Acceptance of psychosocial bridging measures in context of dementia.
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ABSTRACT:
SUBMITTER: Leicher B
PROVIDER: S-EPMC11365855 | biostudies-literature | 2024 Sep
REPOSITORIES: biostudies-literature
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Acceptance of psychosocial bridging measures in context of dementia.
Leicher Barbara B Buschert Verena V Benninghoff Jens J Scherbaum Norbert N
Journal of neural transmission (Vienna, Austria : 1996) 20240807 9
Participants from an outpatient treatment program for cognitive disorders have been offered bridging measures because of limited access to the outpatient clinic during a Covid-19-caused lock-down. The aim of this study was to assess perceived stress, acceptance, and appreciation of the measures among patients and their caregivers compared to the previous bridging measure. Forty participants were offered treatment in person or online depending on their cognitive performance level. To evaluate acc ...[more]
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Project description:BackgroundIn the event of a COVID-19-related absence from an outpatient treatment program, patients suffering from dementia and their caregivers were offered support from a distance. The aim was to examine the extent of the participants' burden as well as how the offer was accepted and evaluated.Material and methodsAll participants (n = 63) were offered supportive telephone contact over a period of 8 weeks at varying frequencies (weekly, fortnightly). In addition patients received cognitive and physical tasks by mail every 2 weeks. In order to examine the acceptance of the support, data collected from clinical routine were included in a treatment observation. Additionally, all participants were asked to evaluate the support retrospectively.ResultsOut of 63 contacted participants, 45 were included in the treatment observation. The telephone support was very well accepted and a tendency towards higher agreement could be ascertained by caregivers. The experience of burden remained stable at a moderate level for all participants; however, caregivers were significantly more burdened.ConclusionThe present treatment observation shows the acceptance of a location-independent psychosocial treatment program for dementia for future pandemics or treatment failure as well as for the routine care, e.g. for patients with restricted mobility or those living in rural areas without direct hospital connection. In particular, our data strengthen the importance of programs for caregivers in order to alleviate their burden.
| S-EPMC9540087 | biostudies-literature
Project description:IntroductionDifferences in adaptive strategies used by individuals and families living with dementia have the potential to impact day-to-day well-being. The Living Well Inventory for Dementia (LWI-D) is a new measure to capture these strategies and to illuminate new options to support families living with dementia. The Quality of Day Scale (QODS) is a new measure to capture global well-being in persons based on a shorter temporal frame than traditional quality of life measures. This article summarizes the initial evaluation of the LWI-D and the QODS for face validity, content validity, and user acceptability.MethodsInitial acceptability and feasibility testing were conducted with a sample of 17 community-dwelling individuals with early-stage dementia (Montreal Cognitive Assessment [MoCA] scores of 12-30).After revision and optimization of the two measures, a second pilot test was conducted with a sample of 30 dyads (persons living with dementia and family caregivers) in nursing home, assisted living, and community settings.ResultsData from both pilot studies are reported including item analysis and quantitative and qualitative results. Outcomes related to convergent validity between the LWI-D and the QODS with measures of positive affect-balance, quality of life, and well-being are presented. Within-dyad differences in ratings on both measures are discussed.DiscussionThe LWI-D and the QODS are developing measures that warrant further testing and may enhance the ability to (1) identify strengths in living well with dementia, and (2) identify and test new interventions to bolster care and support.HighlightsThis article describes the process used to develop and test two new measures for research and clinical practice related to positive psychosocial approaches to dementia.The measures were developed with a team that included persons living with Alzheimer's disease as co-researchers in the process.A novel method of human-centered design was used to cultivate deep empathy, generate options, and conduct small, iterative tests of prototype measures.
| S-EPMC11837736 | biostudies-literature
Project description:Background: The recent COVID-19 pandemic is not only a major healthcare problem in itself, but also poses enormous social challenges. Though nursing homes increasingly receive attention, the majority of people with cognitive decline and dementia live at home. We aimed to explore the psychosocial effects of corona measures in memory clinic (pre-)dementia patients and their caregivers. Methods: Between April 28th and July 13th 2020, n = 389 patients of Alzheimer center Amsterdam [n = 121 symptomatic (age = 69 ± 6, 33%F, MMSE = 23 ± 5), n = 268 cognitively normal (age = 66 ± 8, 40% F, MMSE = 29 ± 1)] completed a survey on psychosocial effects of the corona measures. Questions related to social isolation, worries for faster cognitive decline, behavioral problems and discontinuation of care. In addition, n = 147 caregivers of symptomatic patients completed a similar survey with additional questions on caregiver burden. Results: Social isolation was experienced by n = 42 (35%) symptomatic and n = 67 (25%) cognitively normal patients and two third of patients [n = 129 (66%); n = 58 (75%) symptomatic, n = 71 (61%) cognitively normal] reported that care was discontinued. Worries for faster cognitive decline were existed in symptomatic patients [n = 44 (44%)] and caregivers [n = 73 (53%)], but were also reported by a subgroup of cognitively normal patients [n = 27 (14%)]. Both patients [n = 56 (46%) symptomatic, n = 102 (38%) cognitively normal] and caregivers [n = 72 (48%)] reported an increase in psychological symptoms. More than three quarter of caregivers [n = 111(76%)] reported an increase in patients' behavioral problems. A higher caregiver burden was experienced by n = 69 (56%) of caregivers and n = 43 (29%) of them reported that a need for more support. Discontinuation of care (OR = 3.3 [1.3-7.9]), psychological (OR = 4.0 [1.6-9.9]) and behavioral problems (OR = 3.0 [1.0-9.0]) strongly related to experiencing a higher caregiver burden. Lastly, social isolation (OR = 3.2 [1.2-8.1]) and psychological symptoms (OR = 8.1 [2.8-23.7]) were red flags for worries for faster cognitive decline. Conclusion: Not only symptomatic patients, but also cognitively normal patients express worries for faster cognitive decline and psychological symptoms. Moreover, we identified patients who are at risk of adverse outcomes of the corona measures, i.e., discontinued care, social isolation, psychological and behavioral problems. This underlines the need for health care professionals to provide ways to warrant the continuation of care and support (informal) networks surrounding patients and caregivers to mitigate the higher risk of negative psychosocial effects.
| S-EPMC7649118 | biostudies-literature
Project description:ObjectivesPersonal networks play a fundamental role in the daily lives of older adults. Although many studies examine how life course factors and personal preferences shape network formation, fewer consider how the places in which older adults live present opportunities and obstacles to cultivate social relationships. In the present study, we explore how geographic context is associated with the ability to bridge social ties within one's personal network.MethodsWe use data from the Person-to-Person Health Interview Survey (N = 709), a representative sample of Indiana residents. Personal network data were collected using 4 name-generating prompts. Logistic regression models and linear regression models were used to assess 2 measures of network bridging.ResultsA minority of respondents reported the ability to bridge ties within their networks. Respondents residing in rural and mixed counties were less likely than urban respondents to have at least one member of their network who was completely disconnected from all other members.DiscussionThese findings suggest that the communities in which older adults live condition opportunities for accessing unique network resources. Additional research adopting a network perspective is needed to provide insight into geographic disparities occurring among the older population.
| S-EPMC8893139 | biostudies-literature
Project description:Group-based psychosocial therapy, such as group Cognitive Stimulation Therapy, improves cognition and quality of life in people living with dementia. Neuropsychiatric symptoms and restricted mobility are common complications for people with Parkinson's-related dementia (PRD) and may limit access to, and participation in, group activities. This study describes the development of a condition-specific, home-based psychosocial therapy for people with PRD ready to be trialled in a clinical population.By means of a multistage process, a draft therapy manual was developed in an iterative manner through collaboration with medical experts, researchers and Patient and Public Involvement (PPI) representatives. In stage 1, an extensive literature search of psychosocial therapies for dementia with potential relevance for Parkinson's disease (PD) was undertaken to select a candidate therapy for adaptation. In stage 2, qualitative feedback from stakeholders and intelligence regarding existing nonpharmacological therapies for cognitive impairment in PD was combined to produce a prototype therapy manual. In stage 3, the manual was field tested in: 1) a home-setting using a 25-item assessment tool; and 2) at a local PD support group with PPI representatives. Based on the feedback from this phase, final design modifications were implemented and a draft therapy manual produced.The manual was developed in an iterative manner. Interview and focus group transcripts identified three enduring themes: manual form and content, therapy acceptability by people with PRD, and companion guidance and support. Major adaptations included: removal of discrete levels of task complexity, removal of images that were potentially hallucinogenic or lacked clarity, and updating of the content.We have successfully developed a Cognitive Stimulation Therapy-based psychosocial therapy specifically adapted for people with PRD. The therapy is ready to trial in a pilot randomized controlled study.
| S-EPMC5659232 | biostudies-other
Project description:IntroductionThe number and variety of alternative tobacco and nicotine products that can potentially provide reduced-risk choices for cigarette smokers who switch completely to such products instead of continued smoking have grown substantially in the past decade. Innovation and choice are likely to improve the prospects of smokers making the switch, but this provides challenges to regulators and manufacturers to ensure that changes to regulations and products promote and do not hinder contributions to tobacco harm reduction.Aims and methodsThis paper looks at where bridging data sets for tobacco heating products, closed system vaping products, and oral nicotine products might enable innovation while protecting the interests of consumers.ResultsWe review product data from chemical studies and a toxicological study showing how bridging can be applied and consider what product development changes might allow bridging from existing datasets or trigger the need for new ones.ConclusionsBridging across specific product ranges can increase the speed of innovation, foster competition, and limit the burden of assessment for regulators while maintaining product safety and quality.ImplicationsBridging partial data sets is an established practice within other industries, that aims to improve efficiency with regulatory approvals, accepts natural product variation, and supports product innovation. We review product data from chemical studies and a toxicological study showing how bridging can be applied and consider what product development changes might allow bridging from existing datasets or trigger the need for new ones. This in turn can increase the speed of innovation, foster competition, and limit the burden of assessment for regulators while maintaining product safety and quality.
| S-EPMC9356683 | biostudies-literature
Project description: Not available
| S-EPMC2687032 | biostudies-literature
Project description:Over the past 10 years, several instruments developed specifically for the assessment of Quality of Life (QOL) in dementia have been introduced. The goal of the current review is to present, compare, and critique existing QOL measures for dementia populations to assist investigators and clinicians in selecting the optimal inventory for their specific needs. Nine measures are reviewed with a focus on conceptualizations of QOL, psychometric data, targeted patient population, and administration and scoring procedures. Critical discussion and comparison of the instruments is presented after the scales are described individually. Differences in definitions of QOL, assessment procedures, and methods that were used to establish the validity of instruments are highlighted. An important direction for future research on QOL scales for dementia is to establish their responsiveness to change over time. It will also be important to identify factors that affect reports of QOL, determine the how perceived QOL affects decisions regarding the care of dementia patients, and evaluate interventions to increase patient QOL.
| S-EPMC155631 | biostudies-literature
Project description:PurposeLittle is known about the illness experience from the perspective of individuals with dementia (IWDs), as most quantitative research has focused on IWDs' psychosocial issues from proxy reports. The primary aim of this study was to better understand the impact of the illness experience on well-being from the perspective of the IWD through the framework of the Stress Process Model for Individuals with Dementia (SPM for IWDs).Design and methodsGuided by the SPM for IWDs, self-report data were collected from IWDs (N = 131) about their illness experience, including primary objective and subjective stressors, secondary role and intrapsychic strains, and well-being outcomes. Using multiple linear regression, primary stressors, secondary strains, and background and context characteristics were entered into 3 prediction models for each outcome: anxiety, depression, and quality of life (QoL).ResultsThree distinct prediction patterns emerged for each of the outcome measures. Embarrassment about memory loss was the unique predictor of anxiety, whereas physical health strain and role captivity uniquely predicted depression. Unique predictors for QoL included lower perceived instrumental activities of daily living (IADL) difficulty and higher self-efficacy.ImplicationsThis study provided valuable insight into the illness experience from the perspective of the IWD and identified key areas amenable to interventions, such as managing embarrassment about memory problems as well as improving self-efficacy and inner strength. Moreover, this study provided additional support for the inclusion of IWDs in the research process and highlighted the need for further research regarding clinical application of findings, testing of hypotheses, and analyzing efficacy of interventions.
| S-EPMC3771672 | biostudies-literature
Project description:BackgroundMost of patients with dementia are cared for by family members. Caring for people with dementia is challenging; approximately 30-55% of caregivers suffered from anxiety or depressive symptoms. A range of studies have shown that psychosocial interventions are effective and can improve caregivers' quality of life, reduce their care burden, and ease their anxiety or depressive symptoms. However, information on the acceptability of these interventions, despite being crucial, is under-reported.MethodsSystematic searches of databases were conducted for literature published on EMBASE, PubMed, The Cochrane Library, Web of Science, and PsycARTICLES until August 2017 and the searches were updated on June 2018. The selection criteria included primary studies with data about the acceptability of psychosocial interventions for informal caregivers and publications written in English. Two authors independently selected studies, extracted study characteristics and data, assessed the methodological quality of the included studies by using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool and Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist, and conducted a narrative synthesis of quantitative and qualitative data.ResultsA total of 10,610 abstracts were identified through systematic searches. Based on screening titles and abstracts, 207 papers were identified that met the criteria for full paper review, with 42 papers from 13 different countries meeting the inclusion criteria. We found high- and moderate-quality evidence showing psychosocial interventions were acceptable, with important benefits for caregivers. Facilitators of acceptability included caregivers' need for intervention, appropriate content and organization of the intervention, and knowledge and professionalism of the staff. Barriers to acceptability included participants' poor health status and low education levels, caregiving burden, change of intervention implementers, and poor system performance of interventions.ConclusionThere is preliminary evidence to support the acceptability of psychosocial interventions for dementia caregivers. However, the available supporting evidence is limited, and there is currently no adequate information from these studies indicating that the acceptability has received enough attention from researchers. More well-designed studies assessing psychosocial interventions are needed to give specific statements about acceptability, and the measure of acceptability with psychosocial interventions should be more comprehensive.
| S-EPMC6332684 | biostudies-literature