Design
This study was a part of an effectiveness-implementation cluster randomized clinical hybrid trial (ClinicalTrials.gov Identifier: NCT03575026) to evaluate the effectiveness and implementation of a music-with-movement intervention for enhancing the well-being of both people with dementia and their informal caregivers. The data collected from the volunteers were analyzed to address the research objectives. This study is reported according to the Transparent Reporting of Evaluations with Nonrandomized Designs (TREND) guideline (30).
Participants and setting
This study was conducted in the community in Hong Kong. Participants were recruited through convenience sampling by the seven partner organizations and through an institute of the University that consists of 4,000 senior members. The seven partner organizations provide elderly services (n = 4), women’s services (n = 1), mental health services (n = 1), or general social services (n = 1).
The criteria for the inclusion of participants were (1) aged 18 and above; (2) physically stable to pay home visits; (3) able to speak Cantonese (a major dialect in Hong Kong) and write Chinese; and (4) without cognitive impairment or psychiatric illness. Those who could not commit to volunteering for families of people with dementia without pay for at least six months were excluded.
Training and enrichment workshops
Five 2-hour mandatory workshops and ten enrichment workshops were arranged for all the recruited participants and were conducted in the University. Each session had around 15 – 20 participants, and they were provided with the intervention manual and teaching handouts. The first workshop was provided by the first author. That included an orientation of the parent study (i.e., the effectiveness-implementation cluster randomized clinical hybrid trial using a music-with-movement intervention to promote the well-being of people with dementia and their informal caregivers), knowing one’s peers, and general knowledge about dementia. The volunteers learned to identify the symptoms of cognitive impairment, to differentiate between normal aging and cognitive impairment, communication skills and activity leading skills, and to provide initial management when there were behavioral and psychological symptoms of dementia. In particular, building rapport with clientele was emphasized. Because the volunteers were required to provide both a center-based and a home-based music-with-movement intervention, the project team discussed with the volunteers the possible problems that they might encounter, such as a refusal on the part of the client to open the door for the participants to enter because the client might have forgotten the appointment or be afraid of strangers, the inability of clients with cognitive impairment to follow the conversation, poor home hygiene, and other problems. Case scenarios were shared and discussed to facilitate reflection and problem solving among the participants.
Because the volunteers were required to provide music-with-movement interventions to people with dementia (protocol modified from (31), they received training in the relevant practical skills. In the other four workshops conducted by a registered music therapist, the first hour was conducted with around 3 – 5 staff working in the partner organization. The participants played a role similar to that of the clients, in that they received music-with-movement interventions led by the staff. The second hour focused on the theoretical and practical knowledge related to music-with-movement interventions, and the skills required to lead the activities. Two music-with-movement activities were taught in each workshop. It covered the choice of music genres, safety measures, movement, props to be used, etc.). The details can be found in the published E-book: https://lihi.cc/XItEY, which introduced music-with-movement activities suitable to people with dementia. Throughout the sessions, the registered music therapist integrated the skills involved in communicating and empathizing with people with dementia and regularly reinforced them. For example, if the client did not respond to the instructions that were given, this might be an indication of limited verbal comprehension, or of a need for more time to respond, but not of poor attitude; the participant might then need to rephrase the instruction. This kind of information may help the participants to understand the symptoms of cognitive impairment and may lead them to adjust their preconceptions.
At the end of the five sessions, volunteers were assessed by the music therapist and research team through return demonstration to ensure they were competent. The assessment components consisted of skills in delivering music-with-intervention to people with cognitive impairment (for example, choosing music genre, matching movement to the music, and safety measures); and communication skills (such as speaking speed, clarity of instruction, friendliness, and techniques to lead activities). Those who attended at least 80% of the training sessions and who passed the assessments were recognized as qualified.
Apart from the mandatory training workshops, 10 enrichment workshops were held for all volunteers during the one-year period of the project. No additional assessment after these ten workshops were deemed necessary, as this was the strategy for engaging the volunteers to support the project continuously. The topics of these enrichment workshops were suggested by the volunteers and partner organizations (see Appendix I for workshop details), and were held as listed below:
- Neuropsychiatric symptoms of dementia and the sharing of volunteer experiences
- Interior design principles of a home for people with dementia
- A mindfulness-based intervention for caregivers
- Stretching exercises
- Reminiscence for older people with dementia
- Emotional support to caregivers
- Zen drawing for stress reduction
- Site walk: Technology for older people with dementia
- Breathing exercise
- Mental health
Instant messaging had been proved to empower the team and facilitate knowledge sharing in a workplace that heightened team performance (32). We anticipated volunteers might share a commonality of interest. Therefore, instant messaging groups (using WhatsApp) were formed to facilitate support by the project team (including the music therapist) and center staff to volunteers. Each partner organization was a unit of the chat group.
Voluntary services to families with people with dementia
After the volunteers had received the five sessions of training and satisfying the assessment criteria (i.e. the skills in delivering music-with-intervention to people with cognitive impairment; and communication skills), arrangements were made for them to meet in the center the families that they were to serve. There were no restrictions on how frequently they should contact the families, but it was recommended that they visit the home of the families at least once a month during the 24 weeks of the intervention program. Two volunteers were paired up and assigned to serve one or two families. During the home visits, the two volunteers were expected to deliver the 30 – 45 minutes music-with-movement intervention to the clients with cognitive impairment, and to communicate with the family member to solve problems related to the intervention. The music-with-movement intervention consisted of four to five designed music activities, such as tapping the feet with music and singing (31). During these visits, the volunteer also observed the people with dementia and the family’s interaction, and helped to address questions from the families, if any, on the areas that they had been trained to address.
The volunteers were also required to assist the staff members in providing four center-based music-with-movement interventions in the first 12 weeks, for three purposes: (1) to assist the staff in the activities; (2) to observe the professional interaction between the staff members and people with cognitive impairment and their family members; and (3) to practice the skills under the supervision of the trained staff and project team. The matching was carried out by the staff of the center, who was familiar with the background of both the clients and the volunteers. The principles in conducting the matching were the geographical proximity of the homes of the client and the volunteer, and the characters of the client and volunteer.
During this period of the project, apart from the communication via the instant messaging group, the volunteers were required to record their experiences within one week after each visit. The project team reviewed the volunteers’ electronic records and swiftly answered any queries that they made regarding the visits. The volunteers also shared their experiences during the enrichment workshops, where questions were also answered by the professional speakers. The quality of the volunteers’ services was ensured in the abovementioned ways.
Outcome Measures
The survey was designed to allow for self-administration. However, a research assistant was trained to assist those who might need assistance. Information on demographic characteristics (including age, gender, level of education, employment status, and dementia caregiving experience) was collected at baseline.
To address Objective 1, knowledge and attitudes were assessed using the Alzheimer’s Disease Knowledge Scale (Chinese version) and the Dementia Attitudes Scale (Chinese version) respectively at baseline (i.e., before joining any workshops) and after the completion of the training and voluntary service provision. The Alzheimer’s Disease Knowledge Scale (33) consists of 30 true/false items covering the life impact, risk factors, symptoms, treatment and management, assessment, caregiving, and course of the disease. Higher scores indicate more correctly answered items. The test takes approximately 5 – 10 minutes to complete. The internal consistency (Cronbach α = 0.71) and test-retest reliability (r = .81) of the scale were acceptable and good, respectively (33). The Dementia Attitudes Scale (34, 35) consists of 20 items rated on a 7-point Likert scale (ranging from 1 to 7) that reflect the affective, behavioral, and cognitive components of attitudes towards individuals with Alzheimer’s and related forms of dementia. Two factors were identified, namely, dementia knowledge and social comfort. The internal consistency was good (Cronbach α = 0.83 – 0.85) (34).
To understand the motivation to be a volunteer and explore the relationship between motivation and dementia knowledge and attitudes (Objective 2), the participants were asked to fill in the Volunteer Functions Inventory (Chinese version, (36) at baseline. The inventory contains 30 items and six subscales rated on a 7-point Likert scale (ranging from 1 – 7), with higher scores indicating the greater importance of that motive. The subscales measure six major functions potentially served by volunteerism: reducing one’s negative feelings (protective), expressing a generous concern towards others (values), gaining career-related experience (career), strengthening one’s social relationships (social), learning through hands-on experience (understanding), and promoting better feelings towards oneself (enhancement). The internal consistency of each subscale was found to be good to excellent (Cronbach’s α = 0.70 – 0.91), with the test-retest reliability over an 8-month interval ranging from r = 0.56 to 0.73 (36).
Sample size
As this was part of a larger-scale implementation study, a formal estimation of sample size was not performed.
Ethical considerations
Approval for the study was obtained from the University (HSEARS20180319002). Written consent was obtained from all participants. To compensate them for their transportation costs, the participants received the equivalent of about US$7.7 in cash per trip at the end of the program. The conduct of the study was consistent with the requirements of the National Statement on Ethical Conduct in Human Research.
Statistical analysis
Data were analyzed using SPSS software version 25.0. A Wilcoxon signed-rank test was used to examine the change in dementia knowledge and attitudes towards dementia after training and voluntary service provision. Hierarchical multiple regression was used to assess whether dementia knowledge and attitudes could predict an individual’s motivation to volunteer (total score in the Volunteer Functions Inventory), after controlling for possible confounders (i.e., age, gender, level of education, employment status, and dementia caregiving experience). The level of significance was set at p < .05 (two-tailed) in all statistical analyses.