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

ABSTRACT: 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.

SUBMITTER: Whelan S

PROVIDER: S-EPMC7051935 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Due to the need to increase social awareness about dementia and the needs of patients living with dementia in Poland, the Razem przed siebie (eng. Forward with Dementia) campaign was created. The aim of the study was to evaluate its effectiveness. To disseminate key campaign messages to the target audiences (people with dementia, carers, health and social care professionals [HSCP] and general public) a website, social and traditional media promotions, webinars and social activities were created. The campaign ran between September 2021 and April 2022. Mixed methods (online survey, reach estimates and interviews) were used to evaluate the campaign. Almost 1,300 people visited the website during the campaign period. Of these, 55 carers and HSCP responded to the online survey. The most read section of the website was Understanding the diagnosis (carers [56% of 25] and HSCP [80% out of 30]). The website was mostly accessed by carers (68%) and HSCP (66.7%) through word-of-mouth recommendations. 80% carers and 90% HSCP found the website very or extremely helpful. Over 90% of carers and HSCP expressed an intention to revisit the website. Based on 31 interviews, campaign effects, change mechanisms and limitations were identified. Campaign events elicited positive emotions among people with dementia, providing them with a feeling of belonging and engagement. Esteeming personal interactions over informational campaign materials, those with dementia felt acknowledged and empowered by the events. Carers also reported positive experiences and increased interest and knowledge, though they expressed disappointment with the lack of respite care, an issue beyond the campaign's scope. HSCP perceived the campaign events positively and identified significant gaps in the dementia care system. Evaluation of the Razem przed siebie campaign revealed successes and limitations. While effectively incorporating anti-stigma campaign recommendations and enhancing social health for individuals with dementia, the campaign clearly showed the pressing need for systemic solutions. Despite positive perception of the campaign, there is a need for a better diagnostic and post-diagnostic support for people with dementia and their carers.

Project description:Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.

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

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