Can Music for Life enhance the well-being of people with dementia and develop the

Transcription

1 1. Title page Name: Padraic Thomas Garrett UB Number: Title/ research question: Can Music for Life enhance the well-being of people with dementia and develop the person-centred care skills of care workers? Dissertation submitted in part fulfilment of the requirements for the degree of Master by Advanced Study in Dementia Studies conferred by the University of Bradford Academic Year: 2009 Actual Word Count: 17,967 This dissertation is the sole work of the author.

2 Signed: Date: 4 th September Acknowledgements I am grateful for the opportunity to produce this dissertation. I would like to thank the following people: Isam, for always being there and giving me continuous encouragement. Jewish Care, for giving me the opportunity and flexibility to undertake this MSc course. My Jewish Care colleagues, for understanding the pressures of study and believing in my ability. Linda Rose and the Music for Life team, for this creative project. The people with dementia who have inspired me in Music for Life Projects. Care workers, for their example of hard work and commitment. Dr Geraldine Boyle, my academic supervisor, for advice, very useful feedback and encouragement throughout the year.

3 3. Statement of anonymity and confidentiality Jewish Care and Music for Life (MFL) have given their permissions to be identified in this dissertation. Linda Rose, the founder of MFL, has given her permission to be identified in the dissertation. I have anonymised all other persons and places mentioned in this dissertation. This research evaluation will be carried out with the permissions of Jewish Care and the owners of MFL. All information will be recorded and stored in accordance with the requirements of the Data Protection Act (1998). Reports, notes and documentation for the research will not name the residential or nursing home in which the research is carried out. Individuals taking part in the evaluation will be given pseudonyms to protect their confidentiality. All transcripts, field notes and tape recorded data will be coded to ensure the anonymity of the participants. All electronically stored files will be password protected. The data will be archived in a locked place for six years in accordance with international standards for data collection and storage. Signed: Date: September 4 th 2009

4 Padraic Garrett 4. Table of contents 1. Title page 1 2. Acknowledgements 2 3. Statement of anonymity and confidentiality 3 4. Table of contents 4 5. Abstract 6 6. Background and purpose Introduction 9 6.2The background of Music for Life Literature review (i) Summary of the literature search strategy (ii) Research and literature on music therapy and music interventions (iii) Developing the person centred care practice and skills of care workers (iv) Summary of the findings Evaluation question, aims and objectives The plan of work Introduction The methodological approach (i) Quantitative approaches (ii) Qualitative approaches (iii) Choice of methodologies The role of the researcher The methods (i) People with dementia (ii) Care workers 50

5 7.4 (iii) Musicians, MFL co-ordinator and trainer Verification Sampling and recruitment Consent Data Analysis Project Management User participation Dissemination of the findings Ethical implications The potential and limitations of this research evaluation of Music for Life References Bibliography Appendices 103 Appendix 1: Music for Life project objectives 103 Appendix 2: Clinical empirical studies on music therapy ( ) 106 Appendix 3: Work plan 109 Appendix 4: Residents group interview 110 Appendix 5: Residents individual interview 114 Appendix 6: Participant s consent form 117 Appendix 7: Care workers group interviews 119 Appendix 8: Musicians and MFL coordinator group interviews 125 Appendix 9: Trainer s interview 130 Appendix 10 : Participant information sheet residents 134 Appendix 11: Participant information sheet - care workers 137

6 5. Abstract Music for Life (MFL) is an interactive music improvisation project for people with dementia. This proposal outlines an in-depth research evaluation of this creative arts project. Existing literature on MFL describes it as a vehicle for recognising the personhood of people with dementia. MFL claims to embrace and develop person-centred care by working in ways that focus on building communication and relationships. It has been promoted as a music project that endeavours to use creative approaches to identify and contribute to meeting the psychological, social and cognitive needs of people with dementia. Furthermore, it claims to enable care workers to develop positive relationships with people with dementia and enhance their care skills.

7 The research outlined in the proposal identifies the benefits of music interventions with people with dementia: enhancing communication and social skills, supporting cognitive skills including memory, and providing an effective alternative to medication for dealing with issues, such as irritability, withdrawal, depression, anxiety, fear, paranoia and insomnia. The research outlined highlights the importance of music as an activity that people with dementia can use even into the late stages of the syndrome. The literature reviewed in the proposal highlights that developing a workforce with the abilities to reflect on their work is vital for the development of person-centred care. The research question asks: Can MFL enhance the well-being of people with dementia and develop the personcentred care skills of care workers? This evaluation aims: To explore the effectiveness of participation in MFL in promoting the psychological, social and cognitive well-being of people with dementia; 2. To investigate whether involvement in MFL improves care workers skills in person-centred care. The proposed study is innovative: in addition to establishing if this music intervention is effective, it will gain information about the process of creating music and investigate how or if it stimulates interaction. It seeks to provide evidence and examples of the kind of

8 interactions occurring in MFL and how they impact on psychological, social and cognitive well-being. The proposal sets out how the study will provide opportunities for people with dementia, with limited communicative and cognitive abilities, to express their views and experiences of this music intervention. The proposal outlines how care workers will be included in the study. It describes how they will be offered opportunities to voice their views about MFL and to explore their work and relationships with people with dementia. The methodology proposed for this in-depth study is qualitative. It will involve participant observation, individual interviews and group interviews. The researcher will observe and participate in MFL sessions and will undertake conversational interviews with people with dementia, care workers, musicians and trainers. Observations of care and documentary analysis of care plans will provide additional data. Process consent is proposed as a vital way of monitoring and facilitating the ongoing consent of people with dementia who participate in the study. Keywords: Dementia, music, well-being, person-centred care.

9 6. The background and purpose 6.1 Introduction Below I give an account of the background of Music for Life (MFL). I describe its foundations, its connections with Jewish Care and my involvement with it. I outline its aims and describe its foundations in current literature on person-centred dementia care. I go on to review literature and research relating to two principle aspects of the project: music as a therapeutic intervention and developing care practice and skills for care workers. I discuss the relevance of this literature and research to MFL. I identify gaps that exist in the evidence-base in relation to this project. I state the evaluation question

10 and I identify the aims and objectives of the research proposal. 6.2 The background of Music for Life Rose and Schlingensiepen (2001) describe MFL as an interactive project. It was developed by Linda Rose (Project consultant) in close association with Jewish Care from the early 1990s. Jewish Care is a voluntary organisation that provides a range of social services including residential/nursing homes and day centres. MFL is currently owned and managed by a concert hall and Linda Rose is employed as a consultant by its learning and development department. Jewish Care runs three MFL projects per year. MFL involves professional musicians using music improvisation with a group of people with dementia and care workers. Musicians and care staff work together as a team and

11 through voice, a variety of instruments or simply their own bodies, participants are encouraged to play with music. A project takes place over eight weeks and is based around a one-hour session each week. Each project involves eight people with dementia, five care workers, three musicians, the MFL co-ordinator and a practice development worker. The practice development worker is somebody who has ongoing links with the care team and has responsibility for their training and development in dementia care. For the purpose of this proposal, the practice development worker will be referred to as the trainer. My involvement with MFL has been in the trainer role over the past five years. I manage a team of three trainers in Jewish Care. We form the Dementia Care Development Team and we provide education and support on dementia throughout Jewish Care. MFL developed at a time when there was a shift in thinking on dementia care. The social, cognitive and psychological well-being of people with dementia was beginning to be highlighted. An awareness of the importance of addressing these needs has grown over the past 20 years. Kitwood (1997) described this approach as person-centred and Cheston and Bender (1999) describe it as person-focused. Brooker (2003) explains that person-centred care has it origins in the work of Carl Rogers and client-centred psychotherapy. Kitwood (1997) highlighted that he drew on psychotherapeutic work with an emphasis on authentic contact and communication. For the purpose of this proposal, I draw on Kitwood's definition of person-centred care as ways of working that emphasise communication and relationships (Kitwood 1997 and Brooker 2003). Below, I

12 elaborate on the background and importance of this approach to understanding and caring for people with dementia. It is within this framework that MFL can be contextualised. Person-centred care is reflected and recommended in national care directives. Kitwood (1997) cites Living Well into Old Age, published by the King's Fund (1986), to be a major landmark in Britain for opening up psychological approaches that recognise the personhood of men and women with dementia. This year the Department of Health (2009) launched Living well with dementia: A national strategy in which it outlines a comprehensive range of initiatives to support people with dementia from early stages to end of life. The person-centred philosophy of care that underpins the national strategy was set out in The National Service Framework for Older People (Department of Health 2001). It outlines national standards and service models across older people's health and social care services. The document's opening chapter refers to the complex interaction of physical, psychological and social care factors in frail, older adults and it devotes a section to person-centred care. Kitwood and Bredin (1992), giving advice to care workers, emphasised that the individual with dementia is still a person and needs to be treated as one. Kitwood (1997) describes people with dementia to have 5 main psychological and emotional needs. Below, I list these needs and I outline how MFL claims to meet them (Rose and Schlingensiepen 2001 and Rose et al 2008). Inclusion: MFL aims to provide an experience of belonging and feeling part of a group of

13 people who are involved in making music together. Attachment: MFL aims to provide participants with opportunities to form bonds with the group as a whole and with other individuals within the group. Occupation: MFL aims for its participants to have opportunities to use instruments and voice. The creation of music, expression and communication are the outcomes of the occupation. Identity: MFL claims that, within each session, the importance of every individual's unique identity is recognised and valued. It aims to achieve this by recognising each person s unique way of engaging and expressing themselves. Comfort: MFL facilitators aim to ensure that the person feels both emotionally and physically secure in the group. Brooker (2007) develops the concept of person-centred care in terms of four major elements (VIPS): V: A value base that asserts the absolute value of all human lives regardless of age or cognitive ability. I: An individualised approach, recognising uniqueness. P: Understanding the world from the perspective of the service user. S: Providing a social environment that supports psychological needs. MFL reflects these four elements in its Project objectives (Appendix 1). Killick & Allan (2001) claim there has been a commonly held mistaken belief that

14 dementia destroys personhood and they urge us to challenge it. The underpinning principle for involving people with dementia in MFL workshops, according to Rose and Schlingensiepen (2001), is the need to recognise their personhood and try to meet their psychological and social needs. Kitwood (1997) described personhood as a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. A difficulty with this definition could be that it seems to undermine the personhood of individuals who choose more solitary lifestyles. Baldwin and Capstick (2008) point out that it implies we are all continuously dependent upon each other in order to have our personhood bestowed upon us. However, in the context of person centred-care, I would interpret it as emphasising the potential of social interaction and contact for helping each individual to achieve higher levels of well-being. Kitwood (1997) highlighted that it implied recognition, respect and trust. Upholding individuals right to choice is central to person-centred care. MFL offers people with dementia opportunities for creative expression, fun and meaningful interaction with others. People are encouraged and supported to take part. However, their rights to decline participation are also respected. Some people may prefer one-to-one activity or smaller groups. MFL aims to respect and be sensitive to individuals' rights to participate or withdraw from the projects and not to enforce social contact. Not to do so would undermine the individual s well-being and personhood. Person-centred care involves building relationships that nurture the psychological, social and cognitive well-being of people with dementia. It follows that developing workers

15 who can enter into positive relationships with their clients must be seen as a necessity. MFL aims is to help equip staff with insight into the emotional and psychological experiences of people with dementia and to adapt their practice accordingly (Appendix 1). It claims that care staff will benefit through the project by increased observational awareness through detailed observation and evaluation during the course of the project. Each MFL session is followed by a reflective debriefing with musicians and care staff. The trainer facilitates a 30 minutes reflective debriefing with staff while the MFL coordinator debriefs with the musicians, following that, both groups come together for 30 minutes for a final reflective discussion. They discuss how people with dementia have been responding to opportunities for self-expression in the sessions and how they have been supporting them. Brooker (2008) states that psychological skills are part of everyone's role in promoting good mental health and well-being and especially when working with people living in long term care settings. Crisp (1999) advocated that the personhood of someone with dementia can and does survive, provided we are prepared to enter into a partnership with that person in their efforts to express and hold on to their sense of identity. MFL takes its starting point from a similar stance as that expressed by Goldsmith (2002), that the opportunities for communicating depend to a large degree upon the belief of the person without dementia that communication is possible. Communicating and building partnerships with people with dementia requires skill. In MFL projects, care workers have opportunities to observe how musicians use reflective skills when they ponder on how they can use insight, from the session of the day, in future sessions. Throughout the projects, care workers are encouraged to reflect on how

16 their work practices could adapt to incorporate the insights they have gained from the session into everyday life with the participants. Thompson (2000) highlights the importance of this kind of reflective practice, stating that skilled practice can be understood as a successful blend of artistry and science. Few would argue against the model of person centred care outlined above as a way of bringing about well-being in people with dementia. However, it is very important to realise that often, even in care homes where management and staff aspire to personcentred care, higher levels of well-being for people with dementia are still not being achieved. Vass et al (2003a) carried out research in Jewish Care homes, an organisation that aims to implement person-centred care, and found that people with dementia lacked choice, independence and social engagement. They also found power imbalances between staff and residents. Baldwin and Capstick (2007) point out the likelihood is that any real world setting will share indicators of both cultures, that is, task focused and person-centred care. One benefit of this proposed in-depth evaluation of MFL is that it will provide opportunities to explore how people with dementia can express themselves. Importantly, it will also involve care-workers in a process of reflection on how they engage with people with dementia. Baldwin and Capstick (2008) warn that the overwhelming desire to be recognised as part of a new culture can work against the kind of reflection needed in order to bring about modest and sustainable change. This study aims to contribute to the process of reflection in Jewish Care that can contribute towards sustainable change.

17 6.3 Literature review 6.3 (i) Summary of the literature search strategy Electronic searches were carried out on websites using search engines such as Wiley

18 Interscience and Google Scholar. The keywords used initially were dementia, music interventions and therapy. Searches were made for articles written in English between the years 1990 and 2009 and returned 153 results. Further databases and websites searched included the Cochrane Database of Systematic Reviews, Pub Med, Social Care Online and Careinfo.org. Reviews of literature and research were found to have been already carried out by Brotons in 2000, Vink et al in 2003 and Godfrey et al in These helped to identify evidence-based research worthy of investigation. Other manual searches were carried out using a library in my work-place and a reading list for the MSc in Dementia Studies ( ) from the Bradford Dementia Group, Division of Dementia Studies. 6.3 (ii) Research and literature on music therapy and music interventions The research and literature reviewed here, on music therapy, aims to provide an evidence base for the effectiveness of musical activities. Prior to reviewing the research and literature it is important to establish what is meant by therapy in the context of MFL. Rose and Schlingensiepen (2001) state that MFL does not aim to provide music therapy for people with dementia; rather, they claim that there is a therapeutic potential in the work. They describe the project as arts work. Killick and Allan (1999) point out that, in considering the place of the arts in the care of people with dementia, there is an important distinction between therapy and activity. They describe therapy as a planned intervention intended to cure or alleviate a condition and has specific therapeutic aims. Art activities

19 or art work, on the other hand, do not subscribe to that notion of therapy. Activities generally aim to generate a sense of enjoyment, satisfaction, a sense of giving shape to something and a sense of unburdening. These are factors that contribute to the well-being of the person. It is important to understand this distinction between music therapy and musical activities as arts work but, it is also vitally important to be clear, that as an intervention, MFL shares a goal with music therapy to develop what Gergen (1997) described as forms of viable meaning. MFL is a musical intervention that clearly enters the arena of linking music with communication and meaning. Gergen (1997) highlighted that one of the principle differences between psychotherapy and bio-medical therapy is it concentrates on developing forms of viable meaning with the clients, whereas the focus of bio-medical therapy is on cure. MFL shares the aim of music therapy or psychotherapy to the extent that it endeavours to empower participants to express themselves within the sessions. Rose and Schlingensiepen (2001) and Rose et al (2008) have claimed that this kind of shared meaning comes about in MFL projects. Below I summarise evidence-based research on the effects of music interventions covering a range of areas. Where relevant, I point out similarities between these studies and MFL. The reliability and conclusions that can be drawn from them will be commented upon in 6.3 (iv). Christie (1992) carried out research in nursing home settings predominately with people with a diagnosis of probable Alzheimer s disease. It is in this type of setting that MFL

20 carries out the majority of its projects. Music therapy was provided to 21 residents over a ten week period. The music therapy took place in two small groups of 4 people, one large group of 12 people and with one resident on a one-to-one basis. Christie's research concluded that clients had improvements in active participation across the ten weeks in the three groups and in the one-to-one setting. The anecdotal reports from MFL concur with this and client's participation is claimed to increase over the eight weeks of the project. Christie's research concluded that music therapy can contribute to improved quality of life in older people. Groene (1993) compared music therapy with reading sessions in reducing so-called wandering behaviour. Similar to MFL, the music sessions included live music and playing percussion instruments, singing and movement. However, unlike MFL, the sessions were one-on-one. It was found that participants remained in their seats and/or near the sessions for significantly longer than in the reading sessions. One would question the value of finding ways to reduce the incidence of people with dementia walking about. However, the research provides an indication of the interest and enjoyment that the participants had in the music by their wish to stay close to it. Lord and Garner (1993) carried out research on the involvement of people with dementia in a music group to monitor any improvement of their emotional, social and cognitive functioning. Similarly, MFL projects aim to improve the well-being of people with dementia on all three areas of well-being. Lord and Garner (1993) compared a group

21 using music (big-band music and instruments), with a group using jigsaws and puzzles and another group using pastimes such as drawing and watching television. They found that the music group was more alert, happy and had better recall for past historical events. Tabloski et al (1995) carried out research on the effects of calming music on the level of agitation in cognitively impaired nursing home residents. The study observed the effects of 15 minutes of calming music on twenty clients and on two occasions. The agitated behaviour scores were recorded before, during and after the musical intervention. The conclusions were that calming music was shown to be effective in reducing agitation experienced by this client group. This study is interesting for this evaluation because, anecdotally, participants with a reputation for so-called aggressive behaviours are reported to be significantly calmer after participation in MFL. On a similar theme, Clark et al (1998) carried out investigations to find out if playing preferred music to 18 people with dementia during bathing would decrease instances of so-called aggressive behaviour in comparison to no music. A significant decrease in the number of incidents of these behaviours was recorded. Groene et al's (1998) research looks at the effect of therapist and activity characteristics on the purposeful response of people with dementia. Seven people with dementia were involved. Guitar playing was used along with sing along in 16 sessions and a music tape with facilitators leading exercise was used in the other 13 sessions. It was found that the

22 six people with dementia, as a group, responded more to the exercise than to the sing along. The research found that the way the sessions were led by the therapists involved significantly different percentages of guitar playing and singing. This highlights the complexity of researching the impact of interactive musical interventions and the impact of the facilitators styles on the clients responses. This evaluation of MFL will provide an opportunity to gain evidence on how musicians communicate with people with dementia and how they use music and musical instruments as part of this. Brotons and Koger (2000) carried out a study on the effects of music therapy on language functioning. The participants were people with dementia living in a nursing home. Music therapy was compared to conversation sessions. They found that performance during music sessions was better than conversation for both speech content and fluency. Anecdotally, care workers report that people with dementia who rarely speak in everyday situations have surprised them by verbal communication in MFL sessions. Gerdner s (2000) research looked into playing the preferred/individualised music of a person with dementia in comparison to playing classical music, to see if it had an effect on agitated behaviours. Significantly reduced frequency of agitated behaviours was recorded for both types of music, but preferred/individualised music had a quicker effect and more significant impact. In studies by Suzuki et al (2004), music interventions were carried out over eight weeks.

23 This is the same time frame as MFL, but they had two sessions each week whereas, MFL has one per week. All clients had dementia. They found that total scores on the Mini- Mental State Examination (MMSE) did not significantly change. Scores for language improved significantly. Scores for irritability decreased significantly according to the Multidimensional Observational Scale for Elderly Subjects (MOSES). The above studies provide a sample of the benefits claimed for music as an intervention for people with dementia. It is also important to explore explanations in the literature that provide an understanding about why music is effective. I outline some of these below. Bright (1988) describes how music benefits people with dementia by enhancing metabolic functioning through the activation of old and well established memories. This includes emotional memory. Bright (1988) also highlighted that participation of the person with dementia in musical activities can have the benefit of increased self esteem. This, in turn, may have the effect of enabling the person to exceed their normal limitations. Swartz et al (1989) propose a series of perceptual levels at which musical disorders take place: 1. The acoustico-psychological level, which includes changes in intensity, pitch and timbre (distinctive quality of sound). 2. The discriminatory level, which includes the discrimination of intervals and

24 chords. 3. The categorical level, which includes the categorical identification of rhythmic patterns and intervals. 4. The configurable level, which includes melody perception, the recognition of motifs and themes, tonal changes, identification of instruments and rhythmic discrimination. 5. The level where music form is recognised, including complex perceptual and executive functions of harmonic, melodic and rhythmical transformations. Aldridge (2000) points out that, for people with Alzheimer's disease, it would be expected that levels 1, 2 and 3 remain unaffected. Additionally, the complexities of levels 4 and 5, when requiring no naming, may be preserved but are susceptible to deterioration. Therefore, there are possibilities for connecting with remaining abilities on all five levels. Swartz et al (1989) observed that, while language deterioration is a feature of cognitive deficit, musical abilities appear to be preserved until the late phases of dementia. They suggest that this may be because the fundamentals of language are musical and prior to semantic and lexical functions in language development. Vink et al (2003) point out that when language ability declines music therapy offers possibilities for communication with people with dementia. Brotons (2000) explains how people with dementia may be able to connect with their abilities through music. She explains that research suggests music processing may be occurring in different parts of the brain than familiar linguistic mechanisms.

25 Furthermore, the regions of the brain that process music may be the last to deteriorate in the disease process for people with dementia. Brotons (2000) proposes, because creative arts therapies (and music therapy specifically) rely less on verbal processing, they may offer a unique approach to accessing stored knowledge and memories that control certain behaviours. She poses the question whether it is the music which activates preserved brain structures or if it is the interpersonal caring relationship established with a therapist. This is a very important question for this evaluation. MFL promotes itself as an intervention that uses music improvisation in a group setting that relies on caring relations and support to make it work. So far, I have reviewed the literature for evidence-based research and explanations for how well and why music is an effective intervention for people with dementia. However, MFL also claims that one of its benefits is developing staff. Below I outline what the literature has to say about the importance of developing the reflective skills of care workers. 6.3 (iii) Developing the person-centred care practice and skills of care workers In their research Groene et al (1998) investigated the characteristics of the therapist and Brotons (2000) asked about the significance of the caring relationships that accompany the making of music. They remind us that music does not take place in a vacuum. Music improvisation in MFL relies upon the relationships of the musicians with the group of

26 participants. These relationships could not exist without a high degree of reflection on the part of the musicians. Being part of this process is potentially a great learning opportunity for care workers. In this evaluation, it is important to explore if it provides an opportunity to improve their delivery of person-centred care through the development of their reflective skills. Downs and Capstick (2004), writing about training and educating for culture change, conclude that it requires imparting not just the latest in knowledge and understanding about dementia, but it also needs to have an equal emphasis on reflective practice skills for developing emotional awareness and empathy. MFL projects aim to give care workers the opportunity to take part in an eight week process that develops their abilities to reflect on their practice. This aim fits well with Senge s (1990) description of the learning organisation: one where people are continually learning how to learn together and continually expand their capacities to learn. Kitwood (1998) expanded upon the concept of training for dementia care professionals. He proposed the term formation instead of training. For him, formation suggested preparation of the person for a particular occupational role that involves responsibility and integrity. He proposed that successful formation is most likely to occur when staff groups are taken through a process of professional education and personal development, accompanied by a supporting culture. Parker et al (1995), writing in the context of social worker development, highlighted the

27 importance of experiential learning as a process that allows students to draw on past experiences and make sense of them. Kolb (1984) created an explicit model for experiential learning: the experiential learning cycle. There are four stages to the cycle: 1. Having the experience. 2. Reviewing the experience. 3. Drawing conclusions from the experience. 4. Planning the next steps and thinking about applying the learning in the workplace. Rose et al (2008) promote MFL as a model for reflective practice that largely follows Kolb s experiential learning cycle. They highlight that MFL does not aim to leave behind a legacy of musical skill for staff. Rather, they promote the reflective model that MFL uses within an eight week project to be its most appropriate legacy to the home/day centre. They state that the most appropriate follow-up to a MFL project is a commitment to reflective practice. Schon (1983) identified two main forms of reflection used by the professional: reflectionin-action and reflection-on-action. The former refers to how the professional uses knowledge within a working situation and the latter to reflection occurring after action. MFL aims to offer opportunities for care workers to engage in both types of reflection. During MFL sessions, care workers need to assess how to support the group members to participate, and after the session, they get the opportunity to discuss how effective or appropriate their support was.

28 Johns (2000) presents a model for structured reflection (MSR). This is a technique to guide practitioners to access the depth and breath of reflection necessary for learning through experience. MSR includes a concept called aesthetic response: the ability to grasp and interpret what is taking place, being able to envisage what might best be possible in this situation, and responding with appropriate and skilful action to help bring this about (Caper 1978). Afterwards, it includes evaluating how effective your response has been. MFL aims to put this kind of process into action within its projects. Involvement in MFL projects is promoted as providing opportunities to develop care workers' abilities to respond to the emotional and psychological needs of their clients (Rose et al 2008). Kitwood (1997) described a workforce in dementia care that has for a long time been denied their rights to emotional support. Literature and research on the profiles and needs of professionals who respond to the psychological and emotional needs of their clients is available for counsellors or psychologists. However, this kind of research is also valid for frontline care workers. Miesen (2004) outlined the skills that are necessary for psychologists who work with older adults: To perceive what the clients have to say without the use of complex measuring instruments. To constantly keep in contact with yourself, including being in contact with your motives and vision. To bear witness to the distress that dementia causes. All of the above skills involve emotional intelligence, emotional labour, mentalising and

29 empathy. McQueen (2004) defines emotional intelligence as the ability to be self aware, to recognise one's own feelings and to take account of these in care work. Mann and Cowburn (2005) describe emotional labour as the process whereby the individual feigns an appropriate emotion towards another person, or at a deeper level, when they try to feel the required emotion. Allen (2003) describes mentalising as a process whereby one is making sense of what goes on in one's own mind and the mind of another person. Reynolds and Scott (1999) describe empathy as the ability to perceive and reason, as well as the ability to communicate understanding of the other person's feelings and their attached meanings. All of these are core characteristics of a helpful relationship that care workers need to develop, if they are to meet the needs of people with dementia. MFL aims to provide care workers with a rich experience of supporting people with dementia in the music sessions and discussing or exploring learning from it afterwards. In doing so, it follows Knowles s (1970) basic principles about adult learners. He held that adults tend towards self directedness, they learn most effectively through experiential, discussion or problem based approaches to learning. He held that adults learn best around principles which can be applied to their real life situations and they like to be able to apply their acquired knowledge or skills immediately. This evaluation will investigate if the care workers use MFL as a learning tool and if they apply it to everyday work situations.

30 6.3 (iv) Summary of the findings The studies outlined in 6.2 (ii) are just a small sample of research carried out since the early 1990s. They reported the benefits of music interventions to be increased psychological, social and cognitive well-being. Godfrey et al (2005) report that, since 2000, there has been a number of studies documenting the benefits of music therapy for well-being in people with dementia. One of these was Suzuki et al (2004) and it is cited above. Benefits documented over a number of studies have included improvements in mood/depression, aggressive behaviours, language skills/communication, irritability, social interaction, activities of daily living, and participation in exercise (Godfrey et al 2005). Brotons (2000) conducted a review of 35 clinical empirical studies from 1986 to 1998 (Appendix 2). Three of these, Christie (1992), Groene (1993) and Tabloski et al (1995), are cited above. Her summary of the findings of the 35 studies included the following points: 1 People with a diagnosis of dementia continue participating in the structured music activities into the late stages of the diseases. 2 Instrument playing and dance/movement seem to be the preferred live music activities and they participate in these the most, even into the late stages of dementia. 3 Modelling of the expected responses seems to be an important element to ensure

31 and maintain participation. 4 Individual and small-group settings appear to be the most successful. (It is interesting to note here that MFL projects involve up to 8 people with dementia. With 3 staff and 3 musicians also participating this provides close to one-on-one support. However, the total number of participants including people with dementia, staff and musicians is about 14 people and this could not be regarded as a small group). 5 Social/emotional skills, including communication and interaction, can be enhanced through live structured music activities. 6 Music can enhance cognitive skills such as memory. 7 Music interventions have been shown to be an effective alternative to medication for dealing with so called behavioural problems, such as, irritability, withdrawal, depression anxiety, fear, paranoia and insomnia. Brotons (2000) concluded that, taken together, their findings demonstrate that people with dementia respond to music. However, it is important to examine the rigour of the research. Below I explore some questions that have been raised about the reliability of the research outlined in this proposal. Godfrey et al (2005) point out that the reviews of studies related to the efficacy of music therapies have continued to question their benefits because the majority have not involved randomly controlled trials (RCT) or empirical work. Vink et al (2003) carried out a review of music therapy for people with dementia for the Cochrane Database of

32 Systematic Reviews. From an initial search yielding 354 references, they could only find five that met the criteria for inclusion in the review; these were RCTs that reported clinically relevant outcomes associated with music therapy in the treatment of behavioural, social, cognitive and emotional problems of older people with dementia. The findings of these 5 studies are summarised above and they are Clark et al (1998), Gerdner (2000), Groene (1993), Brotons and Koger (2000), and Lord and Garner (1993). Vink et al (2003) concluded that there is not substantial evidence to support or discourage the use of music therapy in the care of older people with dementia. They state that the methodological quality and reporting of these studies was too poor to draw useful conclusions. Sherratt et al (2004) provided a qualitative review of 21 published articles of clinical empirical studies with a particular focus on the emotional and behavioural responses of people with dementia to a variety of music activities. They concluded that music appears to have a range of applications in dementia care. However, they also highlighted methodological weaknesses of studies. They recommended that future studies should include continuous time-sampling methodology to record the duration of observed behaviours. Based on the reported limitations of the above studies it will be important to consider how to ensure the reliability of a small scale, in-depth research evaluation of MFL. This will be outlined in detail in section 7. Even though there have been methodological limitations to the studies on music

33 interventions for people with dementia in the literature reviewed here, nevertheless, there is widespread acknowledgement that music can be an effective intervention to improve the well-being of people with dementia. Well-being can be viewed under three subheadings: psychological, social and cognitive well-being. Psychological well-being was highlighted in the studies by Tabloski et al (1995), Clark et al (1998), Gerdner (2000), and Suzuki et al (2004). They all reported calmer and less agitated behaviours as a result of music interventions. Secondly, whether there was increased social well-being was difficult to ascertain from the studies cited above. Lord and Gardner (1993) reported participants in a music group being more alert and happy but the social aspect of the group and potential for well-being within it is not clear. Gooene et al (1998) describe musical activities taking place in social settings with sing alongs or exercise. However, they did not elaborate on how people engaged socially within the groups. The third category is cognitive. The responsiveness of people with dementia to music was described as a remarkable phenomenon and they appear to retain musical abilities on a series of perceptual levels (Swartz et al 1989). Brotons and Koger (2000) reported no significant changes in MMSE scores but they did identify increased language function and Suzuki et al (2004) also reported better scores for language. Practice literature reviewed here also highlighted the value of person centred-care. Sherratt et al (2004) recommended that future research into music in dementia care should use the person-centred framework to inform and guide studies. Furthermore, the development of care workers as practitioners who can reflect on their relationships with

34 people with dementia was outlined as a vital ingredient of person-centred work. The phenomenon whereby the care worker enters into the world of the person with dementia was shown to demonstrate overlapping skills including: emotional intelligence (McQueen 2004), emotional labour (Man and Cowburn 2005), mentalising (Allen 2003) and empathy (Reynolds and Scott 1999). This deeper level of skills was highlighted as fundamental to workers ability to reflect on their work. Developing a workforce to hold and promote these kinds of skills was highlighted as a process of professional and personal development accompanied by a supporting culture (Kitwood 1988). Below I look at some of the gaps identified from the literature and evidence based research and I indicate how this has led me to clarify the evaluation question, aims and objectives for MFL. In the studies reviewed by Vink et al (2003), the aims were to evaluate if music is an effective therapy for people with dementia. The five studies included in their review relied on quantitative methodology and used RCTs. They sought to provide scientific evidence of whether music interventions are effective. This question is relevant for an evaluation of MFL. However, in addition to establishing if it is effective, it will also be important to gain information about how it works as an integrated process. We want to provide evidence and examples of the kinds of interactions occurring in MFL that help to promote psychological, social and cognitive well-being. These are not scientific facts; they are social and psychological phenomena. To provide evidence of these kinds of

35 realities will call for methodologies that offer more scope for descriptive accounts and interpretations. In section 7, I will explore the methodology that will be most appropriate for an evaluation of MFL. Much of the research into music therapy outlined above sought to provide evidence that it is effective for a number of goals including promoting overall well-being. However, it was found that an understanding of how social well-being is promoted through music interventions is unclear and more research is needed in this area. Providing a social environment that supports psychological needs is necessary for person-centred care (Brooker 2007). Psychological, social and cognitive well-being are interconnected. The research reviewed here lacks descriptions and evidence about the interplay of all three categories of well-being. For example, social well-being might stimulate speech and a sense of happiness. MFL sessions take place in a social setting involving relationships between people with dementia, care workers, and musicians. An evaluation of MFL will offer an opportunity to explore how overall well-being is achieved in this social setting. The parameters of Vink et al s (2003) review were RCTs involving music therapy provided by qualified music therapists. Musical interventions provided by musicians or care workers were not included. In care homes and day centres, music is often used as an intervention by staff and volunteers to enhance the well-being of people with dementia. This evaluation will investigate an intervention that is not facilitated by therapists. MFL is facilitated by classically-trained musicians with the support of care staff. The skills

36 learned by the care workers in MFL projects can be carried forward after the project finishes. It is important that interventions not facilitated by qualified therapists are evaluated for their therapeutic value. The potential for reaching a larger number of people with dementia is clearly evident when interventions can be delivered by care workers. MFL, as described above, has a clear agenda for developing care workers. Exploring how care workers can develop their care practice through participation in a programme of music intervention is an area that lacks research. We need to find out more about how care workers learn from their involvement in interventions with people with dementia. The research reviewed above does not explore the potential for care workers to learn about the personalities and the psychological, social and cognitive abilities of people with dementia through musical interventions. The evidence based research did not explore the potential for using the insight gained through music interventions to enhance the continuous care and well-being of participants. This evaluation will explore these areas. 6.4 Evaluation question, aims and objectives Can MFL enhance the well-being of people with dementia and develop the person- centred care skills of care workers?

37 This evaluation aims: To explore the effectiveness of participation in MFL in promoting the psychological, social and cognitive well-being of people with dementia; To investigate whether involvement in MFL improves care workers skills in personcentred care. The objectives of this evaluation are: 1. To describe the extent and nature of the participation of people with dementia in MFL sessions. 2. To identify any improvements in the psychological, social and cognitive wellbeing of people with dementia as a result of their participation in MFL. 3. To examine the potential of MFL for improving the person-centred care skills of care workers. 4. To explore whether improvements in care workers person-centred care skills, as a result of participation in MFL, lead to enhanced person-centred care by the same staff. 7. The plan of work 7.1 Introduction In this section I explore current research methodology relevant to this research evaluation

38 and I justify the methods that will be used. Bowling (2002) describes research as the systematic and rigorous process of enquiry that aims to describe phenomena and to develop and test explanatory concepts and theories. She goes on to describe formative evaluations to involve the collection of data while the organisation or programme is active, with the aim of developing or improving it. This research evaluation aims to enquire into how MFL works and to analyse its effectiveness. The information generated by it will be used to develop the project and to improve person-centred care in general. Below, I outline the methodological approaches available to me as a researcher and the choices that I have made for this evaluation. I describe methods that I will use and I outline how I will organise the study. I describe the processes that I will use to maintain reliability and validity. I go on to outline how sampling and recruitment will be managed and how people with dementia will be involved, including how their consent will be obtained. I explain how the data will be analysed and I outline how the findings will be disseminated. 7.2 The methodological approach Research methodology can be broadly divided into two main types; they are quantitative