Dementia Training Programme - House of Memories€¦ · National Museums Liverpool The House of...

An evaluation of National Museums Liverpool:Dementia Training Programme

May 2012

“It has enabled me to come in to the world of the person living with dementia rather

than expect them to enter mine. After today my approach will be very different.”

House of Memories participant

Foreword

3A Resource for those working with or caring for Older People

The House of Memories uniquely demonstrates the power of National Museums Liverpool to positively change people’s lives.

We have truly valued the opportunity to develop a very special training programme for the health and social care workforce in our region. We have witnessed a real passion and willingness from participants to positively engage with new ideas that have refreshed their knowledge and raised awareness of untapped cultural resources that can support people to live well with dementia.

We want to see a House of Memories in every town and city. Our ambition is fuelled by a strong desire to continue to support the exceptional workforce that cares for the growing number of people living with dementia in the UK.

Carol RogersExecutive Director, Education and Communities

National Museums Liverpool

The House of Memories has exceeded our aspiration to connect the health and social care sector with the fantastic social history objects held by National Museums Liverpool. Watching people who live with dementia reconnect with their own stories through seeing once-familiar museum objects is like watching flowers open.

I am delighted with the positive response and support the programme has received from a wide range of health and social care professionals. This provides a persuasive challenge for National Museums Liverpool to continue to find ways to deliver the House of Memories across our region and the UK.

David FlemingDirector National Museums Liverpool

National Museums Liverpool

Please take a few minutes to see House of Memories in action at www.liverpoolmuseums.org.uk/houseofmemories

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Improving education and training on dementia is essential to the delivery of both the National Dementia Strategy and the Prime Minister’s Challenge on Dementia. The House of Memories is a new and innovative training programme that is making a real difference to health and social care staff and the people with dementia they care for. We are pleased to have worked with National Museums Liverpool on this initiative.”

Professor Alistair BurnsNational Clinical Director for Dementia

Department of Health

The NHS on Merseyside are proud of our great partnership with National Museums Liverpool and wholeheartedly support the House of Memories programme. In our Decade of Health and Wellbeing this programme places the Museums firmly at the centre of our Wellbeing movement for the region. We know that the programme is giving real, practical help to so many families affected by Dementia. Therefore we are totally committed to supporting the programme in Liverpool and through our strong partnership will to continue to work towards a national roll out of the House of Memories.”

Andy HullDirector of Stakeholder Engagement

Liverpool Primary Care Trust

We would like to thank everyone who has contributed to this evaluation by completing questionnaires, participating in Focus groups and taking part in interviews, and by simply being a part of House of memories.

We would like to thank Julie Hanna and Catherine Reynolds for their work in carrying out this evaluation.

We would also like to thank our partners - Department of Health, Skills for Care, Liverpool Primary Care Trust. We would especially like to thank AFTA Thought for their thoughtful and informative contribution.

Acknowledgements

5House of Memories: Evaluation 2012

Foreword 3

Acknowledgements 4

Executive summary 7

Introduction 9

Background A. Museums 11 B. Liverpool 13

Aims and Objectives of the Evaluation of House of Memories Objectives 15

Population 17

Methodology 19

Data collection 20 Quantitative and Qualitative Data – Questionnaires 20 Focus groups 21 Interviews 22 Analysis of Data 23 Reflexivity 24

Themes 25

Final themes 35

Discussion 39

Conclusion 45

Appendix 1 48

Appendix 2 55

Appendix 3 56

Appendix 4 60

Appendix5 67

Appendix 6 72

Appendix 7 75

Appendix 8 77

References 78

Contents

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“I think that care agency managers and carers of people living with dementia need to receive this type of training.”

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Executive Summary

House of Memories: Evaluation 2012

This evaluation report describes the findings from the evaluation of the House of Memories training programme delivered by National Museums Liverpool (NML) and funded by the Department of Health. It explores the impact of this training for 1200 participants. The report draws together learning from qualitative and

quantitative data collected between January and March 2012 during the delivery of House of Memories. The training team comprised the museum education team and AFTA Thought, a team of consultants who use drama to help people think differently.

NML is the largest national museum service outside of London and is sponsored through the Department of Culture, Media and Sport. In 2010/11 the service received more than 3 million visits from the public. NML has built up expertise for more than a decade in supporting the health and wellbeing of older people, those living with dementia and their carers. This innovative training has taken on a wider remit to increase awareness of and understanding of dementia, and demonstrates how effectively and compassionately to communicate and develop meaningful interactions with people living with dementia. This wider awareness of dementia integrated into the House of Memories training is the foundation for the more focused memory work offered by the museum.

Health and social care staff from across Merseyside and North Cheshire took part in an interactive one day training events that focused on raising awareness and understanding of people’s experience of living with dementia. Participants explored the collections of the Museum of Liverpool based on the history of the city region. They learnt how to engage with people living with dementia using objects and memorabilia from the museum relevant to people’s personal histories.

This evaluation report makes recommendations for the future development of House of Memories, identifying its potential to increase awareness and understanding of dementia in the local population as well as in care staff specifically, and to promote dementia friendly environments.

Many of those who engaged in House of Memories had experience of dementia in their personal as well as in their working lives,and the potential for the programme to have a broader remit gradually became apparent. It is timely that as the first phase of House of Memories draws to a close new international guidance has been issued (Alzheimer’s Disease International and World Health Organisation 2012) promoting dementia as a public health and social care priority worldwide.

Overwhelmingly, participants reported that the training increased their awareness and understanding of dementia and helped them to see differently those living with the condition differently. Key to this change in attitude was that participants left the training with a belief that by listening and communicating more effectively with people living with dementia they can make a difference and improve the experience and quality of people’s lives. Participants described feeling confident after the training to try new approaches with those they helped to care.

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The style of training was very important in enabling participants to engage in the House of Memories learning experience. The training was practical and interactive. AFTA Thought use drama to present both factual information about dementia and to help participants to understand the experience of living with dementia, being a family carer or care worker. The museum facilitates memory box and memory walk sessions helping care workers to think about how to integrate these approaches into their interactions with people with dementia.

The appreciative quality of the training helped to engage participants, empowering a “can do” approach which valued the role of the care worker, the family, and the life history of the individual living with dementia. All the facilitators reflected this approach, which was consistently reported by participants as a strength of the training. It appears from the subjective feed back that the training successfully engaged many who had no or little previous training in dementia care and who benefited from the interactive and practical approach which did not depend on formal presentations and written formats.

The data shows that by the end of the one day’s training, participants believed that their knowledge, skills and access to resources to carry out memory activities in work settings had increased significantly. Their learning reflected competencies highlighted in the Qualifications and Credit Framework for dementia care (Skills for Care 2010) underpinned by the Common Core Principles for supporting people with dementia (Skills for Care, Skills for Health, DH 2011) and the National Dementia Strategy (DH 2009). House of Memoires offers a toolkit of alternative psychosocial approaches to support people living with dementia, offering potential alternatives to medication. The Museum of Liverpool has already received more than 40 bookings for memory box and memory walk sessions from House of Memories care staff participants.

House of Memories has highlighted a need and raised aspirations for training to increase awareness of how to care effectively for people living with dementia. House of Memoires has been delivered in Liverpool during the city’s Decade of Health and Wellbeing, demonstrating the city’s strong and overt commitment to developing arts and culture to enhance the wellbeing of the population.

Local circumstances will support NML in building on the House of Memories very successful first phase. In order to progress this opportunity, evidence collected in the evaluation suggests that NML must continue to develop capacity and strengthen partnership working. In addition, strategic leadership will be required to promote local, regional and national dementia friendly environments and aligned public health strategies.

House of Memories is a practical manifestation of NML’s commitment and values, as a socially responsible museum service, in acting as agents of social change by utilising community resources to both educate and inspire.

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Introduction


Museums across the UK are experts at recording and caring for people’s memories, whether they are thousands of years old or more recent ‘living memories’; museums exist as caretakers to enable society to preserve its history and memories. National Museums Liverpool fulfils this role and responsibility and has

translated it into an awareness raising and training programme. This programme targets a very specific group within society; those living with dementia, their carers and families.

House of MemoriesHouse of Memories is a training and delivery programme built around the objects, archives and stories held within the Museum of Liverpool. It aims to provide social and health care staff (in domicile and residential settings) with new skills and resources to share with people living with dementia, and to promote and enhance their wellbeing and quality of life, as a potential alternative to medication.

NML commissioned programme partner AFTA Thought to present information and drama scenarios based on research and evidence about the facts of dementia and the experience of living with dementia. NML draw on their museum education and communication skills, oral history objects and memorabilia to present practical ways of engaging people living with dementia in conversation and interactions based around their memories and personal histories.

House of Memories also supports care settings by offering memory box and guided memory walks of the museum for care staff, families and people living with dementia. House of Memories is an initiative that is developing the Museum of Liverpool into a dementia friendly setting.

Purpose of this report As part of the House of Memories, NML aims to provide the sub-regional social and health care work force with a unique training experience. This document reports on the evaluation of this programme.

Brief summary of content of report This evaluation report contextualises the House of Memories programme by presenting some background information about NML and the museum sector, the policy landscape for the care of people living with dementia and a brief introduction to Liverpool’s health and wellbeing agenda.

The evaluation utilises both qualitative and quantitative methods. The overall aim was to capture the subjective experience of the training and therefore the evaluation is rooted in a qualitative research and ethnographic multi-method approaches to data collection and analysis. The evaluation seeks to understand and share what House of Memories means to all those involved either as commissioners, trainers, social and healthcare participants and other stakeholders. This evaluation covers the three month delivery phase of House of Memories training from January – March 2012.

The focus is primarily on individual experience of engaging with House of Memories. The strength of this evaluation has been capturing and learning from those participants who attended one of the 20 one day training sessions held at the Museum of Liverpool. The findings clearly show that the overall experience has been enjoyable and inspiring and

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individual’s consistently report an increased understanding of dementia and acquisition of skills, knowledge and resources to more effectively care for and interact with individuals living with dementia and their families.

It is clear that this work is deeply rooted in the role and values of NML. The museum has responded to the current call by society, evidenced by a plethora of recent national and international policies, to care more effectively for people living with dementia. Many of those associated with House of Memories as commissioners, partners, trainers and training participants have spoken during this evaluation of their own personal stories of knowing a close relative or friend with dementia. House of Memories has touched peoples’ professional and personal lives.

The ending of the delivery of training programme coincided with the publication of the international guidance Dementia: A Public Health Priority (Alzheimer’s Disease International and World Health Organisation 2012). This seems particularly timely and supports opportunities to explore how House of Memories to might further as a public health and health literacy programme. House of Memories seems well placed to make a significant contribution to help create environments that enable people to live well with dementia. This evaluation offers NML and its partners feedback and evidence to inform the ongoing narrative about the developing role of House of Memories.

Local Authority 22.4%NHS 6.1%Private 57.0%Voluntary 6.1%Non Health/Social Care work setting 6.7%Non paid/informal carer 1.8%

The programme engaged a variety of participants from across health and social care networks.

Is your work in any of the following categories?

Where do you work?

Hospital Setting 0.5%Nursing Home 13.0%Residential Care 23.4%Sheltered Accommodation 11.5%Community 30.7%Day Care 6.8%Museums 14.1%

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A. Museums

In 2008 a cultural sector Think Tank published a document entitled Museums of the Mind.It evidenced the case for the promotion of mental health and wellbeing by the museum and health sectors (Culture Unlimited, 2008).

In the Museums of the Mind report are a wealth of examples of how museums throughout the world engage in promoting and enhancing peoples’ mental health and wellbeing. The case studies in the report were illuminating but none specifically addressed the issue of people living with dementia.

National Museums Liverpool has a proven track record of work benefiting the wellbeing of individuals with its elder programme and reminiscence work but it is only latterly that it has decided to engage with and target people with dementia.

An internationally acknowledged programme is run by the Museum of Modern Art (MoMA) in New York where gallery staff engage with individuals living with dementia and their partners and families in conversations about modern art. Although this initiative takes place in a gallery there are similarities in setting to a museum where the public can access exhibits and informally look and reflect. The MoMA programme offers people with dementia the opportunity to access personal experiences and long-term memories and participate in meaningful activity that fosters personal growth (MoMA 2009).

House of Memories is qualitatively different from MoMA’s programme. It provides guidance for engaging people living with dementia and their carers in the museum experience supporting this with a Toolkit and resources such as the Memory Box. House of Memories has also taken on a wider remit to increase awareness of and understanding of dementia and how to effectively and compassionately communicate and develop meaningful interaction and relationships with people with dementia. This wider awareness of dementia in the House of Memories training underpins the more focused memory work offered by the museum.

This approach is refelected in NML’s mission and values as a socially responsible museum service (NML 2012). It articulates and demonstrates the following values:

• We believe that museums are fundamentally educational in purpose;• We believe that museums are places for ideas and dialogue that use collections to inspire people;• We are a democratic museum service and we believe in the concept of social justice: we are funded by the whole of the public and in return we strive to provide an excellent service to the hole of the public;• We believe in the power of museums to help promote good and active citizenship, and to act as agents of change;• We believe in the importance of sustainable development, and recognize that we have a role to play in the conservation and protection of the built and natural environment;• We believe in seeking new opportunities and innovative ways of working, so as to keep our public offer fresh, relevant, challenging and competitive.

Background


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It is evident that NML is keen to create an environment that supports the development of initiatives that aim to educate and inspire. House of Memories is one such example.

NML has initiated a range of developments that support the health and wellbeing of older people. Below is a summary of NML’s activities that pre-date the House of Memories:

• Work began in 2000 to test best ways of engaging older people in the arts;• Generations Apart (2000) NML’s first reminiscence project. One of the outcomes of the project was the development of memory boxes which remains the foundation for a core learning offer to new groups and organisations today. (Memory boxes are integrated into the House of Memories programme);• New Post established - Outreach Officer for Older People (2000);• The Art of Memories – 3 day reminiscence course delivered to health care workers;• Gateway to Active Living Project (2009/10) in partnership with Mary Secole House, funded by Liverpool Primary Care Trust. This programme won guardian Public Services Award November 2010 and gained national recognition from the Department of Health.

“ An innovative partnership which explored how culture could be used to improve the health and wellbeing of older people using reminiscence, art and cultural references, and it is a very worthy winner.” (Guardian Public Sector Award 2010)

The programme was evaluated (Andrews 2010) and found that the following recommendations were made for future interventions –

• More involvement with partners from earliest planning stages;• Consider from the outset how to maintain ongoing interaction/contact with participants after end of formal programme;• Design environments and activity programmes conducive to wellbeing;• Public display of artworks in accessible locations conveys powerful messages of value;• Tours behind the scenes – created significant value for participants;• Learning team to receive bespoke mental health training.

These recommendations are reflected in House of Memories and continue to be organisationally influential.

House of Memories and the work of NML is taking place at a time of local, national and international policy innovation for supporting individuals living with dementia and those whose lives are impacted by dementia. Please refer to appendix 1 for a short summary of some of these national policy drivers.

B. Liverpool

Liverpool has promoted the Decade of Health and Wellbeing and is continuing to strive to improve the mental health and wellbeing of the city’s population.

This ten year programme follows on from the success of 2010 Liverpool’s Year of Health and Wellbeing. These initiatives were seeded by Liverpool’s European Capital of Culture year with its emphasis on partnerships between culture and arts and health and social care sectors to benefit people’s wellbeing. From 2003 when the city was awarded the 2008 Capital of Culture status the European initiative was seen as an opportunity to; regenerate the city’s physical environment, to develop Liverpool as a regional, national and international tourist destination and to benefit the health and wellbeing of the region’s population. Culture was a focus for this investment and growth.

Local research following Capital of Culture 2008 and international evidence indicated that arts and culture have an enormous potential for improving wellbeing (Health is Wealth Commission 2011). This was further highlighted in the city’s public mental health strategy in 2009 which introduced planners, strategists and decision makers to city-wide approaches to promote wellbeing, House of Memories and NML’s role in leading and developing the House of Memories programme both builds on and contributes to the 2008 legacy.

The Decade of Wellbeing has adopted the Five Ways to Wellbeing (nef 2008) as a focus for individual and community action. House of Memories did not build in the ‘five ways’ overtly into the project planning, design or evaluation although conversations are being held currently with local health commissioners and local government about integrating the five ways to wellbeing into future developments for House of Memories.


Visits to the Museum

Participants were asked about their museum visits in the last 12 months. See charts below.

Yes 50.0%No 50.0%

Museum of Liverpool 62.9%World Museum 46.4%Walker Art Gallery 45.4%Merseyside Maritime Museum 39.2%International Slavery Museum 28.9%Lady Lever Art Gallery 21.6%Sudley House 9.3%

have you visited a museum in the past 12 months?

Which museum/s have you visited in the past 12 months?

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To describe and interpret in a final report the impacts for NML, partner organisations, the social and health care sector and those living and caring for people with dementia of the House of Memories training programme. The report will inform the strategic development of the role of museums in

continued service provision with older people and specifically for people living with dementia and their carers.

Objectives

A. To deliver a robust evaluation of House of Memories that:

• Answers the key questions NML want to address;• Assesses the effectiveness of the training programme from different perspectives;• Offers learning outcomes for NML;• Contributes to an understanding of the strategic impact of House of Memories in the social care sector with regard to the role of museums in service provision for older people; • To deliver a timely evaluation, starting in December 2011 and finishing at the end of April 2012, with a final report; • To plan and deliver an evaluation that is inclusive and enabling to facilitate participation and the gathering of different experiences and rich data; • To deliver an ethical and trustworthy evaluation that is rigorous with a transparent audit trail; • To develop an effective working partnership with NML to ensure the evaluation process is responsive; • To maintain regular and ongoing communication with NML about data collection, analysis and findings.

Below are the objectives and outcomes for House of Memories identified by NML which must be addressed by the evaluation -

NML envisage their social care partners will:

• Readily access NML’s ‘House of Memories’ resources to support people living with dementia;• Embrace a wide range of practical skills and knowledge to develop their practice;• Create their own ‘House of Memories’ programmes;• Measure achievement linked to QCF qualification;• Value and connect with NML’s elder care programmes.

Aims and Objectives of the Evaluation of House of Memories


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B. NML anticipate that individual participants will also:

• Understand how information about a person’s life history and personality can be used to support an individual to live well with dementia;• Communicate with an individual using a range of cultural and arts based methods to stimulate positive interactions;• Help individuals living with dementia enjoy life and make a positive contribution towards re-building self esteem and confidence;• Provide a safe and secure environment for older people living with dementia in a museum and/or care setting;• Involve carers and extended family to support individuals living with dementia, through shared creative activity.

C. Key questions NML wish to answer:

• What is the impact of each element of the project on the participants in terms of the care and support of individuals living with dementia? What is the evidence to support this?• Are museums and art galleries well placed to support social care workers and the care profession through cultural engagement?• What is the wider impact on residential settings, associated families and communities?• What skills have participants developed through the project? • Should we be doing more of this work?• To what degree do partner agencies value their work with the museum?• Has there been a measurable change in participants’ perception of NML, their confidence, motivation and self esteem? What does this look like?


Training participants were drawn from Merseyside and North Cheshire. 1200 participants attended House of Memories. Included in this population are NML staff who were invited to attend.

The charts below give some demographic information about the participants:

Population

Male 12.8%Female 87.2%Transgender 0.0%

How would you describe your gender?

18-20 4.2%21-29 15.3%30-39 11.1%40-49 32.3%50-59 30.7%> 60 6.3%

Please identify your age category

White - British 91.9%White - Irish 3.3%White - Other White Background 0.9%Mixed - White and Black Caribbean 0.0%Mixed - White and Black African 0.5%Mixed - White and Asian 1.4%Mixed - Any Other Mixed Background 0.0%Asian or Asian British - Indian 0.0%Asian of Asian British - Pakistani 0.0%Asian of Asian British - Bangladishi 0.0%Asian or Asian British - Other 0.0%Black or Black British - Caribbean 0.0%Black or Black British - African 0.5%Black or Black British - Other 0.9%Chinese 0.5%

How do you define your ethnic origin?

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“I now realise how the Liverpool Museum can

have a positive effect on a person who has dementia.”


The evaluation was carried out as a reflexive multi method ethnographic based study (Denzin 1997, Etherington 2004). Ethnography suggests an in depth subjective approach to understanding aspects of a social group engaged in meaningful behavior (Altheide 1987). Data was collected in multiple ways to

help to create a rich picture of the impacts of the House of Memories training.

“Ethnography is the arts and science of describing a group or culture” (Fetterman 1998).

In this case the group under study was the “House of Memories” bringing together NML, social care staff and those living with dementia and their families.

The evaluation took place in the “natural setting” of the museum where the training was being delivered.

In ethnographic research the emphasis is on qualitative methods such as participant observation, interviews and documentary methods. Ethnography helps us to understand the experiences of individuals at a micro level and how they are situated and influenced by a larger context. Some quantitative data was also collected.

Arts, Culture and Health/Wellbeing initiatives bring partners together from sectors with different training, philosophies, language and processes. House of Memories is an example of this. Therefore carrying out an ethnographic study helped describe and interpret the coming together of these sectors and the unique melding of these bodies of knowledge and relationships and their benefits.

Methodology

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Quantitative and Qualitative Data – Questionnaires

Data analysis: 30% of the total questionnaires were collated and analysed in full (i.e. two days of data from January/February and March training sessions). In addition 10% of the remaining questionnaires were added to the sample.

Although the evaluation was rooted in qualitative research methodology quantitative data was also collected as part of the questionnaires completed by participants on the training days.

Baseline quantitative data was collected from participants at the start of each training day giving detail about demographics of the people attending the training such as age, gender and ethnicity, their place of work and their recent visits to National Museums Liverpool and other museums. There is also a question about previous experience of using memory activities. This information is made richer by qualitative data about participants’ experience of dementia both in their work and personal lives.

Lickert rating scales have also been used to help capture participants’ subjective understanding of their knowledge, skills and access to resources for delivering memory activities in their care settings. These questions are asked both at the start and the end of each House of Memories training day.

These questions are relevant to the aims of the training, to knowledge acquisition and behavioural change.

Questions are asked to gain more information about participants’ beliefs about the possible impact of memory activities on a person’s life living with dementia and whether they can reduce distress and increase self esteem and confidence. It was decided not to ask directly about the impact or role of medication in the questionnaire. This issue was explored in the focus groups. However it was felt relevant to capture participants’ beliefs about memory activities as a psycho-social strategy to help support people with dementia and as a potential alternative/adjunct to medication for those with challenging behaviours.

In addition participants wrote on post its and contributed to a graffiti wall at the start of each training day about their interpretations and understanding of the meaning of dementia and museums. This data has also been used in the evaluation.

Pre-Questionnaire (start of House of Memories training day) - Appendix 6Post-Questionnaire (end of House of Memories training day) - Appendix 7

Data Collection

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Focus groups

Four focus groups were carried out in order to explore in more details some of the issues addressed in the questionnaires. It was a opportunity to further understand the experience of the training from different perspectives.

In total 34 people took part in Focus groups.

The groups were designed in liaison between the evaluators and NML. The membership of the groups were drawn from samples that enabled the collection of data with both homogeneous and heterogeneous characteristics . In two of the groups more general conversations took place from the perspective of people working in different areas of NML and in different care settings. In the remaining two groups there was the opportunity to have a more focused conversation about the experience of the NML communities team and from within one care setting.

1. Museum staff a. Staff from different museums and directorates within NML who had attended House of Memories training b. Communities team who had been involved in the delivery of House of Memories

2. Social and health care staff a. Staff from different care settings; b. Members of one Residential Care Home setting where all staff had attended House of Memories training.

There was sufficient saturation of data and repetition of themes after 4 Focus groups to not consider carrying out further groups.

Focus group Questions - Appendix 8


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Interviews

Five people were interviewed with:

• A strategic role for the development of House of Memories;• Lead roles for the delivery of House of Memories;• NML perspective;• Afta Thought perspective;• External partner perspective with expertise in the care of people living with dementia and training for those working with people with dementia.

A semi- structured interview schedule was designed and the same questions were asked of everyone. However there was the opportunity to explore issues that each interviewee thought were particularly relevant or significant that were not explicitly asked by the interviewer. Three individuals were interviewed separately and two people were interviewed together.

Interview Questions Appendix 9.

Field notes

The evaluators attended one half day rehearsal for House of Memories and full days House of Memories training as participant observers. This enabled them to experience and observe House of Memories training and help them make sense of the other data. It gave them insider knowledge of what it is like to experience the training.

Settings

The data was collected by the evaluators largely in the Museum of Liverpool i.e. the setting where House of Memories training was delivered.

The exceptions to this was an interview with two individuals that took place in their place of work and the Focus group with members from a residential care home which took place in this setting.

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Analysis of Data

Ethnographic Content Analysis is embedded in constant discovery and constant comparison (Glazer & Strauss 1967). The data will be analysed for themes in relation to: • Training outcomes;• Health and wellbeing outcomes for people living with dementia;• Key questions that NML wish to address.

The amount of data collection took into consideration data saturation; the point when no or very few new themes are arising from the process of synthesis and analysis of the data.

Limitations

A limitation of the data collection and analysis was the length and number of questionnaires. It was not practicable within the constraints of the time scale and budget to analyse all the data from the questionnaires. It is not best practice in evaluation and research to generate data that is not used. Possible ways forward to consider in the future:

• Shorter questionnaires:• Participants to input data electronically – this was considered but there was no practical solution identified to implement this.

Rigour and trustworthiness was maintained by • Triangulation of data collection methods – questionnaires, focus groups, interviews and data collected by participant observation;• Analysis of results by two evaluators;• Member checking - engaging participants in giving feedback about findings. As findings were emerging ideas were checked out with participants in focus groups and interviews; • Maintaining a transparent decision/audit trail.

The themes from the interviews, focus groups and questionnaires have been collated and synthesized into overall and final themes. All these themes have been published as part of the evaluation report and contribute to an audit trail of how the findings, conclusions and recommendations were developed.


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Reflexivity

The evaluators bring to this work their backgrounds and experience in education and training, health promotion, mental health care, evaluation and research. The evaluation is a subjective interpretation of the feedback and data collected.

In a reflexive research/evaluation process the researcher is made visible to the readers and recipients of a study. In this way the identity of the evaluators and their impact on study is explicit and transparent.

Julie Hanna and Catherine Reynolds bring their health and education lens to this study. However both have also had experience in the cultural sector from the perspective of NHS staff. Julie was Creative Health and Wellbeing Manager for Liverpool’s European Capital of Culture delivery team from 2004 to 2009 and Catherine has commissioned artists within her previous strategic role in Public Mental Health.

Ethics and Safety of Data

Every reasonable effort has been taken to maintain participants anonymity and confidentiality through out the evaluation process of data collection, analysis and dissemination of findings.

Focus group members were given an information sheet and asked to sign that they were willing to participate in the groups.

Once the report is completed primary data collected by interview and focus group will be deleted from the evaluators’ data bases. The questionnaires will be safely stored by NML.

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Introduction to themes

All the data was analysed and organized into themes. Below are summaries of themes identified in the questionnaires, focus groups and interviews. (This data can be found in full in appendices).

The Final Themes are a synthesis of these and are listed on page 37 and explored further in the “Discussion” section of this report.

Pre-Questionnaire (completed by participants at the start of the day)

Participants shared their expectations of the day. They hoped to learn more about dementia and how it affects people and to learn new approaches to help people living with dementia. Many hoped to learn something new but didn’t specify what that was. It was clear that House of Memories was perceived as offering general learning about dementia as well as the more specific role of the museum.

Post-Questionnaire (completed by participants at the end of the day)

The most significant learning reported by participants at the end of the day was two fold: their understanding of dementia had increased and their understanding of how to help people living with dementia had increased. Therefore their expectations expressed at the start of the day had been met. The training had impacted both on people’s professional and personal lives.

This match between expectations and learning is perhaps reflected in the high satisfaction expressed by participants with the training.


Themes

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Focus Groups

Focus groups were held with museum staff (participants and House of Memories trainers) and social/health care staff. Many of the same issues were expressed from these different perspectives. These conversations explored in more detail practical implications for the current and future implementation of House of Memories particularly in relation to the museum role and environment. There was great interest and motivation for ongoing development of House of Memories and work targeting the impact of dementia on the community by NML. The personal impact of the training was again addressed in these conversations.

The most detailed conversation about medication with people living with dementia took place in one of the focus groups. This gave a sense of the concerns of those working with dementia about medication and a desire to explore and learn more about medication and alternative strategies for helping people.

High levels of satisfaction with the training were expressed in all four groups. All had gained in understanding about dementia. The training had relevance to those studying for QCF qualifications and was seen to address these competencies. Recognising signs of distress and the role of families were particularly talked about in the groups.

Interviews

Interviewees shared the view that House of Memories had exceeded expectations and that there was also great potential to build on what had already been done and develop the programme further. There had been learning about the role of the museum and about dementia. The personal impact of the programme was also reflected in this group. There was a recognition that museum staff and teams had benefited from House of Memories initiative.


Quantitative Data – knowledge, skills and access to resources

At the start and at the end of the day participants were asked questions about whether they had the necessary knowledge, skills and resources to deliver memory activities in their care settings.

By the end of the training day there had been a very noticeable shift in how participants perceived their own knowledge, skills and access to resources. The most significant difference in these charts is for “strongly agree” responses. At the end of the day the number of participants rating themselves as strongly agree is significantly higher than at the start of the day. At the start of the day there was more of a spread across the different ratings.

Below are the charts.

I have the necessary knowledge to deliver memory activities in my care setting

Before the training

strongly disagree 2.7%disagree 19.3%neutral 33.2%agree 37.4%strongly agree 7.5%

After the training

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I have access to appropriate resources to deliver memory activites in my caresetting

Before the training

After the training




I have the necessary skills to deliver memory activites in my caresetting

Before the training


After the training


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Participants were also asked at the start and the end of the day questions about the impact of memory activities on people living with dementia.

The majority of participants had had some previous experience of memory activities with people living with dementia

Yes 60.2%No 39.8%

Have you experience of memory activities with people living with dementia?

The chart below show another shift towards strongly agree by the end of the day.


Memory activities acn improve a person’s life living with dementia


Memory activities can help reduce feelings of distress, humiliation or fear for people living with dimentia

Before the training

After the training



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Memory activities can increase self-esteem and confidence for people with dementia

Before the training


After the training



Memory activities can help you to build more effective relationships with people living with dementia

Before the training

After the training



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“The most significant thing has been the resources and support that

is freely and enthusiastically available from the Museum of Liverpool. ”


• Increasing Awareness of and Understanding of Dementia: seeing Person centred approach;• Being in their world not mine • Living with dementia is different for every individual;• Increased understanding that listening and communicating effectively can make a difference to the person living with dementia and help them to live well;• Increased knowledge about different stages and types of dementia and effect on behavior;• Understanding the family’s perspective and increased confidence to engage with family members;• Relevance of training to current guidance on caring for people living with dementia identified in the National Strategy: Living well with Dementia (DH 2009) QCF Guidance (Skills for Care 2010) and the Dignity agenda (Commission for Dignity in Care for Older People 2012);• Relevance to personal lives as well as to work roles. Increased Awareness and Understanding the role of the Museum/museums: seeing museums differently

• Appreciation of the value and impact of Museum Resources (memorabilia and staff), knowledge and venue to enhance lives of people living with dementia;• Connection between individuals living with dementia and memory loss and the role of museums as the caretakers of memories and the past able to help maintain identity and dignity through personal narratives and histories; • Understanding and valuing the Museum as Dementia Friendly (and suggestions/ideas to make it more dementia friendly);• Acting out social justice agenda of NML and possible model for future initiatives.

Training delivery and style: interactive and appreciative

• Engaged and gained from interactive style of training including drama, tours of the museum and memory box workshops. • Participants felt empowered by the training:• Expressing commitment to carrying out what they had learnt; • Felt valued and confident that they have the skills to make a positive difference to people living with dementia;• The training was appreciative focusing on what works well and acquiring knowledge, skills and resources to implement different approaches in interactions with people • living with dementia.

Final Themes

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Dissemination and sharing of training

• Opportunity to network as part of the training and share/learn from others; • Commitment to sharing learning back in the work place with other staff/team members;• Recommend colleagues attend training;• Recommend others attend training such as managers, clinicians;• Engage with others in the community such as individuals from BME groups;• Recognition of relevance of the training for families of people living with dementia;• Identification of a Public Health role for the museum in helping to increase dementia health literacy in the local population.

Increased awareness of issues linked to medication for people living with dementia

• Openness to talk about use of medication and its effects with people with dementia;• Desire for more information about medication issues;• Understanding that psycho-social approaches activities such as memory activities can reduce distress, enhance interactions and increase self esteem and confidence for people living with dementia.

Aspirations for the Future: What next?

• To develop a long term, sustainable House of Memories strategy; • To further develop NML’s Public Health and health literacy role in supporting people living with dementia, locally, regionally and nationally;• To develop a key role in Liverpool’s Year of Dementia in 2013; • To learn from the experience of House of Memories to inform other NML initiatives particularly focusing on social justice and health/wellbeing agendas;• To continue to develop closer and more effective partnership working with other organisations and leads/champions in dementia care.

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Postscript: Everything and Nothing

There was some feedback that was unspecific. Participants liked everything about the training or nothing about the training.

Everything -

A significant number of participants fed back that everything about the House of Memories training was useful. They found the day generally informative, inspirational and very rewarding. The day was fun and definitely not boring. They described gaining a lot from House of Memories and that it was a fantastic experience. The questionnaires contained many thank you’s and smiley faces!!

Nothing -

A very small minority of participants found nothing useful about the House of Memories experience. This handful of participants said that they would do nothing differently back in the work place either because they had learnt nothing relevant or that they already worked in a way that reflected the content of the training.


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“I think that care agency managers and carers of people

living with dementia need to receive this type of training.”

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Overwhelmingly, the evaluation of House of Memories shows that the training has increased awareness and understanding of dementia and helped people to see dementia differently.

There is strong evidence in the data that participants feel more empathy for people living with dementia and for their families. Participants describe taking the imaginative leap of entering the world of the person with dementia and making the starting point for communication the individual’s understanding of the world rather than their own perception as a carer. Participants expressed a greater awareness of peoples’ individuality and that not everyone with dementia is the same.

As a result of increased empathy the participants express the view that they must listen more to individuals with dementia. A key part of this change seems to be that they believe, by the end of the one day training, that listening and communicating more effectively can make a difference to the experience and quality of people’s lives with dementia.

These attitudes to people living with dementia are expressed over and over again in the participants’ feedback about the training. Some training participants say that they are reassured and that their approach and beliefs have been affirmed by the training but most share these ideas as if for the first time.

“ Yet when you gaze into the eyes of someone living with dementia, as you feel them responding to your touch with a warmth that was previously hidden, you very soon become acutely aware that issues of personhood and effective care are inextricably linked.” (Stoddart 1998)

Tom Kitwood promoted the concept of personhood (Kitwood & Bredin 1992) links the recognition of a person’s identity with their relationships with others who care for them. House of Memories participants describe both becoming aware of the individual and their experience of living with dementia and empowered to engage differently with people with dementia in the future because they appreciated that this could make a difference to the quality of a person’s life. Participants found that the morning drama scenarios demonstrated how communication and interactions can change how people living with dementia feel and behave.

The style of the training was important in enabling training participants to engage with these ideas and open them to new ways of thinking. Participants commented on the lack of Power Point and formal presentations. They acknowledged the power of the scenarios presented by the actors and the value of the Memory Walk tours of the museum and Memory Box workshops. Participants commented on the interactive style of training and others said that it wasn’t boring and was unexpected.


Discussion

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The training was interactive, practical and appreciative. Both evaluators attended training days and from the start the message was that health and social carers were valued and had an important role to play in the lives of people with dementia. The training also focused on ‘what works’. The scenarios presented examples of ‘can do’ and the impact these approaches had on those living with dementia and their carers. The museum offered ways of enhancing effective communication with individuals by triggering memories and linking objects to people’s personal histories. The training embraced a strengths-based approach drawing on models of change such as appreciative inquiry. The training embraced a strength-based approach drawing on models of change such as appreciative inquiry. (Watkins & Mohr 2001)

One of the reasons given for supporting House of Memories training by the Department of Health was to increase awareness of alternative approaches to supporting people living with dementia in addition to medication. The Time for Action Report (Banerjee 2009) highlights concerns about the use of antipsychotic medication for people with dementia. The questionnaire did not ask questions directly about medication but the issue was explored in the focus groups with health and social care staff. There seems some evidence to suggest that these issues could be explored further in the training. However there is evidence to suggest that House of memories has raised awareness that activities such as memory focused activities can reduce the distress of people living with dementia, build more effective relationships and enhance their self esteem. It can be seen as a tool kit of alternative psycho-social strategies supporting people with dementia along side or instead of medication.

House of Memories aimed to help participants to have a learning experience that matched the QCF (Skills for Care 2010) training units for staff caring for people with dementia. Level 2 QCF units are divided into four main areas:• Dementia Awareness; • Person Centred Approach to Care; • Factors that influence communication and interaction; • Issues of equality, diversity and inclusion in dementia.

In the Focus groups these training outcomes were explored in relation to House of Memories as well as analysing feedback given in the questionnaires. House of Memories was closely aligned to the QCF framework. In one of the Focus groups care staff talked about using the training to inform their QCF units and changing assignments to incorporate new learning. A small number of participants had difficulty relating the training to their area of work. A few care staff, for example, working with people with a learning disability and dementia felt that the needs of this group were not sufficiently addressed in the training because this group were not included in the AFTA Thought drama scenarios. Others felt, working in the community, that their roles excluded them from being able to use the knowledge and skills in work which was very time limited focusing on personal care tasks such as feeding, dressing and washing.

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These examples perhaps demonstrate a need for follow up support to help carers understand the relevance of the training for their particular work situation and to integrate new approaches that enhance interaction and communication between themselves and the person living with dementia into specific work place settings. Focus group participants recognised the need for this. Carers in the residential care setting who joined in a Focus Group said that the training had given them the confidence to try different approaches with residents. They talked about it being “trial and error”; what the staff had tried hadn’t always worked but it had opened them to new possibilities. For example, how to communicate with the residents living with dementia and that it might be possible to improve the quality of their experience and reduce their distress. This staff group demonstrated a willingness to try different approaches and demonstrated confidence that not all participants felt.

The World Health Communication Associates (WHCA) defines health literacy as:

“ Health literacy refers to a person’s capacity to obtain health information, process it and act upon it. Health literacy skills include basic reading, writing, numeracy and the ability to communicate and question. Health literacy also requires functional abilities to recognise risk, sort through conflicting information, make health-related decisions, navigate often complex health systems and ‘speak up’ for change when health system, community and governmental policies and structures do not adequately serve needs. People’s health literacy shapes their health behaviours and choices—and ultimately their health and wellbeing.” (WHCA 2011)

Participants attending the training demonstrated different levels of health literacy. The AFTA Thought and Museum team were able to help participants navigate and make sense of the experiences of the day. However, follow up training or support would help training participants to develop these skills further and to make sense of the information applying it to different situations and individuals.

Many participants viewed the museum differently as the training progressed. The Museum of Liverpool was seen as a valuable resource for the care sector with its collections, building and staff. There were high expectations expressed of the museum as an ongoing point of contact for knowledge and support for people living with dementia and their carers and as a destination as a safe place to visit. There was also a recognition that the museum could further develop to become more dementia friendly making suggestions such as:• Clearer signage;• Trained volunteers;• More flexibility with opening times;• Space(s) for conversation and to reflect on the exhibits.


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NML’s mission is to:

“ …change the lives of our users, and enable millions of people, from all backgrounds, to engage with out world class museums.” (Changing Lives 2012)

The museum’s values encapsulate their role to educate, inspire, and to strive to offer a service to the whole of the population to promote good and active citizenship and be agents of social change. House of Memories is a comfortable fit with NML’s intention to reach out to different groups in the population and use their skills and resources to enhance the lives of others. House of Memories has extended NML’s reach and partnerships with health and social care. Although the museum has done work previously with community and health partners this initiative represents a step change in developing a relationship with the Department of Health, aligning with national health and social care policy and incorporating health promotion and health literacy into a museum programme.

The training was aimed at health and social care workers. House of Memories has been successful in recruiting large numbers of health and social care staff to attend for training - 1200 attended training over the three months delivery period aimed at 1000 participants. (Some in the delivery team thought that 500 would be a more realistic target). Feedback from the evaluation suggests that it would be useful for families and informal carers of people living with dementia to attend House of Memories training. In addition participants recommend that paid and informal carers attend together in order to help facilitate understanding and communication between these groups of people. Although the training was primarily aimed at people working in health and social care some museum staff also attended. This was part of the museum’s initiative to become more dementia friendly and to raise awareness amongst its own staff about dementia. Museum staff attended the training from different museums and departments within NML. It was found and increasingly recognised throughout the training that participants were gaining from House of Memories personally as well as professionally. Questionnaires asked whether participants had personal experience of dementia and focus group members and interviewees involved in the training at a strategic and operational level all shared their personal stories of how dementia has impacted on their lives. Some of the museum staff also reported interest from museum visitors in the training.

Therefore, although the initial vision for House of Memories did not envisage a role with the general public those who have engaged with the programme have seen the potential for House of Memories to have a broader remit. Participants have fed back during the evaluation about how useful the training has been in caring for close relatives living with dementia or preparing for the future possibility. Some have expressed sadness and regret that it is only now that they know how they might have better helped a relative with dementia who is now no longer living. Others talked about delivering House of Memories to schools to increase understanding from a young age.


Fullan (1991) identifies three key factors in the process of adopting a new initiative; relevance, readiness and resources. House of Memories is relevant to the values of the museum and is aligned with Liverpool’s Decade of Health and Wellbeing placing arts and culture central to its delivery. House of Memories reflects the emerging social and political context of dementia awareness recognising dementia as a priority for society. Furthermore new international guidance (Alzheimer’s Disease International & WHO 2012) has been issued, making dementia a global public health priority.

This new guidance coincides with the ending of the first phase of House of Memories. Evidence from this evaluation suggests that NML is perhaps approaching a state of readiness to develop the programme further and to align the initiative with the emerging national and international public health agenda. There seems some synchronicity in these developments.

The guidance identifies issues of concern about how few staff working with people with dementia have received training in dementia care (including statistics from the UK). The report also identifies migrant workers as a group with special needs around training because of language and cultural differences.

House of Memories seems to have been very successful in engaging with large numbers of the workforce. In planning for the next steps and finding the resources necessary to continue the House of Memories journey it is perhaps worth reflecting on some questions that that the evaluation raises:

Why were so many of the House of Memories training participants White British? Does this reflect the dementia health and social care workforce profile in the Merseyside/Cheshire catchment area?

Why was the training so overwhelmingly successful at raising awareness of people’s needs living with dementia?

What role did the following play in this?

• Museum of Liverpool venue – characteristics of the venue such as a different and novel venue for training the health and social care workforce, the attractiveness of the building and location and a setting fit for purpose to explore the relationship between dementia care and interactions triggered by memories and personal narratives. • Free training, funded by the Department of Health• Style of training – interactive, practical, appreciative and strength based, non theoretical

In the evaluation, participants expressed a strong liking for the style of training and for the venue. The fact that House of Memories was free training was rarely mentioned however the evaluation was largely based on the feedback of front line care staff and not organisations/managers who might be more concerned about training costs.

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The evaluation did not ask questions about participants’ education or previous training in dementia. It was however evident from the questionnaire feedback that many participants did not have high levels of literacy and that the training experience was found to be subjectively very helpful in enhancing skills, knowledge and access to resources to implement new approaches in caring for people living with dementia.

Therefore, House of Memories was successful in engaging people within the workforce who might have found it difficult to benefit from more traditional learning based on written formats. Perhaps there is potential in the marketing of House of Memories to engage other people from within the workforce who perhaps excluded themselves from the training because English is not their first language or because they are not used to engaging in learning opportunities. Marketing House of Memories sensitively and clearly in this way might be a key also in engaging members of the public in House of Memories in some form. Stigma, fear and a sense of hopelessness about dementia create feelings and attitudes in carers and within the whole population that imaginative awareness raising and training opportunities such as House of Memories might be in a good position to challenge and bring about positive change.

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The evidence from the evaluation shows that House of Memories has characteristics of both readiness and relevance, as described by Fullan, (1991) to develop further. The strengths of House of Memories training are overwhelming. Although much of the evidence is subjective and gathered

through self-assessment by the participants other objective evidence is emerging to support these perceptions.

The NML Community Team has received bookings for 31 Memory Box sessions to be delivered in care settings and 11 bookings for Memory Walks around the Museum of Liverpool which have directly arisen from House of Memories participants. These booking have been made across the geographical target area of House of Memories covering Sefton, Knowlsey, Wirral, Liverpool, Halton, St Helens and South Cheshire. There have also been numerous self-guided visits booked at the museum by health and social care staff and 25 enquiries for the Suitcase of Memories loan boxes.

In March this year the Prime Minister (Cameron 2012) launched his challenge on dementia, delivering major improvements in dementia care and research by 2015. The announcement included funding for dementia research:

“ The dementia challenge, however, will not be resolved by the natural sciences alone. It will also require progress in social care, so that patients can be helped to live at home for longer, and so that relatives who care for their loved ones receive the support they need. And it will require action to raise awareness of this devastating condition, so that it is understood and not stigmatised.”

The Guardian website:

The new international guidance about dementia as a public health priority has arisen out of both the growing numbers of people living with dementia globally and the lack of understanding making dementia a threat to public health. NML has a great opportunity building on what it has learnt from the first phase of House of Memories to make a contribution to promoting health literacy for people living with dementia and all those affected by it. The museum and the museum sector has a unique way of communicating with people living with dementia as the care takers of memories. Museums have a language to build relationships with all those affected by dementia.

For NML to develop House of Memories further there is evidence to suggest in the evaluation that Fullan’s (1991) third requirement of resources and capacity for implementation needs to be addressed.


Conclusion

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Recommendations for future development of House of Memories;

• Securing external funding partners;• Developing internal capacity and a model of delivery by NML for House of Memories that is able to sustainably meet the high demand and aspirations for the programme;• Strengthening partnership working between NML and external partners in order to: 1. Share expertise; 2. To increase capacity;• Strategic leadership that is able to steer House of Memories to adapt and meet health and social care policy guidance for dementia care and the wider remit of public health guidance.

Successful health promotion defined in the Ottawa Charter (WHO 1986) requires the adoption of healthy public policies by health and non health sector organisations. It is essential to create supportive environments that encourage health promoting behaviours. Community initiatives where people are required to take more control and effect changes that enhance their health are also essential ingredients for health promoting behaviours.

This work has begun in Liverpool which leading up to and since 2008 has a strong and overt commitment to developing arts and culture to enhance the wellbeing of the population. This report is being written just a week after the Giants walked through Liverpool attracting one million visitors into Liverpool neighbourhoods and the city centre. (REF)

Participants described the museum as having the ability to increase the happiness of individuals living with dementia. Culture and the arts does not always make us happy, however sometimes it can. It also offers an alternative language, experiences and ways of finding meaning in our lives that can enhance and promote wellbeing.


“The museum is an invaluable resource – both as a visiting venue and resource

input. Also as an inspiration for reminiscence groups. ”

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Dementia

There are 800,000 people living with dementia in the UK currently and this is expected to rise to a over million people by 2021 (Statistics 2012)

It is worthy of note that:

• The financial cost of dementia to the UK is over £23 billion; • Only 40% of people with dementia receive a diagnosis.

Living well with dementia: a National Dementia Strategy (DH 2009)

This national five year strategy provides a strategic framework to deliver quality improvements to dementia services and address health inequalities for people living with dementia. The guidance is for people with dementia, carers, health and social care professionals and anyone affected by this condition.

The strategy has three key steps to improve people’s quality of life living with dementia• Ensure better knowledge;• Ensure early diagnosis;• Develop services.

The strategy acknowledges the progressive and devastating impact of dementia on individuals and at the same time emphasises that things can be put in place to support individuals with these illnesses to live well.

The use of antipsychotic medication for people with dementia: Time for action (Banerjee 2009)

This guidance emerged from partnership working between a number of small groups and organisations including Skills for Care, over the concern about the negative impact inappropriate prescribing of anti–psychotic medication can have on people living with dementia.

The National Dementia Strategy provided a framework to look at the problem of the overuse of antipsychotic medication and this review offers some practical solutions. The report’s recommendations included a call for more research into the effectiveness and cost of non pharmacological methods of treating behavioural problems in dementia and along a curriculum for the development of appropriate skills in care staff.

Nothing ventured, nothing gained: risk guidance for dementia (Manthorpe & Morirty 2010)

Appendix 1


This policy outlined the issues about risk for people living with dementia and those supporting them. This guidance made explicit the issues at stake. It presented a framework for managing risk in a positive and constructive way by enabling and supporting people with dementia and their carers.

Common Core Principles for supporting people with dementia – a guide to training the social and health workforce (Skills for Care, Skills for Health, DH 2011)

These principles support the implementation of the National Dementia Strategy and the development of the workforce. The principles are intended to be a framework that is embedded in practice and adapted to the specific needs of each setting. They have been mapped to generic national occupational standards and agreed units of learning available through the Qualifications and Credit Framework.

The common core principles for supporting people with dementia are:

1. Know the early signs of dementia;2. Early diagnosis of dementia helps people receive information, support and treatment at the earliest possible stage; 3. Communicate sensitively to support meaningful interaction;4. Promote independence and encourage activity;5. Recognise the signs of distress resulting from confusion and respond by diffusing a person’s anxiety and supporting their understanding of the events they experience;6. Family members and other carers are valued, respected and supported just like those they care for and are helped to gain access to dementia care advice;7. Managers need to take responsibility to ensure members of their team are trained and well supported to meet the needs of people with dementia;8. Work as part of a multi-agency team to support the person with dementia.

Prime Minister’s challenge on dementia - Delivering major improvements in dementia care and research by 2015 (Department of Health, March 2012).

This paper explored the challenges and action needed to make a real difference to the lives of people with dementia.Building on the National Dementia Strategy, exploring how the UK can be a world leader in dementia care and research. The report focus’s on three key areas: • Driving improvements in health and care• Creating dementia friendly communities that understand how to help• Better research

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Joint Publication: Dementia - Supporting people with dementia and their carers in health and social care (NICE/SCIE Nov 2006, amended March 2011)

This publication offered guidance to health and social care staff to identify, treat and care for people living with dementia and support carers within primary and secondary health care and social care.

• The guidance recommended that when developing educational programmes for different health and social care staff, trainers should consider the following elements, combined according to the needs of the staff being trained (if staff care for people with learning disabilities, the training package should be adjusted accordingly).

• Early signs and symptoms suggestive of dementia and its major subtypes. The natural history of the different types of dementia, the main signs and symptoms, the progression and prognosis, and the consequences for the person with dementia and his or her carers, family and social network.

• The assessment and pharmacological treatment of dementia including the administration of medication and monitoring of side effects. Applying the principles of person-centred care when working with people with dementia and their carers; particular attention should be paid to respect, dignity, learning about each person’s life story, individualising activities, being sensitive to individuals’ religious beliefs and spiritual and cultural identity, and understanding behaviour that challenges as a communication of unmet need.

• The importance of and use of communication skills for working with people with dementia and their carers; particular attention should be paid to pacing of communication, non-verbal communication and the use of language that is non- discriminatory, positive, and tailored to an individual’s ability.

The guidance also highlighted the issue of managing risks which include – • Lack of activities;• Inadequate staff attention;• Poor communication between the person with dementia and the staff;• Conflicts between staff and carers.

Qualifications and Credit Framework (QCF) – Health and Social Care Dementia Units (Skills for Care 2010)

The QCF is a new work based learning tool that recognises skill development. It does so by awarding credit for units (small steps of learning) enabling learners to gain qualifications at their own pace along flexible routes. The QCF aims to provide for a simple yet flexible structure that allows for the maintenance and continuing development of a qualifications system that is inclusive, responsive, accessible and non-bureaucratic.It was developed in partnership with the Alzheimer’s Society and other experts to reflect current best practice in this area.

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QCF Level 2 Summary:

Dementia AwarenessThe learner will - • Understand what dementia is;• Understand key features of the theoretical models of dementia; • Know the most common types of dementia and their causes;• Understand factors relating to an individual’s experience of dementia.

The person centred approach to the care and support of individuals with dementiaThe learner will -• Understand approaches that enable individuals with dementia to experience wellbeing;• Understand the role of carers in the care and support of individuals with dementia;• Understand the roles of others in the support of individuals with dementia.

Understand the factors that can influence communication and interaction with individuals with dementiaThe learner will - • Understand the factors that can influence communication and interaction with individuals with dementia;• Understand how a person centred approach may be used to encourage positive communication with individuals with dementia;• Understand the factors which can affect interactions with individuals with dementia.

Understand equality, diversity and inclusion in dementia careThe learner will –• Understand and appreciate the importance of diversity of individuals with dementia; • Understand the importance of person centred approaches in the care and support of • individuals with dementia;• Understand ways of working with a range of individuals who have dementia to ensure diverse needs are met.

Delivering Dignity: securing dignity in care for older people in hospitals and care homes. A report for consultation.

(Commission on Dignity in Care for Older People, 2012)

Although the target population for this report is older people it impacts and includes older people with dementia cared for in hospitals and care Homes. It makes 48 recommendations and how they could be implemented. The report is currently open for consultation and its aim is to change attitudes and deliver dignified care. The final report is expected in June 2012.

Dementia: A Public Health Priority (Alzheimer’s Disease International and World Health Organisation, 2012)


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Below is a quote from Jeremy Hughes, Chief Executive of the Alzheimer’s Society made soon after David Cameron PM pledged for research into dementia and the World Health Organisation (WHO) announced that dementia was to become a new international public health priority:

“ …for the first time a British Prime Minister made a personal commitment to drive forward change to transform the lives of 800,000 people with dementia in the UK. This is enormous progress, but it is the beginning of the road. We must now focus our efforts on translating these commitments into better diagnosis and support, increased understanding and advancements in research. Today the World Health Organisation is calling for the global fight against dementia to begin. World leaders everywhere must take steps to conquer the enormous challenge of dementia. If we take action now, we can transform millions of lives.”

(Dementia must become a world health priority, says World Health Organization)

The number of people living with dementia world wide is estimated at 35.6 million. This number is expected to double by 2030 and triple by 2050.

This new international guidance alerts countries to the fact that dementia poses a threat to global public health. It recognises that there is a lack of awareness in understanding dementia in many countries. The report promotes dementia as a public health and social care priority worldwide.

The report raises concerns about training for staff working in dementia care:

“ There is growing evidence that, even among those working in specialist dementia services, the proportion of staff receiving dementia care training is low, for example, in the United Kingdom around one third of care homes with dedicated dementia provision report having no specific dementia training for staff and 52% of nursing staff in hospitals have not received any work-based professional development or learning opportunities.”

(Alzheimers Disease International and WHO 2012, page 60)


The report discusses the workforce and particularly highlights challenges for the migrant workforce such as language, cultural differences and education/qualifications.

The report also recommends that:

“In many cases, difficult behaviour can be safely managed by use of psychosocial interventions or a person-centred care approach. Staff should receive training and guidance in delivering psychosocial interventions. Antipsychotics should be considered as an option only in cases of imminent risk of harm to self and other. If these drugs must be used, they should be prescribed in low doses over short periods and maintained only if benefits are apparent. Discontinuation should be attempted regularly.” (Page 64)

Dementia Friendly environments/Liverpool’s Year of Dementia 2013

The project seeks to raise the aspirations of people with dementia and their carers in the city (Dementia and Society 2012). The first project is national: Dementia Engagement and Empowerment Project (DEEP) and is exploring how people with dementia are collectively engaged and what they would like to do in the future. The second project is a local one entitled “Dementia without walls” which aims to identify the factors that determine whether York can become a dementia-friendly city. The project seeks to raise the aspirations of people with dementia and their carers in the city (www.jrf.org.uk).

Liverpool has announced that it intends to have a year focused on dementia in 2013. The details of this are not yet widely known but perhaps it is reasonable to conclude that the year will draw on learning from research such as that commissioned by the JRF about dementia friendly environments and how people living with dementia can play a central role in shaping these individually and collectively. the House of Memories to describe their focus and activities

House of Memories is taking place at a time when locally, nationally and internationally there is considerable concern being expressed about the experience of living with dementia and the impacts of this disease on society. House of Memories is a practical manifestation of living out in the pubic arena the principles embodied in these public policies. The evaluation report will comment on how this guidance is relevant to the experience of participating on the House of Memories programme.

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“I’ve learnt about the different forms dementia takes and am hopefully

more adaptable to their needs.”

Work

See charts below for participants’ place of work

Appendix 2

Local Authority 22.4%NHS 6.1%Private 57.0%Voluntary 6.1%Non Health/Social Care work setting 6.7%Non paid/informal carer 1.8%

Hospital Setting 0.5%Nursing Home 13.0%Residential Care 23.4%Sheltered Accommodation 11.5%Community 30.7%Day Care 6.8%Museums 14.1%


Is your work in any of the following categories?

Where do you work?

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Appendix 3Fieldnotes - Evaluators

This is not meant to be a comprehensive description of the House of Memories training but rather an insight or flavour as to what happened and the experience of being a participant on the training. These observations have been put together from field notes recorded by each of the evaluators.

In blue are thoughts that occurred to the evaluators during the day -

Morning

The training took place in a large, airy room in the Museum of Liverpool overlooking the Mersey Estuary. On arrival there was a relaxed atmosphere tinged with a sense of anticipation. Participants were enjoying drinks, looking out of the huge windows and completing questionnaires. There were also a couple of tables with some museum memorabilia such as a singer hand sewing machine, a radiogram and a dolly tub. 1940s music was being played. Posters were scattered about the room of painted self portraits from a previous museum reminiscence project.

Could there have been more memorabilia and artifacts out in the room to make a bigger impression?

A museum director gave an enthusiastic welcome to everyone. She described the role and work of the museum and emphasised the important role that everyone attending the training plays in the care and quality of life of people living with dementia.

A valuing and appreciative tone was set from the start.

AFTA Thought were introduced and started with a short, humourous piece about being nervous about being in a museum. A quick poll was taken of where everyone worked: domiciliary care, residential care, museum staff, social services, Alzheimers Society, Local Government – learning and development, West Cheshire College…

And then we were all on the move to have a look round one of the museum galleries. It was an opportunity to have a look at exhibits, talk and share what we could see with other participants and talk to museum staff informally.


Gallery – The Wondrous Place

“ Liverpool is at the present moment the centre of consciousness of the human universe.”

Alan Ginsberg, 1965

I felt very orientated and immersed in the museum.

There were conversations about the Beatles, football…Memories were rekindled and shared Energy levels were high and people were cracking jokes, laughing and really engaging with the exhibits. A woman spoke to me about regularly coming to the museum with both her grandchildren and residents from her residential home. She said she was a real fan of the museum. Some one else wondered: “Is it just plugging the museum?” Many remarked – “have you seen this?” “Look at that!”

The day was underway.

We returned to the training room. The Director continued her presentation for a short time. Museum stats were shared –1 million visitors to the Museum of Liverpool since it opened its doors in July 2011. Previous museum projects were described – Generations Apart and Gateways to Active Living. She talked about how the museum could help to support the work of those working in care roles with people living with dementia – “share resources to make a difference”.

AFTA Thought drama and facilitation of the remainder of the morning. They covered in a lively and thought provoking and interactive way – Dementia context – 750, 000 people living in the UK with dementia. 4000 people living with dementia in Liverpool. Costs for the UK of £17billion to provide care and services.Actor rattled though the Dementia strategy

A good dramatic device that kept everyone’s attention.

We were told that although the day is about professional learning it may also touch on our personal experiences of knowing people with dementia.

I’m OK, not OK – many people living with dementia are OK, others are not.

This engaged us all at an emotional level – the trouble is…

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Definitions – Dementia – Alzheimers, Vascular and Lewy Body’s Dementia.Loss of function, frontal lobe damage – loss of ability to plan, Hippocampus – loss of short term memory – “it is as though the save button on the computer isn’t working”. Participants were asked – Do you recognize these signs and symptoms?

Some very thought provoking key questions asked through out the morning.

A real sense of engagement from the audience – many questions and observations. A real flow of conversation and sense making.

Mild/moderate/severe dementiaAngie sketch – “I was losing me”.

Explored bereavement – some sadness in the audience

Barbara sketch – working in a residential home, role of the professionalsTommy sketch – links made between the role of the museum and dementia experience and care.

Could families and informal carers come and benefit from this training

In the break I spoke with one of the AFTA Thought actors who told me that at the weekends she works in a a care setting with people with dementia and how working on the House of Memories project has influenced her behavior - “I take more time to communicate now and use touch more.”

We were told that 5 people die every day because of the over use of psychotic medication.

How should this training be validated/accredited?

Carer sketch – relative invited to join reminiscence/memory activity group with her husband to have some quality time together.

We were asked “So what do we know when we have met one person with dementia?”The participants responded – We’ve met one person with dementia.”

Final sketch – Dementia – QCF training – museum resources

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Afternoon

Participants in two large groups were invited to shout out their reflections of the morning’s experiences.

This was a good energy raiser after lunch.

Memory Tour – guided tour by museum staff…Blacklers rocking horse, overhead railway, neighbourhoods, hats (!)We were prompted to think about the experience from the perspective of someone with dementia.

Memory boxesWe were encouraged to get familiar with the box contents and talk about them with each other.

More instructions for the group activity, background information and prompts for some staff, some of the younger staff, so that they have more knowledge to help prompt conversations

The suitcase of memories was very engaging.

Except a couple of participants remarked that the day had been a “waste of time’ as they spend most of their time washing, dressing and feeding. They didn’t seem receptive to the possibilities for conversation that these items presented in their busy schedule.

Museum staff shared the training principles of care, communication and confidence – the three Cs. Final Questionnaire circulated and completed.

Tool kit given out last. Many now leaving.

Could this be done differently? Very little discussion about the tool kit.

End of the day.


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Appendix 4 Themes from analysis of data; questionnaires (pre and post), Focus Groups and Interviews.

Pre questionnaire - Themes

What are you most looking forward to about today’s training?

Theme• Learning about dementia• Learning how dementia effects people• Learning new techniques and approaches that will help people living with dementia• To increase knowledge and understanding (unspecific)• To learn something new

Lesser themes• Sharing ideas with others• To see AFTA Thought• Looking round the museum

What can museums offer to those working with dementia?

Themes• Trigger memories• Holds memories of past times • A safe and inclusive environment for people living with dementia and their carers• Learning about the past• Don’t Know

Lesser Themes• New ideas• Training in reminiscence• Knowledge • Stimulus/inspiration • Happiness

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Post Questionnaire themes

What was the one thing that has been most significant about your learning today?

Themes• Understanding dementia and how to help person with dementia (and their families)

Lesser themes• Networking • New ideas• AFTA Thought• Value of reminiscence• Engaging delivery• The museum resources • Excellent day • The museum as a place and destination for people living with dementia to visit

What did you most enjoy about today’s training?

Themes• AFTA Thought• Tour/Memory walk of Museum• Memory Box• Everything • Interactive sessions

Lesser themes • Being in the museum• Delivery of the day• Understanding dementia and how to help person with dementia

What will you expect to do differently after today in your work place?

Themes• Interact more ably with people living with dementia• Putting into practice what I have learnt today (not always specific as to what this is)

Lesser themes• Share knowledge with other staff and/or recommend that other staff come onto training


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What ways will House of Memories help you to deliver person centred care?

Themes• Increased understanding• Reminiscence and memory work

Lesser themes• To improve quality of life for people with dementia and/enable people to be happier/enjoy life more

Would this training help you to talk to family members?

Themes• Intend to involve families more in care

Lesser themes• Increase confidence to talk to relatives• House of Memories could promote partnership working between families and paid carers• Feel more able to engage with personal family members living with dementia • Helpful for families to have a greater understanding of dementia

What can museums offer to those working in care settings with people living with dementia?

Themes• Trigger memories

Lesser themes• The museum as a safe and dementia friendly place to visit • Support care settings – With understanding, inspiration, experience and knowledge, constructive communication • Learning opportunities for care staff about the past

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Focus Group Themes

Personal Element• Desire to make changes /interact with relatives differently • Regrets about not having this knowledge previously• Emotionally powerful • Distressing

Seeing the Museum differently• Realising the importance and value of the objects and memories for people (museum perspective)• Museum staff - would be more likely to interact with staff now when visiting the museum

Dementia Friendly Museum • Recommendations - • Review some of the aspirations for the museum such as coffee carts, small performances, more informal sitting areas to exchange views, use education space for activities for people and their carers living with dementia, intergenerational activities• Clearer signage• Blinds in places to prevent reflection from the glass• Times when few announcements – can be unsettling• Trained volunteers• A designated space• Open at different times such as evening and during the night

Greater understanding of dementia• Look at people in a different way• More able to put self in different situations• Will try to be more understanding than before• More confident to try different things – trial and error

Networking• Opportunity for networking with others working in the same field

Participants• Excellent training for front line staff and for social work students • Feeling of being valued by attending the training • To encourage more managers to attend training


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Implementation of House of Memories • Museum perspective –• To ensure there is capacity to meet the demand i.e. for increased activity for the museum delivery of memory tours, memory box sessions • Care workers perspective - • Care setting has set up “memory corner”• Planning to bring residents to the museum • Refresher courses?• Tool kit was interesting but haven’t read it all yet

Families/Informal carers• Training should be accessible to family members• Informal and family carers to attend the training along side paid carers – to help partnerships and understanding to grow and develop

Medication • A variety of views were expressed - • Sometimes a need for medication• Give people time instead of a pill• Perhaps medication issues could be discussed in more detail in the training?• The worry of reducing medication is what would be put in its place: activities are more person centred and more costly• It is very sad to see some of the residents on medication that makes them more confused and sleepy

Training addressed significant issues• QCF elements covered such as recognising signs of distress and the role of family members• Changed essay for QCF assessment following the training

Delivery of the training • Power of the actors• Able to effectively communicate about the experience of dementia• How to approach someone with dementia• Museum perspective – • Concerned about museum not appearing to be dementia experts• Care workers perspective – • The training was better than expected (thought it might be a lecture)• Enjoyed personal experience of walking round the museum, interacting with others – insight into how the experience might be for clients • The training inspired us – “It wasn’t boring at all!”• A certificate would be nice!

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Benefits for museum team• Delivery team – benefited from sharing skills and working together as a team• Developed effective relationships between people with different grades and roles and with senior staff• Cooperation between different departments in the museum

Aspirations for the Future• For the museum to be involved in a national campaign• To be part of the Year of Dementia in Liverpool – 2013• Sense that an impact has been made but more can be done and is needed• To be clear about the museum’s message and role• The museum to act as a hub for the general public to raise awareness of dementia • Build on what has been achieved and not let the work done go to waste. • Is House of Memories a model that could be applied to other issues addressed by the museum?• Closer partnerships between the museum and “dementia experts”• Think long term and strategically • Sharing good practice in care Homes and embedding this in organisational priorities for care

Themes from interviews• Personal impact of the training• Interviewees had personal experience of knowing caring for older people and people living with dementia• House of Memories resonated at a personal and professional level• Emotional/from the heart impact of training: touched us all to the core

Partnerships• For AFTA Thought been a very positive experience working with a cultural partner and appreciating their role in health and social care and wellbeing. • Work still to do developing partners with public sector and others

Exceeded expectations• Initial concerns included: concern that the museum did not to appear to be dementia experts? Would the training be pitched at the right level? Would anyone come? • The training seems to - • Have been entry level – expected it to be added value• The demand for the training has exceeded expectations• Have been greatly valued by participants and strategists

New initiative building on previous experience• Based on previous experience i.e. NML elder programme• AFTA Thought safeguarding and other health training programmes • Entry more formally for museums into world of health and social care – therefore learning about the needs of this new world• For AFTA Thought a different audience than used to


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Aims of House of Memories• Train the trainers• Raise awareness of dementia• Introduce approach based on conversation and memory stimuli• More potential • Would like to know more about training standards – What is the Gold standard? What else could be included?

Participants• Front line care staff• Social work students

Changed view of museum• Widened knowledge and understanding or work of museum with different groups and as a partner to collaborate with • House of Memories reflects values of museum and its social justice agenda. It also challenges how the museum delivers on this agenda.

Changed view of dementia• Far greater appreciation of diversity of need

Aspirations for where next• This is the beginning• Need a strategic group to oversee dementia friendly Liverpool – and key role of museum in that• Target different groups – health clinicians• House of Memories champions in neighbourhoods• Delivery of day – more fluidity between the two parts of the day• Build on interactive learning style• Help to tailor experience to some targeted groups – ethnic groups, • Open Museum at different times to engage with people with dementia and their carers – evening/night time• Museum could be a point of referral/information – a health and information stand • Hob and spoke model – museum as place for people to come to and for museum to go out into communities

Internal benefits for museum• Impact of community team working on a shared project – team building and skill sharing• Interaction and cooperation between different departments in the museum • Contact between senior and junior staff in the museum which has been valuable

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Pre- Questionnaire (start of the day)

National Museums LiverpoolHouse of Memories: Evaluation 1

1. How would you describe your gender? Male Female Transgender

2. What was your age at your last birthday?

3. How would you define your ethnic origin? White - British White - Irish White – Other White Background Mixed – White and Black Caribbean Mixed – White and Black African Mixed – White and Asian Mixed – Any Other Mixed Background Asian or Asian British – Indian Asian or Asian British - Pakistani Asian or Asian British - Bangladeshi Asian or Asian British – Other Asian Background Black or Black British - Caribbean Black or Black British – African Black or Black British – Other Black Background Chinese Don’t know Refused

Other (please specify)

4. Have you visited a museum during the past 12 months? Yes No

If you have answered ‘no’ to this question, continue to question 7.


Appendix 5

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5. Which museum/s have you visited during the past 12 months? Museum of Liverpool World Museum Walker Art Gallery Merseyside Maritime Museum International Slavery Museum Lady Lever Art Gallery Sudley House


6. Was your museum visit carried out - In your own time For paid work For academic study As part of voluntary work Don’t know


7. Is your work in any of the following categories? Local Authority NHS Private Voluntary Non Health / Social Care work setting Non paid / Informal Carer


8. Where do you work? Hospital Setting Nursing Home Residential Care Sheltered Accommodation Community Day Care Museums


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9. What is your experience of dementia at work?

10. What is your experience of dementia in your personal life?

11. What are you most looking forward to about today’s training?

12. What can museums offer to those working in care settings with people living with dementia?

13. Have you experience of memory activities with people living with dementia? Yes No

Any comments?

Below are a number of statements. Tick the box that most fits your response.

14. Memory activities can improve a person’s life living with dementia. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?


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15. Memory activities can help reduce feelings of distress, humiliation or fear for people living with dementia.

Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?

16. Memory activities can increase self-esteem and confidence for people with dementia.


Any comments?

17. Memory activities can help you to build more effective relationships with people living with dementia.


Any comments?

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18. I have the necessary knowledge to deliver memory activities in my care setting. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?

19. I have access to appropriate resources to deliver memory activities in my care setting.


Any comments?

20. I have the necessary skills to deliver memory activities in my care setting. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?


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Appendix 6Post- Questionnaire (end of the day)

National Museums LiverpoolHouse of Memories: Evaluation 2

1. What is the one thing that has been most significant about your learning today?

2. What did you most enjoy about today’s training?

3. What will you expect to do differently after today in your work place?

4. In what ways will House of Memories help you to deliver person- centred care for people living with dementia?

5. Would this training experience help you to talk to family members about individual’s life histories?


Any comments?

Could you please answer the questions again from this morning’s questionnaire:

6. What can museums offer to those working in care settings with people living with dementia?


Below are a number of statements. Tick the box that most fits your response.

7. Memory activities can improve a person’s life living with dementia. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?

8. Memory activities can help reduce feelings of distress, humiliation or fear for people living with dementia.


Any comments?

9. Memory activities can increase self-esteem and confidence for people with dementia.


Any comments?

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10. Memory activities can help you to build more effective relationships with people living with dementia.


Any comments?

11. I have the necessary knowledge to deliver memory activities in my care setting. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?

12. I have the necessary skills to deliver memory activities in my care setting. Strongly disagree Disagree Neutral Agree Strongly agree

Any comments?

13. I have access to appropriate resources to deliver memory activities in my care setting.


Any comments?

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Focus Group Questions

Focus Group Questions House of Memories Evaluation

Health and Social Care Staff

• Introductory Question – What did you enjoy about the House of Memories training day? • How did you hear about the training? • What did you find most useful about the House of Memories training day? • Was the training what you expected? • How did it change your understanding of museums?• How did it change your understanding of dementia? • Has it changed (influenced) any of your attitudes? For example the role of medication in the treatment/management of people living with dementia? Or the role of memory/life history work?

• What have you done differently since the House of Memories training day? • Have you made any plans to work differently following the House of Memories training day?

• What further support or changes is needed from (a) museum (b) your organization to implement learning/change from House of Memories day?

• Is the museum dementia friendly? In what ways? • How can the museum be more dementia friendly?

• Qualifications and Credit framework units – Has House of Memories helped you to achieve these units/learning including: • Knowing the early signs of dementia • The benefits of early diagnosis of dementia • Communicating sensitively to support meaningful interaction • Promoting independence and encouraging activity • Recognizing the signs of distress resulting from confusion and responding by diffusing a person’s anxiety and supporting their understanding of the events they experience • Valuing family members and recognizing the importance of respecting and supporting them and helping them to access dementia care advice • (Engaging family members in the reminiscence work developing in your setting) ?? • Managers – does it help you to meet your responsibilities to ensure members of your team are trained and supported to meet the needs of people with dementia • Working as part of a multi disciplinary team to support the person with dementia


Appendix 7

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Museum Staff • What did you find most useful about the House of Memories training day? • How did it change your understanding of museums?• How did it change your understanding of dementia? • Has it changed (influenced) any of your attitudes? For example the role of medication in the treatment/management of people living with dementia? Or the role of memory/ life history work with people living with dementia?

• Were there any aspects of the House of Memories training day that were surprising? Distressing?

• Did you feel supported on the day? Or afterwards? • Was the training appropriate for museum staff? Would you have like more/less of any aspect of the day?

• What have you done differently since the House of Memories training day? • Have you made any plans to work differently following the House of Memories training day? • What further support or changes is needed from the museum to continue with House of Memories work? • How is the museum being dementia friendly? How can it become more dementia friendly?

Additional Questions for Museum staff delivering the training –

• Was any particular aspect of the training more challenging than the rest to deliver? • How would you like to develop the training/House of Memories in the future

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Interview Questions House of Memories Evaluation

• How did you get involved in House of Memories?

• What were the aims of the House of Memories?• Were they met?

• Did House of Memories meet your expectations?• What was the best thing/most useful/most effective about the training? • Did anything not happen that you would have wanted to have happened?

• Did it change your understanding of museums?• Did it change your understanding of dementia?

• Has House of Memories had a personal impact on you?

• Now looking back would you have done anything differently?

• What did you think worked most well about the training?

• Is the museum dementia friendly? • How could the museum become more dementia friendly?

• What next? What would you like to see happen in the future?

• What further support or changes are needed from the museum/other organisations to develop House of Memories further?


Appendix 8

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Commission for Dignity in Care for Older People (2012) Delivering Dignity: securing dignity in care for older people in hospitals and care homes. A report for consultation. London: Local Government Association, NHS Confederation, Age UK.

Culture: Unlimited (2008) Museums of the Mind. Available at: www.cultureunlimited.org/museums-of-the-mind.php (Accessed 11th April 2012).

Dementia and Society (2012) Available at:www.jrf.org.uk/work/workarea/dementia-and-society (Accessed: April 12th 2012).

Dementia must become a world health priority, says World Health Organisation. Available at: www.alzheimers.org.uk/site/scripts/news_article.php?newsID=1179 (Accessed: April 13th 2012.)

Denzin, N (1997) Interpretive Ethnography: Ethnographic Practices for the 21st Century. Thousand Oaks, CA: Sage.

Department of Culture Media and Sport (2010/11) Annual performance indicators. Available at: www.culture.gov.uk/what_we_do/research_and_statistics/8609.aspx (Accessed: April 11th 2012).

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Department for Health (2009) Living well with Dementia: A National Dementia Strategy. London: DH.

Etherington, K (2004) Becoming a reflexive researcher: using ourselves in research. London: Jessica Kingsley Publishers.Fetterman, D (1998) Ethnography: Step by step. 2nd Ed. London: Sage.

Fullan, M (1991) The New Meaning of Educational Change, Cassell Educational Ltd, London.

Glazer, B G & Strauss, A L (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Publishing Company.

Guardian Public Sector Award (2010) Available at: http://blog.liverpoolmuseums.org.uk/GuardianPublicServicesAward.aspx (Accessed: April 13th 2012).

Health is Wealth Commission (2011) Health is Wealth. Liverpool: health is Wealth Commission.

Kitwood, T & Bredin, K (1992) Towards a Theory of Dementia Care: Personhood and Wellbeing. Ageing and Society. 12 (3), pp. 269-287.

Manthorpe J & Moriarty J (2010) Nothing ventured, nothing gained: risk guidance for people with dementia. London: DH.

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National Institute for Clinical Excellence/Social Care Institute for Excellence (Nov 2006, amended March 2011) Joint Publication: Dementia - Supporting people with dementia and their carers in health and social care. London: NICE/SCIE.

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NML (2012) Changing Lives. Liverpool: NML.

Skills for Care (2010) Qualifications and Credit framework – Health and social Care Dementia Units.

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“I now have the knowledge to make more people aware

of what dementia is and how they can help. ”


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