Building Resilience in Persons with Early-Stage Dementia and Their Care Partners

Matchar, Bobbi G.; Gwyther, Lisa P.; Galik, Elizabeth

doi:10.1007/978-3-030-04555-5_14

Cited by 2 publications

(23 citation statements)

References 30 publications

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“…This resulted in 53 studies being retained for full-text review, against the inclusion criteria. The final review included six papers that reported five interventions (27)(28)(29)(30)(31)(32). An overview of the studies and the interventions is provided below.…”

Section: Review Findingsmentioning

confidence: 99%

“…The fourth intervention, "Memory Makers, " started in the USA in 2012 and was investigated in a study that aimed to explore its impact on resilience, using an observational descriptive study design (31,32). This community-based intervention recruited people with dementia from memory clinics, medical practices and the Alzheimer's Association.…”

Section: Memory Makersmentioning

confidence: 99%

“…The fifth intervention was the Early-Stage and Beyond Community Activities (ESBCA) (31). This involved a range of activities (see Table 2) for people with dementia and family carers who were graduates from the Memory Maker program.…”

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

“…ESBCA aimed to build resilience by developing community support. ESBCA was facilitated by trained social workers (31). Data was collected from family units (n = 1,799), that included people with dementia (n = 166), aged 49-93 years, and family carers (n = 178).…”

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

“…The impact on resilience of the Memory Makers programme (32) and the ESBCA (31) will now be discussed together because the interventions involved similar participants and the findings of their investigations concur with one another. Matchar et al (31) describes themes that were derived separately from people with dementia and their family carers. Here however, in keeping with the aims of this review only the themes identified for people with dementia will be reported.…”

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

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Fostering the Resilience of People With Dementia: A Narrative Literature Review

2020

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Background: Resilience is a process through which people use resources to adapt to adversity. Interventions aiming to support resilience in people with dementia have been developed. However, the optimal content, structure and impact of these interventions is unclear. This literature review explores the factors through which interventions foster resilience in people with dementia and examines their efficacy. Methods: Eight databases were searched systematically, for literature published from 2000 to 2019. Following the removal of duplicate articles, the titles and abstracts of 6,749 articles were screened. Articles were selected if they: reported empirical studies in English; focused on resilience; involved people with dementia and psychosocial interventions. The full text of 53 articles were examined and three studies, reported in six papers, were included in the final review. Data were systematically extracted, and two authors critiqued the studies using the Critical Appraisal Skills Programme check lists. The studies were examined to determine how resilience was defined and operationalized and their findings were synthesized using the theoretical resilience framework. Results: Five interventions aiming to foster resilience were identified: Dementia Advisors; Peer Support Network Services; Visual Arts Enrichment Activities; Memory Makers; and Early-Stage and Beyond Community Activities. All studies defined resilience as a process and most involved people with mild dementia who had family carers. The interventions impacted resilience by reducing the adversity of stigma and social isolation; increasing personal and social resources, providing stigma-free space and reciprocal support. Interventions empowered people with dementia, increasing their self-esteem and self-worth. Resilience can be fostered both during, and after interventions. However, the efficacy of interventions could not be determined because the research designs utilized did not measure efficacy. Conclusions: Interventions need facilitators to ensure they are strength-based, person-centered and they enable reciprocal social interactions. Future research needs to develop interventions that aim to foster the resilience of people with dementia who lack family carers and/or have more advanced dementia through meaningful activities that are identified by people with dementia as important to their resilience. Robust methodologies, including randomized controlled trials should be used to measure effectiveness and explore the impact of interventions regarding the: interplay between individual and community resources; the importance of reciprocity; and temporal aspects of resilience.

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Section: Review Findingsmentioning

confidence: 99%

Section: Memory Makersmentioning

confidence: 99%

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

Section: Early-stage and Beyond Community Activitiesmentioning

confidence: 99%

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Fostering the Resilience of People With Dementia: A Narrative Literature Review

2020

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Co-designing an Adaption of a Mobile App to Enhance Communication, Safety, and Well-being Among People Living at Home With Early-Stage Dementia: Protocol for an Exploratory Multiple Case Study

et al. 2021

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Background There is a growing interest in using mobile apps to support communication, safety, and well-being. Evidence directly from people with dementia regarding the usability, usefulness, and relevance of mobile apps is limited. Objective This paper describes the protocol of a study that will evaluate an app designed for supporting communication, safety, and well-being among people living with dementia. The study aims to understand if the app can enhance safety through improved communication among users. Methods The study will use participatory qualitative methods over 3 cycles of evaluation with co-designers (service users, their families, and care practitioners). The study will be developed in partnership with a specialist home care service in England. Purposive case selection will be performed to ensure that the cases exemplify differences in experiences. The app will be evaluated in a walk-through workshop by people living with early-stage dementia and then trialed at home by up to 12 families in a try-out cycle. An amended version will be evaluated in a final walk-through workshop during cycle 3. Data will be collected from at least 4 data sources during the try-out phase and analyzed thematically. An explanatory multiple case study design will be used to synthesize and present the evidence from the three cycles, drawing on the Normalization Process Theory to support the interpretation of the findings. Results The study is ready to be implemented, but it was paused to protect vulnerable individuals during the COVID-19 pandemic in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic as well as for providing insight into the challenges of social isolation that arise from living with dementia. Conclusions Evaluating a mobile app for enhancing communication, safety, and well-being among people living with dementia contributes to the key ambitions enshrined in policy and practice—championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study will involve co-designers living with dementia, so that the voices of service users can be used to highlight the benefits and challenges of assistive technology and shape the future development of apps that enhance safety by improving communication. International Registered Report Identifier (IRRID) PRR1-10.2196/19543

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Building Resilience in Persons with Early-Stage Dementia and Their Care Partners

Cited by 2 publications

References 30 publications

Fostering the Resilience of People With Dementia: A Narrative Literature Review

Fostering the Resilience of People With Dementia: A Narrative Literature Review

Co-designing an Adaption of a Mobile App to Enhance Communication, Safety, and Well-being Among People Living at Home With Early-Stage Dementia: Protocol for an Exploratory Multiple Case Study

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