Expanding a Care Network for People with Dementia and Their Carers Through Musicking: Participant Observation with “Singing for the Brain”

By Mariko Hara

Abstract

Music use in dementia care often takes place within a music therapy context, where music therapy sessions aim to reduce agitated behaviour, regulate emotions, access memories or enhance inter-personal communication. Such sessions usually take place within care homes and their effects have been evaluated in a number of studies. However, there is little research on music use that takes place outside of care homes (e.g. in community centres) for people with dementia who are cared for at home by their family.

This paper discusses such music use, focusing what the weekly local music making activities affords the participants in relation to every day dementia care. Working as a music sociologist, I use empirical data I collected as a part of a study of a community based music activity called Singing for the Brain (SFTB) run by the Alzheimer's Society in the UK. The data was collected through extensive participant observation research and interviews with organisers, carers and care receivers. Three preliminary findings are discussed: 1) how SFTB can be understood as a ecological practice; 2) its various “spin-off’ effects in the everyday care of the members with dementia; 3) how SFTB, together with other local music groups, constitute a “music and care world” in the town and how this develops into fluid support networks for local people with dementia and their carers.

Introduction

I have a particular interest in exploring the affordances of community music makings with the participants (and their family) in relation to their everyday life. This interest stems from having trained as a musician and run community music projects for older people myself and worked with music therapists (including Ashiya Community Music Therapy (Numata, 2009), Otoasobi project in Kobe[1]) as a community musician as well as a liaison with the families of the participants and publicities back in Japan, This has led to my current PhD work where I collected data from Singing for the Brain(SFTB), a local singing group for people with dementia and their carers in the South West region of the UK. The group is run by a former music teacher and several other volunteers, and is one of the services provided by a UK charity, Alzheimer’s Society. This is a good example of a grass-roots music activity conducted in a local community in order to support everyday dementia care of people who are cared for at home. It can be categorised broadly as one of the practices within “music and health” or “community music”[2] but obviously not “music therapy”.

With the SFTB group, I worked as a volunteer (attending the weekly sessions to sing and help in general). Thus, I obtained data from the group through long-term participant observation and interviews, together with a long-term ethnographic study that includes attending a number of music and care events in the town.

Theoretically, I am taking my cue from perspectives developed through the discussion around community music therapy (e.g. ecological perspective (Aasgaard, 2002; Stige, Ansdell, Elefant & Pavlicevic, 2010), socio-cultural perspective (e.g. Pavlicevic & Ansdell, 2004; Stige, 2002)). In SFTB, I have attempted to see the weekly music making activity as a “socio-ecological phenomenon.” More specifically, I have tried to capture a number of relationships being performed, enacted and created through collaborative music making inside of the music making activity (SFTB) itself. By not viewing the activity as an isolated phenomenon, this broadened ecological perspective helps to explore the meaning of music in relation to the everyday life of the participants as well as seeing its connection to other groups in local community.

In this article, after discussing the necessity of situating music activities for people with dementia in relation to every day care, the methods of my research approach is described. Following this is a detailed description of what SFTB is[3]; the history of the Watertown group[4] and the facilitator’s role; the physical layout of the session which helps to make the inclusive atmosphere; the musical format and a description of a typical session. Three preliminary findings based on this material will be discussed: 1) how SFTB can be understood as an “ecological practice”, 2) its various spin-off effects in everyday care and 3) SFTB as a node of a fluid network that enables to support local people with dementia and their carers. These findings also contribute to the discussions around the territorial issues between music therapy and community music (Ansdell, 2002) and the expansion of music therapists’ roles within community music therapy practice (e.g. Aigen, 2004; Pavlicevic, 2004; Procter, 2004; Zharinova-Sanderson, 2004).

Uses of Music in Dementia Care: The Shift Towards “Everyday Care”

To understand the context of my research, it is useful to look at how music uses in dementia care have been discussed. Music therapists have talked about music as a medium with the potential to enhance verbal and non-verbal communication (Koger & Brotons, 2000), access memories (Ridder, 2003; Cuddy & Duffin, 2005), or as a means to manage agitated behaviour (Raglio et al., 2008; Ridder, 2003; Vink, 2000; Vink, Birks, Bruinsma, & Scholten, 2004). The latter is also recognised in nursing (Lou, 2001; Sung & Chang, 2005; Wall & Duffy, 2010). The social aspect of music in dementia care has also been discussed as a means of building interactive relationships (Simpson, 2000) or facilitating the relationship between care-receivers and care-givers (Clair, 2000, 2002). In short, discussions about the use of music for people with dementia have tended to focus on communication, memory, behavioural management and relationships with therapists and carers.

The recent focus on community in music therapy (Pavlicevic & Ansdell, 2004; Stige et al., 2010) along with the Music and Health movement in the U.K[5] influenced local groups to start a number of music-related activities for older people both within local communities and in institutions in the UK (Bannan & Montogemery-Smith, 2008; Sing for Your Life, 2010; Music for Life, 2010). These music sessions may take place in the common areas of care homes or in community centres in order to support professional or local care initiatives. Unlike medical or traditional one-to-one music therapeutic interventions, these initiatives are situated in the everyday life of participants among other activities and also embedded in interactions between other residents/participants, staff and families/carers.

Therefore, in order to improve upon the application of locally situated musical practice for people with dementia (SFTB being but one example) who are mostly cared for by their family at home, it is necessary to adopt perspectives that carefully examine the everyday context of the music for health uses. So far this is largely missing from the literature on the use of music in dementia care. This is a gap this article hopes to help filling in.

Methods: Ethnographic Research

As a music sociologist I am interested in exploring the uses of music in everyday dementia care. Music sociology has recently started contributing to the study of music and health (Batt-Rawden, DeNora & Ruud, 2005; Batt-Rawden, Trythall & DeNora, 2007; Batt-Rawden, 2007; DeNora, 2000, 2007; Hara, 2007; Skånland, 2010) and music therapy (Ansdell, 2004; Ansdell & DeNora, forthcoming; DeNora, 2006a, 2006b; Procter, 2004); however, it has so far not considered the use of music in dementia care. In order to explore the roles of the music making (SFTB), and investigate its relation with the participants’ everyday care, I used an ethnographic approach (i.e. direct, first-hand observation of daily participation, which includes participant observation and interviews). Ethnographic investigation is a common research method in social research, especially issues related to health and nursing and dementia (e.g. Graham & Stephenson, 2010; Guendouzi & Müller, 2005; Holloway & Wheeler, 2009)

It has also been used in the area of music therapy in order to interpret and understand the meaning of music making in community-oriented music therapy practices (Stige, 2002; Stige et al., 2010). In this case I engaged in participant observation of the group during music sessions and conducted 30 in-depth interviews with members of SFTB (carers, care-receivers, volunteers, facilitators and charity representatives). I took photographs as well as making audiovisual recordings of every session to support my description of the sessions. I spent two years with the group as a weekly volunteer, within this period five months were spent on the intensive data collection while continuing my volunteer work. It would be impossible to fit all the findings from such in depth and rich material into a brief article like this, I will therefore only use parts of the data to highlight my findings where appropriate.

While working for SFTB as a volunteer, I also worked as a volunteer in another local group, Sounding-out, a music project involving people with learning disabilities. This long-term involvement with two different music groups, my residence in the city and the participation in various public events gave me a good understanding of the overall picture of music and care for older people in Watertown. As local, non-commercial music-making activities are usually hidden (Finnegan, 2007), it was important to explore these grass-roots activities through participant observation. The extended involvement with SFTB as a volunteer also helped me to “tune” myself in to the field slowly (considering my ‘‘outsider” status with the group) and establish mutual trust with other members (informants-to-be) in order to talk about the sensitive issues (e.g. being a carer, having dementia and the personal experience of SFTB). My long-term involvement was also helpful in understanding the meaning of specific habits and the overall character of care-receivers.

Whenever I interviewed people with dementia, I carefully selected the setting for the interview, making it as comfortable and non-threatening as possible. I let them choose a familiar space for the interview, such as their home or a place where they would regularly go. I also asked their partners, family members or carers (i.e., those with whom they felt close and secure) to join me for the interview.

Expecting the interviews with people with dementia to be challenging (even in a secure environment) in terms of knowing what they “really” think, I prepared a strategy of bringing the songbook used in SFTB sessions and attempting to sing the songs during the interview. Studies on the use of music in dementia care have shown how music becomes an effective tool in accessing memory, as I mentioned above. Music is also used widely as a tool to promote concentration – DeNora discussed the everyday use of music to produce environments that afford concentration in everyday life (2000, p. 58). These uses of music have been applied in the interview settings as well, for example, listening to music has also been used as a tool to elicit information about how music is used, heard and judged by the informants (Allett, 2010; Anderson, 2005) and auditory stimulus has been used to evoke autobiographical recall for people with dementia (Foster & Valentine, 2001). These methods, however, used recordings as input and did not engage in interactive singing or any other music-related activities.

Instead of bringing recordings, I went through the SFTB songbook with the informants, sometimes singing or humming songs together with them. Some carers took the initiative and sang songs from the book with their care-receivers, which led to a mini-singing session with me as the audience or as a joint singer. This way they were able to show what the music meant to them and their carers through words and/or expressions, as well as by singing and other acts of musicking (more on this see Hara, 2011). “Musicking” is an action and performance oriented concept developed by Small (1998). It expands our understanding of music making by suggesting that:

To music is to take part, in any capacity, in a musical performance, whether by performing, by listening, by rehearsing or practicing, by providing material for performance (what is called composing), or by dancing (Small 1998, p. 9).

The use of the concept “musicking” in this paper emphasizes the informants’ active musical engagement, ranging from singing and humming to listening to others’ singing.

Using the songbook and singing in the interviews helped me to see how musicking affected them. Once the interviews were done, they were analyzed using a grounded theory approach. Grounded theory has been employed to analyze the accumulated ethnographic and interview data in music sociology (Batt-Rawden 2007; Bergh 2010), music therapy (Amir 2005), studies of health issues and nursing (Glaser & Strauss 1977; Schreiber & Stern 2001), as well as the study of Alzheimer’s caregivers (Orona 1997). Grounded theory refers to analytical techniques that allow themes (and new theories) to emerge from (often rich ethnographic) data, rather than defining the themes of interest prior to beginning analysis. In this way, grounded theory approaches do not exclude important issues and findings that are not necessarily known or obvious to the researcher before the research takes place. By applying a grounded theory framework, I was about to illuminate the socio-cultural contexts of the informants’ experiences..

About “Singing for the Brain”

It [SFTB] just fits the criteria for people with dementia, peer support, activity, stimulation, raising awareness, it fits every single bill. - Service manager, Alzheimer’s Society, South West region.

Before describing the format of SFTB, it is useful to understand the context of SFTB in the wider picture of singing for health practices, as well as how it is situated as a service for people with dementia in the UK. The health benefits of singing have been discussed both in the context of everyday musicking (Clift & Hancox, 2001, 2010) and in the context of music therapy (Clair, 2000; Ridder, 2003). At the same time, singing have been suggested as a useful activity for retired people and the older generation, and a number of charities have formed local singing groups in the UK (Eades & O'Connor, 2008; Sing for Your Life, 2010; Bannan & Montogemery-Smith, 2008). SFTB is one such local activity targeting specifically people with dementia and their carers. There are roughly 50 SFTB groups in the UK, and SFTB sessions are intended to provide a safe, non-clinical place where people with dementia and their carers can express themselves through music and socialise in a fun and supportive group (Alzheimer's Society, 2009, 2010).

Figure 1 gives an overview of the Alzheimer’s Society's activities in Watertown. The main aim of the Alzheimer’s Society is to raise awareness of dementia and provide information and support for people with dementia and their carers through a range of services[6] of which SFTB is one. The service manager of the Alzheimer’s Society (South West region) explained that SFTB fits in with several areas that she sees as important in dementia care and the aims of the Alzheimer’s Society; peer support, activity, stimulation and raising awareness. Their increased recognition of the potential of music use with dementia patients has led to SFTB being adopted as a core activity by the Alzheimer’s Society (Alzheimer's Society, 2010). This means it has gained a more formalised structure, increased funding and a training programme to teach more facilitators.

Watertown Group of SFTB

History of Watertown Group and Facilitator’s Role

Although a common training programme is organised for promising SFTB facilitators, and facilitators of different groups continuously share ideas, each SFTB group has its own character according to the facilitator who runs the session and its volunteers. The repertoires sung in the session are usually negotiated among the members and the types of activities vary according to the capacities and limitations of the participants. Below, I will describe the Watertown group of SFTB, with which I worked. The Watertown group was started in 2006 by Jessica, who was a committee member of the local Alzheimer’s Society, and she is now the facilitator of the Watertown group. Jessica is a former music teacher with her own experience of caring for family members with dementia. She heard about the SFTB activities run by another branch of the Alzheimer’s Society, and suggested to the chairman of the local Alzheimer’s Society that a similar activity would be useful in Watertown. The group started with a couple of care-receivers and carers and a few volunteers, but the number increased to about 30 attendees (approximately 10 care-receivers, 10 carers, 10 volunteers) after three years[7]. As she herself was an active musician, she was involved in several networks that had formed around different local music groups. She gathered volunteers, mainly retired people who were active in local choirs, from her own local music networks, therefore, all the volunteers are very musical and most of them have been singing in local choirs for a long time.

People with dementia and their carers come to the group through a number of different paths; recommendations by the Alzheimer’s Society, word of mouth, information on the Internet or recommendations by a local doctor. Recently, after the group gained more media attention through a BBC documentary programme (BBC TWO, 2009) and a local evening news feature, the number of attendees has increased. Although the initial target of the group is people with dementia and their carers, the Watertown group also has a few care-receivers who do not have dementia. Typically, their carers were looking for a social activity they could join casually, and Jessica suggested they come and join SFTB.

As we can see, the facilitator’s role is not only to plan and run the music sessions; she also recruits volunteer members and care-receivers with and without dementia (together with their carers) and organises the volunteer teams. She also acts as a hub for the Watertown SFTB group to connect with external resources, such as its parent charity, and other local music groups as well as local media.

The Physical Layout

[SFTB] is a safe place for them, isn’t it? No one is going to judge them. For the carers, no one is going to judge the people [with dementia] if they get up and dance, or if they start clapping, or if they say funny things. No one is going to judge them for that, because, you know, we are there to sing, aren’t we? – Susan, volunteer

The layout and content that are prepared for a typical music session are important and warrant a detailed discussion. This will also illuminate the volunteers’ roles in SFTB.

In the session described here which, based on my two years’ experience, is a typical of sessions, there were 10 care-receivers, 10 carers and 15 volunteers. An average of 30 people attends each session. The physical format illustrated above is carefully planned. The volunteer’s role is to welcome people, give them name tags, draw attention to the newsletter, serve tea and chat with them. When the actual singing takes place everybody sits in the circle and contributes to the singing. The walls of the room have a good acoustics which also aids the aesthetic quality of the singing; helping the members to feel the resonance, and enhancing the presence of the collective singing experience. In this way, facilitators, volunteers and the space itself contributes to a very welcoming, safe structure to draw people in to the singing session. Therefore, even if a member is not confident about her (singing) voice, she can feel comfortable and contributes in her own ways (singing or otherwise) without feeling threatened or exposed. The absence of judgment that Susan highlighted above ensures an atmosphere that is inclusive for all the participants (with and without dementia), whatever way they participate. This welcoming and safe structure is of crucial importance for the positive outcome of these sessions. I will therefore examine how it is crafted not only by means of the physical format and support from volunteers but also through the carefully chosen musical structure in order to afford sense of success, flow and joy of singing among the participants.

The Musical Format and a Typical Session

The musical structure takes into account the capacity of the members with dementia, and what they are able to do. This varies according to participants’ stage of dementia as well as the condition (of the participants) on the day the session takes place. Since SFTB sessions are not individual but group-oriented, it is challenging to tackle the condition of each member individually. Therefore, the musical structure has to be planned and carried out in such a way that it becomes a strong device to produce collective flow as much as possible. Jessica, the facilitator, pre-plans the music structure carefully based on the repertoires which are chosen by her based on various negotiations with the participants. Below is the music programme from the session discussed here, which is representative of a typical SFTB session. I will describe this along with any specific episodes that happened during the session. The discussion that follows will use the description to illuminate my initial findings.

The songs chosen for each session vary from session to session, however, each session follows the basic structure as below:

1. Notices and birthdays
2. Physical warm-up
3. Hello song
4. Familiar waltz tunes
5. Part song
6. Call and response song
7. New song with percussion and harmony
8. Quiz
9. Familiar song with percussion
10. Song with movement
11. “Shalom” (good-bye song)

1. The sessions always start with notices and birthdays. In this session, after the facilitator told the group some news about people in the group, two birthday cards were given out and “Happy birthday to you” was sung. As a rule the group makes sure that everyone’s birthday, including those of carers and volunteers, is celebrated. As care-receivers often forget their carers’ birthdays, this helps create an atmosphere of bonding not only within the group but also between carers and care-receivers more specifically.
2. After this there is a physical warm-up. This time participants rubbed their faces, moved their hands as they shook hands, crossed their ankles, shook their shoulders and moved their arms pretending to climb a ladder. This was followed by breathing in and out to the count of four, buzzing like a bee following a rhythm, saying “a-ha” and opening and closing an invisible door. Usually the facilitator makes a few jokes to make people laugh and ensures the group is warmed up.
3. The physical warm-up is usually followed by the Hello song where the names of those present are sung and the facilitator walks around the circle to make sure that all the participants are welcomed individually.
4. Following this warm-up the main repertoire starts with familiar waltzes. In this particular session the facilitator used the theme of “spring” to tie different parts together. The songs included “My favourite things”, “She was one of the early birds” and “Tulips from Amsterdam”. The final familiar waltz was “I like the flowers”. First the group sang the melody and the facilitator sang the ostinato part, later the whole group was divided into two with one half singing the ostinato and the other half singing the melody.
5. After this a call and response song, the “Banana Boat Song” was sung. This had been introduced the week before, in line with the facilitator’s idea that repetition is important for participants with dementia for whom learning is still possible. First the facilitator sang the solo parts and the group responded with the single line, “Day light come and me wan’ go home”. Again we were divided into two groups with one group calling and the other responding. Caroline, who has dementia, usually sits quietly during the sessions; however she often does little tricks to make others laugh. This time, after singing the tune in harmony with the others for a few verses, she sang the word “banana” (from the line: “Stack banana till the mornin’ come”) ahead of the group, thereby making other participants laugh and she grinned in response.
6. Next follows a new song, in this case a Caribbean song (“The Mocking Bird”) with the bass part sang of by the male volunteers and the rest of us singing the treble part. When these songs – especially songs that are new to the group – are sung, the care-receivers have a sheet with the lyrics in their hands and a keyboard accompanies them to help them pick up the melody. The volunteers then join in with the singing to support the care-receivers. At other times volunteers may start singing and the care-receivers follow.
7. Afterwards a quiz takes place, following a similar theme to the earlier songs. This is usually led by a volunteer who starts playing a tune on the keyboard and others join in with the singing and try to guess the song title. This time the theme was “birds” using songs such as “A nightingale sang in Berkeley Square”, “When the red, red robin” and “Feed the birds”. This time Laura, a care-receiver, spontaneously stepped inside the circle and started dancing.
8. The week’s familiar song, “My Grandfather’s Clock” was sung, accompanied by another volunteer on keyboards. The facilitator picked up a woodblock and asked if anyone wanted to play the clock with it. People started shouting the name of Jonathan, who had previously played the drum part very well, but this time the facilitator chose another care-receiver to play the part.
9. This was followed by a song with movement, in this case “Hokey Cokey”, a familiar and fun British song which calls for different parts of the body to be used. Those who were able to stand up danced in the circle, moving their legs according to the lyrics of the song. Participants, including people with dementia, were able to follow the movements, and Arnold, who has dementia, was singing along with a loud voice, being very lively, and occasionally interjecting a loud “Oh!” He stood up and came inside the circle as he had done successfully two months earlier with some help. However, this time he tried on his own and lost his balance and was about to fall down. His wife ran to him and took him back to the seat and helped him sit down. Arnold was clearly displeased about having to sit down. His friend who was also present took his arms and danced in front of him, and so did two other volunteers to help him still feel involved.
10. “Shalom” is always sung at the end of the session. This is a very calm song whose lyrics mean “good-bye till we meet again.” It is sung sitting down, first with words and then with humming.

Discussion

The above outline has presented a sketch of a typical SFTB session which shows how the session is planned, organised and put into action by the facilitator, volunteers and participants. In this outline, I have also described the specific little episodes with Caroline, Laura and Arnold who are regular participants with dementia. The three of them had mid to late stage of dementia at the time of the session. Caroline was in her 80s, and always came with her daughter, Lisa. Laura, who was in her 70s, started coming to the session about a year before this session took place. She was also a regular member and always came with her husband, Michael. Arnold who was in his 70s, came to SFTB from its start as a regular member with his friend, Bob and his wife Monica. Laura and Arnold were active singers in local choirs prior to joining SFTB. Caroline, although she wasn’t an active singer like the other two, was fond of music and always sung and still is singing tunes from musicals at home.

In this section, I will describe the preliminary findings through my participant observations and interviews; 1) SFTB session as an ecological practice, 2) SFTB and everyday dementia care: Spin-off effects and frameworks and 3) Using music and care pathways to expand a care network. In these discussions, the outstanding episodes (with Caroline, Laura and Arnold) mentioned above are also reconsidered more in detail reflecting the interviews with their carers.

SFTB Session as an Ecological Practice

Laura is a care-receiver who knows a lot of songs and therefore is rather good at the musical quiz discussed in point 7 above. Whenever she gets the song title right she proudly tells the group, “I know all the songs!”, and sings the song out loud. She also enjoys dancing during the sessions. While everyone sits in the circle singing, she sometimes spontaneously goes into the middle of the circle and starts dancing to the music. She invites Michael (her husband and carer) or volunteers and other carers to dance with her: “Come on let’s dance!!” Once I was invited to dance with her and she taught me how to dance by dancing together. She frequently tells me during the sessions and also in the interview that she used to be a singer and how she loves singing; “I love singing, and they told me that I have the best voice” (Laura).

In this way a teacher-pupil relationship between Laura and me (some songs being unfamiliar due to my Japanese background) is established naturally in a joyful atmosphere. Laura is always cheerful during the session. She winks to me whenever she sees me, and calls my name loudly saying, “Come here, Mariko! Let me give you a kiss!” She starts singing songs in the session even before the actual singing starts.

Having known Laura as a cheerful person in the sessions, I was somewhat surprised when I met her and her husband in a supermarket after a session. When I went to say hello to them she didn’t recognize me nor my name (in the session, everyone has a name tag) and she looked a bit puzzled. Her energy level was much lower than I was used to and her attention was not very focused. In short, she seemed to be a totally different person from the Laura I knew from the session.

It seems that the SFTB sessions enable Laura to be a very a different person from the Laura I met outside the sessions. In the sessions she is always very confident and cheerful when interacting with others, she is alert and accurate about the words she sings and easily follows the facilitator’s instructions when it comes to challenging activities such as singing in parts. It seems that SFTB sessions allow her to reconnect to the enjoyment of being with others and the joy of taking the initiative. Out of this context, she is not as cheerful or confident as in the sessions.

Arnold is also a very good singer. Unfortunately he had to stop coming to the sessions a month after the session described above due to the advance of Alzheimer’s disease, possibly because the incident discussed in point 9 became a trigger for his carers to stop attending the session. His friend Bob, who used to bring Arnold, told me that it became difficult for Arnold to get into the car due to his physical deterioration. When he was still coming to the sessions, he often led the group singing with his deep voice:

Anything where it [the tune]can slow down and it can get on the top note and hold it... music goes high and if he can hang on to the note--- Jessica’s [the facilitator] got to wait until he finishes it before she starts the next line. ‘A lily of laguuuuuuuna’ [sings as an example] I think it is not the words, but it is the tune... that gives him something to weigh him up. (Bob - Arnold’s carer/friend)

Arnold was always cheerful and very social person in the group. Although his illness has become more obvious at the late stage, he always tried his best to keep on greeting people with a smile and eye contact. His wife told me that before he got Alzheimer’s he loved singing in choirs, however, as the dementia advanced it became difficult for him to continue in choirs that sing “big pieces” which she defined as Mozart’s choral works.

Singing for the Brain enabled him to carry on singing. It wasn’t the classical type of music he sang in the choir, but it lifted his spirit. When he had to give up singing in the choral society, it was hard for him to accept it, but he felt a lot better [by joining SFTB] and it was good for him therapeutically and emotionally. (Arnold’s wife, Monica)

In the SFTB session he was able to concentrate and sing along in his deep voice with the confidence that he was known for from his past musical involvement. SFTB sessions allowed him once again to enjoy the pleasure of singing, albeit now in relation to different types of music. Arnold’s musical participations were always articulated with his deep voice, especially when the group sing the waltzes and his favourite songs, such as “Irish eyes are smiling” and “Lily of Laguna.” At the same time Arnold’s wife, Monica, was able to listen to him and see him enjoying himself and being recognised as a leading vocalist in the group.

These two vignettes show how Laura is more aroused and focused, singing and dancing with confidence, and Arnold once again having the role of the leading vocalist when attending SFTB sessions. Christina, a volunteer, has also observed these changes to participants within the session:

Knowing him personally, it is very, very sad. [...] But, it makes you feel very happy when you see them get up, walk around, dancing, or somebody gets up spontaneously and dances, that feeling of elation. You think wonderful, you know, they are uninhibited, they can go out there and do it and then other people doing it and I think what a wonderful freedom! (Christina, volunteer)

How does this happen? Is it simply the outcome of the well planned layout and music programme that I described above? As witnessed also by Christina, SFTB enables the care-receivers to “get up spontaneously and dance” and “they are uninhibited” in SFTB sessions. The way that a music therapeutic environment can affect one to become “someone else” has also been discussed in community music therapy (Ansdell, 2002). Aasgaard (2000) has talked about how song creation in a paediatric oncology ward shifted one client’s role from “patient” to “song maker” or “creative person.” He defines this process as an “ecological music therapy practice.” This practice, in Bruscia’s words, equates healthcare with the health of the social environment, “helping an individual to become healthier is not viewed as a separate enterprise from improving the health of the ecological context within which the individual lives” (Bruscia, 1998, p. 229). The SFTB sessions are planned and carried out taking the limitations and the capacities of the members with dementia into consideration; however, the sessions do not target individual behavioural or emotional problems. Rather, Jessica and around 10 volunteers attempt to craft an inclusive structure, enlivened by group singing and the various relationships between all the participants, the so-called “ecological context”, which allowed Laura and Arnold to be “uninhibited” and feel confident about themselves. In other words, this carefully crafted “ecological context” offers them an opportunity to shift roles from “people with dementia” to “cheerful singers and dancers.”

The pre-planned musical structure keeps the group singing without any breaks, except for laughter, which keeps their attention focused. Care-receivers’ levels and ways of participation vary greatly, from sleeping, moving one’s mouth and singing to dancing, according to their current ability. However, everyone, regardless of their level of involvement, sits in the same circle as a member of SFTB and they experience being together “just like a family” as Susan, a volunteer, puts it. The group singing sounds slightly different each time, according to the members present, but the singing activity is kept going through the support of some very musically skilled volunteers. This then becomes a safe and comfortable frame that holds together the members so they can participate freely in their own way. Therefore, even though the level of participation varies, there always exist, as Ansdell discusses in relation to a community music therapy project in East London, “qualities of unity without uniformity; of a musical community which manages to live with musical difference” (Stige et al., 2010, p. 57).

Inside the musical community of SFTB , which encompasses a variety of ways of participating, the differences between people with and without dementia are reduced. Within this community there are a number of different relationships; care-receiver to carer, carers to carers, carers to volunteers, volunteers to volunteers, student volunteers to experienced volunteers, carers to facilitator, care-receivers to care-receivers, care-receivers to facilitator and care-receivers to volunteers. These relationships and the “whole ecology of relationship; to each other, to their context, to their culture” (Stige et al., 2010, p. 37), emerge through the shared responsibility of this very simple action: singing together. The musicking that happens in SFTB is not limited to one-to-one interactions such as a facilitator/client interaction; rather it occurs through the ecology of a variety of relationships. Therefore, SFTB can be seen as an “ecological practice” within which various relationships are performed, transformed and enacted through musicking, which, most importantly, affords the members with dementia (e.g. Laura, Arnold as discussed above, and Caroline who will be discussed below ) spontaneous and “uninhibited” action and allow them to enjoy connecting with the joy of singing with others again.

SFTB and Everyday Dementia Care: Spin-off Effects and Frameworks

In her discussion of her community music practice in South Africa, Pavlicevic (2004, p. 42) suggests that they as music therapists, can’t separate "outside" and "inside" (of music therapy practice) being distinct spaces and can’t close door to everyday life. She also argues that “‘Life’ and ‘therapy work’ are inseparable, in the special, temporal or mental state” (Pavlicevic, 2004, p. 42). Likewise, affordances that come from participating in SFTB are not restricted to ‘inside’ of the music space, but spins off outside of the music space; everyday life and everyday dementia care.

The participation of carers and carer-receivers depends on the carers’ initiative and efforts, as the carers are the ones who must bring the carer-receivers (in most cases, the carer’s partner or family member) to the sessions. In this section I will discuss what motivates carers and what they get out of the SFTB sessions in relation to their everyday dementia care work. The benefits can be seen as (a) spin-off effects, that is, additional advantages that arise from participating in the SFTB sessions, and (b) a framework that help carers and care-receivers to frame their daily lives that may otherwise become isolated or unstructured.

When I interviewed Laura together with her husband Michael, they told me that Laura always sings to Michael’s piano accompaniment at home. Michael has a lot of musical skill and experience in local musical performances. They are a very musical couple, and told me that they frequently used to go dancing, and always sang at family occasions with their children. Michael also told me he had to give up all his own social activities (singing in the choir, playing bowls, etc.) to look after Laura, but the SFTB sessions enable them to keep on singing in a group. He explained that “She feels better after coming to the session, if she feels all right, I feel all right. Talking to other carers is good, too.”

After Arnold stopped coming to SFTB he joined regular music therapy sessions in his nursing home. His wife (Monica) and friends try to sing with him when they visit him. However, his wife and his friend are not sure if singing is helping him now at the late stage of dementia as Monica says, “It was helping him. That was the way he could express himself, but I don’t know if he understands the words of the song now or if he is just moving his mouth.”

It may be that the effect of music therapy on Arnold is more difficult to gauge than the effect of the SFTB sessions: although the importance of carer’s presence is discussed by music therapists working with people with dementia (Bright, 1988; Clair, 2000, 2002), the format of the music therapy session Arnold participate weekly in the nursing home does not explicitly encourage participation by carers or family. In SFTB, on the other hand, the care-receiver’s participation is clearly visible to their carers, which seems to encourage the carers to continue to bring their partner/family member, thus establishing a virtuous circle. In addition SFTB seems to benefit the carers as well – as Michael put it “talking to other carers is good too.” Similar comments were expressed by other carers as well. For example, Kelly, who cares for her husband Chris, expressed the difficulty of having to be alone inside the house with her husband most of the time, dealing with his dementia, having to explain the same thing over and over to him. She explained that coming to the sessions gives her a break from the everyday caring issues by meeting other carers who are in the same position and can share her worries and stress as well as useful information. She thinks that there is not enough understanding and recognition of Alzheimer’s disease in general. It was very clear that she feels frustration about the situation and needs to express this to others. Kelly told me that “this (SFTB) is the only thing he [her partner with dementia] can cope with.” The singing sessions give the care-receivers a certain time and space to do something in which they can still be involved, and at the same time, they give carers a break in their routine of caring. It is clear that SFTB affects the relationship between carers and care-receivers in a positive way, at least by giving the carers a temporary relief as mentioned by Michael and Kelly.

Another example of the relationship between carers and care-receivers being affected by SFTB is explained by Lisa, the daughter of Caroline, who made people laugh by singing a line a few second before everyone else, as discussed in point 5 above. Caroline usually joins in the singing quietly without any distinctive actions, unlike Laura and Arnold, however, she often generates waves of laughter during the session with her subtle sense of humour, as I have described. Her daughter, Lisa, always sits next to her, and laughs when Caroline does funny things during the session. One time, I saw tears in Lisa’s eyes when we were singing “Shalom”, the song usually sung in the end of the session.

One of the volunteers, Rosie also described what the SFTB participation affords Caroline and Lisa and mentioned Caroline’s funniness during the session as well.

[…] the first time, that was when little Caroline and Lisa came for the first time, I was sitting opposite from them. Caroline was a bit confused, I mean that was all new and, she sort of nodded, sort of hummed I think a bit. But I don't know which song it was, but with some song she obviously knows very well, her face lit up like a little lantern, and smiled. I've caught Lisa’s yes. And Lisa looked around at her mum, and that is when you realized how much Caroline likes to come to Singing for the Brain. (Rosie - volunteer)

In the interview with Lisa, she told me that Caroline enjoys going to the sessions, and that she always enjoyed music, especially songs from musicals such as Cats and The Sound of Music. [She now listens to Sunday music programmes on the radio using headphones prepared by her husband, with her feet tapping to the rhythm.] Caroline and Lisa told me that she enjoys going to SFTB, and how Caroline likes songs with action and songs she knows such as “Edelweiss” (from The Sound of Music), “I’ll be your sweetheart” and “Long way to Tipperary”. However, she loses her concentration with songs she doesn’t know. Lisa said SFTB sessions allow Caroline to be involved in a social activity, and that it is also good for her as a carer because she meets people who are in the same situation as herself. Lisa also described how she was able to rekindle her relationship with her mother:

When mum makes me laugh, it is quite touching. This is when I meet “old mum”. (...) Those moments are very important for me.

In the interview, Lisa as well as Caroline’s husband told me that Caroline had always had a great sense of humour and that it still shows.

Lisa cherished the moments in the session when they are able to enjoy the old mother and daughter relationship. These moments are temporary, but the recharged connections between carers and care-receivers have longer term results. First, it helps carers to maintain the quality of caring outside the singing activity as they are reminded of the original relationship they had with the care-receiver. Second, these moments that show others the improved mutual connections between care-receivers and carers have a spin-off effect to other attendees. For instance they can see how a sense of humour can be shared regardless of the progress of dementia. Within the SFTB session, a variety of ecological phenomena are shared by the members, and each phenomenon can generate a spin-off effect that in turn affects other relationships.

Many care-receivers and carers told me that SFTB is the only social activity they (can) join, and that it is something they look forward to. As Arnold’s carer/friend, Bob expressed it:

People who come enjoy the session, and I would guess as far as they are able to look forward to it, well, I suppose, it depends on how far down the line they are, it seems fairly obvious to me that it is high spot of their week. And then that obviously affects their carers as well. It is something that they can look forward to.

These spin-off effects of the SFTB sessions occur not only within the sessions, but are also carried into participants’ everyday lives which may then be structured around the SFTB events. For example, Kelly told me that it takes all morning to get her husband ready for the SFTB session. This preparation then becomes an event in itself within their daily life. Another couple always arrives at the venue half an hour early to feed the swans on the river before the session. Lisa told me that on the way home from the SFTB sessions she and her mother continue singing the songs from the session. Peggy (a carer) told me that her mother, Nichola sleeps very well in the car after the one hour of constant singing. The importance of such spin-offs has also been discussed within music therapy. For example, Aasgaard has suggested that the ability of singing to provide memories and generate positive expectations as a spin-off can be as important as the event itself (Aasgaard, 2002, p. 203). For the participants with dementia, their memories of “a good time” in SFTB sessions obviously do not last long, therefore, extending the effect with spin-offs becomes very important for their everyday life both for themselves and their carers.

Some of these “spin-offs” can be understood as repeated events that give meaning to their SFTB participation and help provide a framework for their everyday life. For instance, the couple who fed the swans before each singing session clearly had an activity that was part of their SFTB attendance while also forming part of their daily life outside the session. As mentioned earlier, the session often has a seasonal or festive theme, such as “Valentine”, “Easter”, "Christmas”, etc. Thus, when the theme was “Easter”, there was an Easter Bonnet Competition[9] as a part of the session, for which all the participants brought a home-made Easter bonnet (hats). During the session participants were showing and complimenting each other on their bonnets. This whole process of preparing for and partaking in the special SFTB event is also a part of the “spin-offs” of SFTB session that affected their life outside the session.

Therefore SFTB is more than just singing together once a week, for the carers and care-receivers it also provides a structure for their daily lives, described variously as a “break” (Kelly), a “social activity” (Hannah) and an “involvement” (Lisa). In short, SFTB is something that participants look forward to, that lets them get out of their daily caring routines and helps them to keep up the social aspects of their life. As mentioned before, coming to the SFTB sessions can help release the carers’ tensions. The moments of happiness that they share during the sessions, or the improved moods afterwards, may only last a short while. However, by expecting and preparing for the next SFTB session, they may be able to make the moment last longer (Aasgaard, 2002). This may help them to handle tensions in the overall care situation. The fact that the session is weekly is also beneficial in terms of providing a regular framework.

Using Music and Care Pathways to Expand a Care Network

So far, I have caught some glimpses of the connections between SFTB and everyday life of the participants. In this section, I will delve deeper into how SFTB constitutes wider music and care world together with other music groups and discuss how the interlinked networks and pathways (inside of the music care world) become useful resources to expand a care network for local people with dementia and their carers.

As mentioned above, I spent two years in Watertown working with SFTB and another music group. This enabled me to contextualise the role of SFTB and connected resources within the network of music and care in Watertown. I also gained an understanding of what the everyday lives of SFTB members are like; where they access information about dementia care and events, daily shopping, other social involvements, and relationships with other informants. I often encountered the informants outside of SFTB, which added to my understanding of the informants in other situations and helps to fill in a more complete picture of the care network.

Figure 3 depicts the different organisations and activities for the (mainly older) care-receivers in Watertown and their interconnections and relationships. The largest organisation here is Age Concern, a charity that supports older people and runs three different music activities. Age Concern introduced Sounding-out to run musical activities for older people with learning disabilities. Sounding-out also runs training programmes for care-workers on how to use music in various care settings. The Alzheimer’s Society is responsible for running SFTB, whose volunteers come from various local backgrounds such as choirs, churches and schools. Several participants in SFTB live in nursing homes or attend day-care centres, that means the residents of nursing homes are targeted both by SFTB and existing music therapy programmes. Age Concern and the Alzheimer’s Society are linked through care support workers who are involved in both charities. Wren Music is an organisation that runs various music workshops for people of all ages. Finally, there are various choirs and a karaoke group run by a local couple that older people can join.

We can see that there is a network of groups and music-making activities for older people that overlap via their supporters and members. The range of activities and number of participants in these groups are fluid and extend from a handful of people meeting irregularly to regular activities such as SFTB which attracts 30 or more participants to weekly meetings. Together they constitute the music and care world in Watertown. All of these groups and activities are the “nodes” that constitute the whole network, terms commonly used when discussing social networks (Scott, 2000). Various “nodes” are connected through “pathways”[10], that is, routes for older people and their carers to access music and care opportunities. These opportunities have been developed through local supporters’ initiatives and efforts according to local needs. The local networks in Watertown also help potential participants to find out about the SFTB sessions. For example, SFTB participants have learnt about the group from a variety of sources; local doctors, the Internet, the Alzheimer’s Society, Age Concern, local churches, local choirs, the carers’ days organised by the local council etc. Again we see the emergence of a virtuous cycle that helps sustain these local, and largely voluntary, activities.

This cycle enables SFTB to create the care network for people with dementia and their carers using the music and care pathways in Watertown as a resource. Volunteers have arrived at SFTB via a number of these pathways (e.g. churches, schools, other charities etc.). This further strengthens the network, as, for instance, many volunteers are active musically in other groups/choirs and provide information about their concerts at the reception desk in SFTB. Being voluntary and locally based, the facilitator and volunteers don’t have fixed “working hours”, but work together to maintain the care and support on a daily basis within their own lives. For instance, the volunteer who is in charge of admissions to SFTB contacts carers and carer-receivers if they have been absent for some time, and inquires about their situation and makes sure they feel a part of the group and that they are welcome to come back to SFTB when they can. For example, the facilitator, volunteers and carers often organise informal events (with or without singing) during the holidays where they can catch up on what has happened during the break. The facilitator and the volunteers sometimes visit members who no longer come to the session due to their condition and if volunteers discover that participants need more support in their daily living they contact the Alzheimer’s Society.

How can we understand this care network theoretically? Wood has discussed a “format” of music therapy sessions as a “node”, and how various nodes are interconnected with each other as the essence of music in one format is carried to the other node (Wood, 2006). In my view also, the joint, locally-based music activities that people engage in are the nodes. In other words, the SFTB sessions function as a node within the care network to support people with dementia and their carers as I have documented above. This network evolves continuously through the work of volunteers: the local music and care “activists”, and for people with dementia, SFTB is a key activity that holds their specific network together.

As networks are fluid (in my time with SFTB the participants frequently changed) what makes a node strong enough to hold and develop the care network? Stige discusses choral participation in “senior choirs” as “mutual care” and proposes that “mutual care could be descriptive for senior participation, if responsibilities are bearable and responsiveness to music, yourself, and others are nurtured” (Stige et al., 2010, p. 273). In SFTB these conditions are amply fulfilled. For example, the responsibilities of running the session are shared among several volunteers, and all the participants take part in the singing. The relationships, and the strong sense of sharing that emerges, nurture the participants’ response to the music and each other. Therefore, the core activity of SFTB, the simple act of singing together, engenders mutual trust as hinted at by Susan who pointed out that no-one was judged for how they participated. In this way the pathway itself is strengthened through the seemingly non-related act, which is singing and the overall care network available to participants in Watertown is maintained and expanded.

There is also a discussion on “musical pathways” in recent Community Music Therapy practice; how music becomes a positive pathway and bridge to transform the nature of care as well as the state of illness and health (Ansdell & DeNora forthcoming). However, what I describe as “music and care pathways” here are the routes to access music that includes extra-musical care and support. These pathways are being activated by the daily/weekly engagement of local music and care activists of SFTB. The pathways also become resources to create the care network as the knowledge (about care or music opportunities) is continuously added to and shared locally to support people with dementia and their carers. The music and care network for people with dementia has now become a part of the general music and care world in Watertown (Figure 3). Together with other activities it evolves and helps carers and care-receivers in their daily life.

Conclusion

In this article, I have discussed the preliminary findings from the ethnographic research with “Singing for the Brain” in Watertown. In the discussion, three points were raised:

1. SFTB is an ecological practice within which many levels of relationships emerge and are nurtured and influenced by each other
2. SFTB has become an important framework for participants, that gives a variety of “spin-off” effects in the everyday care of the members with dementia.
3. Music and care pathways become resources for expanding a care network to support people with dementia and their carers, within which the simple act of singing and the mutual trust found in SFTB creates a strong node that helps hold the network together.

These findings discussed have a lot of overlaps with emergent discussions around community music therapy on several levels: “ecological practice” (e.g. Aasgaard, 1999; Stige et al., 2010), “spin-off” (Aasgaard, 2002), “network” (Wood 2006) and “pathways” (Ansdell & DeNora forthcoming)). My discussion on the many roles of the facilitator and volunteers of SFTB who keep alive the care network in Watertown will hopefully add to the recent discussions and other debates in community music therapy on the expanded role of music therapy. The detailed mapping of the music and care world of Watertown (figure 3) and the description of its interlinked networks and pathways will hopefully also help community music and music therapy practitioners to accommodate each other in fruitful ways in order to support local people with dementia and their carers.

With an increased interest in local musical projects that target people with dementia, the ecological perspectives, applied in this article, that explore the layers of multiple contexts and its connections (a number of relationships among the members, the connection with the everyday care and the connections with other local groups) rather than regarding the music project as an isolated phenomenon become important in order to gauge what musicking can afford on many levels. It is only when we go to the micro level and see what really happens in the participants’ everyday lives and communities that we can develop and support practical local efforts.

Acknowledgment

The author would like to acknowledge the reviewers for their constructive comments, and the members of Singing for the Brain for their generosity of time and energy in collaborating with this research.

Notes

[1] The Otoasobi Project (2005 to current) is a community music project initiated by graduate students in Kobe University Japan. Its members extend from people with learning difficulties, their family, local musicians and dancers to professional musicians. (See http://www.k3.dion.ne.jp/~rii/etoppage.html for further details)

[2] According to Stige et el., (2010, p. 303-304), “Music and health” is a contemporary theme, flourishing in many contexts. And in the British context, many musicians who used to define their work as “community music” now increasingly define it as “music and health”.

[3] SFTB is in the process of being standardized (e.g. formal specification are being drawn up (Alzheimer's Society, 2010), a reader’s guide is prepared (Alzheimer's Society, 2011) training programs are set up). In addition there has been a rapid increase in SFTB related activities responding to local needs around the UK. Although my description is restricted to the SFTB Watertown group based on my fieldwork in 2009-2010 (during the beginning of the process of standardization), the Watertown group is a good case study as it has become a successful example for other SFTB initiatives and it has also acted as a hub for new groups to launch in South West region.

[4] The names of locations and individuals have been changed to protect their privacy. A brief summary of key demographics is useful for the reader to contextualise the findings in this paper: Watertown is a historic town surrounded by countryside in the South West region of the UK. The population is approximately 120 thousand people, of which 18% is of pensionable age (female over 60 and male over 65). Unlike many other towns in the UK, Watertown is not particularly diverse city, approximately 95% of population is categorised as “White” (according to official statistics). Additionally, Watertown is within the region with the second highest per capita income in the UK (London being the highest).

[5] “The UK is witnessing the development of a Music and Health movement (a sub-set of a broader Arts and Health sector, legitimated by new government-level promotion of a new theoretical alliance between thinking n health, culture and social equity)” (Stige et al., 2010, p. 19).

[6] The “Memory Café” is a support group/activity where people can talk about small worries, take memory tests and are encouraged to socialise. “Be-friend” is a support programme where volunteers and staff spend a couple of hours by appointment with people with dementia and help them to achieve what they want to do in that time. In a pampering day, people can go out for an aromatherapy massage, etc. They also have an information line for people to call and talk about their worries, ask questions and find out what services are available for them. These activities complement and link with each other, for example the volunteers at one support group may help with other activities.

[7] An equal numbers of care-receivers, carers and volunteers in the group is considered ideal by the facilitator and volunteers.

[8] A carer can mean a care-receiver’s partner, family member, friend or paid carer.

[9] Easter bonnets are funny, extravagant hats, often homemade, worn in the UK around the Easter period usually in a specific setting such as a school competition for the “funniest hat”.

[10] The use of the concept “pathways’ in this article is inspired by Finnegan’s ethnographic study on the musical world of the town of Milton Keynes. Finnegan discusses that “musical pathways” include both personal networks and established groups, that realize local musical ‘worlds’ in practice (Finnegan 2007, p.307). She also argues that “pathways of music-making are not ‘natural’ ones that cut their own way through the bush, but were opened up and kept trodden by those who worked them” (Finnegan 2007, p.325), which is very apt for my own work.

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