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An integrative group movement program for people with dementia and care partners together (Paired PLIE): initial process evaluation.

ABSTRACT: Objectives: To understand feedback from participants in Paired PLIÉ (Preventing Loss of Independence through Exercise), a novel, integrative group movement program for people with dementia and their care partners, in order to refine the intervention and study procedures.Method: Data sources included daily logs from the first Paired PLIÉ RCT group, final reflections from the second Paired PLIÉ RCT group, and responses to requests for feedback and letters of support from Paired PLIÉ community class participants. All data are reports from care partners. The qualitative coding process was iterative and conducted with a multidisciplinary team. The coding team began with a previously established framework that was modified and expanded to reflect emerging themes. Regular team meetings were held to confirm validity and to reach consensus around the coding system as it was developed and applied. Reliability was checked by having a second team member apply the coding system to a subset of the data.Results: Key themes that emerged included care partner-reported improvements in physical functioning, cognitive functioning, social/emotional functioning, and relationship quality that were attributed to participation in Paired PLIÉ. Opportunities to improve the intervention and reduce study burden were identified. Care partners who transitioned to the community class after participating in the Paired PLIÉ study reported ongoing benefits.Conclusion: These qualitative results show that people with dementia and their care partners can participate in and benefit from community-based programs like Paired PLIÉ that include both partners, and focus on building skills to maintain function and quality of life.

SUBMITTER: Casey JJ

PROVIDER: S-EPMC6690798 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundPreventing Loss of Independence through Exercise (PLIÉ) is an in-person group mind-body movement program for people across the spectrum of cognitive decline and care partners (CPs).ObjectiveThis study developed and refined an online version called Moving Together and tested feasibility and satisfaction with an online delivery.MethodsIn Phase 1, we used qualitative methods to determine which elements of the in-person program were essential to retain for the online version and adaptations that would be needed to support the user experience. In Phase 2, we created a prototype of the online program and iteratively refined it based on user feedback. In Phase 3, we assessed feasibility of online delivery based on class attendance and program completion; we assessed satisfaction and participant-reported outcomes using a post-program evaluation survey with quantitative and qualitative components.ResultsPhase 1 findings from 27 participants (14 PLWD, 13 CPs) revealed three key considerations related to online delivery of PLIÉ: technology use, social connection as a primary motivator, and physical safety concerns. Phase 2 iterative testing among 25 participants (14 PLWD, 11 CPs) resulted in key refinements to program delivery and instructional elements; Phase 3 pilot testing included 39 participants (12 PLWD, 15 CPs, 12 MCI) who attended 75 ± 29% of 24 classes; 77% completed the 12-week program, of whom 96% rated it as excellent or good. Participant-reported outcomes included improvements in social connection, emotional well-being, physical function, cognitive function and present-centered body awareness. PLWD or MCI also reported improvements in self-concept, and CPs reported improvements in caregiving self-efficacy. The primary challenges were related to participant navigation of technology.ConclusionThe Moving Together online program is feasible for PLWD or MCI and CPs with participants reporting high satisfaction and positive outcomes across multiple domains. Providing individual technology support is critical for the success of livestreamed, online interventions for dementia.

Project description:Background: Behavioral and psychological symptoms of dementia (BPSD, also known as neuropsychiatric symptoms (NPS), changed behaviors and responsive behaviors), occur in up to 90 percent of people living with dementia (PLWD). These symptoms and behaviors strongly correlate with functional and cognitive impairment and contribute to ~30% of overall dementia costs. As decisions regarding care and strategies for BPSD are generally based on professional frames of reference, this study investigates whether the perspectives of PLWD and families/care partner on BPSD terminology can inform a more nuanced conceptualization of BPSD. Methods: PLWD and families/care partners participated in one-on-one semi-structured interviews. A thematic iterative approach was used to code the data and identify common themes until theoretical saturation was reached. Themes were compared between groups. Data were analyzed deductively in relation to pre-existing terminology regarding BPSD, and inductively to discover new ideas on use of such terminology as perceived by PLWD and others. Results: Forty-one volunteers were interviewed: 21 PLWD, mean age 71 yrs, mean Mini-Mental State Examination score 25, and 20 family members/care partners. Three main themes emerged from the data: (1) descriptions of BPSD from people with lived experience compared to clinical terms, (2) viewpoints on interpreting causes, and (3) experiences of concurrent BPSD. The experiences described and terms used by PLWD and families/care partners differed from terms used in existing professional frameworks (e.g., "disinhibition" described as 'loss of filter') and there were differences between PLWD and family members' interpretations of BPSD causes. Discussion/Conclusion: Reports from PLWD and families/carers describing their experiences of BPSD suggest a reconceptualization of BPSD terminology is needed to understand and de-stigmatize these symptoms and behaviors. For example, the term "agitated/hard to handle" would benefit by clearer, contextualized description, such as "frustrated with cognitive decline, discriminatory behavior and inadequate support systems." In better understanding individual expressions of BPSD, families, professionals and societies will be able to respond in ways that are helpful for PLWD. An informed, integrated understanding of BPSD and improved terminology use will have the potential to improve the quality of care and support for PLWD.

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An integrative group movement program for people with dementia and care partners together (Paired PLIE): initial process evaluation.

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