supporting older people’s involvement in improving their well-being including people with dementia and their carers. Sheffield aims to become a Dementia Friendly City by 2015.


• Involvement-led practice – working with people to improve their well-being: The Worker encouraged active participation and provided time and



support for individuals to determine their own aspirations and the way in which they wanted to achieve them. Underpinning the approach was a belief that all older people, no matter what their personal circumstances or impairments, are capable of learning and development; can make valuable contributions; have a wealth of skills and experiences they can offer and are capable of supporting others.

Above all it was important that the type and scale of involvement was appropriate to and determined by the group and/or individual participants. The principle of starting with the individual was central to the Worker’s approach. So too was an approach of the Worker as facilitator rather than leader.

The following are the key well-being benefits identified by the members of Darnall Dementia Awareness Group of their involvement in Shaping our Age:

• Building confidence. This was a gradual process evidenced in the early stages by increasing verbal contributions and sharing of ideas and in the later stages by volunteering for roles and responsibilities and public speaking. At the outset participants said they were reluctant to speak in public and in the early stages explored the potential for communicating their messages in other ways: through written messages (poetry) and art, for example. At the end, they all spoke at the launch event to an audience of 50+ and have since developed their facilitation skills for community outreach. Participants said:

These views were endorsed by the Clinical Manager of the support group:

• Taking ownership. Participants undertook a range of responsibilities both within and outside of the group sessions; for instance, writing the invitation letter, arranging the event venue, choosing the photographs and voice recordings for the photo-film, preparing materials for the launch, organising the delegate packs and greeting delegates at the launch and undergoing training in dementia equality to improve their own knowledge. A participant said:

It was because you saw people blossom didn’t you? They just came out of their shells and people that you didn’t think would have opened their mouths and suddenly they were in the middle of it all.

We feel we can change the world.

The fact that you’re working with people who are so full of enthusiasm and you can see their confidence growing, for me that well-being, my well-being is increased and that will last for a while …



• Feeling useful and valued. This was achieved through positive affirmation of their contributions and through the feeling of helping others. A participant with dementia was particularly pleased to have been useful in the process:

• Developing relationships and group cohesion. Relationships are essential to involvement. Common experience held this group together. Deep friendships have been established through working together to a common purpose. People are relaxed and confident with each other and supportive of one another. This is illustrated in this comment by a participant speaking about presenting at the outreach launch event:

Other participants mentioned additional social benefits of belonging to the group:

A participant with dementia highlighted why she liked attending the group sessions. In particular, it gave her a sense that other people were experiencing similar issues with dementia to her own:

• Pride in achievements. This involved working towards a goal with successes along the way; having a positive outcome in the launch event and planning towards outreach. Participants described how being involved as organisers of, and speakers at, the outreach launch had made them feel:

It gets me away from caring for a few hours, which is brilliant because I’ve had a horrendous day today so I’m half an hour early because I couldn’t wait to get here.

Because you lose friends like I have and they were good friends before and they’ve gone. So this has helped me tremendously.

We all had an input - it weren’t just Diane telling us what to do. We all put an input into it all.

Well, for instance. when S went up to say her bit, she turned round and as she came back she squeezed my hand as if to say it isn’t as bad as that, you know.

Well I think if you can be useful … I think that means a lot just to … being useful anyway …

Oh I like that (the group) because I like to listen to different people about their opinions and you know and what happens and it’s nice to know that other people have the same goings on shall we say as I do.



• Therapeutic benefits. Participants felt better at the end of group sessions and looked forward to the next. These comments from the Involvement Worker illustrate these benefits:

• Building skills and learning. Participants gained an increased understanding of dementia through working together and becoming friends with members of the group who are living with dementia. They also built skills around public speaking and facilitation and arranging and running events.

• Creative Activities: Using creative activities was a particular interest of the Involvement Worker and central to her approach. These activities provided a relaxed environment, were therapeutic, useful for stimulating discussion, sharing concerns, increasing involvement, building confidence and encouraging mutual support. Creative and participative activities are key elements in the dementia awareness toolkit developed by the group. Participants highlighted the benefits of being creative:

Well to say that we started as a little group talking and it was just going to be a little get together now and again and … we never visualised what it involved and how big it was going to be and to stand there like we did with our knees trembling ...

Well I thought it was going to be a right frightening experience, to be quite honest, but I enjoyed it.

It feels good. It feels as though we’ve achieved something really good. Because I don’t think we ever thought we would did we? I never thought it would be like that, as big as that. I mean standing in front of all those people …

Everybody arrives enthusiastic and with an open mind to see what emerges whilst also having a goal of moving to the next stage.

The group is buzzing in the bus on the way home and are developing ideas between sessions.

People feel each session moves them forward to the next stage and leave the session feeling excited.

The process of decision making is equally important as the practical element of a project.

It shows that if you’re very creative everybody can be involved and participate … everybody can be part of it.

So it were nothing that I would even have dreamt of doing, as I say painting my hands and feet … so that’s where I’ve enjoyed it … and I think you need a little bit of lightness as well because it can be too serious, it can be too serious (being a carer).



• Working in a group: Participants highlighted a number of benefits from being involved in this group:

• The involvement of participants with dementia contributed to increased understanding of the condition

• Attending group meetings offered a welcome break from caring

• Built a sense of togetherness, belonging, trust and support

• Built mutual respect – including for people with dementia

• Established strong, supportive friendships

• Created a sense of commitment to the shared goals.

• The importance of emotions and shared ‘passion’ for the goals were important for group cohesion. Group members were at times excited, frightened or nervous but fun, laughter and enjoyment were also key elements to encourage involvement. Participants made the following observations:

• Supportive Context: The Clinical Manager of Darnall Dementia Group was highly supportive of Shaping our Age and this was a crucial and positive factor in the development of the group. Working within an organisation with the same values about involvement allowed our Worker the freedom to explore and develop ideas. The Clinical Manager was so committed that she attended group meetings in her free time and said that being involved in the project had improved her own practice:

It’s amazing how we’ve all come together. Well we are all in it together and it isn’t just down to carers; it’s the people with dementia and everybody and we’re all in it and we’re all enjoying doing it. We’re getting so much out of it. It’s unbelievable!

All the ideas were flying round so it were everso exciting.

Oh didn’t we have some fun that night.

We have worked hard but we’ve enjoyed it haven’t we?

Cried a few times as well but we’ve had a good laugh.

Yes, oh yes I can’t wait for Thursdays to come.

I now wait for people to offer, rather than jumping in and doing everything.

Diane has definitely left a legacy. I thought I knew how to work with older people, but I have learnt a better way of doing that.



The loyalty of the participants to Darnall Dementia Group was a key driver in their commitment to Shaping our Age.

• Support for Group Development. Shaping our Age was able to give support to the group through the Involvement Worker and also by providing creative materials for group meetings and materials, design, printing and other support for the toolkit launch. Transport was also provided to the meetings to ensure that limited mobility was not a barrier to involvement. The launch event was sponsored by some local organisations and supported by volunteers from Darnall Dementia Group. All of this input was essential to support involvement.

• A Skilled Worker. The Involvement Worker had wide-ranging and relevant experience as a group facilitator and trainer in personal development. She was qualified in counselling, integrated psychotherapy, community work and social artistry. In addition, she was genuinely enthusiastic and committed to working in an involving way with people. In turn, participants quickly developed trust and commitment to her.

According to the Worker, to encourage involvement people need someone to believe in them; to encourage them; to be open with them and to remind them of their achievements and keep doing this until they believe it for themselves. Learning to step back and to allow involvement to happen was an important part of her armoury of facilitation techniques. Here are some comments about her from the participants:

The Clinical Manager of the dementia support group made these comments about the Involvement Worker:

• Planning. Careful planning and good organisation and preparedness help to ensure that the job gets done and that people can cope with challenge. The Involvement Worker held the ‘bigger picture’ and facilitated a step by step process during weekly meetings towards the toolkit launch. Following the launch she involved the group in review and evaluation of the event to inform individual and group development towards outreach. Participants acknowledged

She didn’t offer to do things for the group. She says it’s up to us and you know - have a go and encouraged us and said we can do it.

You’re the anchor; you’re the one that keeps us all together … I just think that the thought that we knew you were there … if we needed backup we could have found it straight away.

… It’s been really refreshing working with somebody that starts with ‘yes’ … with Diane it was, ‘well anything’s possible’ and that was really refreshing.



the important role played by the Involvement Worker in planning towards the end goal of creating a group to deliver outreach workshops and a toolkit of activities for the purpose:

• Achieving an outcome. The participants felt a sense of achievement and pride in the event outcome; with their individual and group roles in that and the local interest including several bookings for outreach workshops. A participant voiced the group’s sense of achievement following the launch event:


These were some of the barriers identified by the Involvement Worker whilst working in Sheffield.

• Poor health and impairments can affect levels of involvement. People with dementia can struggle to cope in groups; absences and falling numbers owing to ill health were experienced during the process.

• Traditional approach to service delivery. Professionals leading and not allowing the space/gaps for service users to fill roles and take on responsibilities or to even ask members for their opinions.

• Reluctance to take part in an unfamiliar approach. Participants can be wary and unfamiliar with an involvement-led approach.

• Lack of self-confidence of service users can lead to resistance to involvement

I think she starts off and then she starts seeing the plan; she can visualise it; she can see what the outcome is going to be. The steps that get us from here to there we work out ourselves but I think what she does is she sees the endings and what the possibilities are.

I think the actual physical plan that we had, so we all knew exactly what we were saying and exactly what order we were saying it. It was in our packs and we could all reference it when we needed to and we had our sheets with what we were going to say on. And I think having things written down when you’re feeling nervous and daunted made a big difference.

When we first started we were all terrified weren’t we … but she’s so good at thinking in advance isn’t she. Planning.

Well I think it’s just been such a build up for weeks on end and we never thought we’d get there and suddenly it’s here, we’ve done it and we can sit back and think well, we did a good job there.



• Fear of the unknown, particularly public speaking in this case

• Too much of a time commitment. Older people unwilling to give their time to an initiative

• Reluctance to leave the house at night in winter months. A participant with dementia withdrew for this reason

• Exhaustion and especially so for carers.

Recommendations

The recommendations here would enable Darnall Dementia Awarness Group to move forward and to be sustained beyond the life of Shaping our Age.

1. Facilitation: Group members grew in confidence through the process but no-one emerged who could take over the role of group facilitator. They all feel that someone – preferably the Involvement Worker - needs to continue in this role to support them.

2. Funding: Sufficient funds need to be available either through a commercial fee for running the dementia awareness outreach workshops or via sponsorship or a combination of the two. It is understood that grant funding is being sourced to support the group going forward. Funding is needed to:

• Cover transport costs

• Pay for a facilitator

• Buy workshop materials

• Training

3. Research into and learning about dementia: The post event evaluation discussions revealed that the group need to feel confident to discuss dementia in all its diverse forms with a wide range of audiences for the outreach work. The Involvement Worker organised training for them following her contract period on Shaping our Age, but they need to continuously refresh their knowledge on the subject.

4. Further work in developing the workshop activities: Suggestions from the group and from the launch event delegates should be considered and taken forward.

5. Training for the group in:

a. Dementia Awareness

b. Facilitation skills



c. Public speaking

d. Adapting the toolkit to different audiences

6. Support is needed for people with dementia: both within the group and as delegates in the outreach sessions.


5: Thanet Project, Kent

Local Context: The project was based in the offices of Royal Voluntary Service/WRVS Good Neighbours volunteer service in Ramsgate. The service provides personal home visiting for conversation and company; help with small practical tasks at home; assisted shopping; safe, warm and well checks and dog walking. Royal Voluntary Service/WRVS has no permanent centre or meeting place for older people in Thanet. The service is based in the same building as the Volunteer Centre, the volunteer driver service and the Thanet Community Support Partnership, which is a central point of contact for a group of organisations who work together to support older people by recruiting volunteers for befriending and help with daily tasks.

The Participants: The group that stayed with the process throughout comprised seven women, all of them already active in volunteering roles for a range of local voluntary organisations including an intergenerational project; a heritage project; groups in support of people living with dementia; the Thanet Senior Citizens group (Chair and other members); The Children’s Society; Royal Voluntary Service/WRVS (dog walker) and a Church-based organisation (befriender). Ages of the participants ranged between 63 and 80.

The Involvement Worker: Zenia Wainwright-Melnyk working for 13 months for two days a week from February 2012 to March 2013.

The Approach: The Worker spent several weeks recruiting people interested in forming a Shaping our Age group. This was a challenging process since she was not based at a community centre where people meet together and had to build interest through networking widely within the area. Starting with 26 people who showed some degree of interest, participants came and went over a number of weeks until an established group of seven was formed. The Involvement Worker facilitated weekly or fortnightly meetings in which the group discussed a range of local issues and potential action projects.

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The Involvement Worker established her position as group facilitator, not leader, from the outset. She provided a welcoming and friendly atmosphere and, whilst enthusiastically encouraging open discussion, also guided participants towards developing their own project. There was no pre-set agenda - that was for the group to decide.

The Worker provided the space and time for participants to agree on a project and encouraged them to take on responsibilities e.g. research (homework) between sessions. Other methods and techniques used by the Worker included:

• Taking time, listening and building rapport

• Taking an interest in individuals; acknowledging their achievements within the group and outside the group

• Taking advice from older people around the location and timing of proposed meetings

• Creating a comfortable and inviting environment with refreshments

• Keeping in contact by individual letters and emails between meetings

• Arranging for the group to meet with other people within the locality including the manager of a community radio station and members of the Thanet Community Support Partnership.

Project outcomes and sustainability: Key learning to inform practice and policy; raised awareness of need for better access to quality information to improve the well-being of local older people. Worked with Kent County Council and Thanet Community Support Partnership on a successful bid for initial funding to update an information directory and publish online. The directory will be used by service users through direct on-line access or via support services like befrienders accessing information on behalf of service users. The Thanet Shaping our Age group will act as advisers on the development and updating of the directory which is hosted by Thanet Community Support Partnership. An information needs survey was undertaken by the group; the results shared locally and the report will inform a Phase Two funding application for hard copies of the directory to be available in public places. The survey findings were included in a Lottery bid for funding for older people’s services by Age UK locally and Thanet Community Support Partnership and members of the group were also involved in putting this bid together during April 2013. The group is strong and has established its own mission to continue as autonomous local ‘activists’ addressing local issues of concern. They feel they have been empowered through coming together as a group and that Shaping our Age has enabled them to make a real contribution. A short photo-film featuring the work of the group was produced.



Key Learning

This section draws from the overarching learning we have distilled from the action research with the group which is now known as ‘Thanet, Shaping our Age’.


There are already practices and services in place that create the necessary conditions to engage older people:

• Local community support. Third sector services like Age Concern and church and community centres run a range of clubs and activities for older people. There are structures that facilitate partnership working: Thanet Community Support Partnership, the Volunteer Centre and the Thanet Adult Strategic Partnership (TASP). TASP currently has 20 member organisations offering a wide range of support services.

• Committed staff and active volunteers in Royal Voluntary Service/WRVS and other local organisations (many of whom are older people) who benefit from being involved and take an active role in improving the well-being of service users.

• A supportive policy environment for older people’s well-being: Local authority, health and third sector initiatives in Kent and the Full Policy Framework for Later Life by Kent County Council which is being updated to guide policy on the well-being of older people.


• Involvement-led practice – working with people to improve their well-being: The group started with an open agenda and the Worker allowed time for the group to identify their own issues and to develop a shared passion in a cause and in working with one another. An important aspect was focusing on the abilities of each member and recognising each person as an individual with something valuable to offer. The well-being outcomes as identified by the participants themselves included the following:

• Group members felt a sense of achievement and satisfaction through representing older people and obtaining a positive outcome for them which should impact on well-being. Participants believe that the information directory will benefit older people in Thanet both by producing it and using it as a resource:



• Forming close, committed, and trusting relationships based on working together in a group to a common cause and with a shared passion. One participant said that the experience had made her appreciate being with older people like herself:

Other participants described how working together had forged close bonds between members of the group:

• Feeling useful, needed and valued. The sense of empowerment arising from this was highlighted by one participant:

The directory now gets a whole bunch of people involved in producing it and doing it …

We have done wonders. You have no idea how much things have shifted since we came along. Well, there just wasn’t anywhere to do what we’re doing. There was no means of communicating with older people on a clean sheet of paper.

It’s been the pressure from this group – users, rather than providers - saying that we desperately need it (information directory). We are speaking about what we’ve heard from older people.

What made it empowering was achieving the goal – you lose faith in a venture if it doesn’t achieve what you wanted it to…

It makes you feel like when you retire you can still be needed and achieve. Your input is still wanted and your opinions are still valued.

It makes you feel better about yourself; it makes you feel useful and needed!

It’s a great group of women, which I really enjoy just listening to and it’s taught me a lot of respect for women of my age. I’ve always viewed myself as desperately trying to keep up with younger people. God forbid I should be with old fogies my age, you know …

I’ve enjoyed the social part of it.

Yeah I mean we’re a group here, we’re not… there’s no one I think among us whose going to take offence at what anybody else says.

The relief of feeling that there are people that think like you and act like you so you’re not alone.

Yes and you see and one of the things that is so good is meeting inspirational women to be honest.

In Thanet, we have never had the opportunity to do what we’re doing here. Well we’re Shaping our Age and we’ve never been asked to before.



• Participants highlighted the benefits of establishing new working partnerships:

• Acquiring the confidence and motivation to continue as an influencing group:

• Gaining knowledge and learning and skills in group facilitation to take to their own groups/organisations; now working in a different way. One participant made the following comment about the way she has changed to an involvement-led approach:

• Giving participants a worthwhile role in retirement; building self-respect for life’s experience:

• Group Facilitation: We have found that by giving a group the freedom to choose its own direction can take a long time to reach agreed actions. On the other hand, it can stimulate creativity, discussion, exploration and sharing. At the end of the process, participants believed that the long time in discussion had been valuable:

I see the role of Shaping our Age as a group who should be highlighting older people’s issues to those in decision making roles.

Well we’ve got a model and a method haven’t we to achieve an outcome which is what you never get down here, they don’t do outcomes down here.

It means asking – asking opinions, ideas and input. It made me feel needed.

It was more interested in the older person – it was valuing input and opinions, different from other groups like committees. Shaping our Age was about asking – not patronising.

I was really flattered and I still am that anybody would be interested in opinions of how to shape my age or people like me because I have experience since I retired from education that I suddenly became a non-entity. Giving participants a voice in the local area.

As a volunteer with WRVS it has made connections with other organisations, its created working partnerships…

Yes and we’ve tapped into each other’s networks.

It has enormously reduced my stress. Oh yes because I carried the weight of what I’m trying to do on my shoulders alone until now because, you know, although I’ve got a committee they don’t do anything. And yesterday I actually provided things … I wanted decisions off them … it’s no longer just me doing it. Oh yes, it’s made a lot of difference.



Nevertheless, it is necessary at times for the group facilitator to take on a leading role to keep up interest and pace and ensure that outcomes are achieved to timescale. It is also important to set ground rules for meetings and to agree who enforces these. Qualities required for effective facilitation in an involvement-led process were identified by participants as enthusiasm, humility, respect for others; good listening, interpretation and probing skills; being persistent, non-directional, mentoring, non-judgemental; leading at times but non-coercive; appreciating the importance of communication with members between meetings. Participants had a lot to say about how the Involvement Worker had facilitated the Shaping our Age process in Thanet:

The significance of the job title and the distinct approach that it implies was noted by this participant:

But that’s inevitable (taking a long time to get going) because we all came and you’d got a clean sheet of paper so it wasn’t as if we’d already got an agenda. We had to decide what the agenda was going to be.

We’ve been given enough time to understand where everybody’s coming from and what they’ve got to contribute.

The Involvement Worker role was the important one. It held the group together; it was the driving force to achieve. You were there every time – you were the consistency factor – some of us didn’t go all the time but you were there for every single meeting – you appeared very time.

Oh she’s never stood up – she’s always been one of us.

And also you don’t talk down to people.

You’ve always got enthusiasm and it’s come out on us.

And it’s about respect as well for everybody.

And you don’t try to lead us … you do lead but you don’t lead in a sort of way that coerces other people.

I don’t think you’ve got a hidden agenda … but so often you do this sort of thing and you can feel that the person is trying to get to the result they want. That’s what I meant about leading people.

Because you could have been called the coordinator, you could have been called a chair, you could have been called a supervisor. I mean, you know, all those words are to do with a different structure. But the fact that you’re an Involvement Worker was, oh okay, well then she’s willing to do something, you know she’s not just here to like chivvy us… and I think it’s important, it’s an interesting title.



• A unique, independent group was formed through a process that started with an open agenda and no organisational constraints which, according to its members, was able to influence action like no other group of older people in the area. Participants believe that before this initiative, there had been no local mechanism for raising issues and influencing action as effectively.

• Setting realistic goals to ensure that actions are achievable. Some large projects were suggested as actions by this group in the early stages. It took some time before the role of local ‘influencers/activists’ became the more feasible role for the group.

• It is essential to be well connected within local organisational networks when trying to influence change. Two members of the group understood which contacts within local statutory and voluntary organisations could get things moving and took the opportunity to inform these contacts of the actions and findings arising from the Shaping our Age group.

• Having a set timescale for a project helps to focus minds and stimulate action. One participant said:

• Men appear to prefer different roles: practical rather than discursive; focused; problem solving and a process that is formal and structured.

• Older people need support to become involved in service development and delivery and funding should be provided for this. This was provided by Shaping our Age and included the Involvement Worker, meeting room hire and extra support for participation, e.g. refreshments.


A range of barriers to involvement were identified during the early work of the Involvement Worker when networking with older people in Thanet. Other barriers were identified during her work with the Thanet Shaping our Age group.

I’ve been in two or three consultation groups where the person in your role is very focused - so focused that none of us could say what we thought. It’s not the skill of being focused, it’s the skill of, you know, where you want to get but it’s that feeling you gave that it’s okay if we take a slightly different route and you’d mention where we want to get and we would go, oh okay, then there’s another way to get there …

It was a kind of means justifying the end – it had a beginning, middle and an end.



• A perception among some older people that the local authority culture does not support public involvement. Participants identified this as a particular issue in Thanet:

• A confusing array of local organisations; structural changes in services and high staff turnover leading to confusion for workers and service users alike.

• A traditional approach to service delivery e.g. organisations running groups and clubs who think they know what users want; offering the same format every week without challenging the existing offer. Professionals either not consulting with older people or doing so in a tokenistic way; or failing to acknowledge older people as individuals:

• Inadequate information on services to support older people’s well-being: Low computer literacy amongst older people also inhibits access to information.

• Poor health and associated tiredness inhibit mobility and the ability to go out, join in and socialise:

Decision makers yes, I mean they have been very arrogant in that they haven’t been asking us what we want and whatever structures you have, physical or social, it’s just as well to get the views of the people who are going to be using it or looking at it and they haven’t bothered. You know, it’s like we were nothing.

Well not only have they not bothered, any information they’ve been given they haven’t understood; they haven’t recognised it as having any worth.

99% of clubs do what the committee want to do rather than what the people want to do.

They’re patronising and don’t treat members as equals.

I don’t want to conform to what others think I want or what they think I can and can’t do.

The people who are in charge, I don’t know that they mean it but it’s probably because they do it all the time, they tend to treat everybody the same and it’s like you come here, you are now an old lady or an old man and its hello dear, are you alright… can you manage… some people then will just knuckle down and say oh well you know yeah probably they’re right, that is exactly what I am now you know.

Yes especially certainly long term ones. I mean with things like I don’t know, rheumatoid arthritis but it’s not just the pains, people are so tired.

I mean, it (ill health) robs you of energy and everything else.



• Transport difficulties are a major issue in this area of Thanet, leading to isolation for some older people.

• Resistance to joining older people’s groups; preferring to mix with all ages and not wanting to be identified with or labelled as old. Some people just prefer not to join groups of any kind:

• Resistance to being involved in running groups. Many groups and clubs in the local area had falling memberships or were closing. It was usual for a few local people to be running several groups. Formal committee roles were off-putting for many. There is an appreciation of the freedom from responsibility that retirement brings and reluctance to commit to set roles or timetables. These are some of the comments from participants:

Shaping our Age project participants suggested actions but were often resistant to taking on any responsibility for the following reasons:

• Low self-esteem; low confidence, particularly in writing skills, and believing that others in the group were more skilled

• Being too busy

• Seeing the Involvement Worker as the leader or pro-active one in the group

• Not being prepared to commit or committing and not seeing actions through.

• Lack of confidence was identified as something that quickly develops following retirement or bereavement:

I’m not keen on joining large groups. I can’t do the small talk thing. I prefer linking with individuals rather than groups.

I’m not averse to being with older people but I much prefer to be with all age groups. I don’t want to be isolated from the rest of the population as it keeps you from getting into an old age mind set – you know, fussing about little details.

The wife needed to pluck up a lot of confidence before she did join as she’d wanted to do art for a long time.

You don’t want to commit. You’ve had a whole working life of commitment. You want to do things when you feel like it. It’s part of being retired. You’ve got choice and you’ve worked hard towards it.

When you retire you lose confidence. Then the less you do, the less you think you can do.



• The costs of keeping active and joining groups can be too high for older people.

• Area of high deprivation; low achievement; low confidence; low expectations. Participants said that this can create a dependency culture where people expect to be served rather than doing things for themselves:

• Lack of a fully accessible community facility in Ramsgate for older people to meet together with each other and with other members of the community.

Recommendations

The recommendations here are in two parts: firstly in general for services and policy and secondly to enable the group to move forward and to be sustained beyond the life of Shaping our Age.

Recommendations for the local policy context

1. Introduce involvement-led practice into organisational culture and acknowledge that it improves older people’s well-being; develop a volunteer and practice mindset that works with service users to achieve their well-being rather than the traditional ‘doing-to’ approach. As part of this to encourage a person-centred approach to service user involvement and service development. Provide the funds to support involvement.

2. Provide easily accessible information for older people by working with local partners; make information available in a range of formats to allow access by all, including completion of an online directory for older people; offer computer training for older people to increase information access. Organisations to be helpful and accountable; offering clear and up to date information allowing easy access to services.

3. Work to improve transport provision to allow access to services by a wider range of older people.

People in Thanet have very little get up and go. If they’ve been brought up in the area and haven’t experienced anything else, they just accept their fate.

Thanet is a parochial area. There’s lots of deprivation both social and economic for the young and the old. People are so used to things being done for them. They think they should be there to be served. It’s a service user’s mentality. They owe me.



4. Engage with older people to uncover reasons for not wishing to take responsibility and leadership roles. Explore whether different models of working are more appropriate. This could be a subject for further research.

5. Acknowledge that men and women might want to become involved in different ways. Explore this through further research.

6. Provide activities and groups based on community centres giving social opportunities to older people who prefer to mix with people of all ages.

7. Recognise that it takes time, skills and patience to involve older people who have low self-esteem or lack confidence but that by doing so can impact positively on their well-being. Provide the necessary funding for trained staff and volunteers to work with older people.

8. Seek funding to keep costs for older service users low, allowing them to be fully active and social members of their communities.

Recommendations for group sustainability

1. Development support as and when needed e.g. training in research.

2. Access to funding to support development and to carry the group forward

3. Recruit new members interested in the group and its ongoing interests and future causes.

4. Commitment from Thanet Community Support Partnership to sustain the group’s input to development of the on-line information directory and to work with them on other projects where possible.


6: Conclusion

Our five local projects lasted for 13 months with each Involvement Worker working two days a week. They used approaches underpinned by shared values in working with older people and methods and activities/actions in support. We have identified this way of working as an involvement-led approach.

The projects were very different: by location, context – whether in or outside of Royal Voluntary Service/WRVS – and in the mix of participants involved, by age, gender and disability, and in their own motivations and interests. In addition, although their principles of working were the same, each Worker brought their own preferences and styles of working to their projects, based on their past experiences and individual skills. This diversity allowed us to explore different ways of working with and involving older people with the aim of improving their well-being. In doing so, we achieved a wide range of outputs: from a training course in person-centred communication to a group providing dementia awareness outreach in their local community. We have contributed to an evaluation of an on-ward volunteer service; worked with a group of people to create a service advisory forum and with another group who have come together from a range of voluntary organisations to become local ‘activists’. We have also worked with small groups of older people who have identified and tried out activities to enhance their well-being.

Throughout these diverse projects the outcomes for participants have been similar. We have seen people grow in confidence and self-esteem. We have witnessed the formation of trusting and mutually supportive friendships. We have seen people achieve skills and learning that have surprised and inspired them. These are only some of the positive outcomes arising from the involvement-led approach for the participants; only some of the ways in which we found that involvement can enhance the well-being of older people.

The Shaping our Age Research Team has analysed the findings from the five

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6: Conclusion

projects reported here and from the national consultations at Phase One of the project, together with other inputs from our project partners and our Older People’s Reference Group (see Hoban et al, 2013 for an explanation of the overall organisational structure of Shaping our Age). From this process we have identified seven Key Findings from the project as a whole and recommendations to take forward arising from these findings to inform policy and practice. These are presented in the Final Report of the Shaping our Age project (Hoban et al, 2013). A supplementary report entitled ‘Tools and Techniques’ describes the methods used by the Involvement Workers for those who would like more detail (Hinchliffe and Vagnarelli, 2013). A further report, describing the person-centred training course in the Borders is also available (McCall, 2013). All of these reports taken together provide a full and detailed understanding of the Shaping our Age project.


Shaping our Age Reports and Photo-films

The following can be sourced from www.royalvoluntaryservice.org.uk/shapingourage

Reports

Hinchliffe, D. and Vagnarelli, C. (2013) Shaping our Age Tools and Techniques Manual. Cardiff: Royal Voluntary Service.

Hoban, M., James, V., Pattrick, K., Beresford, P., Fleming, J. (2011) Shaping our Age - Voices on Well-being. A report of research with older people. Cardiff: WRVS.

James, V., Hoban, M., Beresford, P., Fleming, J. (2013) Shaping our Age – Involving older age: the route to twenty first century well-being. The Five Local Projects. Cardiff: Royal Voluntary Service.

Hoban, M., James, V., Beresford, P., Fleming, J. (2013) Shaping our Age – Involving older age: the route to twenty first century well-being. Summary Report. Cardiff: Royal Voluntary Service.

Hoban, M., James, V., Beresford, P., Fleming, J. (2013) Shaping our Age – Involving older age: the route to twenty first century well-being. Final Report. Cardiff: Royal Voluntary Service.

McCall, F. (2013) Shaping our Age: A Person-centred Approach to Working with Groups and Individuals - An Overview of a Pilot Training Course for the Royal Voluntary Service Social Centres. Cardiff: Royal Voluntary Service.

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Shaping our Age Reports and Photo-films

Photo-films featuring work in the five local projects

Darnall Dementia Group: Raising awareness of dementia: creative possibilities. Shaping our Age 2012.

The Friends of Chesham House Community Centre, Lancing, West Sussex. Shaping our Age 2012.

Person-centred training in Jedburgh and Kelso. Shaping our Age 2013.

Shaping our Age in Kirklees. Involving older people in creative activities to support their well-being. 2013.

Shaping our Age group, Thanet, Kent. 2013.

The following unpublished report was also produced:

James, V., Hinchliffe, D., Hoban, M., Fleming, J., Beresford, P. (2012) Shaping our Age, Local Report Sheffield. Consultations with Service Users and Carers. unpublished report. Cardiff: WRVS.

Other References

McDonnell, A., (2013) An evaluation of the WRVS on-ward volunteer initiative at Sheffield Teaching Hospitals NHS Foundation Trust. Unpublished Report, Sheffield Hallam University.

Williamson, T. (2012) A Stronger Collective Voice for People with Dementia, York: Joseph Rowntree Foundation.


Part 2:Principles in Practice

Appendix 1

Appendix 1: Methodology – Further Details

Indicators of well-being

These were defined by older people during the Shaping our Age national consultations and are presented in Table A.1. These informed the work in the five projects.

Table A.1: Indicators of well-being

Main Theme Sub-theme

Feelings of well-being Belonging Confidence Comfort Contentment Enjoyment Feeling useful Feeling valued Happiness Peace of mind Satisfaction Self esteem

Positive relationships and social contacts

Family Friends, company, neighbours Groups and clubs Interests and activities Going out Places of worship Volunteering, supporting others and campaigning

Good Health Physical health Mental health

Having a sense of independence

Control of daily life Regaining independence after illness, disability, bereavement

Place and environment Belonging to a supportive community Being comfortable and happy at home Safety and security A good social life Pleasure in the outdoors Attractive natural environment Pets


Main Theme Sub-theme

Positive attitude to life Self-motivation Taking responsibility for self Positive memories Accomplishments

Faith, religion and spirituality Personal beliefs and meaning Prayer Spiritual experience

Finances For comfort, security and contentment

Principles of Participatory Research

The project adopted a participatory approach to research, seeking to involve older people in all aspects and stages of the work and underpinned by the following principles which were identified in our research proposal to the Heritage Lottery Fund:

• An equal, non-hierarchical relationship between researchers and participants, recognising that everyone has an equal and different contribution to make to the research process

• Committed to the empowerment of participants

• Starting with the ideas and understanding of the people involved

• The researcher as the facilitator of a process of learning, development and change

• Researchers set in motion processes of participation to shape agendas, make decisions and effect outcomes

• The approach involves moving from understanding and knowledge into action

• There is a responsibility not to leave participants unsupported at the end of the process.

Appendix 1



Appendix 2: Creative Approaches

What do you understand by ‘well-being’ and ‘involvement’? From a session run in Kirklees, 2012

Appendix 2

Well-being is...

Involvement means…

The barriers to well-being are…


Appendix 2

A little poem about well-being

Well-being and Me!

Well Being…

Not distressed by money

Fitness and Health

Sunshine Age

Friendship

Barriers

Different ways

Invisible things

Hurdles

Walls

Unopened Doors

Involvement

Being included

Not excluded

Progress together

Never mind the weather

Meeting in all seasons

Family, children, friends and neighbours together…

Poem created by Dewsbury and District Pensioners - 16 April 2012 With support from Diane Hinchliffe, Involvement Worker



Appendix 2

A Poem about the Hospital Experience

Going into hospital

Personal things Washbag, nighty, toothbrush, slippers Smiling, friendly, cheerful – greetings

Help me Care for me

Know my needs Talk to me

Give me time Ask – ‘What can I do?’

Information, explanation, listening

Staying in hospital

Listening Attitude

Polite and friendly A smile goes a long way

Tidy the bed Comfort is important

Regular visits – check with me Know my needs

Ask – ‘How do you feel?’

Going Home

Going home Got to wait – terrible

Check on me Take my personal belongings home with me

Somebody at home Put the kettle on Warm welcome

Thank you!

Darnall Attenders’ Poem about the Hospital Experience from a Shaping our Age focus group, facilitated by Diane Hinchliffe, Involvement Worker, 17 July 2012


My well-being, my senses, me …

My well-being smells like coffee… reviving and uplifting me

like flowers gently blowing in the summer breeze

making me feel better… life’s worth living

The ocean freshly washing… around and over me

cow muck, nature, grass and trees feeling good, calm, comforted

at peace with the world

Baking bread, memories… how life used to be

simple pleasure, washing… all over me

My well-being feels like fishing on the river bank

adrenalin racing, catching fish, cold water thrilling me soft and cuddly, safe, secure in contact, loved, relationship

you and me Happy hours, good things, relief, spontaneity

My well-being sounds like soothing waves bird song, holiday, sitting by the sea

a trickling stream, buzzing bees flying on a gentle breeze

the rolling sea, crashing waves stimulating, motivating

rhythmic melody uplifting, tranquillity

comforting, relaxing me

My senses bring me well-being In ways I didn’t expect to be

bringing joy and new discovery to me

Poem created by Diane Hinchliffe, Shaping our Age Involvement Worker: Kirklees. Created from words shared by participants in a well-being focus group. Society for the Blind: 7 February 2013.

Appendix 2



Materials used in a Discussion Session with Participants in a housing scheme in Kirklees, November 2012.

Appendix 2


Darnall Dementia Awareness Group produced information cards in various designs for distribution. Here is one example.

The Group designed their own logo.

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time

Do you know about dementia?

77% of people

with dementia

feel anxious or

depressed.

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harit

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1598

8 &

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0389

24

If you are concerned about your own

health or of someone close to you it

is important to contact your GP.

For further information about Dementia

or if you or someone you know requires

further support please contact:

Alzheimer’s Society Helpline:

0300 222 11 22

Darnall Dementia Group:

0114 2262571Source: report - Dementia 2012:

A national challenge

Alzheimer’s Society

Appendix 2



royalvoluntaryservice.org.uk/shapingourage

royalvoluntaryservice.org.uk/shapingourage

Documents

Involving Older Age: The route to twenty-first century ... · The Participants: Almost all were in their late eighties and early nineties and had either physical impairments or were