Final Evaluation Report

Transcription

1 Dorset Dementia Friendly Communities Project Final Evaluation Report June 2014 Prof. Anthea Innes, Clare Cutler, Dr. Michelle Heward and Sarah Hambidge

2 CONTENTS OF REPORT LIST OF TABLES... 4 ACKNOWLEDGEMENTS... 5 EXECUTIVE SUMMARY BACKGROUND TO DDFC PROJECT Consultation events Why Dorset? What is a Dementia Friendly Community and why is it needed? SUMMARY OF THE DDFC PROJECT Project partners and leadership Aim of the project Localities Dementia Action Alliance Co-ordinators (DAACo s) CONDUCT OF THE EVALUATION Intended evaluation process Actual evaluation process Ethical Considerations PROGRESS IN EACH LOCALITY Comparison of progress in each locality Overview of progress in Blandford Forum Overview of progress in Christchurch Overview of progress in Dorchester Overview of progress in Poole Overview of progress in Southbourne Overview of progress in Weymouth and Portland

3 4.8 Overview of progress in Wimborne Minster DISCUSSION OF FINDINGS Key areas that underpin a dementia friendly community The role of the Action Alliance Coordinator (DAACo s) A structured approach Project expectations, management and transparency DDFC Project sustainability CONCLUSIONS RECOMMENDATIONS REFERENCES APPENDICIES Appendix A: Original outcome measures Appendix B: Criteria for Postcode Address File Appendix C: Postal Survey sent to members of the public Appendix D: Online Survey sent to businesses Appendix E: DACC Interview Schedule (first interview) Appendix F: DACC Interview Schedule (second interview) Appendix G: DACC Group Interview schedule Appendix H: Focus Group Schedule (people with dementia and their carers) Appendix I: Focus Group Consent Form Appendix J: Focus Group Participant Recruitment Poster Appendix K: Project Information Sheet: People with Dementia Appendix L Alzheimer s Society Questionnaire overview and results Appendix M Business Survey results Appendix N Public Survey Results Appendix O: Project Information Sheet: General Public

4 LIST OF TABLES Table 1: Planned and actual localities in the DFFC project Table 2: Employment details for the DAACo s Table 3: Evaluation Framework used Table 4: Localities against Alzheimer DFC guidance Table 5: Blandford Forum Demographic Information Table 6: Christchurch - Demographic Information Table 7: Dorchester - Demographic Information Table 8: Poole - Demographic Information Table 9: Southbourne - Demographic Information Table 10: Weymouth and Portland - Demographic Information Table 11: Wimborne Minster - Demographic Information

5 ACKNOWLEDGEMENTS We would like to thank all members of the project team who participated in this evaluation. We would especially like to thank the Dementia Action Alliance Coordinators for all of their hard work and co-cooperation during this evaluation. Our thanks are extended to all of the businesses, voluntary and private organisations and anyone else who has engaged with this project to create dementia friendly communities throughout Dorset. Thank you to any person living with dementia and their carers and family for their assistance with this evaluation. 5

6 EXECUTIVE SUMMARY Bournemouth University Dementia Institute (BUDI) was commissioned to provide an independent evaluation of the Dorset Dementia Friendly Communities (DDFC) project, as part of an inter-agency partnership funded by NHS South of England Dementia Challenge in In response to the Prime Ministers Dementia Challenge (Department of Health, 2012), and the national Dementia Friendly Community (DFC) initiative (Department of Health, 2012), 10 partners from across Dorset developed the DDFC project. The overall aim of the DDFC project was: To create dementia friendly communities and local Dementia Action Alliances involving local businesses, charities, independent, voluntary and community services, and independent providers as well as the statutory sector. This was undertaken in seven localities in the Dorset region (Blandford Forum, Christchurch, Dorchester, Poole, Southbourne, Weymouth and Portland, and Wimborne Minster). This evaluation focuses on the first year of activity of the DDFC project between March 2013 and March Ethical approval was obtained from the Ethics Committee (School of Health and Social Care, Bournemouth University) prior to conducting the evaluation. The evaluation uses a mixed methods approach: primary data was collected using a combination of postal and online surveys, individual and group interviews and focus groups; and secondary data included the collection of Alzheimer s Society Quarterly Reports, monthly monitoring forms, monthly highlights/good news stories, DDFC Project Steering Committee monthly meeting minutes, press releases and news reports (where available) and Local DAA Action Plans from the seven localities. Data was analysed using a content analysis method against the evaluation framework. The evaluation framework is based on the Alzheimer s Society (2013) framework, which provides ten areas of focus for a DFC. The progress of each locality is measured against this framework. The approach to the implementation of the project varied in each of the seven localities, however three commonalities were: the development of Dementia Action Alliances (DAAs) in six of the localities; an increase of dementia awareness training (a total of 599 people across the localities have received awareness training; and limited involvement or formal consultation with people with dementia. Establishing DAAs appear to be significant in ensuring the sustainability of work beyond the funding of this project. 6

7 To ensure the successful development of the DFC initiatives in Dorset, and similar schemes nationally, this evaluation provides the following recommendations: 1. Actively involve people with dementia and their carers in the development of the DFC. 2. Define a clear structure from the outset. 3. Focus on the whole community. 4. Promote the role of an Action Alliance Coordinator when setting up a DFC. 5. Create a steering group with the right mix of people with a can do approach. 6. Obtain support from key strategic figures within the community. 7. Understand the difference between being dementia aware and dementia friendly. 8. Promote transparency between the strategic committee and delivery team. 9. Develop and promote a launch event as a means of attracting good publicity and stimulating local interest. 10. Promote a DFC as a community inclusive for all. 11. Share ideas and best practice across DFCs. 7

8 1. BACKGROUND TO DDFC PROJECT There were an estimated 44.4 million people living with dementia worldwide in 2013 (Alzheimer s Disease International, 2014). This is estimated to increase to 75.6 million in 2030, and million by 2050 (Alzheimer s Disease International, 2014). There are currently 820,000 people living with dementia in the UK, projected to rise to 1,000,000 people by 2021 (Alzheimer Society, 2014). In Dorset the number of people aged 65 or over living with dementia will increase from 7,796 in 2010 to 11,734 by 2025 (Dorset Health Scrutiny Committee, 2010). This rapid increase in the number of people who will be living with dementia in the next few years has resulted in significant public and political commitment to drive improvement and change for those affected by dementia in England, Wales and Northern Ireland (Alzheimer Society, 2013). Whilst many initiatives are progressing under the agenda of age friendly communities (WHO 2007), in the UK the Prime Minister launched a specific Dementia Challenge (Department of Health, 2012). The aim of the Dementia Challenge is to improve the lives of people with dementia and their families through three areas of action: driving improvements in health and care, creating dementia friendly communities and improving dementia research (Department of Health, 2012). This initiative aimed to create 20 Dementia Friendly Communities (DFCs), including cities, towns and villages in the UK by 2015 (Department of Health, 2012). In response to the Prime Ministers Dementia Challenge, and the national Dementia Friendly Community (DFC) initiative, 10 agency partners from across Dorset worked together writing a proposal for the Dorset Dementia Friendly Communities (DDFC) project. The overall aim of the DDFC project was: To create dementia friendly communities and local Dementia Action Alliances involving local businesses, charities, independent, voluntary and community services, and independent providers as well as the statutory sector. This project was funded by the NHS South of England Dementia Challenge in Part of this funding commissioned Bournemouth University Dementia Institute (BUDI) to provide an independent evaluation of the project over the period March 2013 March This report presents the findings of the evaluation. To provide context to the evaluation we first present an overview of preliminary consultation work conducted by the Alzheimer s Society used to inform the DDFC project proposal. 8

9 1.1 Consultation events Two consultation events were conducted by the local Alzheimer s Society in 2012 to involve and engage with people affected by dementia and to help shape local services across Poole, Bournemouth and East Dorset. During the consultation events 54 people with a diagnosis of dementia and their carers were invited to discuss their experiences and views on a range of topics, including: health care, support in the community, a single specialist hospital site and information provision. The findings of the consultation events suggested that: There is a strong focus across multiple organisations to create dementia friendly communities, and in some areas Dementia Action Alliances have been set up to support the development of these. In the south west there are two in Plymouth and Torbay, with others beginning to emerge. The idea of a Dementia Action Alliance ultimately is to ensure that people affected by dementia achieve a better quality of life. The starting point for this is to make more people aware of dementia and its effect on the individual. One way to do this could be to identify organisations who may be influential in raising awareness of dementia amongst their staff such as supermarkets, department stores and other businesses and who can make a real difference by improving the environments where we live, work and socialise. Alzheimer's Society is helping to support and enable the process. A project manager has been recruited for the South West to provide guidance on how to set up local alliances. 1.2 Why Dorset? 9 Alzheimer Society, p8 Dorset has one of the largest populations of older people and yet one of the lowest rates of dementia diagnosis in the UK. In response to these demographics and the findings of the Alzheimer s Society consultation events, the DDFC project proposal suggested that Dorset is uniquely placed to develop DFCs due to: Widespread rural communities which have historically worked at being self-supporting. The more recent award winning Partnership for Older People Programmes (POPP) in Dorset and Poole which have further added to the strong sense of community. The low incidence of dementia diagnosis which prompts and encourages radical solutions to be found to engage the community with the health and social care economy. A commitment to partnership approaches across health, social care, education and voluntary sectors. Recognition and commitment from Dorset Clinical Commissioning Group of the importance of dementia and the need to improve services.

10 1.3 What is a Dementia Friendly Community and why is it needed? The Alzheimer s Society (2013) defines a dementia friendly community as: one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them. Alzheimer s Society, 2013: Viii We will now provide a summary of the DDFC project, followed by sections presenting the format of the evaluation, progress of the DDFC project in each locality, discussion of findings, conclusions and recommendations. The conclusions highlight key learning points, as well as the wider successes and challenges of the project. This may be useful not only for the seven localities in Dorset going forward into the future, but also for other localities that may be interested in developing their own DFCs or Dementia Action Alliances (DAAs). 10

11 2. SUMMARY OF THE DDFC PROJECT The following section gives an overall summary of the DDFC project. 2.1 Project partners and leadership The DDFC project was developed by a cross agency partnership involving: Age UK (Dorset); Alzheimer s Society (Dorset); Bournemouth Borough Council (Adult and Community Services); Borough of Poole Council (Adult Social Care); BUDI; Dorset County Council; Dorset Clinical Commissioning Group Dorset Health Care; University Foundation Trust (DHC); Dorset Partnership for Older People Programme (POPP); Prama Care. The DDFC project proposal was originally submitted by the Senior Commissioning Manager of the Pan Dorset NHS Cluster / Dorset Clinical Commissioning Groups (CCG). After the Senior Commissioning Manager changed roles the planned project leadership changed. The delivery of the DDFC project was assigned to the Alzheimer s Society. A representative from each of the agency partners attended monthly meetings chaired by the Chief Executive of Prama Care. 2.2 Aim of the project The aim of DDFC project was outlined in the proposal as: To create dementia friendly communities and local Dementia Action Alliances involving local businesses, charities, independent, voluntary and community services, and independent providers as well as the statutory sector. 2.3 Localities The DDFC project proposal outlined eight localities within Dorset to become DFCs. These areas were selected based on population size and potential impact of the initiative. After further consultation and consideration, this was reduced to seven localities (three seaside towns, three market towns and one town/borough) as shown in Table 1. The rationale for the inclusion of the seven localities was in response to 11

12 the diverse geographical areas within Dorset and the varying communities that these areas represent (see Section 4 for individual area statistics). Organisations and groups wishing to join their local DAA were provided with local or national versions of the DAA Action Plans in which they could document how they would support and improve services for people with dementia and their carers. Table 1: Planned and actual localities in the DFFC project Planned localities Blandford Bridport Dorchester Highcliffe Poole and Bournemouth Weymouth Wimborne Swanage Actual localities Blandford Christchurch Dorchester Poole Southbourne Weymouth and Portland Wimborne 2.4 Dementia Action Alliance Co-ordinators (DAACo s) The DDFC project proposal specified the appointment of Dementia Action Alliance Co-ordinators (DAACo s) to be employed to develop DFCs within the chosen localities. Three DAACo s were employed by the Alzheimer s Society on fixed term contracts ending in August 2014, five months beyond the project evaluation date. One DAACo s was employed by Prama Care on a fixed term contract ending in March As outlined in the proposal, the role of the DAACo s was to: Raise awareness of dementia within the selected communities, identify local volunteer coordinators and highlight the benefits of being dementia friendly for GP s, hospitals, acre homes and care settings, local businesses, schools and colleges, shops and faith groups, social and sports clubs, pubs, town centre managers and so on by a variety of means and using a selection of dementia awareness raising and training tools. They will encourage organisations and individuals to sign up to a local action plan and form a network, linked to the South West Dementia Action Alliance steering group. Employment details for the DAACo s are documented in Table 2. 12

13 Table 2: Employment details for the DAACo s Employer Locations Hours per week Contract dates DAACo s 1 Alz Society Poole and Wimborne 17 April 13 - Aug 14 DAACo s2 Alz Society Christchurch and Southbourne 21 April 13 - Aug 14 DAACo s3 Alz Society Dorchester and Weymouth 21 April 13 - Aug 14 DAACo s4 Prama Care Blandford 16 (reduced to 7) April 13 - March 14 13

14 3. CONDUCT OF THE EVALUATION This section provides an overview of the conduct of the evaluation presented in three sections: intended evaluation process, actual evaluation process and ethical considerations. 3.1 Intended evaluation process Measurable outcomes for the DDFC project were grouped under six categories within the original project proposal (See Appendix A for specific measures): people affected by dementia; carers of people with dementia; organisational outcomes; innovation and culture outcomes; quantifiable benefits; descriptive statistics to measure quantifiable benefits Many of these outcomes are long term aims, and therefore it was not possible to measure the success of the DDFC project against them within the timeframe of this evaluation. Appendix A details the measureable outcomes and our assessment of the possibility to report against these. It was only possible to report against 5 of the 34 original DDFC project outcomes (as detailed in Appendix A), therefore a new evaluation framework was developed. 3.2 Actual evaluation process This new evaluation framework is based on the 10 key areas that underpin a dementia friendly community as outlined by the Alzheimer s Society (2013) (see Table 3). These 10 areas were used by the BUDI team to evaluate the DDFC project. Appendix A shows how the original outcome measures have been linked to this framework. 14

15 Table 3: Evaluation Framework used ID reference AS1 AS2 AS3 AS4 AS5 AS6 AS7 AS8 AS9 AS10 ALZHEIMERS SOCIETY 10 DFC CATEGORIES (2013) Involvement of people with dementia Shape communities around the needs and aspirations of people living with dementia alongside the views of their carers. Each community will have its own diverse populations and focus must include understanding demographic variation, the needs of people with dementia from seldom heard communities, and the impact of the geography, e.g. rural versus urban locations. Challenge stigma and build understanding Work to break down the stigma of dementia, including in seldom heard communities, and increase awareness and understanding of dementia. Accessible community activities Offer organised activities that are specific and appropriate to the needs of people with dementia. Also ensure that existing leisure services and entertainment activities are more inclusive of people with dementia. Acknowledge potential Ensure that people with dementia themselves acknowledge the positive contribution they can make to their communities. Build on the goodwill in the general public to make communities dementia friendly. Ensure an early diagnosis Ensure access to early diagnosis and post-diagnostic support. Have health and social care services that are integrated and delivering person-centred care for people with dementia in all settings. Practical support to enable engagement in community life Deliver a befriending service that includes practical support to ensure people with dementia can engage in community life as well as offering emotional support. Community-based solutions Support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes. Community based solutions to housing can prevent people from unnecessarily accessing healthcare and support people to live longer in their own homes. Consistent and reliable travel options Ensure that people with dementia can be confident that transport will be consistent, reliable and responsive and respectful to their needs. Easy-to-navigate environments Ensure that the physical environment is accessible and easy to navigate for people with dementia. Respectful and responsive businesses and services Promote awareness of dementia in all shops, businesses and services so all staff demonstrate understanding and know how to recognise symptoms. Encourage organisations to establish strategies that help people with dementia utilise their business Source: Alzheimer s Society,

16 3.2.1 Methods of data collection and analysis This evaluation focuses on the first year of activity within the seven localities of the DDFC project between March 2013 and March 2014, using a mixed methods approach (Bryman, 2008). The evaluation team collected the following primary data: 1. A postal survey sent randomly to members of the public residing in the seven localities in September 2013, using the Postcode Address File (PAF). PAF IS a database which contains all known delivery points and postcodes in the United Kingdom. The criteria used for the PAF search is outlined in Appendix B. 51 people responded out of 700 making a response rate of 7.3%. This is a low response rate as the usual anticipated rate is 25%. See Appendix C for a copy of this survey. 2. The same survey (see Appendix C) was sent as a follow up postal survey back to the members of the public that responded to the initial postal survey in March 2014 (25 people responded out of 51, a 49% response rate). This is a higher than usual response rate. 3. An online survey sent to businesses within the seven localities through Survey Monkey in March All four DAACo s were asked to provide addresses for businesses in their locality that could be approached to complete the survey. The web link to this survey was sent to all the addresses that were provided (6 businesses responded out of 46, a 13% response rate). This is a low response rate (See Appendix D for a copy of this survey). 4. Seven semi-structured individual interviews (one with each DAACo s covering each of their localities) were conducted in August DAACo s4 was unable to attend and completed a paper version of the questions and returned this to us in September (See Appendix E for the Interview Schedule). 5. Seven semi-structured individual interviews (one with each DAACo s covering each of their localities) were conducted between January 2014 and March (See Appendix F for the Interview Schedule). 6. One group interview with the four DAACo s in March (See Appendix G for the Group Interview schedule). 7. Two focus group with people with dementia and their carers, one in Weymouth and the other in Blandford Forum in September, (See Appendix H for the Focus Group Schedule). In both focus groups only one person with dementia and their carer was present. Please note that seven focus groups (one in each locality) were planned; however no participants attended the advertised focus groups in the other five localities. (See Appendix I for focus group consent form, Appendix J for focus group participant recruitment poster and Appendix K for participant information sheet). 16

17 The following secondary data was provided to the evaluation team by the Alzheimer s Society, Prama Care and the DAACo s: 1. Alzheimer s Society Questionnaires (see Appendix L). 2. Alzheimer s Society Quarterly Reports from the seven localities 3. DAACo s monthly monitoring forms 4. DAACo s monthly highlights/good news stories 5. DDFC Project Steering Committee monthly meeting minutes 6. Press releases and news reports from the seven localities 7. Local DAA Action Plans from the seven localities All data was analysed using a content analysis method against the Evaluation Framework shown in Table 3. Where possible this included the measurement of the outcomes in Appendix A. It should be noted that the low response rates to the public and business surveys, and the Alzheimer s Society Questionnaires meant the results are not representative of the response population. Therefore the findings have only been incorporated within the report where relevant. A descriptive analysis of the responses for each survey is also presented in the appendices (Appendix L: Alzheimer s Society Questionnaires overview and results, Appendix M: Business Survey results, and Appendix N: Public survey results). 3.3 Ethical Considerations Ethical approval for this evaluation was obtained from the Ethics Committee based at the School of Health and Social Care, in Bournemouth University. The following ethical principles were adhered to throughout this evaluation: Focus group participants were provided with an information sheet and consent form as above. General project information sheets were ed to the ACC s to give out to people they came into contact with as part of the project so that they were informed about this evaluation (Appendix K and Appendix O). All focus group participants were recruited through the Alzheimer s Society. At no point did the evaluation team approach any individual without prior discussion with the DAACo s. Participation was entirely voluntary. Interview transcripts were anonymised prior to analysis and interviewees were assigned a code number in line with confidentiality and anonymity arrangements. Surveys were designed to include an explanation of the study and specified that consent was being given via participant s completion of the survey. To comply with the University s records management policy, all project files are stored on password protected network drives and data is not available to third parties. 17

18 4. PROGRESS IN EACH LOCALITY This section outlines the progress of each of the seven localities from all data sources between March 2013 and March The analysis is presented in two parts, starting with a comparison of the progress made in each of the seven localities against the Alzheimer s Society (2013) guidance. This is followed by a demographic description and brief narrative highlighting the key achievements in each of the seven localities. 4.1 Comparison of progress in each locality There are similarities in the progress made within each of the seven localities, against the Alzheimer s Society (2013) guidance (as outlined in Table 4). There has been an increase in dementia awareness raising activity and the number of people attending awareness raising sessions in all localities throughout the DDFC project. Comparing progress in all seven localities against the Alzheimer s Society (2013) guidance, there is clearly more progress in the following areas: challenging stigma (AS2), accessible community activities (AS3), and respectful and responsive businesses and services (AS10). In the same way, comparing progress in all seven localities against the Alzheimer s Society (2013) guidance, there is less progress in the following areas: involving people with dementia (AS1), acknowledge potential (AS4), ensure an early diagnosis (AS5), practical support to enable engagement in community life (AS6) (recommends delivering a befriending service), communitybased solutions (AS7), consistent and reliable travel options (AS8), and easy-tonavigate environments (AS9). There is then a need for all seven localities to develop an inclusive, community focused approach to becoming dementia friendly through the use the Alzheimer s Society (2013) guidance. For example none of the members of the local DAA steering groups were people living with dementia. In Christchurch, Dorchester, Poole, Southbourne, Weymouth and Portland, and Wimborne Minster the Alzheimer s Society has committed to continue funding the DAACo s posts following the initial 12 month period of the DDFC project, from March to September These six localities have set up a local DAA and are working towards being self-sustaining through a steering group of local people that are volunteering to commit to take this work forwards once the DAACo posts cease. In Christchurch, Dorchester, Poole, Southbourne, Weymouth and Portland, and Wimborne Minster the DAACo s are currently working with the steering group to ensure that they continue to: - meet regularly as a steering group and/or smaller working groups to undertake the work of the local DAA; - network with local organisations and promote the local DAA; and 18

19 - regularly review the commitment of organisations that sign up to become part of the local DAA. A key difference between the progress in each of the seven localities was the use of a Memory Aware Scheme in Blandford Forum, which differed to the other six localities that all followed the DAA guidance. No DAA has therefore been set up in Blandford Forum at this point. Prama Care has committed to continue this work in Blandford Forum following the initial 12 month period of the DDFC project. As of September 2014, a full time community development worker will be appointed to continue this work. At the time of this evaluation however, there were no mechanisms to ensure that the Blandford DFC initiative becomes self-sustaining (such as a steering group of local people that will volunteer to take this work forwards), or to review the commitment of organisations that sign up to become part of the Blandford Forum Memory Aware Scheme. 19

20 Table 4: Localities against Alzheimer DFC guidance Seven localities Alzheimer s Society (2013) 10 areas of focus to become a dementia friendly community Blandford Forum Christchurch Dorchester Poole Southbourne Weymouth and Portland Wimborne Minster Involvement of people with dementia (AS1) Challenge stigma and build understanding (AS2) x Number of people with dementia that are members of the local DAA Steering Group = 0 x Formal Consultation Exercise undertaken with people with dementia Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1) Formal Consultation Exercise undertaken with people with dementia Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1) x Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1) Formal Consultation Exercise undertaken with people with dementia Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1) Formal Consultation Exercise undertaken with people with dementia Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1) x Number of people with dementia that are members of the local DAA Steering Group = 0 Dementia Action Alliance set up to support dementia friendly communities (DS1)

21 Raised community awareness of dementia and its cause and how it affects people (QB4): 30 people have attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 75 people have attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 150 people have attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 40 people attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 102 (204 in Bournemouth) people have attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 80 people have attended dementia awareness raising sessions Raised community awareness of dementia and its cause and how it affects people (QB4): 20 people have attended dementia awareness raising sessions Number of people involved in local DAA Steering Group = 0 Number of local businesses that have allowed staff to receive dementia awareness training through this project = unknown Number of Dementia Champions through this project = unknown Number of Dementia Friends through this project = Number of people involved in local DAA Steering Group = 16 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 15 Number of Dementia Champions through this project = 1 Number of Dementia Friends through this project = 75 Number of people involved in local DAA Steering Group = 10 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 10 Number of Dementia Champions through this project = 5 Number of Dementia Friends through this project = Number of people involved in local DAA Steering Group = 19 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 20 Number of Dementia Champions through this project = 5 Number of Dementia Friends through this project = 30 Number of people involved in local DAA Steering Group = 11 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 13 Number of Dementia Champions through this project = 2 Number of Dementia Friends through this project = 93 Number of people involved in local DAA Steering Group = 6 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 4 Number of Dementia Champions through this project = 5 Number of Dementia Friends through this project = 80 Number of people involved in local DAA Steering Group = 12 Number of local businesses that have allowed staff to receive dementia awareness training through this project = 10 Number of Dementia Champions through this project = 1 Number of Dementia Friends through this project = 20 21

22 unknown 150 Number of local media mentions for dementia (DS3): 2 articles Number of local media mentions for dementia (DS3): unknown Number of local media mentions for dementia (DS3): 3 articles Number of local media mentions for dementia (DS3): 5 article Number of local media mentions for dementia (DS3): 1 article Number of local media mentions for dementia (DS3): 5 articles Number of local media mentions for dementia (DS3): 5 articles Accessible community activities (AS3) Acknowledge potential (AS4) Ensure an early diagnosis (AS5) Alzheimer's Society Singing for the Brain (started prior to DDFC project) Alzheimer's Society Memory Cafe (started prior to DDFC project) x Alzheimer's Society Singing for the Brain (started prior to DDFC project) Alzheimer's Society Memory Cafe (started prior to DDFC project) Age UK Melodies for Memories (started prior to DDFC project) Alzheimer's Society Singing for the Brain (started prior to DDFC project) Alzheimer's Society Memory Cafe (started prior to DDFC project) x x Alzheimer's Society Singing for the Brain (started prior to DDFC project) Prama Care Memory Café (launched at the start of the DDFC project). Dorset HealthCare University Foundation Trust run two Memory Cafes (started prior to DDFC project) x Alzheimer's Society Memory Cafe (started prior to DDFC project) x Alzheimer's Society Memory Cafe (started during the DDFC project) x x x x Age UK Melodies for Memories (started prior to DDFC project)x x x x x Forget me not x x coffee morning x x x x x x x x x x x x x x 22

23 Practical support to enable engagement in community life (AS6) (recommends a befriending service) Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Age UK run a befriending service for people with dementia across Dorset Community-based solutions (AS7) Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Age UK Memory Advisory Service Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Age UK Memory Advisory Service Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Age UK Memory Advisory Service Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) x x Age UK Memory Advisory Service Community developments and innovations (O5): Alzheimer s Society Dementia Support Worker (since 2008) Age UK Memory Advisory Service Consistent and reliable travel options (AS8) Easy-to-navigate environments (AS9) Safe Haven - Unknown Safe Haven developed Safe Haven developed Safe Haven - Unknown Safe Haven developed Safe Haven - Unknown Safe Haven in development x x x x x x x x x x x x x x Respectful and responsive businesses and services (AS10) Number of businesses and local organisations involved (DS2): 14 signed up to be part of the Memory Aware Scheme. (plus a further 17 have expressed an interest) Number of businesses and local organisations involved (DS2): 7 businesses signed up to the local DAA Number of businesses and local organisations involved (DS2): 28 businesses have signed local DAA Action Plans Number of businesses and local organisations involved (DS2): 8 businesses have signed local DAA Action Plans Number of businesses and local organisations involved (DS2): 9 businesses have signed local DAA Action Plans Number of businesses and local organisations involved (DS2): 8 businesses have signed local DAA Action Plans Number of businesses and local organisations involved (DS2): 6 businesses have signed local DAA Action Plans This table reflects the information provided by the project partners and therefore any inaccuracies are a reflection of the data available. 23

24 4.2 Overview of progress in Blandford Forum Blandford Forum is a Market Town on the River Stour in Dorset. 19.1% of the population of Blandford Forum is aged 65 and over (ONS, 2012). Table 5 provides an overview of the demographic characteristics for Blandford Forum. Table 5: Blandford Forum Demographic Information Local Area Blandford Source Forum Area Type Market Town Population 10,325 Census 2011 Very good and good health 81.1% Census 2011 (% of population) Poverty Indicator (% of population) 16.0% Housing and Council Tax Benefit March 2013 Number and % of population 2,011 / 19.1% ONS 2012 Mid-Year Estimates aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 6,002 English Indices of Deprivation, 2010 Blandford Forum adopted a Memory Aware Scheme developed by the DAACo and their Line Manager. The DAACo and their Line Manager focussed their attention on gathering support from sole traders in Blandford Forum. Shortly after the project started, the DAACo in Blandford Forum reduced their working hours from 16 per week to 7. The ACC felt this reduction in hours had a significant impact on the work they were able to do. Businesses in Blandford were approached by the DAACo and asked if they were interested in joining the Memory Aware Scheme. Under the scheme businesses that joined agreed to: - sign an agreement form stating they are part of the scheme; - give all members of their staff a copy of the Guide for Customer Facing Staff ; - display the forget-me-not logo in their window as a visual cue for members of the public to know which business are part of the scheme; and - undertake a review of their business periodically to consider other ways to improve their services for people with memory loss and dementia. Some of the achievements in Blandford Forum are highlighted against the Alzheimer s Society (2013) framework (as presented in Table 3): Involvement of people with dementia (AS1). At the time of writing no formal consultation exercise had been completed with people with dementia and carers in Blandford Forum. The DAACo had talked to eight people with dementia, who felt people within the town are well connected through informal

25 networks and did not raise any issues with regards to dementia care or services in Blandford Forum. Challenge stigma and build understanding (AS2). Prior to the DDFC project start date two awareness raising events were held in Blandford Forum. The first Is Blandford Dementia Friendly? in June 2012 and the second Blandford Financial Institutions in January 2013, both were hosted by Prama Care. Following discussions with members of the public in Blandford Forum and staff in organisations being approached to join the Blandford Forum Memory Aware Scheme, the DAACo felt that general awareness of dementia within the town was fairly low, although awareness of dementia in Blandford Forum was higher amongst individuals and families with personal knowledge and experience of the condition. To raise awareness of dementia amongst the residents of Blandford Forum the DAACo planned to run a Media Campaign about the Memory Aware Scheme once it was established further. This started in March 2014 with an article in Forum Focus (the local community magazine in Blandford Forum) and will continue with another article scheduled to go into the Blackmore Vale Magazine (a local community magazine in West Dorset) in July Awareness raising sessions have been delivered to approximately 30 staff in organisations such as Opticians, Banks, and community groups. Ensure an early diagnosis (AS5). The DAACo remit was to contact sole traders and therefore no contact had been made with local GPs or other health practitioner s. The DAACo developed a connection with the local Age UK Memory Advisor to enable them to signpost people that were concerned about memory loss for non-medical advice and information. The DAACo and Prama Care also developed a booklet containing contacts/telephone numbers for Blandford residents concerned about memory loss. Community-based solutions (AS7). There is an Extra Care Independent Living complex in Blandford Forum for people with dementia built in 2011, prior at the start of the project. This complex provides 24/7 onsite care staff and houses 40 people aged 60 and over. There is also a Carers Group and Community Hospital Relatives Group in Blandford Forum. Consistent and reliable travel options (AS8). The DAACo made initial contact with a local taxi company, although they were yet to meet, so this work is ongoing. Easy-to-navigate environments (AS9). According to the DAACo the pedestrian environment in the High Street area is difficult to cross and can be problematic for older people. Blandford Town Team Protect is a working group currently exploring the revitalisation of the town centre. The DAACo has 25

26 been in contact with them, although the detail of how this might work in practice is still to be established. Respectful and responsive businesses and services (AS10). The DAACo had approached 70 businesses in Blandford (14 have signed up to be part of the Memory Aware Scheme, and a further 17 expressed an interest in joining at a later date). Feedback from local organisations was that they are interested in the scheme and like the concept behind it, although they were unsure of how it relates to their individual businesses. The DAACo stated that it was time consuming visiting each individual organisation on at least one occasion, and it was often difficult to get an appointment with the person able to make a decision. Larger organisations such as banks and supermarkets usually had to take the information back to a representative at Head Office before a decision could be made, which meant it could take a number of weeks for a response. To try and overcome this, the DAACo ran a launch event in August 2013 for local businesses to find out more about the Memory Aware Scheme. Despite inviting all of the local businesses with premises on the High Street, the event was poorly attended by only four local charitable organisations. 26

27 4.3 Overview of progress in Christchurch Christchurch has a large population (30.6%) of people aged over 65 (ONS, 2012). The demographic characteristics of Christchurch are shown in Table 6. Table 6: Christchurch - Demographic Information Local Area Christchurch Source Area Type Borough and Town Population 47,752 Census 2011 Very good and good health 78.1% Census 2011 (% of population) Poverty Indicator (% of population) 16.2% Housing and Council Tax Benefit March 2013 Number and % of population 14,685 / ONS 2012 Mid-Year Estimates aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 30.6% 28,777 English Indices of Deprivation, 2010 Christchurch chose to adapt the DAA format and create a local DAA, the Christchurch Dementia Action Alliance. The creation of a DAA for Christchurch is part of the strategic objective of the Health and Well-being Board, and the steering group plan on a steady approach to build up interest and local commitment over time. The steering group, Christchurch Dementia Action Alliance Change Group, was established in October The steering group has 16 members (as of January 2014) who are representative of the local community (including representatives from: family carers of people with dementia, the local authority, emergency services, health and social care providers, GP Surgery and hospital, voluntary and community sectors). There are no people with dementia on the steering group. The steering group have established several work streams to: - develop a programme of awareness raising opportunities for businesses and carers; - create safe haven environments; - research into best practice and funding opportunities; - conduct further consultation with people living with dementia and carers; - create ambassadors/champions to promote within sectors; - develop dementia friendly tourism with a session in the planning stages to be delivered to tourist/hospitality industry; - work towards dementia friendly GP surgeries developing a package of information for surgery websites/reception. 27

28 The intention is that one person from the steering group will lead on each work stream. The steering group chose to develop the work streams and get more local people involved in the DAA before officially launching Christchurch DAA to the public in spring They felt this will enable them to share their experiences and inspire others to join. The steering group have chosen to initially focus on engaging with local businesses based on the High Street area of the town, as this is where most people shop and undertake day-to-day tasks such as going to the bank. Organisations in Christchurch were initially approached by the DAACo and asked if they would like to become part of Christchurch DAA, more recently this has developed to be a task undertaken by all members of the steering group. Some of the achievements in Christchurch against the Alzheimer s Society (2013) framework (see, Table 3) are noted here: Involvement of people with dementia (AS1). The DAACo has undertaken informal consultation with people with dementia and carers in Christchurch. This involved talking to 35 people with dementia and carers at the local memory cafe in October 2013, who suggested the following areas for improvement: - training and awareness raising for businesses; - need for local public awareness campaign; - better accessible parking near banks and shops; - A formal consultation exercise is currently being planned to take place in June Challenge stigma and build understanding (AS2). The DAACo suggested that due to the demographic makeup of the town there was a level of general awareness of dementia in Christchurch prior to the start of the DDFC project. Since staring the project they feel that dementia awareness raising activity is now coordinated and therefore more effective. The DAACo felt having someone in their post was enabling people to talk about dementia and raising awareness in the community. To help raise awareness and promote Christchurch DAA, the DAACo has made use of existing communication channels, including business and trade associations, Christchurch Community Partnership, and local authority databases. During Dementia Awareness Week in May 2014 the steering group are planning on running a series of events to raise aware of Christchurch DAA and dementia more generally. Accessible community activities (AS3). A local museum have signed an action plan, and requested that their staff and volunteers attend an Alzheimer s Society Dementia Friends awareness session. They are working to ensure that the venue is accessible to people with dementia, and are planning to host 28

29 events to raise awareness within the Tourism and Hospitality trade. They are also a member of the steering group and are leading on the development of a dementia friendly tourist trail, as well as undertaking reminiscence work with people with dementia. Following this example, the local Tourist Information Office are also planning on signing an action plan. The local library has sent all staff on Alzheimer s Society Dementia Friends awareness sessions. The steering group are keen on progressing dementia friendly tourism in Christchurch and for the town to become the first dementia friendly tourist town. However, this is a longer term aim, once more local businesses have signed up to Christchurch DAA, no examples were therefore provided to show how this will be achieved. Ensure an early diagnosis (AS5). The DAACo is planning on delivering awareness raising sessions to the local Clinical Prescribing Forum (which includes representatives from local pharmacies and GPs). Community-based solutions (AS7). A Safe Haven is a place for any person with dementia to be taken if they are feeling lost or confused. A Safe Haven has been created in a local Care Home. There is also a Carer Coordinator in Christchurch for Carers to seek information and guidance. Consistent and reliable travel options (AS8).The steering group have developed a leaflet with information about dementia aware local travel companies which is now available in local care homes. The DAACo has also been in contact with trading standards, the licensing authority for Christchurch taxis and Yellow Buses bus company, although they are yet to meet, so this work is on-going. Respectful and responsive businesses and services (AS10).The DAACo felt that businesses and services found it difficult to dedicate the time to one particular agenda, so in this instance personal experience made people more likely to want to get involved. The idea of developing Champions within various organisations has been considered by the Christchurch Steering Group to help raise awareness about dementia. They felt that identifying people with personal experience of dementia would help to find someone proactive within an organisation that would be able to talk about their experience. They felt that continuity of Champions when people left an organisation may also prove problematic. 29

30 4.4 Overview of progress in Dorchester Dorchester is the County Town of Dorset, with a large population (23.1%) of people aged 65 and over (ONS, 2012). The demographic characteristics of Dorchester are shown in Table 7. Table 7: Dorchester - Demographic Information Local Area Dorchester Source Area Type Market Town Population 19,060 Census 2011 Very good and good health 80.5% Census 2011 (% of population) Poverty Indicator (% of population) 15.7% Housing and Council Tax Benefit March 2013 Number and % of population 4,415 / ONS 2012 Mid-Year Estimates aged % Health deprivation and disability domain (rank of 1 = most deprived. 23,482 ranks available) 3,002 English Indices of Deprivation, 2010 Dorchester chose to adapt the DAA format and create a local DAA, Dorchester Dementia Action Alliance. The Dorchester Dementia Action Alliance Steering Group was established in September The steering group has elected members, currently 10 members (as of March 2014) who are fairly representative of the local community (including a carer of a person with dementia, and representatives from the local authority, emergency services, voluntary and community organisations, health and social care sector), although there are no people with dementia. More members are being recruited. The steering group is in the process of setting up a bank account, and are applying for funding to pay for a dementia friendly pack to give out to businesses and services that complete a DAA Action Plan. This pack will contain: - a window sticker; - coin recognition chart; - customer facing guide; and - laminated guide to communicating with someone with dementia. Some of the achievements in Dorchester are detailed here, against the Alzheimer s Society (2013) framework (see, Table 3): Involvement of people with dementia (AS1). Consultation with people with dementia and their carers began in May 2013 and is considered to be an 30

31 on-going process by the steering group. One of the members of the steering group is a carer for someone with dementia, and brings personal experience and understanding to the group. The DAACo visited a local dementia specific group to talk to people with dementia and their carers about their experiences in Dorchester. Challenge stigma and build understanding (AS2). The Dorchester Dementia Action Alliance was officially launched in September 2013 with an event attended by the local Mayor and Councillors as well as 45 members of the public. The DAACo and local Alzheimer s Society Dementia Support Worker have delivered awareness raising sessions to museum staff, community groups, town council and in the local secondary schools. They are planning to run further sessions in a range of venues, including other secondary schools. The steering group have created a Twitter account (with 144 followers as of March 2014) and are using social media to inform members of the public about their work and raise awareness of dementia in general. Three newspaper articles in local publications have been submitted to raise awareness of the local DAA (Dorset Echo June 2013, Dorset Echo October 2013 and Dorset Echo December 2013). Accessible community activities (AS3). The local History Centre have joined Dorchester DAA and are now running genealogy sessions for people with dementia and their carers to look up their family history. Acknowledge potential (AS4). The DAACo suggested that they were planning on asking someone with dementia to write an on-going diary about their life and publish it weekly in the local newspaper. Using positive phrases such as people living with dementia and not negative terms like dementia sufferer, they felt this would empower the person writing the article and other people with dementia whilst also raising awareness within the local community. Community-based solutions (AS7). A local domiciliary care company have joined the Dorchester DAA and made a donation towards the printing costs of the customer facing guide mentioned above. A safe haven in a local care home has been developed. This was the first safe haven to be established in Dorset and the only one which has been through establishing protocols with the police and the mental capacities act manager. Respectful and responsive businesses and services (AS10). The county council have committed to ensuring all members of staff undertake 31

32 dementia awareness training and that their offices will become dementia friendly. Following this training it was pledged that the county council would work to becoming a dementia friendly employer. Other councils within Dorset (including the Unitary Authorities of Bournemouth and Poole) have adopted this and are looking at how they can become dementia friendly. The local (town) council have signed up to the local DAA. The DAACo has held initial discussions with representatives from the local hospital, which is keen to sign up to national DAA and commit to becoming dementia friendly. 32

33 4.5 Overview of progress in Poole Geographically the Poole DFC initiative covers the high street, shopping centre and quayside area of the town. 20% of the population of Poole are aged 65 years and over (Census, 2011); other demographic characteristics of Poole are shown in Table 8. Table 8: Poole - Demographic Information Local Area Poole Source Area Type Borough and Seaside town Population 147,645 Census 2011 Very good and good health 81.4% Census 2011 (% of population) Poverty Indicator (% of population) 0 Council Tax Benefit September 2012 Number and % of population 30,158 / 20% Census 2011 aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 25,701 English Indices of Deprivation, 2010 Poole chose to adapt the DAA format and create a local DAA, Poole Dementia Action Alliance. The Borough of Poole was one of the first areas in the South West of England to sign up to the national DAA. The steering group, Poole Dementia Action Group (PDAG), was established in August The steering group is made up of 19 members (as of March 2014) who are representatives from the local community (including local authority, health and social care providers, GP Surgery and business sector). There are no people with dementia but two carers on the steering group who have dual role representing their company and the perspectives of carers. Each member of the steering group represents a business sector and have cascaded information to their sector when required. They have also approached other companies to be part of the steering group and encouraging them to sign action plans. PDAG have obtained Alzheimer s Society national recognition to enable them to use the working to become dementia friendly - forget me not emblem. Stickers displaying the emblem will be given to businesses that undertake an awareness session and or dementia friends training and complete and sign an action plan. PDAG have developed a resource pack for local shops and businesses, which has been funded by members of the steering group and includes: - an information sheet on communicating with someone with dementia and a customer facing guide; 33

34 - a coin recognition chart - a leaflet on leisure/social activities that are dementia friendly in Poole; and - an action plan for them to complete and work towards; - Leaflet of resources that can be borrowed from the library for carers and people with dementia. Some of the achievements in Poole are highlighted here, against the Alzheimer s Society (2013) framework (as outlined in Table 3): Involvement of people with dementia (AS1). To date no formal consultation exercise has been completed with people with dementia and carers in Poole. There are plans to undertake a formal consultation exercise including the views of residents in a local care home for people with dementia. The DAACo has spoken to people with dementia and their carers at local community groups. Challenge stigma and build understanding (AS2). Members of the steering group and Dementia Champions, along with a DSW have delivered awareness raising sessions to local businesses in the Shopping Centre, town council and in local secondary schools. PDAA are planning on running further sessions in a range of venues, including more sessions in the Shopping Centre. During Dementia Awareness Week in May 2014 the steering group are planning on running a series of awareness raising events, including the PDAA launch event. It is anticipated that the PDAA launch will be attended by the local Mayor. PDAA has had five local media mentions (BBC South, Radio Solent, Caring Matters Magazine, Poole Wellbeing Collaborative Monthly Newsletter and the Colton Care Magazine). Accessible community activities (AS3). The local library service (covering the borough of Poole) have signed a national action plan and committed to staff from each branch attending an Alzheimer s Society Dementia Friends session. They have also liaised with the Alzheimer s Society to purchase library resources specifically for people with dementia. A representative from the local museum is a member of Poole steering group. Since the DDFC project has started, a local theatre now offers a meeting space providing people with dementia and their carers with an opportunity to meet on a regular basis. Ensure an early diagnosis (AS5). The first GP surgery in the UK to sign a National DAA Action Plan was based in Poole. This action plan makes specific reference to improving diagnosis rates. PDAG is working within a GP to deliver awareness raising sessions to GP s in Poole. 34

35 Community-based solutions (AS7). The need for one day respite care was highlighted to PDAA in Dorset. PDAG have worked with a local care home to ensure that a one day care package for respite is now being offered in Poole. This service includes bathing, activities, cooking and feeding, and stimulation services. An activities leaflet has been designed for people with dementia and has been distributed through various organisations. This leaflet includes information about activities in the local area, in addition to activities which are dementia friendly. Consistent and reliable travel options (AS8). The DAACo suggested that the bus station are interested in learning more about becoming dementia friendly, although they had yet to meet so this work is on-going. Easy-to-navigate environments (AS9). The local shopping centre are planning on undertaking a refurbishment that takes into account the principles of dementia friendly environment. Respectful and responsive businesses and services (AS10). A number of businesses and services in Poole have signed an action plan and will provide dementia awareness training to all existing and new members of staff, including domiciliary care provider, opticians, arts facilitator and voluntary well-being organisation. PDAG have designed a customer facing guide specifically for retail outlets in the area. This guide was given to representatives from all retail outlets that attended an awareness raising session. The DAACo commented that the large geographical area covered by the PDAA made it difficult to decide where to start and which organisations to approach first. 35

36 4.6 Overview of progress in Southbourne The original project proposal outlined Bournemouth, rather than Southbourne. After the DAACo began in post, a decision was made to focus initially on the easterly suburb of Southbourne in Bournemouth, with the ultimate aim of sharing the learning across the whole of Bournemouth. The main shopping area, Southbourne Grove, comprises unique and individual shops rather than high street chains. Geographically a decision was made to concentrate on the high street area of Southbourne Grove. 17.6% of the population of Southbourne are aged 65 and over, the remaining demographics characteristics of Southbourne are shown in Table 9. Table 9: Southbourne - Demographic Information Local Area Southbourne Source Area Type Seaside suburb of Bournemouth Population 9, Census Very good and good health (% of population) 80.6% 2011 Census Poverty Indicator (% of population) Number and % of population aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 11.6% (compared to 11.7% in Bournemouth 1,668 / 17.6% 2011 Census Housing and Council Tax Benefit February 2014 and 2011 Census population 11,671 English Indices of Deprivation, 2010 Southbourne chose to adapt the DAA format and create a local DAA, Southbourne Dementia Action Alliance. The steering group, Southbourne Dementia Friendly Community Support Group, was established July The steering group is made up of 11 members (as of January 2014) who are representative of the local community (including representatives from: local authority, health and social care providers, GP Surgery, church and solicitors). There are no people with dementia on the steering group. Some of the achievements in Southbourne are discussed here, against the Alzheimer s Society (2013) framework (Table 3): Involvement of people with dementia (AS1). The DAACo and local Dementia Support Worker talked to people with dementia and their carers over afternoon tea at a local activities club for people with dementia. In September 2013 a consultation event was held in Southbourne where people with dementia and their carers were invited to attend and discuss what they felt 36

37 could be improved in the area. People with dementia and their carers suggested a need for the following in Southbourne: - raise awareness of dementia; - increase activity for people with dementia; - advice and guidance on planning for future; - Safe haven; and - dementia specific resources for retailers. Challenge stigma and build understanding (AS2). The following awareness raising events have been held in Southbourne since the beginning of the project: - a stand on the beach during Dementia Awareness Week in May 2013 to talk to members of the public; - two steering group member walked around the local area and discussed with residents their experiences of living there; and - two steering group members have become Alzheimer s Society Dementia Champions in order to increase the number of Alzheimer s Society Dementia Friends awareness sessions delivered. Accessible community activities (AS3). Since the project started a weekly Forget Me Not Coffee Morning for people with dementia and their carers has been held in Southbourne. The local tennis club are working on making their facilities dementia friendly and will shortly be running sessions for people with dementia. The DAACo is planning to work with Bournemouth Football Club to find a person with dementia to give them advice on how to become dementia friendly. A Dementia Friendly Tourism workshop is currently being planned and will be delivered to local organisations. Community-based solutions (AS7). A safe haven in a local retirement home has been developed through the steering group. A coin recognition chart is being used within a local supermarket. Since the start of the DDFC project the following dementia specific services have been created: Forget Me Not Coffee Mornings; Carers Ward at local GP Surgery; Younger People s Group in Dorset meets monthly in Southbourne; and Art Therapy sessions being planned for the Hub Consistent and reliable travel options (AS8.) A leaflet has been produced by the Dorset Dementia Partnership and has been given to a local bus company. Easy-to-navigate environments (AS9). The DAACo suggested that there were plans to deliver sessions to representatives from the local authority and other 37

38 local organisations about making public toilets and signage within Southbourne dementia friendly in the future, although no examples were given of how this will be taken forwards. Respectful and responsive businesses and services (AS10). A launch event for local businesses to find out more about how to become involved in the Southbourne DAA was held in September A number of local businesses have signed local DAA Action Plans, including the local museum. 38

39 4.7 Overview of progress in Weymouth and Portland Weymouth was one of the six localities in the original project proposal. Once the Steering Group was in place a decision was made to include Portland, due to the close proximity and connection of the two areas. The resorts of Weymouth and the Isle of Portland have a population of 23% and 17.4% of older people, respectively (ONS, 2012). The demographic characteristics of Weymouth and Portland are shown in Table 10; please note they are shown separately for each locality. Table 10: Weymouth and Portland - Demographic Information Local Area Weymouth Source Portland Source Area Type Seaside Town Limestone tied island Population 52,322 Census ,844 Census 2011 Very good and 78.8% Census % Census 2011 good health (% of population) Poverty Indicator (% of population) Number and % of population aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 21.2% Housing and Council Tax Benefit March ,073 / 23.1% ONS 2012 Mid- Year Estimates 790 English Indices of Deprivation, % Housing and Council Tax Benefit March ,223 / 17.4% ONS 2012 Mid- Year Estimates 1,496 English Indices of Deprivation, 2010 Weymouth and Portland chose to adapt the DAA format and create a local DAA, Weymouth and Portland Dementia Action Alliance. The Weymouth and Portland Dementia Action Alliance Steering Group was established in January The steering group has 6 elected members and is currently recruiting more. The plan is for the group to reflect the makeup of the local community, although it is unclear if any of the committee will include people with dementia or their carers. The steering group is in the process of setting up a bank account. To date they have held one public meeting in January 2014 which was well attended. They plan on holding a public meeting every 6 months to inform the local community what they have achieved and what they plan to do in the future (the next one is scheduled for July 2014). The steering group are currently in the process of applying for funding to pay 39

40 for a dementia friendly pack for them to give out to businesses and services that complete a DAA Action Plan. This pack will contain: - a window sticker; - coin recognition chart; - customer facing guide; and - laminated guide to communicating with someone with dementia. The steering group are also planning on developing the following packs: - volunteer pack for steering group members who are approaching businesses and services to recruit them into the local Alliance; - people with dementia and carers pack to tell them what the local Alliance is; - and a general information pack for members of the public to find out more about the local Alliance. Some of the achievements in Weymouth and Portland are detailed below, against the Alzheimer s Society (2013) framework (see, Table 3): Involvement of people with dementia (AS1. Consultation with people with dementia and their carers began in May 2013 and is considered on-going by the steering group. In May 2013 a questionnaire was sent out to people with dementia and their carers in order to identify good experiences and areas to improve about living in the local community. The questionnaires were circulated by Alzheimer s Society Dementia Support Workers, AgeUK and local Community Mental Health Teams. The process used to define this questionnaire, the questions used and how many people completed the questionnaire is unclear. The key areas raised by the process are reported as: local shops and consumer experiences, transport, venues, activities, and health and social care. The DAACo visited a local memory café, and talked to people with dementia and their carers at the Weymouth and Portland DAA Open Meeting about their experiences in the local area. Challenge stigma and build understanding (AS2). Five newspaper articles in local publications have been submitted to raise awareness of the local DAA (Dorset Echo June 2013, Dorset Echo October 2013, Weymouth and Portland Advertiser January 2014, Dorset Echo December 2013, and Dorset Echo January 2014). The DAACo is planning on delivering awareness raising sessions to the students at the local college and senior schools. Members of the steering group will be trained in how to deliver awareness raising sessions to members of the local community. The steering group have created a Twitter account and are using social media to inform 40

41 members of the public about their work and raise awareness of dementia in general. Accessible community activities (AS3). The DAACo is planning on approaching the local swimming pool to ask them to sign an action plan and consider providing unisex changing facilitates for people with dementia and their carers. The DAACo is also planning on talking to the local nature reserve about becoming dementia friendly. Consistent and reliable travel options (AS8). The local bus company are giving out help cards to passengers, and will be approached with regards to signing an action plan. Respectful and responsive businesses and services (AS10). The number of businesses and services signing action plans in Weymouth and Portland has been at a slower pace than in other DAAs in the DDFC project. This is due to the steering group decision to take the time to develop the right literature before going out to engage with this industry. Two local domiciliary care providers and a manufacturing company have signed action plans and would like to provide staff with dementia awareness training. 41

42 4.8 Overview of progress in Wimborne Minster Wimborne Minister is a Market Town with a large population (27.6%) of people aged 65 years and over (ONS, 2012). The demographic characteristics of Wimborne Minster are shown in Table 11. Table 11: Wimborne Minster - Demographic Information Local Area Wimborne Source Minster Area Type Market Town Population 7,014 Census 2011 Very good and good health 79.6% Census 2011 (% of population) Poverty Indicator (% of population) 18.7% Housing and Council Tax Benefit March 2013 Number and % of population 1,905 / 27.6% ONS 2012 Mid-Year Estimates aged 65+ Health deprivation and disability domain (a rank of 1 = most deprived. 23,482 ranks available) 27,881 English Indices of Deprivation, 2010 Wimborne Minster chose to adapt the DAA format and create a local DAA, Wimborne Minster Dementia Action Alliance. The steering group, Wimborne Dementia Friendly Steering Group, was established August The steering group is made up of 12 members (as of March 2014) who are fairly representative of the local community (including representatives from: family carers of people with dementia, health and social care providers, voluntary and community sector, and local housing providers). There are no people with dementia on the steering group. Since the start of the DDFC project Wimborne Minster has been awarded the Alzheimer s Society national recognition working to become dementia friendly. Window stickers have been also been given to shops whose staff have attended Alzheimer s Society Dementia Friends sessions and completed a DAA Action Plan. Some of the achievements in Wimborne Minster are noted below, against the Alzheimer s Society (2013) framework (see Table 3): Involvement of people with dementia (AS1). Informal consultation exercises have been completed with people with dementia and carers in Wimborne (DAACo has met one to one with a person with dementia and a carer, and has had conversations with people with dementia at an Age UK session). There are plans to undertake a formal consultation exercise including the views of residents in a local care home for people with dementia. 42

43 Challenge stigma and build understanding (AS2). The Wimborne Minster DAA was officially launched in January 2014 with an event attended by the local Mayor and Councillors as well as over 70 members of the public. This launch was the most well attended of all the launches taking place as part of the DDFC project, and encouraged other DAAs that had not held a launch to start planning theirs (including Poole and Christchurch). It also prompted residents from Corfe Mullen to develop their own local DAA. The DAACo and local Alzheimer s Society Dementia Support Worker have delivered awareness raising sessions to local businesses and services including the museum staff and a local community group. Five articles have also been published in the local media (Stour and Avon Magazine February 2014, Blackmore Vale Magazine February 2014, Blackmore Vale Magazine planned for April 2014 Corfe Mullen to develop DAA, and two articles in unknown publications). Accessible community activities (AS3). Since the start of the DDFC project the need for a Memory Café in Wimborne Minister was voiced by members of the community to the DAACo. This was fed back to the Alzheimer s Society, and they have since funded a Memory Café in the town. The Memory Café run a programme of optional activities such as games, quizzes, arts and craft, reminiscence (delivered by a local museum) and talks from external organisations and speakers, and runs, with meetings twice a month. Melodies for Memories run by Age UK started in Wimborne Minister prior to the DDFC project. Community-based solutions (AS7). A local housing association have signed an action plan, agreeing for staff to attend dementia awareness sessions, and have a representative on the steering group. A local attraction has signed the DAA action plan and developed a sensory garden for members of the public to use (although this is not dementia specific). A Safe Haven is in the process of being developed in conjunction with the local police. Consistent and reliable travel options (AS8). The local Neighbourhood Car Scheme within Wimborne Minster is a service where older people are given lifts by volunteers within the local community. This service existed prior to the start of the DDFC project. Easy-to-navigate environments (AS9). In consultation with the steering group and a Dementia Support Worker, advice was given to a local Hospital regarding dementia friendly principles for the refurbishment and the development of a new ward. A local care home and two residents are planning a walk around Wimborne to look at signage, the environment, toilets, and shops with a view to report the dementia friendly status of the town to the council. 43

44 Respectful and responsive businesses and services (AS10). A local museum has signed an action plan and staff will receive dementia awareness sessions. This museum also hosted the Wimborne DAA launch and provide a venue for Alzheimer s Society Dementia Friends sessions. 44

45 5. DISCUSSION OF FINDINGS Across the DDFC project there is evidence from the various data sources of engagement and raising awareness of dementia with a range of stakeholders from grass roots to a strategic level. As would be anticipated with any project of this nature and scope, valuable lessons have been gained that can be used to inform the development of DFC initiatives, and the field of dementia more generally. In this section the key themes arising from the analysis of the data from all seven localities are discussed. 5.1 Key areas that underpin a dementia friendly community As shown in the previous section of this report, none of the localities in this project have made progress in all 10 of the areas specified by the Alzheimer s Society (2013) as underpinning a dementia friendly community. Instead the focus at the beginning of the project was on retail businesses, and has spread organically as other organisations and members of the local community have become aware of the initiatives. Undertaking action in each of the 10 areas will enable existing and future DAA steering groups to work towards a holistic approach involving the whole community Involvement of people with dementia (AS1) There was limited contact with people with dementia and their carers in each of the seven localities in this project. For example no people with dementia were members of a DAA steering group, and not all steering groups had members that were carers of people with dementia. During consultation exercises or informal chats with people with dementia and their carers, the DAACo s felt that family and paid carers tended to speak on behalf of people with dementia. It was then particularly challenging to obtain the views of people with dementia Challenge stigma and build understanding (AS2) There was a wide range of evidence to suggest that the DAACo s have been raising awareness of dementia within their localities. In some cases steering group members were delivering, or about to be trained to be able to deliver, awareness raising sessions. In total, 599 people have attended awareness raising sessions in Dorset, including the Dementia Friends and Champions initiatives, between March 2013 and March Case study 1 demonstrates the positive impact of providing one key figure within the local community with more information about dementia and a mechanism for raising awareness. 45

46 Case study 1 - People power A representative of a local church wanted to know more about dementia. After attending Dementia Friends training the representative decided to become a Dementia Champion. As a result of this, the representative now runs regular dementia friends sessions and dementia friendly church services. This case study demonstrates the positive impact of providing one key figure within the local community with more information about dementia and a mechanism for raising awareness Accessible community activities (AS3) There is evidence to suggest that the DAACo s have started to think about how to progress this area. Challenges in this area have been highlighted as; the need for retail/leisure sector to provide unisex changing facilities; and for banks and shops to have an alternative to using chip and pin card payment options. A good example of how this can spread through word of mouth within the community or between organisations is the involvement of public libraries in the Bournemouth and Poole areas. Initially one library agreed to sign an action plan and for their staff to attend dementia awareness sessions. This was quickly shared with the other libraries and soon they had all signed action plans and 75 members of staff had received dementia awareness sessions (as of March 2014). The libraries have also agreed to provide a room in each library free of charge, for the Alzheimer s Society to deliver Dementia Friends and Champions training sessions Acknowledge potential (AS4) There were no examples to support this being undertaken currently within the localities included in this project Ensure an early diagnosis (AS5) The project remit did not include diagnosis rates. Hence, there were few examples to support this being undertaken in any of the seven localities in this project, although there were plans in Christchurch, Dorchester and Weymouth and Portland to engage with local GPs and GP Forums Practical support to enable engagement in community life (AS6) 46

47 The Alzheimer s Society recommends delivering a befriending service that includes practical support to ensure people with dementia can engage in community life as well as offering emotional support. There were no examples to support this being undertaken currently within this project. However, there are existing befriending schemes in the seven localities, some run by local charities (including AgeUK) and other local organisations, which may be a reason why none of the DFC initiatives focused on this area Community-based solutions (AS7) There were several examples of Safe Havens being developed in Christchurch, Dorchester, Southbourne and Wimborne Minster. Case study 2 demonstrates how a simple action can enhance the well-being of a person with dementia. Case study 2 - Community connections A lady with dementia has an appointment every Saturday morning to get her hair done. Her family drop her off and go for a walk and a coffee whilst she is in the hairdressers. The hairdresser doesn t let the lady leave until her family come back to pick her up. This ensures the lady retains her independence and is safe, and the hairdresser has a regular booking. This case study demonstrates how a simple action can enhance the well-being of a person with dementia Consistent and reliable travel options (AS8) There were no examples to support this being undertaken currently within the localities in this project other than a pre-existing lift programme in one location Easy-to-navigate environments (AS9) There were no examples to support this being undertaken currently within the localities in this project Respectful and responsive businesses and services (AS10) This formed the basis of the DAACo s role at the start of the project and they spent the majority of their time developing this area of focus. Feedback from the DAACo s in all areas was consistent in that they felt businesses were generally positive about 47

48 the DFC initiatives scheme, especially those with staff members that had personal experience of dementia. Explaining the scheme personally to people enabled the DAACo s to build up a relationship with people, which they felt was more effective than handing them a leaflet. An initiative to encourage businesses to join the scheme was to promote the use of the high street and keeping the local community using the shops, rather than online shopping. Businesses with a social focus (i.e. charities) and larger organisations with corporate responsibility were easier to get on-board. Smaller organisations struggled to see the value and had limited time or finances to be able to commit. There were examples of businesses that were already confident about helping people with memory loss. For example, a bank had one of these arrangements in place: a man withdraws large amounts of cash on a daily basis, and his wife later pays it back into the account; and a Post Office member of staff regularly pops to the other side of the counter to help customers type in their PIN number. It was problematic for DAACo s when they had a ten minute slot to present to retail staff because managers were unable to pay staff to attend an hour s awareness training session. The DAACo s also found it time consuming approaching different businesses directly in person. Businesses can sign up and then work with DAACo s to progress their work in this area, although there was a concern about who would undertake this once the DAACo s posts ended. 5.2 The role of the Action Alliance Coordinator (DAACo s) The DAACo s in this project reported that they have really enjoyed their role, although it has not been without its challenges. The remit of the role is large and covers two localities, as one DAACo s commented: Such a big project for someone working part time trying to work out which bits are actually going to make an impact Dementia Action Alliance Coordinator The variety and unpredictability of the role has been rewarding to all workers. Working part time and covering two localities, was a key challenge that they faced. In the future it may be more productive to cover one area per DAACo, or for each DAACo to be employed full time and cover two areas. It is difficult to quantify and report on how the DAACo s have spent their time, especially when they had been networking and making contacts rather than signing up people or organisations to the DAA itself. Networking meetings and visiting organisations is time consuming and often the DAACo s had to revisit organisations or talk to additional people, before they confirmed whether or not they were 48

49 interested in joining the scheme. When approaching an organisation the DAACo s used the parallels of excellent customer service to promote the benefits of joining the scheme. This was a successful approach with retail businesses. The DAACo s that set up a steering group in their locality encouraged members to take a lead with the promoting role and get organisations to sign up to the DAA. This will help to create sustainability once the DAACo is no longer in post. Having a number of different DAACo s with a range of experience and personal backgrounds means that they have a range of knowledge and skills to draw upon, proved successful. There is camaraderie and a sense of team spirit between the DAACo s, who are happy to share their ideas, experiences and learning with one another. 5.3 A structured approach The evidence suggests there are clear differences in the success of the seven localities; those that have used the DAA approach and set up a steering group are reporting more progress than the locality that adopted a Memory Aware Scheme. The Local DAA provides the DAACo s with a structured approach (organisations sign up to the local or national DAA), with some flexibility (organisations can commit to what suits/or is achievable). Following the DAA approach is enabling these localities to create sustainable DFCs to be taken forward by local people who reside or work in the community on a voluntary basis. Organisations that become part of the memory aware scheme are not reviewed on a regular basis; once they have a sticker in the window no further action is required. They are not expected to commit to any actions other than give their members of staff a booklet which might not be read. Case study 3 demonstrates the importance of asking organisations to sign up to show their commitment to DFCs. Case study 3 - Sign up to show commitment A local bank was interesting in joining the Memory Aware Scheme. As part of this scheme they had invited the DAACo s to deliver awareness raising sessions to all staff, and were pursuing the possibility of offering Money Management courses to people with dementia and their carers (something they offer for other vulnerable groups nationally but not people with dementia). The member of staff leading this work had personal experience of dementia within their own family. They relocated to another branch before signing up to the imitative. The new post holder had different priorities and the DAACo s was then unable to pursue this within the organisation. This case study shows the importance of asking organisations to sign up to show their commitment to DFCs. 49

50 5.3.1 The Steering Group The DAACo s suggested that the key challenges of forming the steering groups were that members were the right people with a can do attitude, getting people to come along in the first place (although once they attended people were usually engaged and committed to the group), and engaging with people formally was difficult. They also reported that it was more productive to meet informally and discuss topics..the will [of the steering group] to work together to share ideas, you couldn t put into words. Action Alliance Coordinator One of the biggest challenges was to get organisations in the business community on board; if dementia is not their everyday business as usual work then they were found to be less interested initially. Small businesses were concerned about their availability of time to attend events to hear about the schemes, and the amount of time it would take to complete action plans. The key success of the steering groups is that there are members of the local community willing to take the DFC imitative forward in their localities and within their networks. Members of some steering groups are already running awareness raising sessions, and seeking organisations to sign up local DAA Action Plans. Once the DAACo s finish in post, there will be no dedicated resource to take this work forwards, the established steering groups will be responsible for driving the imitative forward Launch event Some localities decided to introduce the DFC initiative in their area by holding a launch event. There were differences between the successes of the launches in each locality. For example, Blandford held a business launch early in the project and had four attendees, whilst Wimborne Minster held a public launch later in the project and had 75+ people attending the event. Whilst it is not clear why one event was more successful than the other, factors that influenced success may relate to: Having a steering group in place; Waiting until the initiative is more established and has something to showcase; The time of the event (during the day) / day of the week; Inviting strategic figures (such as a mayor or council official); Public event or open to businesses only. 50

51 5.4 Project expectations, management and transparency In the original project proposal the aim of this project was: To create dementia friendly communities and local Dementia Action Alliances involving local businesses, charities, independent, voluntary and community services, and independent providers as well as the statutory sector. During the interviews with DAACo s they felt that the aim of this project was to initially focus on raising awareness of dementia rather than the physical environment and other factors specified in the Alzheimer s Society guidance (Alzheimer s Society, 2013). The DAACo s initially approached retail businesses and focused on the High Street areas in their respective localities. The organic nature of this project and the individual differences of each locality meant that the DAACo s took their areas forwards in different ways. There were limited opportunities for the delivery team (DAACo s) to interact with the strategic committee (DDFC Project Steering Committee) overseeing this project. The opportunity to talk about the challenges and successes faced on the ground and the strategic direction of the project would have benefited both parties. On reflection the DAACo s felt that they would have saved time and resources at the beginning of the project if they had had direct contact with someone experienced in setting up a local DAA. 5.5 DDFC Project sustainability As explained in Table 2, three DAACo s will come to the end of their fixed term contracts in September At this time, it is not intended that these contracts will be renewed as the project will become self-sustaining at this point. The responsibilities of DAACo 4 will be aligned to a new community development worker post (funded by Prama Care) from September In the localities that have followed the DAA approach, the DAACo s have/are currently in the process of defining a clear pathway to enable them to hand over responsibility to the steering groups in their respective localities. This will allow DFCs to develop as the social movement originally intended. There are some concerns about this being too early in the project; however the DAACo s are confident that they have the right people on the steering groups to be able to facilitate this cross over. Localities following the Memory Aware Scheme have not been able to confirm the sustainability of their areas as confidently, as there appear to be limited mechanisms in place to sustain this work in these localities. 51

52 6. CONCLUSIONS The Alzheimer s Society (2013) defines 10 areas that underpin a dementia friendly community: 1. Involvement of people with dementia 2. Challenge stigma and build understanding 3. Accessible community activities 4. Acknowledge potential 5. Ensure an early diagnosis 6. Practical support to enable engagement in community life 7. Community-based solutions 8. Consistent and reliable travel options 9. Easy-to-navigate environments 10. Respectful and responsive businesses and services The DDFC project appears to have primarily focused on two of the ten areas outlined by the Alzheimer s Society (2013): challenging stigma and understanding; and respectful and responsive businesses. There is demonstrable progress in all seven localities in terms of raising awareness of dementia in Dorset and asking organisations based on the high street of each locality to join the local DAA or Memory Aware Scheme. However, there is less evidence to support how the other eight areas outlined by the Alzheimer s Society (2013) have been addressed in all seven localities. There are some good examples of how each of the localities are planning to take forwards some of these areas, however to date and within the timescales of the DDFC project this has not been fully achieved. Therefore, it is evident that rather than fully creating dementia friendly communities, the DDFC project achievement has been to create the circumstances to enable progress towards developing these fully in all seven localities in the future. The strategy of forming local DAAs in six out of the seven localities appears to be one with potential for consolidation of the actions undertaken throughout the life of the project and to create the conditions for future sustainability. It is important to remember the timeframe of this evaluation in terms of the timescales of the DDFC project as a whole. Establishing networks and connections within a community for this purpose takes time and ultimately will be an on-going responsibility of each DFC locality, both through the steering groups or other support mechanisms. Every community is different and has individual members with diverse experiences and needs. Lessons learnt and examples of good practice from each of the seven localities could be developed and shared with others already beginning this work, or who are thinking of developing a DFC in Dorset or nationally (such as Joseph Rowntree Foundation, 2014). This may inspire others to create their own DFCs. 52

53 7. RECOMMENDATIONS To ensure the successful development of the DFC initiatives in Dorset, and similar schemes nationally, the following recommendations are made: 1. Actively involve people with dementia and their carers in the development of the DFC. This could include being members of a DAA steering group or through regular public consultation exercises. Use consultation methods that enable people with dementia and their carers to voice their views and allow others to understand their experiences within the community. Remember that people with dementia may have a different view or experience to their carer, and therefore there is a need to ensure both have an opportunity to communicate their views and experiences. 2. Define a clear structure from the outset. Every community is different and will have a different approach to becoming dementia friendly. However, it is evident from the DDFC project that the DAA approach provides a flexible structure that can lead to a self-sustaining DFC. The key elements of the DAA approach that have been successful in the DDFC project are the creation of a steering group of local people from the community to take the work forwards, and the signing of local action plans; both appear a robust way to ensure organisations review their commitment to the DFC. 3. Focus on the whole community. The Alzheimer s Society (2013) has defined 10 areas that underpin a dementia friendly community. This provides a useful starting point in defining the range of aspects that every community needs to focus on, in order to become dementia friendly. 4. Promote the role of a Dementia Action Alliance Coordinator when setting up a DFC. In the development of the DDFC project the role of the DAACo s has been instrumental in setting up the local DAA. Throughout the DDFC project these roles have been paid positions, however with the right forethought these could also be developed into voluntary roles, perhaps undertaken by more than one person within the community. Before other localities consider using these roles they should note the discussion in section Create a steering group with the right mix of people with a can do approach. Where possible this should be representative of the local community including: people with dementia and their carers, young people, local authority, emergency services, health and social care providers, GP Surgery and hospital, and the voluntary and community sector. 6. Obtain support from key strategic figures within the community. The support of local community members in key strategic roles, such as local Councillors, has increased the profile and support for DFCs. 53

54 7. Understand the difference between being dementia aware and dementia friendly. It is vital that all DFCs raise awareness of dementia and that local DAAs support their communities to develop their understanding of the condition. However, there is a difference between an individual and an organisation being dementia aware and dementia friendly. For example, an organisation that has provided awareness raising sessions for their staff should not then claim to be dementia friendly. Being dementia friendly involves much more than this, for example they will need to consider the signage, décor and lighting used within their offices or shops. The design of window stickers that inform members of the public of the shops that are part of the scheme should also take this into consideration. 8. Promote transparency between the strategic committee and delivery team. Throughout the DDFC project the DDFC Project Steering Committee have overseen the strategic direction of the project. This committee is made up of representatives from the 10 agency partners that developed the original DDFC project proposal, as well as the line managers of the delivery team (or DAACo s). During the DDFC project the committee met monthly and these meetings were minuted and reports shared. The committee also reported quarterly to the Dorset Dementia Partnership on how the funding and matched funding was being spent. There were no fixed approaches to how the strategic committee and DAACo s interacted. There was evidence to suggest that communication was fed both ways by the DAACo s line manager, and that some members of the committee sporadically met up with DAACo s. However this communication could be enhanced so that the whole project team understands both the strategic direction of the project and the challenges and successes faced on the ground. To enable DAACo s to be effective in their roles they should be guided and supported by someone with previous experience of setting up a local DAA themselves. 9. Develop and promote a launch event as a means of attracting good publicity and stimulating local interest. Timing has been key to the success of the launch events held in the DDFC project, with those waiting until the DAA is more established, providing good publicity and stimulating local interest in the DAA (see section on Wimborne Minster). Inviting local community members in key strategic roles such as the Mayor and local Councillors, has also increased the media interest in these events. 10. Promote a DFC as an inclusive community for all. A dementia friendly community is an inclusive environment for all members of the community. When approaching organisations or groups make the connection that dementia friendly means excellent customer service for all, this works well with businesses in the retail sector. 11. Share ideas and best practice across DFCs. Members of local DAAs need opportunities to meet up and share their experiences and ideas. This could be 54

55 facilitated nationally through DAA and in Dorset through Dorset Dementia Partnership. 55

56 REFERENCES BUDI: Dorset Dementia Friendly Communities Project Evaluation Alzheimer s Disease International Dementia Statistics. Available at accessed 1 st May Alzheimer s Society Statistics. Available at accessed 15th April Alzheimer s Society Building dementia friendly communities: A priority for everyone. Available at accessed 6 th May Alzheimer s Society People Living with Dementia in Poole, Bournemouth and the east of Dorset Help Shape Local Services pre consultation document from East Dorset Consultation Events. Dorset Alzheimer s Society. Borough of Poole Poole s Strategic Assessment. Available at census/, accessed 8 th April 2014 Borough of Poole, National Dementia Strategy 2012/13. Available at accessed 8 th April 2014 Bryman, A Social Research Methods. Oxford University Press. New York Department of Health Prime Minister s challenge on dementia: Delivering major improvements in dementia care and research by London: DH Publications. Dorset County Council, Town Fact Sheets. Available at accessed 8th April 2014 Dorset Health Scrutiny Committee, Scrutiny Review Panel Dementia Services Dorset. Dorset County Council. Improving the quality of life for people in Dorset, now and for the future. Available at DorsethealthCare/Downloads/About%20The%20Trust%20and%20Membership/Trus t%20board/board%20minutes%20and%20agendas/ board-agenda.pdf, accessed 20 th April Indices of Deprivation Indices of Deprivation Explorer. Available at accessed 8 th April 2014 Joseph Rowntree Foundation Dementia Friendly Yorkshire: First Steps on the Journey. Available at friendlyyorkshire.pdf, accessed 10 th April

57 Office for National Statistics, Census: Population Estimates for the United Kingdom. Available at census/population-and-household-estimates-for-the-united-kingdom/stb census--population-estimates-for-the-united-kingdom.html, accessed 8th April 2014 World Health Organisation Global age-friendly cities: A Guide. Available at accessed 15th April

58 APPENDICIES BUDI: Dorset Dementia Friendly Communities Project Evaluation Appendix A: Original outcome measures PATIENT OUTCOMES ID reference Original outcome measure New evaluation framework What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? PWD1 PWD2 PWD3 PWD4 PWD5 PWD6 PWD7 PWD8 Improved access to local information, signposting and support relevant to enabling them to remain living within their own communities for as long as they wish. Will reduce stigma, which will make seeking help easier Will feel valued in their own community Will be able to stay in their own homes for longer and be supported by their community to do so Will feel safe in their community Will enjoy where they live Will not be afraid to access health and social care services or go to hospital Will get the treatment and support best for their type of dementia AS1/ AS3 /AS7 AS2 AS1 /AS4 AS7 AS1/ AS7 AS1/ AS7 AS5/ AS7 AS5 7 x Focus Groups with people with dementia and carers) (1 per locality) 2 x postal surveys sent to the general public Reports from consultatio n exercises and other data collected by each of the seven localities Total of 4 people attending across 7 localities Low response rate for the first survey (7.3%) The reports form consultati on and other data collected by each of the seven localities did not refer to original outcome measure s The data is limited - not enough to establish if there has been a level of improvement, as anticipated These are longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation PWD9 Will be able to participate in local community activities like everyone else AS1/ AS4 PWD10 Will be able to get on a bus or train AS9 PWD11 Will be able to continue and maintain personal interests and activities for as long as they wish AS3 58

59 OUTCOMES FOR CARERS OF PEOPLE WITH DEMENTIA ID reference Original outcome measure New evaluation framewor k What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? C1 C2 C3 C4 Will be directed to specialist advice and information Will be able to access services that help them take a break Will be able to access expert advice about caring for someone with dementia Will be encouraged to look after their health and well being and have access to services that help them do this AS2 AS2 AS2 AS2/AS7 7 x Focus Groups with people with dementia and carers) (1 per locality) 2 x postal surveys sent to the general public Reports from consultation exercises and other data collected by each of the seven localities Total of 4 people attending across 7 localities Low response rate for the first survey (7.3%) The reports form consultation and other data collected by each of the seven localities did not refer to original outcome measures The data is limited - not enough to establish if there has been a level of improvement, as anticipated These are longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation C5 Will be sustained to continue to support the person with dementia to maintain their independence AS2 59

60 ORGANISATIONAL OUTCOMES ID reference Original outcome measure New evaluation framework What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? O1 Increase in diagnosis rates AS5 Statistics from local authorities This was not received by BUDI No data was received Yes but it has not been possible to measure this accurately in this evaluation O2 More carers of people with dementia on their GP s register AS2/AS5 To be ascertained from Primary Care Trust This was not received by BUDI No data was received Yes but it has not been possible to measure this accurately in this evaluation O3 Rising number of carers accessing the Carers Information Service in Bournemouth and Poole AS2 To be ascertained from Carers Information Service in Bournemouth and Poole This was not received by BUDI No data was received Yes but it has not been possible to measure this accurately in this evaluation O4 Increased identification of carers AS2 To be ascertained from Primary Care Trust This was not received by BUDI No data was received Yes but it has not been possible to measure this accurately in this evaluation O5 Community developments and innovations AS7 All datasets outlined in subsection All datasets outlined in subsection Dementia specific local services have developed during the timeframe of this evaluation (as outlined in section 4) Yes O6 Partnership working creating more holistic approaches to supporting people with dementia AS7/AS10 All datasets outlined in subsection All datasets outlined in subsection Informal partnership working has taken place within the DDFC project, however there is not enough data to establish if this creating more holistic approaches to supporting people with dementia Yes but it has not been possible to measure this accurately in this evaluation 60

61 INNOVATION AND CULTURE OUTCOMES ID reference Original outcome measure New evaluation framework What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? IN1 Increased knowledge and awareness of dementia in non health and social care organisations leading to more responsive and supportive service delivery AS2 All datasets outlined in subsection All datasets outlined in subsection Non health and social care organisations have sent their staff on awareness raising sessions, however there is not enough data to establish if this has lead to more responsive and supportive service delivery Yes but it has not been possible to measure this accurately in this evaluation IN2 Shared learning from project published through BUDI AS2 Published evaluation report. Further publication of academic and professional articles, and conference papers. Published Evaluation Report. Further publication of academic and professional articles, and conference papers. To date BUDI have produced the Evaluation Report and will report further dissemination activity to the DDFC Project Steering Committee as it happens. Yes, and will increase as outputs are disseminated by BUDI. 61

62 DESCRIPTIVE STATISTICS TO MEASURE QUANTIFIABLE BENEFITS ID reference Original outcome measure New evaluation framework What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? DS1 Number of Dementia Action Alliance sets up to support dementia friendly communities AS7 Interviews with DAACo s Interviews with DAACo s 6 out of 7 (or 85.7%) of the localities have a set up a DAA Yes DS2 Number of businesses and local organisations involved AS10 Local DAA Action Plans Local DAA Action Plans A minimum of 72 businesses are involved across the seven localities Yes DS3 Number of local media mentions for dementia AS2 Press releases and news reports from the seven localities Press releases and news reports from the seven localities The number of local media mentions have increased in each area as the DDFC project has increased. Increasing the amount of publicity and the reach (targeting a wider range of sources) would increase the expose the DDFC project. Yes The use of social media by in two localities helped to target younger people. DS4 Number of local people affected by dementia engaged in the community AS1/AS4 All datasets outlined in subsection This was not measurable from the any of the data collected The data is limited - not enough to establish if there has been a level of improvement, as anticipated This is a longer term aim of the DFC initiatives and not measureable in the timeframe of this evaluation DS5 Number of carers of people with dementia receiving information and accessing support, in annual report to Carers Commissioning Board AS2 Annual Report to Carers Commissioning Board This report was not received by BUDI No data was received Yes but it has not been possible to measure this accurately in this evaluation 62

63 QUANTIFIABLE BENEFITS ID reference Original outcome measure New evaluation framework What we planned to do to measure this outcome What data we were able to use to measure this outcome What the data told us Is the outcome measureable? QB1 People with dementia will be able to access community facilities and local businesses without fear of being stigmatised or marginalised AS10 2 x postal surveys sent to the general public Low response rate for the first survey (7.3%) The data is limited - not enough to establish if there has been a level of improvement, as anticipated These are longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation QB2 Increased access to community social activities reducing the need for dementia specific activity AS3 2 x postal surveys sent to the general public Low response rate for the first survey (7.3%) The data is limited - not enough to establish if there has been a level of improvement, as anticipated These are longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation QB3 Increase access to information and practical support for families of people with dementia AS2 2 x postal surveys sent to the general public Low response rate for the first survey (7.3%) The data is limited - not enough to establish if there has been a level of improvement, as anticipated These are longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation QB4 Raised community awareness of dementia and its cause and how it affects people AS2 DAACo s monthly monitoring forms DAACo s monthly monitoring forms Interviews with ACCs The number of people attending dementia awareness raising sessions in the seven localities has increased between March 2013 and March 2014 Yes QB5 Organisations and business focused on customer care will be more likely to attract people affected by dementia and their families and friends. AS10 2 x postal surveys sent to the general public Online survey sent to businesses Low response rate for the first survey (7.3%) Low response rate of 13%). The data is limited - not enough to establish if there has been a level of improvement, as anticipated This is longer term aims of the DFC initiatives and not measureable in the timeframe of this evaluation 63

64 Appendix B: Criteria for Postcode Address File Postcode Address File (PAF) is a database which contains all known delivery points and postcodes in the United Kingdom. BUDI defined the boundaries for a PAF search as follows: The best method to approach this was to avoid arbitrary boundaries. By using wards, it was possible to compare the sample to demographic data in a way that has already been gathered by the government (i.e. Census 2011 / Local area stats) and inclusive of this is health data which may be useful to the evaluation. By using wards, it will also be easier to incorporate the data into future studies. The wards selected are those that encompass the main part of the high street shopping areas, and the centre point of the town as defined by the Ordnance Survey (except Weymouth as this focuses on the Town Hall on the opposite side of the bridge from the shopping area). These are presented in the table below. High Street Area Blandford Forum Christchurch Dorchester Poole Southbourne Weymouth Wimborne Minster Ward Blandford Old Town Town Centre Dorchester North Poole Town East Southbourne and Tuckton Melcombe Regis Wimborne Minster 64

65 Appendix C: Postal Survey sent to members of the public Dementia Friendly Communities In Dorset we believe that those living with dementia and memory problems have the right to continue to live and enjoy their lives in their local communities for as long as possible. NHS Dorset, the Alzheimer's Society, Bournemouth University Dementia Institute, Prama Care, Dorset County Council, the Borough of Poole and Bournemouth Borough Council propose to develop Dementia Friendly Communities across Dorset. The aim is to increase public awareness of dementia and memory loss, and to assist people with dementia to remain independent and to have choice and control over their lives. The attached questionnaire has been designed by the Bournemouth University Dementia Institute (BUDI) to offer you the opportunity to influence the decisions made about the development of a Dementia Friendly Community in your local area, and for BUDI to evaluate the implementation of the Dementia Friendly Communities initiative. There will be a follow-up questionnaire in approximately 12 months, which aims to evaluate the success of the first year of the initiative, which you will be invited to complete. We hope you can spare five minutes of your time to complete the survey and return it in the pre-paid envelope provided. We would like to assure you that all the information we collect will be kept in the strictest confidence, and used for research purposes only. It will not be possible to identify any particular individual or address in the results. Please take note of the question numbering, and then simply choose your answer and tick the appropriate box or write in the space provided. If you feel unable to answer any questions in the survey please feel free to leave your response blank and move on to the next question or section. When we refer to people with dementia this also includes memory loss for the purpose of the survey. Thank you for taking the time to read this letter. If you have any questions, please do not hesitate to contact us on or you can us at shambidge@bournemouth.ac.uk By completing this questionnaire, you will contribute directly to helping people living with dementia to feel supported and valued in your local community. We look forward to receiving your questionnaire by Friday 25th October Kind regards. Sarah Hambidge Researcher BUDI Q1 Are you a carer for someone living with dementia or memory loss? (Please tick one box only) Yes No Go to section 1 Go to section 2 Section 1: Carers Q2 Are you a...? (Please tick one box only) Full-time carer... Part-time carer... Q3 Do you receive any external care support for the person living with dementia? (Please tick one box only) Yes... Go to Q4 No... Go to Q5 Q4 If yes, what type of external support do you receive? (Please write in the space below) 65

66 Q5 If no, what type of external support (if any) would you like to receive? (Please write in the space below) Q6 Q7 Q8 Q9 What level of support do you receive from...? (Please tick one box per row only) A lot of support Some support Not a lot of support No support Family and friends Neighbours Service providers (i.e. GP, social worker) Community support groups (i.e. AgeUK) Other (please specify below) Other (please specify) If you indicated that you receive no support or not a lot of support from any of the above, why do you not feel supported as a carer for someone living with dementia? (Please write in the space below) What extra support would you like? (Please write in the space below) As a carer for someone living with dementia, do you feel you can maintain your own health and well-being? (Please tick one box only) Yes, I feel I can fully maintain my own health and well-being... Go to Q12 Yes, I feel I can maintain my own health and well-being most of the time... Go to Q12 No, I feel I can only maintain my own health and well-being some of the time... Go to Q10 Go to Q10 No, I do not feel I can maintain my own health and well-being... Q10 If not, why do you feel you cannot sustain your own health and well-being? (Please write in the space below) Q11 What would help you to better support your own health and well-being? (Please write in the space below) 66

67 Q12 As a carer of someone living with dementia to what extent do you agree or disagree with the following statements? (Please tick one box per row only) Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree I have been directed to specialist advice and information about dementia I can access services that help me to take a break I can access expert advice and information about caring for someone living with dementia I feel I can continue to support the person I care for living with dementia so they maintain their independence Please now go to section 3 Section 2: Non-carers Q13 Are you aware of the Dementia Friendly Community initiative? (Please tick one box only) Yes... Go to Q14 No... Go to Q16 Q14 Are you aware there is a Dementia Friendly Community initiative in your local area? (Please tick one box only) Yes... Go to Q15 No... Go to Q16 Q15 Are you involved in the Dementia Friendly Community initiative in your local area? (Please tick one box only) Yes... Go to Q17 No... Go to Q16 Q16 Would you like to be involved in helping to build a dementia friendly community in your local area? (Please tick one box only) Yes... No... I would like further information before deciding if to be involved... Don't know... Q17 Do you take any other active role(s) in your local community to help people with dementia (i.e. Dementia friend / Dementia Champion / Voluntary work etc)? (Please tick one box only) Yes... No... 67

68 Section 3: All respondents Q18 To what extent do you agree or disagree with the following statements? (Please tick one box per row only) In my local community... Strongly agree People with dementia can remain in control of their finances due to the support they receive from banks People living with dementia can maintain strong relationships with their close family / friends due to the help they receive from the local community Improved access to community social activities is needed to increase the participation of people with dementia There should be a reduction in dementia specific activities in the community Environmental design and town planning should take more consideration to the needs of people with dementia Better access to information and practical support for families caring for people with dementia is needed Awareness of dementia needs to be increased to help support people with dementia to remain at home and independent for as long as possible People with dementia can feel confident when out and about that they are supported by the local community Agree Disagree Strongly disagree Don't know N/A Q19 Does your job directly (i.e. care home assistant / nurse) or indirectly (i.e. retail assistant / Policeman) involve you interacting with people living with dementia? (Please tick one box only) Yes, directly... Go to Q20 Yes, indirectly... Go to Q20 No... Go to Q21 I do not work... Go to Section 4 Don't know... Go to Q22 Not applicable... Go to Q22 Q20 If yes, have you received any specific dementia training or attended any dementia awareness sessions? (Please tick one box only) Yes... Go to Q22 No... Go to Q21 Q21 Would you like to receive specific dementia training or attend any dementia awareness sessions? (Please tick one box only) Yes... No... Q22 Are there any other comments you would like to make about your business / the company you work for in relation to people with dementia or the dementia friendly community strategy? 68

69 Section 4: About you Q23 Are you? (Please tick one box only) Male Female Q24 Please indicate which age group you belong to. (Please tick one box only) Q25 Do you have a long-standing illness/disability that affects your daily activities or the work that you do? (Please tick one box only) Yes No Prefer not to say Q26 What is your ethnic group? Please tick the appropriate box to indicate your cultural background. (Please tick one box only) White - British... White - Irish... Any other White background (please tick box and specify in the box below)... Mixed - White and Black Caribbean... Mixed - White and Black African... Mixed - White and Asian... Any other Mixed background (please tick box and specify in the box below)... Asian or Asian British - Indian... Asian or Asian British - Pakistani... Asian or Asian British - Bangladeshi... Any other Asian background (please tick box and specify in the box below)... Black or Black British - Caribbean... Black or Black British - African... Any other Black background (please tick box and specify in the box below)... Chinese... Any other ethnic group (please tick box and specify in the box below)... Other (please specify) The information you provide in this survey will be used for research purposes only. Your details will be held securely by Bournemouth University and will not be made available to any third party. Bournemouth University will be the Data Controller. Thank you for taking the time to complete this survey. Please return your survey by Friday 25th October 2013 to the Market Research Group at Bournemouth University in the freepost envelope provided. 69

70 Appendix D: Online Survey sent to businesses Dementia Friendly Communities In Dorset we believe that those living with dementia and memory problems have the right to continue to live and enjoy their lives in their local communities for as long as possible. NHS Dorset, the Alzheimer's Society, Bournemouth University Dementia Institute, Prama Care, Dorset County Council, the Borough of Poole and Bournemouth Borough Council propose to develop Dementia Friendly Communities across Dorset. The aim is to increase public awareness of dementia and memory loss, and to assist people with dementia to remain independent and to have choice and control over their lives. The attached questionnaire has been designed by the Bournemouth University Dementia Institute (BUDI) to offer you the opportunity to influence the decisions made about the development of a Dementia Friendly Community in your local area, and for BUDI to evaluate the implementation of the Dementia Friendly Communities initiative. We hope you can spare five minutes of your time to complete the survey and return it in the prepaid envelope provided. We would like to assure you that all the information we collect will be kept in the strictest confidence, and used for research purposes only. It will not be possible to identify any particular individual or address in the results. Please take note of the question numbering, and then simply choose your answer and tick the appropriate box or write in the space provided. If you feel unable to answer any questions in the survey please feel free to leave your response blank and move on to the next question or section. When we refer to people with dementia this also includes memory loss for the purpose of the survey. Thank you for taking the time to read this letter. If you have any questions, please do not hesitate to contact us on or you can us at shambidge@bournemouth.ac.uk <mailto:shambidge@bournemouth.ac.uk>. By completing this questionnaire, you will contribute directly to helping people living with dementia to feel supported and valued in your local community. We look forward to receiving your questionnaire by Friday 28th March Kind regards. Sarah Hambidge Researcher BUDI Q1 Please indicate the type of business you are in (Please tick one box only) Fishing/forestry/agriculture Caravan/touring park. Garage (repair/showroom).. Tourism (inc accommodation) Landfill/recycling services Manufacturing... Retail (Inc. distribution)... Education... Construction/building... Pub/restaurant/takeaway... Hairdresser/beauty therapy. Health and social work... IT... Community/Services.. Bank/finance/insurance... Engineering... Other (please specify) Transport... Other (please specify below).. 70

71 Q2.Do you agree with the following statements? (Yes, No and Don t know options given) Q3 area? I am aware there is a Dementia Friendly Community initiative in the local area. I am aware there is a Dementia Friendly Community Alliance Worker in the local area. I am aware the Alliance Worker can help my company to develop an Action Plan which contributes towards developing a dementia friendly community. My company actively helps people with dementia, their carer or members of staff affected by dementia. My company has a Dementia Friendly Community s Action Plan to develop a dementia friendly community in the local area. A Dementia Friendly Community Alliance Worker helped my company to develop the Action Plan. The Acton Plan will contribute towards developing a dementia friendly community in the local area. My company will carry out an evaluation of the work it does to help develop a dementia friendly community in the local area. The work my company is doing to help develop a dementia friendly community in the local area will be sustainable over the long term (long term refers to longer than 12 months). My company is committed to helping develop a dementia friendly community in the local area. My company (or a member of staff) is a member of the Dementia Friendly Community Steering Group in the local area. My company displays a window sticker to show we are dementia friendly business. How is your company helping to develop a dementia friendly community in your local Q4 What do you think has been successful about your company s Action Plan (or the company s attempt to help people with dementia, their carers, or members of staff affected by dementia)? Q5 What do you think the challenges have been for your company s Action Plan (or the company s attempt to help people with dementia, their carers or members of staff affected by dementia)? Q6 What additional support would have been useful to help your company develop or implement the Action Plan (or the company s attempt to help people with dementia, their carers or members of staff affected by dementia)? Q7 What did you find useful about having an Alliance Worker to support your company s development of an Action Plan (or the company s attempt to help people with dementia, their carers or members of staff affected by dementia)? Q8 How is your company helping to develop a dementia friendly community in the local area that will be sustainable over the long term (long term refers to longer than 12 months)? Q9 What action is your company taking to show it is committed to helping develop a dementia friendly community in the local area? Q10 What actions did your company have to take to display a window sticker to show you are a dementia friendly business? 71

72 Appendix E: DACC Interview Schedule (first interview) 1. General info / stats Number of local people affected by dementia in this locality? Number of training events / awareness raising events held in the local community? Number of businesses incorporating dementia awareness training as part of the staff induction programme? Number of Local Volunteer Coordinators? Number of businesses signed up to the Dorset Action Plan? Number of local media mentions for dementia? 2. Awareness What were the levels of knowledge and awareness of dementia within the community at the start of the DFC project? What were the levels of knowledge and awareness of dementia in non-health and social care organisations (businesses, charities etc)? What were the levels of knowledge and awareness of dementia in health and social care organisations (care homes etc)? Were there any existing dementia services (information, practical support, services) in place in this location (for PWD)? If so, which community facilities provided this? What information, support or services did they provide/offer? Were there any existing dementia services (info or practical support) in place in this location (for carers)? If so, which community facilities provided this? What information, support or services did they provide/offer? Were there any existing dementia services (info or practical support) in place in this location (for the general public)? If so, which community facilities provided this? What information, support or services did they provide/offer? 3. Delivery When the DFC project first started: How has the DFC project been received by people with dementia / carers in this area? Was there any particular response which stands out? 1 negative/ 1 positive? Has either group (people with dementia / / carers) been harder to engage than another, and why? 72

73 How has the DFC project been received by the general public in the local community in this area? Was there any particular response which stands out? 1 negative/ 1 positive? Has any group (i.e. ethnic minority / people with disabilities) been harder to engage than another, and why? How has the DFC project been received by businesses in the area? Was there any particular response which stands out? 1 negative/ 1 positive? What businesses have you targeted and why? Has one business type been harder to engage than another, and why? How has DFC been received in the local area by Care homes/ Care settings? Schools / colleges? GP s and Hospitals? Community groups? Church / faith groups? Social and sports clubs like scots, keep fit etc? Pubs? Town Centre Managers? Voluntary bodies? Local health and social care services? Have there been any other areas / people / groups in the community who have not welcomed DFC? If so can you say why you think that may be? 4. Dementia Action Alliances How many Dementia Action Alliances have been set up in this area to support DFC? How many businesses and local organisations are involved? Number of staff who have received dementia awareness training? Are there any examples (yet) to demonstrate the sharing of good practice across the South West? 5. Steering groups How many members are on the steering group for this locality? (need break down of membership) Any particular good experiences you have had? / Any particular bad experiences you have had? 6.. Pre-Consultation event (This took place prior to the funding application for the project being submitted) To date, has any specific action been taken to demonstrate work has started / in progress / been completed to achieve what the general public who participated in the consultation highlighted as their priority for DFCs? 7. Any other relevant comments / information 73

74 Appendix F: DACC Interview Schedule (second interview) Discuss a case study for each of the following: a) Corporate organisation (i.e. Tesco, Lloyds Bank etc.) b) Independent, local Business c) One of the following: i.e. Person with dementia, Carer, club, society etc. Areas to discuss may include: What has this company / person / group signed up to? Why has it been successful? Were there any challenges? How were the challenges overcome? Have similar experiences happened with other companies / people / groups? If this hasn t happened why do you think this is? What are the challenges? Have you any examples to demonstrate following key areas in your local community? 1. Involvement of people with dementia Shape communities around the needs and aspirations of people living with dementia alongside the views of their carers. Each community will have its own diverse populations and focus must include understanding demographic variation, the needs of people with dementia from seldom heard communities, and the impact of the geography, eg rural versus urban locations. 2. Challenge stigma and build understanding Work to break down the stigma of dementia, including in seldom heard communities, and increase awareness and understanding of dementia. 3. Accessible community activities Offer organised activities that are specific and appropriate to the needs of people with dementia. Also ensure that existing leisure services and entertainment activities are more inclusive of people with dementia. 4. Acknowledge potential Ensure that people with dementia themselves acknowledge the positive contribution they can make to their communities. Build on the goodwill in the general public to make communities dementia friendly. 5. Ensure an early diagnosis Ensure access to early diagnosis and post-diagnostic support. Have health and social care services that are integrated and delivering person-centred care for people with dementia in all settings. 6. Practical support to enable engagement in community life Deliver a befriending service that includes practical support to ensure people with 74

75 dementia can engage in community life as well as offering emotional support. 7. Community-based solutions Support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes. Community based solutions to housing can prevent people from unnecessarily accessing healthcare and support people to live longer in their own homes. 8. Consistent and reliable travel options Ensure that people with dementia can be confident that transport will be consistent, reliable and responsive and respectful to their needs. 9. Easy-to-navigate environments Ensure that the physical environment is accessible and easy to navigate for people with dementia. 10. Respectful and responsive businesses and services Promote awareness of dementia in all shops, businesses and services so all staff demonstrate understanding and know how to recognise symptoms. Encourage organisations to establish strategies that help people with dementia utilise their business 75

76 Appendix G: DACC Group Interview schedule 1. Introduction Questions When you first started in your roles, what did you do first? How did you decide what approach to take? What guidelines did you receive? Who did you speak to? 2. Community Involvement Who did you approach within your communities and why? Did you experience any positive attitudes with particular groups? Did you experience any challenges/resistance particular groups? 3. Community Commitment How did you take those interested forwards? Do you have steering groups in your communities and how are these being taken forwards? Did you experience any challenges/resistance/positive attitudes with particular groups? 4. Launching Dementia Friendly Communities Did you have a launch in your community and why or why not? What criteria are you using to gauge commitment to dementia friendly communities and why? 5. Reflections What has worked well in your communities and why? What has worked less well in your communities and why? What would you do differently if you had the opportunity? What advice would you give someone starting in your role now? 76

77 Appendix H: Focus Group Schedule (people with dementia and their carers) How much do you feel supported by the local community in your local area in your everyday life? How much do you feel valued in the local community? Questions based on outcomes identified by the National Dementia Action alliance: 1. I have personal choice and control or influence over decisions about me 2. I know that services are designed around me and my needs 3. I have support that helps me live my life 4. I have the knowledge and know-how to get what I need 5. I live in an enabling and supportive environment where I feel valued and understood 6. I have a sense of belonging and of being a valued part of family, community and civic life 7. I know there is research going on which delivers a better life for me now and hope for the future 77

78 Appendix I: Focus Group Consent Form Dementia Friendly Communities Consent Form Please initial each box 1. I have read and understood the information sheet for the above project. 2. I understand that taking part is voluntary and that I am free to withdraw at any time without giving any reason. 3. I agree that the conversations with the team may be audio recorded. 4. I agree that the information may be used but my details will be kept confidential and anonymised. 5. I understand that all personal information will be stored safely and will be seen only by the evaluation team. 6. I agree to take part in this evaluation. Participant Name: Signature: Date: Evaluator Name: Signature: Date: 78

79 Appendix J: Focus Group Participant Recruitment Poster Bournemouth University Dementia Institute would like to invite people with memory loss to join in with a focus group in conjunction with the Dementia Friendly Communities project in your area. This will be an informal group discussion around your daily activities as a member of your community and the way in which your community supports you living with memory loss. Refreshments will be provided. Venue: Dorchester Library, South Walks House, Charles Street, Dorchester, DT1 1EF Date: 29/08/13 Time: pm All participation is voluntary and your feedback will remain anonymous. 79

80 Appendix K: Project Information Sheet: People with Dementia You are being invited to take part in the Dementia Friendly Communities Project. Please take time to read the following information carefully and discuss it with others if you wish before deciding whether you would like to take part. Bournemouth University Dementia Institute along with the Alzheimer s Society, Prama Care, Dorset Health Care, Bournemouth Borough Council, Borough of Poole Council and Dorset County Council are working together to develop Dementia Friendly Communities in Christchurch, Southbourne, Poole, Weymouth, Dorchester, Wimborne and Blandford. This project aims to increase public awareness of dementia and to assist people with dementia to remain independent and to have choice and control over their lives. Bournemouth University Dementia Institute has been asked to carry out an independent evaluation of the Dementia Friendly Communities Project. As a community member living in one of the above areas we would like to know what you think about any changes which have been made in your community, in order to make it dementia friendly and whether you have found any of these changes helpful and beneficial to you in your everyday life. Clare Cutler and Sarah Hambidge from Bournemouth University are the team carrying out the evaluation. Clare and/or Sarah will talk to you in a place of your preference either individually or as part of a group. They will audio record the conversation with your permission, and will also take notes. Please note that you may be approached to talk about your views more than once. If you accept the invitation to take part, you can still change your mind at any time. People who take part in evaluation projects often enjoy the experience and find it useful talking about their views. It is also hoped that your participation will help towards the development of more dementia friendly communities. All information will remain confidential and securely stored at the Bournemouth University Dementia Institute. Any comments that you make will be made anonymous, so that your name will not be included in any report or publication. When we have finished our evaluation we will provide a report to the project team. The results may also be used for conferences and/or publications. Thank you for taking the time to read through this information sheet. If you have any questions or concerns, please contact any member of the team using the contact details below. Clare Cutler, PG63, Talbot Campus, Fern Barrow, Poole, BH12 5BB. ccutler@bournemouth.ac.uk Tel: Sarah Hambidge, PG63, Royal London House, Fern Barrow, Poole, BH12 5BB shambidge@bournemouth.ac.uk 80

81 Appendix L Alzheimer s Society Questionnaire overview and results Alzheimer s Society Making (locality) a dementia friendly town questionnaire In this questionnaire respondents answered questions that explore how dementia friendly their local area is. There were eight responses to this questionnaire, three people with dementia or memory problems, and five carers or friends of people with dementia or memory problems as shown in the table below. Table to show the respondents of the Alzheimer s Society Making (locality) a dementia friendly town questionnaire Making (locality) a dementia friendly town questionnaire Respondent Person with Carer/friend of Works with Total dementia/ memory problems person with dementia/ memory problems people with dementia/ memory problems Blandford Christchurch Dorchester Poole Southbourne Weymouth and Portland Wimborne Grand total The responses to each of the questions from the questionnaire have been summarised below, the small sample size means that analysis of these responses is limited. 1. When you are out and about in the community, do you have any problems in banks/supermarkets etc.? Parking is difficult as not able to get a disability blue badge (Carer/friend or a person with dementia - Christchurch) My partner goes with me to help me (Carer/friend or a person with dementia - Christchurch) Some staff, often younger, do not want t engage or are afraid to engage with him [person with dementia] (Carer/friend or a person with dementia Wimborne) 2. If so what is the problem? Being rushed by staff not able to find products (Carer/friend or a person with dementia - Weymouth) My memory is not good (Carer/friend or a person with dementia - Christchurch) 81

82 Fear, lack of understanding and awareness (Carer/friend or a person with dementia Wimborne) I sometimes forget the name of what I came to collect (Person with dementia Dorchester) Leaving my trolley at the end of an aisle and it gets moved to customer services (Person with dementia - Dorchester) 3. What could be done to improve the service? Customer care (Carer/friend or a person with dementia - Weymouth) Staff training, awareness raising (Carer/friend or a person with dementia Wimborne) Menu on paper on the table (not in the window) in cafes and restaurants is easier (Person with dementia Dorchester) Shops/supermarkets could avoid blocking aisles with large crates to restock selves (Person with dementia - Dorchester) 4. Are there things that you used to do, but have stopped doing? Two people stated: Driving (Person with dementia - Weymouth) and (Person with dementia - Dorchester) We used to do more social things (Carer/friend or a person with dementia Christchurch) Using the leisure centre as much as he [person with dementia] used to (Carer/friend or a person with dementia Wimborne) Belly dancing and riding a bicycle as my balance is not good now (Person with dementia - Dorchester) 5. If so, why have you stopped doing them? He [person with dementia] has speech and communication issues, so this is difficult for us both (Carer/friend or a person with dementia Christchurch) Computer at the library limited time allowed to us it and being placed in the middle of a row of computers (Carer/friend or a person with dementia - Weymouth) Poor health, bad memory and feel tired constantly (Carer/friend or a person with dementia - Christchurch) He [person with dementia] became confused by the information on the screen at the leisure centre and would forget the settings, he could no longer use it independently and safely (Carer/friend or a person with dementia Wimborne). Stopped driving as it was too dangerous as I had difficulty staying awake (Person with dementia - Dorchester) I have difficulty remembering routines for belly dancing. Driving (Person with dementia - Dorchester) 82

83 6. What might help you start doing them again? Allow 60 minutes on computer in the library rather than 30 minutes, and locate on its own not in a row of other computers (Carer/friend or a person with dementia - Weymouth) More understanding from people (Carer/friend or a person with dementia - Christchurch) If I could remember (Carer/friend or a person with dementia - Christchurch) One to one sessions at the leisure centre, although this would be time consuming and expensive (Carer/friend or a person with dementia Wimborne) A new brain (Person with dementia - Dorchester) 7. Which local services have got it right and what do they do that you like? Bus service (Person with dementia - Weymouth) Love the day centre, they treat you with respect and care (Carer/friend or a person with dementia - Christchurch) Three respondents mention singing for the brain: Dementia groups and singing for the brain helps me to talk about it (Carer/friend or a person with dementia - Christchurch); Alzheimer s Society Memory Café and Singing for the brain (Person with dementia - Dorchester); I love singing for the brain (Person with dementia - Dorchester) Local bank staff assumed he [person with dementia] could make decisions and did not talk down to him (Carer/friend or a person with dementia Wimborne) 8. Are there new things that you would like to be able to do in the community? If so, what sort of activities would appeal to you? Posture improvements, general fitness for frail people to attend (Carer/friend or a person with dementia - Weymouth) Quizzes to help with memory (Carer/friend or a person with dementia - Christchurch) Computer skills (Person with dementia - Dorchester) 9. Any other suggestions or comments? To talk about things and ask (Carer/friend or a person with dementia - Christchurch) 10. Finally what do you think could be done to make the community more dementia friendly? People need to be aware because someone is in a wheelchair or has a problem with engaging and sometimes don t see or can t hear with people rushing/pushing past them (Carer/friend or a person with dementia - Weymouth) Easier access to disabled toilets and more of them in the town (Carer/friend or a person with dementia Wimborne) More talks or activities about dementia - why it happens what can be done etc. (Person with dementia - Dorchester) 83

84 Alzheimer s Society Experiences of living with dementia in the community questionnaire In this questionnaire participants were asked to rate the following local amenities and services, in terms of ease of use, building accessibility, signage, lighting, and helpfulness of staff: Banks and building societies Supermarkets Petrol stations Local shops, retailers and businesses Larger retail stores and department stores Hospitality Sports and leisure activities Places of worship Public buildings/services Public transport Utility providers There were eight responses to this questionnaire, four people with dementia or memory problems, three carers or friends of people with dementia or memory problems, and one person who works with people with dementia or memory problems as shown in the table below. Table to show the respondents of the Alzheimer s Society Experiences of living with dementia in the community questionnaire Respondent Experiences of living with dementia in the community questionnaire Person with dementia/ memory problems Carer/friend of person with dementia/ memory problems Works with people with dementia/ memory problems Blandford Christchurch Dorchester Poole Southbourne Weymouth and Portland Wimborne Grand total Total The responses to each of the questions from the questionnaire have been summarised below, the small sample size means that analysis of these responses is limited. 84

85 1. Banks and building societies The majority of respondents found banks and building societies easy to use, and the building accessible, well sign posted, with sufficient lighting and helpful staff (62.5% or n=5). One respondent (12.5%) did not find banks and building societies useful and felt that it would be beneficial if staff that have time to talk to customers that maybe slow or confused could wear a badge. Two respondents (25%) did not complete this question. 2. Supermarkets Respondents highlighted issues as: toilets not always accessible (37.5% n=3); regular movement of products from one aisle to another (25% n =2); shelves not always easy to reach (12.5% n=1); and not feeling confident to be able talk to staff (12.5% n=1). One respondent suggested that pictorial signs, of the food or products available in the aisle, is needed as well as wording and that staff that are trained to deal with people with memory issues could wear a badge so they are easily identifiable. 3. Petrol stations The majority of respondents (75% n=6) do not own or use a car and so did not complete this question. One respondent felt that the petrol pumps are accessible and well sign posted, whilst the other did not. They both felt that the petrol pumps had sufficient lighting and that staff were helpful. 4. Local shops, retailers and businesses None of the respondents felt that any of their local shops, retailers or businesses were not accessible, well sign posted or had unhelpful staff. 5. Larger retail stores and department stores Two respondents (25%) stated that they did not visit larger retail stores and department stores, although they did not give a reason why. None of the remaining respondents felt that any of their local shops, retailers or businesses were not accessible, well sign posted or had unhelpful staff. 6. Hospitality Six (75%) of the respondents felt that their local hospitality services were accessible, well sign posted or had helpful staff. One respondent felt that their local hospitality services were not accessible, well sign posted and that the staff were unhelpful. Ne respondent did not complete this question. 7. Sports and leisure activities Four (50%) of the respondents felt that their local sport and leisure services were accessible, well sign posted or had helpful staff. Three respondents (37.5%) 85

86 stated that they did not use their local sports and leisure services (one due to caring responsibilities). One respondent felt that their local sports and leisure services not accessible, well sign posted and that the staff were unhelpful. They noted that the lack of communal changing rooms did make it difficult to visit places such as swimming pools. 8. Places of worship Two respondents felt that their local place of worship was accessible, well sign posted and had helpful staff. One respondent stated that due to agitation they no longer attended their local place of worship. Five respondents (62.5%) did not answer this question. 9. Public buildings/services Seven respondents (87.5%) felt that their local public buildings and services were accessible, well sign posted and had helpful staff. The remaining respondent did not complete this question. 10. Public transport Three respondents (37.5%) felt that their local public transport is accessible, well sign posted and had helpful staff. Two respondents (25%) felt that their local public transport is not accessible, well sign posted and has unhelpful staff. Three respondents (37.5%) stated that they did not use the local public transport. 11. Utility providers All of the respondents (100% n=8) felt that their local utility providers were accessible, well sign posted and had helpful staff. Although two respondents (25%) stated that they could get confused when staff talked at them too quickly. 86

87 Appendix M Business Survey results A descriptive analysis of the responses to the online survey sent to businesses is provided. There was a low response rate to this survey, with six out of 46 businesses responding (13% response rate). All of the businesses that responded to the survey were aware that there is a Dementia Friendly Community initiative in their local area (100% or n=6), and had signed a local DAA Action Plan (100% or n=6). The majority of respondents were also members of the local DAA Steering group (83.33% or n=5), and felt that the DAA Action Plan will contribute towards developing a dementia friendly community in their local area (83.33% or n=5). Most respondents were aware that there is a DAAC in their local area (83.33% or n=5), and that the DAAC could help them to develop their local DAA Action Plan (83.33% or n=5). More than half of the respondents had worked with the DAAC to develop their local DAA Action Plan (66.66% or n=4). All of the respondents felt their organisation was committed to helping develop a dementia friendly community in the local area (100% or n=6), and that the work they were undertaking would help to ensure the sustainable of the dementia friendly community in their local area over the long term (i.e. longer than 12 months) (100% or n=6). Most of the respondents felt that their organisation actively helps people with dementia, their carer or members of staff affected by dementia (83.33% or n=5)., and are willing to evaluate how their work helps to develop a dementia friendly community in their local area (83.33% or n=5). Half of the respondents stated that they display a window sticker to show the public they are a dementia friendly business (50% or n=3). The remaining questions were open ended and so the qualitative responses were grouped into themes, as detailed below: How is your organisation helping to develop a dementia friendly community in your local area? 33.33% 16.67% 16.67% 33.33% Part of DAA Steering Group Providing staff with dementia awareness training Providing a safe haven Understanding the needs of people with dementia 87

88 What do you think has been successful about your organisations Dementia Action Alliance Action Plan or attempt to help peole with dementia, their carers or members of staff afffected by dementia? Raising aware of dementia amongst staff 33.33% 16.67% 50.00% Improving the provision of resources for the public Raising awareness of dementia within the community What do you think the challenges have been for your organisations Dementia Action Alliance Action Plan or attempt to help peole with dementia, their carers or members of staff afffected by dementia? Time pressures 16.67% 16.67% 16.67% 50.00% Increasing staff awareness and confidence Not sure yet Non response What additional support would have been useful to help develop or implement the Dementia Action Alliance Action Plan or attempt to help people with dementia, their carers or members of staff affected by dementia? 50.00% 50.00% None we have been well supported Non response 88

89 What did you find useful about having a Dementia Action Alliance Coordinator to support your organisations development of an Action Plan or attempt to help epople with dementia, their carers or members of staff affected by dementia? The Action Alliance Coordintaors knowledge and understanding 33.33% 16.67% 33.33% 16.67% The Action Alliance Coordinators inspired us to get involved Working together with a common goal Non response How is your organisation helping to develop a dementia friendly community in the local area that will be sustainable over the long term (i.e. over 12 months)? 33.33% 33.33% We have become part of the local DAA Steering Group Adding a link on our website 16.67% 16.67% Member of staff trained as dementia friend 89