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A Stakeholders Conference on Dementia

27th November 2014

A Sense of Belonging

A Stakeholders Conference on Dementia

Contents

Overview 3

Chairperson’s Welcome and Introduction 3

Setting the Context 3

Reimagining Dementia - Agnes and Nancy 6

Morning Workshops 7

Afternoon Chairperson’s Welcome back 8

Dementia Friends Scotland 8

Afternoon Workshops 10

Head, Heart, bag, bin 11

Summary and Key themes 12

Words to end the day 13

Appendix 1: Programme for the Day 15

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1. Overview

1.1 A stakeholder conference on Dementia was organised by members of the Lothian Dementia Implementation Group on 27 November 2014. The purpose of the event was to acknowledge the national and local focus and commitments on dementia and to share good practice that is taking place across Lothian.

1.2 The event was attended by eightythree people and was a day long stakeholder conference held in the Edinburgh Conference Centre on Heriot Watt University’s Edinburgh Campus. Participants came from a variety of organisations and sectors including NHS Lothian, local authorities, the voluntary sector, care home and carers.

1.3 The day included presentations and workshops to update attendees on key developments and highlight recent work taking place across Lothian in relation to the key commitment areas of Scotland’s National Dementia Strategy 2013 -2016.

1.4 Throughout the day and during the breaks participants could visit the marketplace where a number of organisations hosted stalls. This was a great networking opportunity and an effective way of raising awareness and knowledge about the wide range of service s and support available.

1.5 The feedback from the event will be presented to the Lothian Dementia Implementation Group and other strategy and implementation groups and practice across Lothian. And wil help to shape and inform our future priorities,

2. Chairperson’s Welcome and Introduction

2.1 The morning of the conference was chaired by Alex McMahon Director of Strategic Planning, Performance, Reporting and Information NHS Lothian, who welcomed all attendees.

2.2 He gave a warm introduction to the event, outlining the purpose of the day and of the work that is to be the focus for conference.

2.3 He highlighted the Directorate’s Strategic role for dementia and that the focus of today which was an opportunity to take stock of where we are up to, to identify the challenges of delivering good quality care for people with dementia and enabling our communities to be dementia aware.

3. Setting the Context

3.1 Linda Irvine, Strategic Programme Manager , Mental Health and Wellbeing, NHSgave a progress update on Dementia both from a national and local perspective.

3.2 Linda’s presentation covered the key milestones nationally since 2007 giving examples of local activity. She then focused on the central role of relationships in working with people with dementia and their carers and this was a theme that was replicated throughout the day.

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4. Reimagining Dementia - Agnes and Nancy A film funded by ESRC and produced at Southampton University

4.1 Agnes and Nancy are members of the Scottish Dementia Working Group which is the independent voice of people with dementia funded by Alzheimer Scotland and the Scottish Government.

4.2 In the film Agnes was diagnosed with dementia in her fifties. Five years have now passed and we follow Agnes in her quest for renewal and along the way our notions of what it means to have dementia are challenged and given a fresh perspective.

4.3 This short film is about friendship and living with dementia. It was chosen to be screened at this event to give a perspective from people living with dementia and tied in with the themes of personal stories, relationships and risk.

4.4 You can view the film herehttp://vimeo.com/32903503

Alex acknowledged the emotional aspects of the film and offered people the opportunity to give reflections in the main conference and during the coffee break.

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5. Morning Workshops

5.1 Participants were invited to select one workshop to attend from a choice of five.The table top discussion and comments in Section 10 reflected how participants valued the workshops.

5.2 Technology Enabled Care(Facilitated by Heather Laing, Craig O’Donnell and Lesley Hughes)

To raise awareness of technology available to support carers and their relatives living with Dementia.

To raise the profile of Technology Enabled Care, background to Community alarm Telecare Service, how technology can support those living with Dementia and their family / carers.

How technology is to be embedded in the ‘My Steps to Support’ asessment process.

5.3 Flexible Short Break Scheme in West Lothian(Facilitated by Jillian Dougall)

To give an overview of how this scheme operates Examples of how it has been used to enable those with dementia and their

carers to design and take truly personalised short breaks. Some people have been able to increase the amount of short breaks they are

able to enjoy by using the scheme creatively in conjunction with others

5.4 Sporting Memories Network – Building innovative community activities.(Facilitated by Chris Wilkins, Norrie Gallagher)

To explore potential of extending the kinds of activities offered within new groups.

To explore how best to reach and convey the nature of new activities to people with dementia and their carers.

The workshop offered a taste of some of Sporting Memories Network’s reminiscence activities and began to explore what other activities might be introduced to participants (and their carers) through the model of a weekly social group.

5.5 Dementia Friendly Communities – Building Community Connections(Facilitated by Sue Northrop)

To share the learning and experience of Dementia Friendly East Lothian To help build understanding and awareness of how building community capacity

is critical to the long term success of dementia policy and practice.

The workshop focused on the experience of building dementia friendly communities in East Lothian. Dementia Friendly East Lothian is a community led and driven initiative with a specific focus on building local capacity and understanding to support people with dementia through different stages. The workshop used this and other experiences of community led approaches to explore how different

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communities have responded and what changes are being made that have a direct impact on the lives of people with dementia. It discussed the potential for developing community based approaches further and what helps and hinders this approach.

5.6 Dementia Champions showcase(Facilitated by Jenny Reid, Avril Brown, Roz Gordon, Liz Harvey)

To share information on the role of the dementia champion and give some examples of work being taken forward by champions across Lothian.

Three Dementia Champions shared how they have used their learning in their role including: Improving dementia friendly design in acute hospital through adapting single

room accommodation. Creating a “Living well with dementia” resource for community service outlining

local resources as well as practical solutions and problem solving strategies. Team approach to improve the experience for patients and their carers in a

continuing care NHS unit for people with dementia.

6.0 Afternoon Chairperson’s Welcome back

6.1 Helen Hay, Regional Manager Alzheimer Scotland chaired the afternoon session.

6.2 Helen spoke positively about the developments in delivery of services including Post Diagnostic Support for people with dementia and highlighted the partnership working between NHS, Local Authorities and Alzheimer Scotland.

6.3 Helen also reflected and built on the theme of relationships and people’s lived experiences as key indicators for delivering person centred care.

7.0 Dementia Friends Scotland

7.1 Helen introduced Dementia Friends Scotland - a new programme run by Alzheimer Scotland to support individuals and organisations to become dementia friendly.

7.2 The whole conference participated in the first stage of becoming a Dementia Friend and Helen encouraged all to complete the process by viewing a second film and sign up to become a dementia friend via: dementiafriends.org.uk

7.3 Helen enthusiastically encouraged all attendees to spread the work and support Dementia Friends.

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8. Afternoon Workshops

8.1 Participants were invited to select one workshop to attend from a choice of five.The table top discussion and comments in Section 10 reflected how participants valued the workshops

8.2 Facilitating Activity as Dementia progresses(Facilitated by Catherine Woodcock)

Interactive workshop to support people, demystify “activity” and support quality of life included: Brief outline of what is activity and why it matters to the person carers / care

staff. Expectations and opportunities – understanding what a person can do and how

to support this. The importance of enhancing communication and involvement through objects,

the environment and use of self. Resources available for guidance and support and evaluation The Pool Activity

Level , Making Every Moment Count , Living Well through Activity in Care Homes – the toolkit COT

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8.3 The importance of exercise for people with dementia(Facilitated by Jackie Hodge, Joanna Cole-Hamilton)

To explain the importance of exercise for people with dementia using two examples of community exercise groups currently running in the community: ‘Fit for Life’ and ‘Keep Moving’ – two community exercise groups for people with

dementia and other mental health conditions. The session finished with a ‘Tai Chi’ taster for participants.

8.4 The Edinburgh Behaviour Support Service and the Bridging Team (Facilitated by Michelle Adair, Debbie O’Donnell-Collins, Andrew Finlayson)

This workshop had two elements: To showcase the results of a successful Change Fund Project – the Edinburgh

BSS which is actively reducing distress for clients and caregivers of people with dementia by using a psychosocial approach as an alternative to antipsychotic medication.

To share the success of the Bridging Team which provides responsive specialist Mental Health Practitioner input to improve staff knowledge and understanding of care for patients presenting with behaviours that challenge g and mental health illness in Medicine of the Elderly wards.

8.5 Post Diagnostic Support the way forward(Facilitated by Alan Midwinter, Tara Mccarthy, Eleanor Heeps)

To increase awareness of what is available now and what might be in the future. To discuss the Heat Target and represent Edinburgh’s response to this. C consider the benefits to addressing this as a partnership that includes the

voluntary sector. How the 5 pillars and focused work in this area can enable people to feel more in control.

8.6 An enabling dementia home(Facilitated by Jenny Reid)

To increase understanding on some basic principles of dementia friendly design and consider how they apply in our home environments. This workshop provided an overview of some of the principles of dementia friendly design and how these apply in home environments. There were opportunities to discuss how these principles could be utilised in a range of settings.

9. Head, Heart, bag, bin

9.1 To promote discussion, share experiences of the day and to contribute to the evaluation we used the Head, heart, bag, bin evaluation tool to encourage participants to think about what they had learnt from the day and to provide feedback about the event.

9.2 This tool proved popular and helped to facilitate and encourage wide ranging discussion.

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9.3 Participants working at their tables were asked to use four post-its to write down something to represent the head, heart, bag and bin. The categories were:.

Head: something you have learnt from being part of this event today

Heart: something you have felt or experienced from being part of this event

Bag: something you will remember and take away from this event e.g. information for signposting

Bin: something that you thought wasn’t so good or you would want to leave behind e.g. in relation to the day as a whole

9.4 Participants completed this activity individually followed by brief table top discussion to highlight any key themes.

9.5 The flipcharts were written up and key themes identified.

10. Summary and Key themes

10.1 Overall, the day was evaluated extremely positively.

Many people commented on the wealth of interesting information about projects and initiatives on dementia.

The comments in the table top discussion and comments on the day indicated that people felt encouraged and inspired by the breadth of work on dementia that is taking place across Lothian and the creativity of individuals and groups.

People valued the partnership approach and people working together to make a difference in dementia care and services.

10.2 Head: something you have learnt from being part of this event today

A key area of learning from the day was about Dementia friendly communities, dementia friendly environments and joining the Dementia Friends Scotland network.

Many participants were inspired by Agnes and Nancy film and it highlighted the importance of focusing on the person with dementia not the condition.

Another key area was that it is important to focus on the small things when interacting with people with dementia.

10.3 Heart: something you have felt or experienced from being part of this event

Much of the discussion in relation to experiences of the day was that the Agnes and Nancy film was very powerful and encouraged people to think about the individual throughout their dementia journey.

People commented that there was a lot of passion in the room.

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The importance of personal stories was highlighted.

10.4 Bag: something you will remember and take away from this event e.g. information for signposting

Participants listed gaining information and useful websites e.g. ALISS and Edinburgh choices, participating in Dementia Friends Scotland and encouraging others in their organisations/teams to complete this programme.

Feeling part of a move forwards and a more positive approach for people with dementia.

People valued gaining information and learning from the two workshops that they participated in.

10.5 Bin: something that you thought wasn’t so good or you would want to leave behind e.g. in relation to the day as a whole

The overall feedback was that the day was very positive and that all elements of the day were useful and valuable.

There was feedback about the organisational and environmental aspects of the day e.g. signage to the venue and the low temperature.

People commented that the day could have been longer and to include more time to attend workshops.

10.6 Additional Comments

Relationship centred care – The Senses Framework by Mike Nolan

Inspiring and positive showing aspects of life after dementia diagnosis

The Agnes and Nancy Film demonstrated that getting a diagnosis can open a door and opportunities and friends.

10.7 The feedback and comments will be feed into the at the Lothian Dementia Implementation Group and other dementia planning groups across Lothian and will help inform future planning and delivery ofservice and initiatives that support people with dementia, their circles so support and the wider communities in which they live.

11. Words to end the day

11.1 After the table top discussion, participants came back for a final discussion and words to end the day. Alex invited all speakers to the podium and invited questions from the participants.

11.2 This part of the conference was an opportunity for people to share thoughts, ideas, reflect on what they had heard and learned and to discuss any issues they felt relevant to feed into the Lothian Dementia Implementation Group.

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11.3 One the questions focused on the reason to screen Agnes and Nancy and the relevance to the audience today. The reasoning was that the audience today was a mixed audience and that the film was an opportunity to hear directly from people with lived experience of dementia. The majority of the feedback on the film was extremely positive and several people requested the link to show the film in their own workplace setting.

11.4 There were positive comments about learning from the day, and the sharing of work from across different organisations.

11.5 The day concluded by Alex thanking Sheena Lowrie for leading this workstream and Prappy Campbell for organising the event and all presenters and workshop facilitators and market stall holders.

11.6 Finally he thanked all for attending and participating in what was deemed to be a very productive and inspiring day.

15 January, 2015

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Appendix 1 – Programme for the day

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