Asunto(s)
Investigación Biomédica , Demencia , Lista de Verificación , Países en Desarrollo , HumanosRESUMEN
BACKGROUND AND OBJECTIVES: Emerging evidence suggests music-based interventions can improve the well-being of people living with dementia, but little is known about the ways in which music might support dementia caregiving relationships as part of everyday life at home. This study examined music engagement in the context of daily life to identify patterns of music engagement and potential targets for the design of music-based interventions to support well-being. RESEARCH DESIGN AND METHODS: This ethnographic, in-home study of people living with dementia and their family and professional care partners used methods from ethnomusicology, including semistructured interviews and in-home participant observation with a focus on music engagement. RESULTS: A total of 21 dyads were purposively recruited for diversity in terms of gender, ethnicity/race/heritage, caregiving relationship, and music experiences. Despite participants' diverse music preferences, 3 distinct music engagement patterns emerged. (a) Professional care partners intentionally integrated music listening and singing into daily life as part of providing direct care. (b) Family care partners, who had prior dementia care nursing experience or family music traditions, integrated music into daily life in ways that supported their personal relationships. (c) In contrast, family care partners, who lacked dementia care experience and had high levels of caregiver burden, disengaged from prior music-making. DISCUSSION AND IMPLICATIONS: The distinct music engagement patterns reflect different needs on the part of dyads. It is important to continue to support dyads who engage in music daily and to consider developing music-based interventions to support well-being among dyads who have become disengaged from music.
Asunto(s)
Cuidadores , Demencia , Música , Humanos , Femenino , Masculino , Demencia/enfermería , Demencia/psicología , Cuidadores/psicología , Anciano , Anciano de 80 o más Años , Música/psicología , Musicoterapia , Persona de Mediana Edad , Antropología Cultural , Familia/psicología , CantoRESUMEN
OBJECTIVES: To examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life. DESIGN: Ethnographic study design using semistructured interviews, participant-observation, and ethnographic analysis. SETTING AND PARTICIPANTS: Home setting. People living with dementia were recruited through 3 geriatrics programs in the San Francisco Bay Area, along with 1 primary live-in care partner for each. Participants were purposively sampled to maximize heterogeneity of dementia severity and life experience. MEASUREMENTS: We asked participants to self-identify and report meaningful activity engagement prior to dementia onset and during the study period using a structured questionnaire, semistructured dyadic interviews, and observed engagement in activities. Home visits were audio-recorded, transcribed, and inductively analyzed using thematic analysis. RESULTS: Twenty-one people living with dementia (mean age 84 years, 38% women) and 20 care partners (59 years, 85% women), including 40% professionals, 35% spouse/partners, and 15% adult children. Overarching theme: specific activities changed over time but underlying sources of meaning and identity remained stable. As dementia progressed, meaningful activity engagement took 3 pathways. Pathway 1: Activities continued with minimal adaptation when engagement demanded little functional or cognitive ability (eg, watching football on TV). Pathway 2: care partners adapted or replaced activities when engagement required greater functional or cognitive abilities (eg, traveling overseas). This pathway was associated with caregiving experience, nursing training, and strong social support structures. Pathway 3: care partners discontinued meaningful activity engagement. Discontinuation was associated with severe caregiver burden, coupled with illness, injury, or competing caregiving demands severe enough to impact their ability to facilitate activities. CONCLUSIONS AND IMPLICATIONS: For people living with dementia at home, underlying sources of meaning and identity remains stable despite changes in meaningful activity engagement. Many of the factors associated with adaptation vs discontinuation over time are modifiable and can serve as targets for intervention.
Asunto(s)
Demencia , Vida Independiente , Adulto , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Cognición , Demencia/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios , Hijos AdultosRESUMEN
BACKGROUND: With nearly 6 million people with dementia (PWD) in the United States, there is a critical need to build an interprofessional dementia workforce. Among the novel approaches to expanding a new workforce, music and the arts show promise for engaging students and trainees. To understand how and why the arts affect attitudes about and engagement with PWD, we examined a service-learning general education undergraduate course centering on music, filmmaking, and dementia. METHODS: The undergraduate course curriculum brought students to meet with PWD in dementia care settings, build personalized music playlists, coproduce short films about PWD, and write reflective essays. Two researchers independently completed inductive thematic analysis of the films, essays, and course evaluations. Differences were reconciled by consensus. RESULTS: A total of 52 students from three classes completed the course; 24 (46%) were majoring in health sciences. Three key themes emerged: (1) Music helps students connect with people living with dementia in meaningful ways; (2) filmmaking offers students the opportunity to share unique, person-centered stories about dementia and music that empower the voices of PWD; and (3) reflective writing enables students to process new experiences and lessons learned. Unexpectedly, 29 students (56%) reported continued engagement with PWD in their careers, families, and communities after course completion. CONCLUSION: This study identifies reproducible ways in which undergraduate arts courses thematically focused on dementia not only transform student perceptions about dementia but change the ways in which those students choose to engage with PWD following course completion. Arts and music departments may represent an untapped resource for building a geriatrics workforce. J Am Geriatr Soc 68:1083-1089, 2020.