Dementia, Informal Caregivers (Family and Friends)
Conditions
Keywords
Dementia, Choir, Loneliness, Music therapy
Brief summary
Loneliness is common in both persons living with dementia and their informal caregivers, and a factor negatively affecting disease progression, health and wellbeing. However, intervention studies to address loneliness show inconsistent effects. This study aims to evaluate effect of a community-based group intervention - music therapy informed dementia choirs - on loneliness for home-dwelling people with dementia and their informal caregivers. We will recruit participants to five dementia choirs with 15-20 people in each and implement a crossover study with measures collected at four timepoints: baseline, 12-week follow up, 22-week follow-up after an extended summer holiday, and 12-week follow-up after the summer holiday. The primary outcome, loneliness in participants living with dementia, will be measured using the De Jong Gierveld loneliness scale. Secondary outcomes will be depression, experience of meaning in life, apathy and mood for the participants living with dementia, and loneliness and caregiver burden for the informal caregivers. Cognition in the participants living with dementia, measured with the RUDAS assessment tool, will be included as a control variable. Further, measurements to evaluate the cost effectiveness of the choir intervention will be included, and qualitative data collected through semi-structured interviews to explore the experiences and possible impacts of the choir intervention in the participants' lives.
Interventions
OTHERDementia choir
Music therapy informed dementia choirs will be delivered once a week. Rehearsals last app. 2 hours, including a social break. Each choir will be led by 1 conductor and 1 accompanist. The choir leaders will have relevant professional qualifications that supplement each other, such as a music therapist, music pedagogue, conductor, singer, singing teacher, or health care professional with additional music competence. They will be trained by the research team to deliver the choirs in a dementia friendly and music therapy informed way. In addition, the choir leaders will receive supervision from the research team throughout the intervention periods. The choirs will involve volunteers to assist during rehearsals and breaks. The volunteers will also receive training on how to support the choir participants in a dementia friendly way.
Sponsors
Norwegian Academy of Music
Oslo Municipality
Institute of Clinical Medicine, University of Oslo
University of Oslo
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
The study has a single group model in a crossover design. In the study, participants will be recruited to participate in dementia choirs. The choirs will be divided into two groups. Participants in each group will complete all assessments at the same timepoints but receive choir activity at different times.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Dementia diagnosis (Alzheimers, Lewy-body, fronto-temporal, vascular, mixed, Parkinson's dementia) or cognitive impairment as reported by the person themselves/their caregiver * Informal caregiver of participant with dementia: A person who has a close relationship with a recruited choir participant living with dementia. A close relationship may for instance be a spouse/partner, sibling, adult child, friend, niece or nephew * Living at home in the community
Exclusion criteria
* Significant hearing impairment that is not resolved through the use of a hearing aid device and limit their capacity to enjoy musical experiences. * Formal (paid) caregiver of participant with dementia
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change from baseline in degree of loneliness in participants with dementia at 12 weeks (primary), 22 weeks and 36 weeks follow up | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised questionnaire the De Jong Gierveld 6-item Loneliness Scale |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change from baseline in degree of depression in participants with dementia to 12-week (primary timepoint), 22-week and 26-week follow up | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised questionnaire Geriatric Depression Scale Short-Version, GDS-15. |
| Change from baseline in degree of self-reported meaning in life in participants with dementia to 12-week (primary timepoint), 22-week and 26-week follow up | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised questionnaire The Meaning in Life Questionnaire Short Form (MLQ-SF) |
| Change from baseline in degree of apathy in participants with dementia to 12-week (primary timepoint), 22-week and 26-week follow up | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised questionnaire Apathy Evaluation Scale - Informant Version, reported by informal caregivers as proxy. |
| Change from baseline in degree of loneliness in informal caregivers of participants with dementia to 12-week (primary timepoint), 22-week and 26-week follow up | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised questionnaire The De Jong Gierveld 6-item Loneliness Scale measuring degree of self-reported loneliness. |
| Change from baseline in degree of caregiver burden to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | From baseline to 12-week follow up (primary timepoint), 22-week follow up and 36-week follow up. | Measured by the standardised self-reported questionnaire Relative's Stress Scale (RSS) |
| Change of mood in participant with dementia from before to after choir rehearsals | From before to after rehearsals for rehearsals 2, 6 and 11 (per choir). | Measured by tha standardised questionnaire The Dementia Mood Picture Test completed immediately before and after selected choir rehearsals (rehearsal 2, 6 and 11). |
Countries
Norway
Contacts
PRINCIPAL_INVESTIGATORKjersti Johansson, PhD
Norwegian Academy of Music
Outcome results
None listed