Background: Enabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.
Objectives: Technology can assist and support both people with dementia (PWD) and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case of further pandemic waves.Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010.Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged.Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization.
Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands. Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers. Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p=0.04, d=0.55) and less caregiver distress (p=0.02, d=0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n=81) and 6 months (n=84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP. Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using 6 UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended.
We examined the costs and cost-effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015-2016 from MCSP and usual care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We examined participants' health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: qualityadjusted life years (EQ-5D-5L-derived); QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were €5,941higherin MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was zero over willingness-to-pay (WTP) ranging from €0 to €350,000. On QOL-AD, the probability of cost-effectiveness of MCSP was 50% at WTP of €5,000 for a one-point increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-effectiveness of 99% at WTP over €8,000.On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests that it may be cost-effective in relation to gains in dementia-specific quality of life measures. MCs offer effective tailored post-diagnostic support services to both people with dementia and carers in a | 1757 HENDERSON Et al.
Most studies have been concerned with the experiences and needs of women with breast cancer and spouses/partners separately. In this review, the relationship dynamics that characterize the couple’s experience of breast cancer treatment were investigated. Findings will inform both researchers and professionals in the area of oncology. A systematic literature search was performed in CINAHL, PsychINFO, MEDLINE, Scopus and Web of Science. A checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Seventeen studies were included, and the synthesis of the literature revealed five domains that characterized the dyadic process: dyadic coping strategies, psychosocial support, communication, the couple’s sexual life and spirituality. The included studies provide the basis for knowledge and awareness about the experience of couples with cancer, the specific dimensions enacted during the breast cancer treatment path and the type of responses that are associated with a positive couple’s adjustment to the disease.
Objectives Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care. Design A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out. Results Twenty‐one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a “whole family” approach. Conclusions The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population.
There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of ‘Treatment’ covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded.
ObjectiveThe recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies.ProcessWe use the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility. An iterative consensus-based process was used within the international multidisciplinary SHARED project.Conceptual frameworkUnderpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in a definition of social health as wellbeing that relies on capacities both of the individual and the social environment. Consequently, domains in the conceptual framework are on both the individual (e.g., social participation) and the social environmental levels (e.g., social network). We hypothesize that social health acts as a driver for use of cognitive reserve which can then slow cognitive impairment or maintain cognitive functioning. The feasibility of the conceptual framework is demonstrated in its practical use in identifying and structuring of social health markers within the SHARED project.DiscussionThe conceptual framework provides guidance for future research and facilitates identification of modifiable risk and protective factors, which may in turn shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.
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