Pilot Study of a Modular Music Intervention: A First Evaluation of the Use of Basic Elements of Music to Support Interaction Between Family Caregivers and their Relatives with Dementia

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Pilot Study of a Modular Music Intervention: A First Evaluation of the Use of Basic Elements of Music to Support Interaction Between Family Caregivers and their Relatives with Dementia

In plain language

It is often difficult for family caregivers of people with severe dementia to deal with the behavioural and psychological symptoms of dementia (BPSD) affecting their relative. These symptoms can lead to challenging situations in everyday life, which can be stressful. The modular music intervention MusicKit can be used in such situations. It aims to support contact and family ties, to make communication possible, and to support activities of daily living. In a training course, family caregivers can learn to use musical elements as a bridge to the inner world of their relatives with dementia. This article introduces the intervention MusicKit and shares the results of a pilot study. It was found that MusicKit can help people cope with challenging situations caused by BPSD. This can then improve quality of life.


Abstract

MusicKit is a modular music intervention, designed for application by family caregivers, to support challenging situations with people with severe dementia and associated behavioural and psychological symptoms of dementia (BPSD). The situational use of musical elements aims to support contact and family ties, enable communication, and support activities of daily living. This first evaluation of MusicKit investigated the effects of training for family caregivers (FCGs) that was intended to enable them to employ a new music intervention with their relatives with dementia. The research approach used was a combination of mixed method single case and mixed method survey research with two dyads. Standardised questionnaires (WHOQOL-BREF, QCPR) were used together with qualitative interviews. The participants were given two training sessions within a period of four weeks to prepare them to use the intervention with their relatives. The results suggest that this intervention, when used by family members of people with dementia, can be helpful in coping with challenging situations caused by BPSD and thus improve quality of life. Further research topics regarding the model of the modular music intervention are suggested.


Citation

Thurn, T., Voigt, M., & Wosch, T. (2021). Pilot study of a modular music intervention: A first evaluation of the use of basic elements of music to support interaction between family caregivers and their relatives with dementia. Australian Journal of Music Therapy, 32. Retrieved from https://www.austmta.org.au/journal/article/pilot-study-modular-music-intervention-first-evaluation-use-basic-elements-music


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Date published: April 2021

Introduction

     The incidence of dementia is rising continually. In 2019, the costs resulting from dementia were estimated to be $1 trillion worldwide (ADI, 2019) with almost 85% of these costs related to family and social care rather than medical care. These factors make it clear that the development and evaluation of caregiver-directed interventions is much needed. The aims of these interventions would include the improvement in wellbeing of both the persons with dementia and the caregivers. In turn, personal costs as well as the costs to society and healthcare could be reduced if the capacity of caregivers to deal positively with challenging situations in everyday life is enhanced. The Lancet Commission on Dementia (Livingston et al., 2017) suggested that pharmacological treatment of behavioural and psychological symptoms of dementia (BPSD) be reserved for those who show very severe symptoms. It pointed out that music therapy is a non-pharmacological intervention that can reduce BPSD. Enabling caregivers to use musical interventions in situations involving BPSD and evaluating the effectiveness of this approach offer an important contribution in terms of supporting the management of BPSD in everyday life.

     Caregivers who work with the elderly are often greatly challenged by the symptoms of severe dementia and associated BPSD (Abraha et al., 2017). BPSD can include verbal and physical aggression, agitation, psychotic symptoms (e.g. hallucinations and delusions), sleep disturbances, depression, oppositional behaviour and wandering (De Oliveira et al. 2015). These behaviours are reported to be more stressful for formal and family caregivers than the cognitive and functional challenges facing persons with dementia. This could be due to the capricious nature of BPSD (Ornstein, 2011). While the functional and cognitive skills of dementia patients follow an expected steady decline, the frequency and severity of behaviour problems can vary unexpectedly. This can leave the caregiver less prepared to deal with the behaviours adequately, causing feelings of helplessness and distress in families and formal caregivers. These feelings seem to be closely connected with poor quality of life (Abraha et al., 2017). The frequency and severity of BPSD have been shown to correlate strongly with caregiver burden, reducing the quality of life of both the persons with dementia and their caregivers (De Oliveira et al., 2015).

     Music therapy has been shown to be effective when employed by music therapists for alleviating observed BPSD. Whereas only small effect sizes are reported in a systematic review of pharmacological treatment of BPSD (largest mean ES=0.25) (Dyer et al., 2018), systematic reviews of music therapy treatment report large effect sizes (mean ES=1.04) regarding the reduction of behavioural symptoms of dementia through the use of music therapy (Vasionyté & Madison, 2013; Zhang et al., 2017). Small to medium effect sizes in the reduction of depression were found when group music therapy was used with patients with depressive symptoms of dementia (ES=0.49) (Werner et al., 2017).

     Abraha et al. (2017) investigated systematic reviews of studies using non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. Their publication provides a complete and up-to-date overview of non-pharmacological interventions using recently published systematic reviews and meta-analyses. The most promising interventions appear to be music therapy and some behavioural management techniques, particularly those involving caregiver-oriented and staff-oriented interventions. Reviews conducted by Raglio et al. (2012), McDermott et al. (2013) and Zhang et al. (2017) describe a significant decrease of BPSD when music therapy is used. The findings of these studies provide rationales for the use of aspects of music therapy by family caregivers when challenging situations caused by BPSD arise. Calming effects to reduce agitated or anxious behaviour as well as activating effects of music to affect apathetic or depressive mood can also be applied by family caregivers in their daily care routine (Vasionityté & Madison, 2013; Zhang et al., 2017).

     Interventions described for use by or with family caregivers of people with dementia contain qualitative and some quantitative outcome measures. A spousal caregiver-directed music intervention was employed to promote positive interaction between the family caregiver (FCG) and the spouse with dementia, and was investigated using a mixed methods design (Baker et al., 2012). The approach used was autobiographically oriented and included singing familiar/preferred songs, movement to well-known music, and listening to relaxing music. The single training sessions for the FCG took place at home. FCGs were trained by a certified music therapist in methods and strategies using music in the above-named ways to regulate agitation or apathy on their relatives with dementia. The music therapist also offered instruction in choosing music to engage in dialogues between the FCG and their relatives with dementia. The aim was to evoke autobiographical memories and share meaningful experiences. The quantitative measures used showed no pre-post differences regarding depression, anxiety, quality of relationship and satisfaction or positive aspects of the caregiver role.

     Two more studies, one qualitative study involving four FCGs (Baker & Yeates, 2018) and one controlled study with 14 FCGs using quantitative and qualitative measures (Baker et al., 2018) focused on providing FCGs with a strategy to help them cope with the difficulties caused by the symptoms of dementia observed in their relatives through the use of therapeutic songwriting. The quantitative measures in Baker et al. (2018) also showed no pre-post differences regarding anxiety, quality of relationship and satisfaction or positive aspects of the caregiver role with one exception. The authors of this study found a moderate effect size on depression in FCGs after participation in the group therapeutic program, but also a small effect size in the control group. However, positive effects of the interventions were found in the qualitative analyses of all three studies. These analyses yielded the following categories: feelings of enjoyment, enhanced quality of spousal relationship, increased satisfaction with the role as a caregiver, personal growth, increased coping, and the importance of meaningful musical actions (Baker et al., 2012; Baker et al., 2018; Baker & Yeates, 2018). None of the three studies contained measures regarding quality of life.

     In the field of music therapy theory, skill-sharing and the notion of indirect music therapy practice appears in recent literature. McDermott et al. (2018) describe the use of music and elements of music therapy in daily care by caregivers of people with dementia who have received appropriate instruction. Other examples of existing approaches are Music Therapeutic Caregiving (Brown et al., 2001; Götell et al., 2009; Hammar et al., 2010), Mit Musik geht vieles besser: Der Königsweg in der Pflege bei Menschen mit Demenz, [Much better with music: The royal road in the care of people with dementia] (Willig, 2012), Certified Nursing Assistant Training (Ray, 2017), and Person Attuned Musical Action in Dementia Care (Ridder et al., 2018). These approaches, developed for professional caregivers of people with dementia who live in care homes, may be transferable and adaptable to the home care setting. Also, family caregivers can use musical elements such as singing during morning care (Götell, 2009) or support ADLs with music (Willig, 2012).

Intervention: MusicKit

     The modular music intervention MusicKit, previously known as Musical Phrases, was developed based on information gathered by the author both in her clinical work and in teaching at a vocational school for geriatric nursing. BPSD was mentioned as the major challenge in the care of persons with dementia and positive experiences/responses provided through the use of music were frequently reported.

     MusicKit has its roots in developmental music therapy and in Orff Music Therapy.  Bruscia (1998) defined developmental music therapy as being appropriate for use with clients of all ages whose developmental growth is hindered in any way. In addition to being concerned with personal history, emotions, and personality development, this music therapy approach takes the family situation as well as physical and other medical problems into account. The needs of the client are the focus of attention, and procedures and goals must be adapted to meet these needs (Bruscia, 1998). Orff Music Therapy was developed within the medical field of Social Paediatrics as an approach to music therapy designed to support the development of children and youth with developmental disorders. Gertrud Orff began her work within this paediatric setting in 1970 (Orff, 1980; Voigt, 1999). Orff based her musical interventions on elements of Orff-Schulwerk. Through the use of elemental music combined with the phenomenon of play, a very broad range of musical activity could be adapted to the needs of all children, involving them actively in musical interaction regardless of the severity of the developmental disorder (Orff, 1980).   Bruscia classified Orff Music Therapy as developmental music therapy (Bruscia, 1998).

     One important aspect of the definition of developmental music therapy with regard to MusicKit is the consideration of the family situation. In recent years, music therapists working with children in a variety of settings have recognised the importance of including family members, especially parents, in therapy (Oldfield & Flower, 2008). Qualitative studies regarding parents’ perspectives on music therapy have also been carried out (Annesley et al., 2020). Parents can help the therapist understand reactions and expressions of the child. Therapists can support parents and families in many ways. For example, possibilities for positive interaction between parents and child can be developed in cooperation. Parents can be helped to recognise the strengths that their child has without negating the challenging aspects of the developmental disorder. Also, the support of parental competence, especially in dealing with difficult behaviours, can be an important aim of music therapy (Oldfield, 2006a, 2006b; Thompson, 2014; Voigt, 2002, 2013, 2018). In the area of geriatrics, Ridder (2019) stresses the importance of supporting “positive experiences between family members and individuals with dementia” (p. 314) in order to influence the relationship in a positive way. The possibility of supporting formal caregivers using musical elements to communicate with the person being cared for is mentioned. Beer (2017) discusses the training of formal caregivers in the use of vocalisations, sounds and movements of the clients to support communication and interaction. Although Ridder and Beer refer to formal caregivers only, the use of musical elements for communication by family caregivers might also be possible.

     Another very important aspect of the definition of developmental music therapy is the emphasis on the needs of the client. The use of responsive interaction can be helpful here. The responsive interaction used in Orff Music Therapy begins with the recognition and acceptance of the developmental needs, interests and initiatives of the client. When support is necessary, it builds on this foundation. During the interaction, the therapist introduces new suggestions for activities of musical play involving the client. The intention is to help the client deal with a difficulty and to interact positively with the environment, moving on to the next level of development (Orff, 1980; Voigt, 1999). In order for this interaction to be supportive, it needs to contain coherence (structure, repetition, rituals - musical elements and actions understandable for the client), synchronicity (meeting the client at his level, mirroring his feelings, state of being with words or music) and reciprocity (interpretation of actions and vocalisations as communication with responses in this sense) (Plahl, 2000).

     Responsive interaction as described above is also used in MusicKit. The current emotional state and the cognitive abilities of the person with dementia serve as the starting point for the intervention. A simple musical stimulus that involves the client actively is then introduced in order to help the client to deal with a situation that is difficult for them. This responsive interaction can be helpful in dealing with challenging situations and reducing challenging behaviour, at least for a short time, by providing a more positive interaction between the caregiver and the relative with dementia.

A woman caring for her life partner living with frontotemporal dementia asked if it would be possible to use MusicKit to manage uncontrolled eating during meals. Together, we developed the following German rhyme: “Jawoll, Jawoll, der Bauch ist voll! [Yes, yes, the stomach/belly is full]”. At first, she (the caregiver) sat close to him, tapping the rhythm of the verse on the table and repeated it a few times. Then, she cleared the table in passing and in the end, again sitting close to him, she stroked his stomach while repeating the verse gradually becoming quieter and slower. In this way she avoided using phrases like “Stop eating!”, “You’ve had enough!”, “It is not good for you!” and “You must not eat anymore!”.

     This example shows a type of musical validating interaction which can affect the person-caregiver relationship in a positive way.

     MusicKit is a low-threshold approach based on an elemental principle and contains modular elements. Low-threshold refers to the fact that MusicKit requires no musical education or previous experience such as reading music or playing an instrument in order to be used. Moreover, no additional preparation time (e.g. learning and memorising complex tunes or songs) is required before direct application. The intervention can be integrated in daily care and everyday situations spontaneously and directly in order to support activities of daily living and to alleviate challenging situations with the help of music. Elemental principle means that the use of MusicKit arises from the specific situation and uses current parameters (e.g. affects, emotions, needs, biographic information or requests from caregivers) as its base for implementation. These parameters are musicalised by caregivers using modular musical elements. MusicKit consists of modular musical elements from the areas of rhythm (accentuation, beat, speech rhythm, acoustic impulse), voice (humming, singing, narrating, timbre), lyrics (syllables, words, rhymes, texts), movement (clapping, rocking, dancing, walking), musical parameters (volume, tempo, pitch) and multi-sensory perception (hearing, scent, vision, taste, touch, activating objects).

     The elements can be applied like building blocks in a kit (Figure 1). Two or more elements can be used for an intervention. MusicKit is situation-oriented and is built on early childhood multisensory musicalisation using elemental music. Elemental music includes the unity of speech, rhythm, movement, melody and handling instruments and is thus innately multisensory (Orff, 1980). Transferred to the caregiving context, activities and requests can be set to music, offered in an elemental way, and include multisensory perception to support interaction through coherence, synchronicity and reciprocity as described above.

Figure 1. MusicKit: Modular Elements    

Figure 1. MusicKit: Modular Elements

     Figure 2 shows the mode of action of MusicKit. BPSD can cause challenging behaviour in people with dementia that often leads to challenging situations for caregivers. In these situations, activities of daily living and daily care can become difficult for the family caregiver to provide. When the caregiver uses the elements of MusicKit in challenging situations that affect the care of people living with dementia, they may experience contact and connection through their musical interaction. Furthermore, communication between the caregiver and the person with dementia may be enhanced. Additionally, the orientation of the person with dementia to the environment may be improved. By enhancing the connection between the person with dementia and his family caregiver within the here and now, an additional effect of improved quality of relationship may be experienced.

Figure 2. MusicKit Interaction Model 

Figure 2. MusicKit: Interaction Model

     Family caregivers need instruction and practice in order to interact in a new musical way. In training, they can learn how to use MusicKit in their everyday interaction with their family members with dementia. The intervention takes place in the specific situation, oriented to the needs and capabilities of the person with dementia. This intervention can be delivered in any challenging situation caused by BPSD during daily care to bypass, mitigate or solve the situation. No preparation time is needed in order to use MusicKit. It is not necessary to learn and memorise complex tunes or songs. An example of the use of these principles is the intervention ‘Stand up’, described below.

As a result of a decline in cognitive functioning, a person with dementia is unable to go from place A to place B. To address this, the caregiver sits down next to him, touches his arm, puts his forearm under the forearm of the resident, so that his upper arm is behind the resident’s upper arm. Together they rock a few times forward and back. During a forward movement the caregiver starts singing clearly: “We will, we will stand up!” (melody: ‘We will rock you’). While singing, they move forward-back-forward-back-forward. With the last forward movement, the caregiver gently encourages the person with dementia to move forward with his shoulder and upper arm, helps him to come up with his arm, and together they stand up.

     The example above shows how combinations of musical elements in small situational songs or chanted requests can be used in a functional way to affect challenging situations in daily care of people with dementia. Here, a tune known to the family caregiver was used (low-threshold). The request to stand up was sung by the caregiver (elemental principle) in combination with movement and touch (modular elements). The rhythmic structure and the ritualised interaction created a coherent framework of action. The playful component of the simplicity of the musicalised request which was adapted to the perception capabilities of the person with dementia enabled a synchronous relationship. This could lead to a reciprocal verbal or non-verbal dialogue and interaction. The modular elements used in this example are shown in Figure 3.

Figure 3. Modular Elements Used in the Intervention ‘Stand up’

Figure 3. Modular Elements Used in the Intervention ‘Stand up’

     When compared to Baker et al.’s approach (2012), MusicKit is similar with regard to preventing and solving challenging situations caused by BPSD. However, different methods are employed. Firstly, the group training sessions in MusicKit for the FCG take place in an institution, not at home. Secondly, instead of using familiar songs or familiar music as described in the literature mentioned above, MusicKit contains situational songs or chanted requests. These are spontaneously created by the FCG for use in a challenging situation. It is thus unique in its spontaneous use of musical elements based on the individual situation of the person with dementia to meet the activity of daily living of the moment. This characteristic makes it possible for caregivers to use a flexible and modular musical intervention spontaneously to meet the individual needs of their relatives by using musical elements. In addition, MusicKit might provide a valuable contribution to the much-needed development of more operationalised and transferable concepts for family caregivers.

Method

     The pilot study described below was planned initially as a qualitative sub-study of a randomised controlled trial (RCT). The RCT was not carried out due to withdrawal of one day care centre and the recruitment of only two couples through the regional non-profit organisation for family caregivers HALMA e.V. Ethical approval was not required for the two cases of our pilot study. The intervention was integrated into the art-and-dementia-actions of HALMA e.V. in cooperation with our university. Confirmation for the intervention protocol and study protocol of our pilot study was given by HALMA e.V. Written consent for data collection and GDPR data protection was given by both participants of the pilot study.

     The aim of the pilot study was to investigate the effects of MusicKit on the domestic care of people with dementia. The main objective of the research regarding this new intervention was the measurement of possible changes in the quality of life of the family caregiver and of the quality of relationship of the family caregiver with his or her family member with dementia when using the MusicKit.

Hypotheses and Research Design

The following hypotheses were formulated for the pilot study: the implementation of the interventions based on MusicKit will result in the improvement of quality of life of the family caregivers; and the implementation of the interventions based on MusicKit will result in the improvement of quality of relationship for the family caregivers. The research approach used was a combination of mixed method single case (Ridder & Fachner, 2016) and mixed method survey research (Curtis, 2016) and included standardised questionnaires and qualitative interviews. The impact of the intervention on quality of life and quality of relationship for the family caregivers was measured in a pre/post-design using the questionnaires WHO Quality of Life - BREF (WHOQOL-BREF) (Conrad et al., 2016) and Quality of Caregiver-Patient-Relationship (QCPR) (Spruytte et al., 2002). In addition, a qualitative interview was conducted before and after the intervention. The pilot study team consisted of the project leader, one interventionist and two assessors. The interventionist developed and provided the interventions, the two assessors collected data with the questionnaires and interviews listed above. One of the two assessors analysed the interviews while the project leader analysed the data of the questionnaires and of the results of the qualitative interview mentioned above.

Participants

One hundred and twenty dyads were invited to participate, four signed up and two of these dropped out, so a control group could not be selected. The two female participants were between 50 and 60 years of age. The participants had the possibility of bringing their relatives with dementia with them. These people were looked after by specially trained volunteers of HALMA e.V. Würzburg (Germany).

Procedure

The intervention for the family caregivers who took part in the project consisted of two sessions held within a time period of four weeks. The intervention was structured as follows:

First session:

1. Questionnaires (WHO QOL-BREF, QCPR) and pre-interview

2. 2.5 hour workshop MusicKit for family caregivers

Second session, four weeks later:

1. 2.5 hour MusicKit workshop for family caregivers

2. Questionnaires (WHO QOL-BREF, QCPR) and post-interview

     During the first session, participants became acquainted with each other and experienced music and its impact actively (singing, dancing, body percussion, listening to music). The caregivers received theoretical and practical information about the meaning and impact of music as well as possibilities for using it in daily care for and with their relatives to ease challenging situations caused by BPSD. After a theoretical introduction to the concept, they became acquainted with MusicKit in practice. Short interventions for different daily situations were practiced in role plays, and the participants learned how to create interventions for their own personal challenging situations with their loved ones.

     The second session began with tuning in musically as in session one. This was followed by the repetition of the exercises from MusicKit. Additionally, the family caregivers shared experiences regarding the application of both the learned interventions and interventions they created themselves during the past weeks.

Measures

     The WHOQOL-BREF (Conrad et al., 2016) consists of one overall category of quality of life and four further categories of quality of life: physical health (6 items), psychological quality of life (6 items), social relationships (6 items), and an environmental category (6 items). Physical health includes the impact of health conditions on independent living. Psychological health includes self-esteem, emotions and cognitive skills. Social relationships includes relationships and circle of friends, while environmental quality of life includes living environment, availability of financial and support services, and leisure activities. Respondents used a 5-point Likert scale to complete each item. Total scores for the four categories were calculated through SPSS or STATA using the algorithms of the CD-Rom attached to the questionnaire WHOQOL-BREF (Conrad et al., 2016).

     The QCPR (Spruytte et al., 2002) consists of two categories: positive quality of relationship (8 items) and negative quality of relationship (6 items). Respondents used a 5-point Likert scale to complete each item. The total score for positive quality of relationship is calculated through the mean of all numbers. The total score for negative quality of relationship is calculated through the mean of all numbers reversed (e. g. 5=1, 4=2 etc). Quality of life and quality of relationship were also measured using a qualitative interview designed as an interview-based survey in person.

     Jochmann’s guided interview (2018) is based on the problem-centered interview by Witzel (2000) and contains both questions to generate further knowledge plus knowledge and theory-based questions regarding the objectives of the study, thus supplementing the standardised questionnaires (WHOQOL-BREF, QCPR). The guideline for the interview for pre-data collection contained questions concerning the conditions of home care, autobiographical musical experiences and musical skills of the family caregiver and their relative with dementia, as well as wishes of the family caregiver regarding everyday life. The guideline for the interview for post-data collection contained questions regarding the application of the intervention, the impact of the intervention on the relative with dementia and the family caregiver, their relationship, and the caregiver’s wishes for future.

     The analytic process of the qualitative interviews included three steps. First, an inductive method based on the Text Analysis Method for Micro Processes (TAMP) (Ortlieb et al., 2007) was employed. Second, a deductive method of content analysis (Mayring, 2015) was used. Third, a comparison of all findings of the structured content analysis and of TAMP was carried out (Jochmann, 2018). These steps along with their respective purposes can be seen in Table 1.

Table 1.

Evaluation Process Guided Interview (Jochmann, 2018)

Step of Analysis

Method Used

Purpose

1

Modification of Text Analysis Method for Microprocesses (TAMP) (Ortlieb et al., 2007): Steps 3-4; 6-7

Detection of additional relevant categories that would not be considered in the structured content analysis

2

Deductive method of content analysis (Mayring, 2015): steps 2-6; 8

Identification of remarks regarding:

  • Burden of care of FCG - Challenging situations in daily care and means of dealing with challenging situations

  • Musical experience in home care

  • Use of Musical Phrases (MusicKit) in home care

  • Effect mechanisms of MusicKit

3

Comparison of results of both analyses

Identification of similarities and differences between results of the two types of analysis in order to determine the final results

Results

Results of the Questionnaires

     The scoring of the standardised questionnaires yielded the following information regarding quality of life of these two individual cases of family caregivers. The thresholds determined by Conrad et al. (2016) for the scoring of the WHOQOL-BREF based on age and sex of the participants were used (Table 2).

Table 2.

Thresholds for Affliction of Quality of Life (Conrad et al. 2016)

Degree of Affliction

Categories of Quality of Life (QoL) of WHOQOL-BREF

 

Overall QoL

Environmental QoL

Social relationship QoL

Psychological QoL

Physical QoL

None

75

81.2

75

83.3

85.7

Mild

62.5

75

66.6

75

75.8

Middle

50

62.5

58.3

62.5

57.14

Severe

37.5

50

41.6

41.6

35.7

     FCG 1 showed no negative effects regarding the overall quality of life before or after the intervention (scores 87.5 pre and post). In spite of this, the four specific categories of quality of life were scored as mildly to severely affected (physical health: 75; psychological health: 58.33; social relationship: 41.67; environment: 71.88). An increase in physical health (85.71) and especially an increase in the psychological quality of life (79.17) can be seen in the post-intervention scores of the questionnaire.

     FCG 2 showed a severe affliction in the score of overall quality of life before the intervention (37.5). This degree of affliction decreased after the intervention, resulting in a quality of life that was averagely affected (50). A slight increase in the psychological quality of life can be seen also for FCG 2 following the intervention (62.5 before, 66.7 after intervention). A small decrease in the environmental quality of life can be seen for both FCG 1 (71.88 pre; 62.5 post) and FCG 2 (68.75 pre; 62.5 post). The category of environment consists here of the financial situation, support by professional care, participation in leisure activities and recreation and mobility conditions. The outcomes for quality of life for both family caregivers with WHOQOL-BREF can be seen in Figure 4.

Figure 4. Outcomes of WHOQOL-BREF of FCG 1 (pre1, post1) and FCG 2 (pre2, post2)

     The quality of relationship measured by the QCPR remains stable for FCG 1 before and after the intervention with a high positive quality of relationship (pre and post 4.375) and a low negative quality of relationship (pre1.5; post 1.4). Changes can be observed for FCG 2 with regard to these categories. The positive quality of relationship increased from 2.5 pre to 2.875 post intervention. This is supported by an individual middle effect size (Cohen’s d, d=0.5). The negative quality of relationship decreased from 2.5 pre to 1.83 post intervention. This is supported by an individual high effect size (d=-1.08). The outcomes for quality of relationship for both FCGs using QCPR can be seen in Figure 5.

Figure 5. Outcomes of QCPR of FCG 1 and FCG 2

Results of the Qualitative Interviews

     Jochmann’s (2018) content analysis of the qualitative pre and post interviews yielded 20 categories in the pre-interviews and 37 categories in the post-interviews. The categories were determined using inductive principles of categorisation (Ortlieb, 2007) and deductive principles of coding (Mayring, 2015). The resulting categories included descriptions of the everyday situation of the FCGs and their relatives as well as information regarding the meaning of music and of the intervention MusicKit for quality of life and quality of relationship. The results showed that overload, burn-out, impaired functioning, lack of coping strategies and negatively affected leisure time activities were reported by the family caregivers in the pre-interviews (Table 3). Moreover, musical experiences were part of the autobiographical experiences of the family caregivers in the pre-interview. However, they had not used musical experiences in everyday life with their relatives with dementia up to that time.

Table 3.

Results of Pre-Intervention Interviews (Jochmann, 2018)

Situation of Interest

Pre-Intervention Interview

 

Example Quotes Pre-Intervention

Everyday Experiences

Job change to ensure the care of the relative

 

I chose the job so that I can carry out the care

Ich habe den Arbeitsplatz gesucht, damit ich das [Pflege] machen kann (p. 93)

 

Burn-out

Overload

Because I was so ill. I call it burn-out

Weil ich so doll krank war. Ich bezeichne es mal als burn-out (p. 93)

 

Negative effects on leisure time activities

 

I haven’t been able to practice for a long time (saxophone)

Ich bin schon ewig lange nicht mehr zum Üben (saxophon) gekommen  (p. 90)

 

Negative emotions

 

I really would like to have my life back

Ich hätt schon ganz gern wieder mein Leben zurück (p. 86)

 

Less patience with the behaviour of the relative with dementia

Seldom violence

Lack of coping strategies

I don’t like to say it. I have hit him on the cheek sometimes, right and left

Sag ich jetzt nicht gern. Ich habe ihn zum Teil auch schon geschlagen, auf die Wange rechts und links (p. 107)

Of course, I am not happy about my behaviour

Natürlich bin ich nicht froh über mein Verhalten (p. 89)

Music and its Use

Music as part of autobiographical experience


 

No use of music with relative with dementia

He played piano as a child and also played guitar

Er hat als Kind Klavier gelernt und hat auch Gitarre gespielt (p. 90)

Now I have a piano at home and he really sits down at it

Jetzt steht da ein Klavier bei mir zuhause und da setzt er sich richtig ran (p. 86)

And I somehow can’t do it with him at the moment

Und ich krieg`s jetzt auch im Moment schlecht auf die Reihe mit ihm zusammen (p. 109)

 

     In the post-interview (Table 4), family caregivers gave positive feedback regarding the use of the music intervention and its feasibility. They experienced relaxation, calming effects and shared enjoyment with their relatives with dementia in everyday life. Both family caregivers wished to have more training sessions than the two that were offered.  Furthermore, both described the impact of music interventions as a form of self-care, and they reported experiencing a positive living environment (positive “atmosphere”) through the use of music. In the pre-interview, a feeling of overload and burn-out had been described. In the post-interview the FCGs reported experiencing a feeling of relaxation, showing an improvement in these areas (Jochmann, 2018).  However, the participants reported that the frequency of two training sessions was not enough and requested additional sessions.

Situation of Interest

Post-Intervention Interview

 

Example Quotes Post-Intervention

Everyday Experiences

Relaxation

Positive living environment (positive “atmosphere”)

Shared enjoyment

Autonomy and resources of the relative with dementia

 

At the end it comes down to living together in a more satisfactory way

Am Ende ein zufriedeneres Zusammenleben, für mich offensichtlich ist (p. 280)

More serenity comes into play and because of that, there is not this kind of tension

Es kommt mehr Gelassenheit ins Spiel und dadurch nicht diese Spannung (p. 139)

Music and its Use

Feasibility of the employment of the intervention

Calming effects through the use of music

Self-care for FCG

Wish to continue training

It is something obvious, that you do not quite discover by yourself

Manches habe ich festgestellt, dann macht man instinktiv, aber nicht so in diesem Ausmaß (p. 110) 

To bring text and tune together, so that it is simple and catchy

Text und Melodie, die zusammenzubringen, dass es einfach und eingängig ist (p. 143)

Discussion

     The first hypothesis regarding the improvement of quality of life through the use of MusicKit was not confirmed by the results from the questionnaire (WHOQOL-BREF). No effect sizes were found. One reason for this result could be that the intensity and/or timeframe of our intervention were too small to affect the quality of life of family caregivers. However, the outcomes in one category of WHOQOL-BREF (psychological quality of life) and of the categories resulting from the classification process used in the qualitative analysis of the post-interviews of family caregivers show tendencies that may contribute to future research regarding quality of life.

     The largest increase of measures in the WHOQOL-BREF (FCG 1 58-79, Figure 4) suggests a tendency toward improvement in the psychological quality of life. The qualitative analysis described in measures was used to classify both family caregivers’ post-intervention interviews. This classification yielded the following categories: relaxation, calming down, having fun as well as reduction in feeling the burden of care (Jochmann, 2018). These categories correspond to subcategories of the main category psychological quality of life in the WHOQOL-BREF. The first three categories named above correspond to the sub-categories psychological wellbeing and positive feelings. The post-interview category reduction in feeling the burden of care corresponds to the subcategory negative feelings. The classification of the pre-intervention-interview of FCG 2 yielded a category feeling of decreased concentration. This result corresponds to the subcategory of concentration in the main category psychological quality of life of the WHOQOL-BREF. However, in the post-intervention interview FCG 2 did not report a feeling of decreased concentration. For this reason, the classification of the post-intervention results for FCG 2 did not yield this category.

     Future research should increase the frequency of interventions for family caregivers to provide more than two training sessions. Also, the period of time in which the intervention is applied should include more than four weeks in order to provide a basis for determining effects on quality of life. Measures of quality of life should focus on psychological quality of life, i.e. on its subcategories of wellbeing, of positive feelings and of negative feelings. For sufficient and differentiated findings regarding psychological quality of life, qualitative interviews should complement the measures. This supports mixed method research. This type of research includes both qualitative and quantitative research methods such as those used in the investigations by Baker et al. (2012), Baker et al. (2018), and Baker & Yeates (2018) regarding music interventions for family caregivers.   

     The second hypothesis of the pilot study regarded the improvement of quality of relationship as measured with QCPR. This hypothesis was confirmed only for the dyad showing a negatively scored relationship between the FCG and the family member with dementia in the pre-intervention measurement. The results in the post-intervention measurement showed a definite increase of quality in this category (d=1.08). A moderate effect in increase of positive qualities of relationship and a large effect in decrease of negative qualities of relationship were measured (Figure 5, FCG 2). The quality of relationship of the other dyad showed no distinct differences. The qualitative analysis of the pre and post-intervention interviews confirmed these outcomes.

     In the analysis of the post-intervention interviews, acting in a musical way was shown to have a double effect. Positive feelings, psychological wellbeing and a relaxed and good relationship for both the person with dementia and the caregiver were reported. Moreover, the categories identified in the post-intervention-interviews (i.e. the autonomy and resources of the relative with dementia, and the experience of a positive living environment through the use of music) relate to the increase of quality of relationship between the FCG and their loved one living with dementia as measured in the QCPR. The quantitative and qualitative measures of our pilot study identify the highest effect of the intervention MusicKit on the quality of relationship for family caregivers who show low positive and high negative qualities of relationship before intervention.

     In the context of previous findings of research on music therapy for family caregivers, our pilot study corresponds to the effects reported regarding quality of relationship and “music enhanced enjoyment and relaxation” (Baker et al., 2012, p. 12). Baker et al. (2012) and Baker et al. (2018) found no relevant pre-post difference in quality of relationship. Contrary to this, we have a single case finding showing a moderate to large effect on quality of relationship. This result may be connected to an impaired quality of relationship (low positive and high negative quality of relationship) before intervention, or it may be connected to the effects of the intervention MusicKit. The effect of music therapy regarding depression in family caregivers (Baker et al., 2018) corresponds to the results of our qualitative analyses. These show an increase of positive feelings, psychological wellbeing and a decrease of negative feelings in the psychological quality of life. Finally, the increase in coping reported in the qualitative analyses of Baker et al. (2012) and of Baker and Yeates (2018) is also confirmed by the results of our qualitative interviews regarding coping strategies of family caregivers that were developed through the use of music.

Limitations and Future Directions

     Because of the small number of participants, the results cannot be generalised to the total population. One reason for the very small number of participants might be the fact that the study took place in a university setting. It may be challenging for family caregivers to organize the care for their relatives with advanced dementia during the time of the training. Using the care offered at the university might also be challenging as it is difficult to come to an appointment at the correct time with a person with advanced dementia, and the family caregivers could be afraid that their relatives would not feel comfortable with the care situation available at the university. One suggested solution could be offering more detailed information about the spatial and personnel situation for the relatives with dementia during the MusicKit training. Another solution could be to conduct the training at the home of the person with dementia or in another setting with which both the caregiver and the person with dementia are familiar (e.g. a respite centre). Two German projects for FCGs that took place in the homes of the families reported no recruitment problems: Haus-Musik (Muthesius, 2011) and Klangbrücken (Weymann & Auch-Johannes, 2011). Moreover, the recruitment problems of our setting, providing MusicKit for FCGs in an institution, also led to the recommendation of a home-based setting for trainings for FCG and their relatives living with dementia in the ongoing HOMESIDE-project (Baker et al., 2019). If the results of recruitment in the HOMESIDE-project confirm the recruitment success of the two German projects mentioned above, then the home-based setting should be applied also as a setting for MusicKit for FCGs in the future.

     In the post-interviews, it was highlighted that two sessions may not have been sufficient time for participants to gain a sense of competence in the application of MusicKit. The participants confirmed the feasibility of the MusicKit intervention and described its usefulness and support in daily care. However, they reported not having enough time in training to feel secure in the use of the intervention. This suggests that a longer period of time for training could improve the empowerment of the FCGs and additionally yield more reliable results for the use of the intervention in everyday life.

     The investigation of MusicKit training focused only on the effects of the intervention in dealing with challenging situations between the FCGs and their relatives with dementia in everyday life as well as the effects of this on psychological quality of life and quality of relationship. Because MusicKit training also includes information about dementia, BPSD, validation and the impacts of music as well as training in the use of the intervention itself, the FCGs may have experienced a change in perspective regarding their individual situations with their relatives with dementia. This change in perspective may have affected the responses of the FCGs. The findings of the study would be more exact and comprehensive if the investigation had included measuring the effects of the combination of building knowledge as well as the use of the intervention in daily care. Therefore, in addition to lengthening the time for training, the measurements must be revised to include a differentiation of the effects of the intervention, knowledge, and change of perspective in the FCGs.

     Studies with more participants are necessary in order to measure the effectiveness, further development, revision and refinement of MusicKit. A randomised controlled trial with a higher number of participants is needed to achieve reliable results regarding the primary question of this pilot study as well as questions arising through the limitations of the present study discussed with regard to the improvement of quality of relationship and psychological quality of life.

Implications

     The training for the use of MusicKit by family caregivers contained psycho-educational information about dementia as well as instructions for the musical intervention itself. According to Mühlig and Jacobi (2011), psychoeducation is not a separate therapeutic approach but represents a component within a larger intervention concept of therapy that uses systematic communication. It aims to inform patients and/or family members regarding diagnosis and specific information about a condition, principles of intervention and relevant information regarding therapy understanding using the systematic communication of information. Additionally, it aims to support the development of competencies in dealing with challenging aspects of the condition. Medical guidelines in Germany recommend psychoeducation of FCGs of adults in general (DEGAM, 2018) as well as for FCGs of persons with dementia (DGPPN & DGN, 2016). The fact that the present study did not include an investigation of the effects that the information about dementia may have had on the perspective of the caregivers has been identified as a limitation of this study. A multi-branched study comparing the effects of the implementation of the intervention of MusicKit with and without the use of additional psychoeducational information in FCG-training could provide a better understanding of what might be necessary for the further development of the training content of MusicKit. This could, in turn, lead to a better empowerment of the FCG for dealing with difficult situations.

     Training in a music-based intervention to manage challenging situations in daily care for caregivers, carried out by a music therapist, can support FCGs to “strengthen their relationships with people with dementia and help them further develop their self-awareness and sense of competence” (McDermott et al. 2018, p. 2). Ridder describes the possibility of a “change in the culture of care” (p.7) when music therapists offer knowledge-sharing and indirect music therapy practice for caregivers in order to assist them in using music with the person with dementia in daily care. Practice, experiments and repetitions are needed in order to achieve safety in application as well as to acquire the competence to develop one’s own musical interventions. Cross-professional dialogues are necessary to achieve Ridder’s idea of a “change in culture of care” (McDermott et al., 2018, p.7). This implies the necessity for the further development of caregiver training in general, using music creatively to establish contact and interaction, and to improve the quality of relationship between the caregiver and the person with dementia. McDermott et al. (2018) recommend “further specialisation to be prepared to take on this expanding role” (p. 18). Competencies in skill-sharing should be taken into account when developing training for professional music therapists.

Conclusion

     This study reported on the pilot of an innovative intervention, MusicKit. Family caregivers of people with dementia learned to create their own musical interventions from musical modules that were adapted to meet the individual care situation and to support activities of daily living. MusicKit training for caregivers also included psychoeducational information about dementia. Findings suggest that MusicKit holds promise for supporting caregivers’ quality of life and improving impaired relationships with the person with dementia that they care for. MusicKit may provide a valuable contribution to the much-needed development of more operationalised concepts of the flexible use of musical resources by family caregivers in activities of daily living.

Funding

This research was funded and supported by the Federal Ministry of Education and Research of Germany (grant number DAAD57319398), Sparkassen Stiftung Wuerzburg (Saving Bank Foundation Wuerzburg, Germany), Alzheimer’s Society Wuerzburg / Lower Franconia (Germany) and Halma e.V. Wuerzburg (Germany).

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