Personal growth and cognitive complexity in caregivers of patients with dementia.
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ABSTRACT:
SUBMITTER: Leipold B
PROVIDER: S-EPMC5546334 | biostudies-other | 2008 Sep
REPOSITORIES: biostudies-other
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Project description:BackgroundDementia is a multi-factorial condition rather than a natural and inevitable consequence of ageing. Some factors related to dementia have been studied much more extensively than others. To gain an overview of known or suspected influential factors is a prerequisite to design studies that aim to identify causal relationships and interactions between factors. This article aims to develop a visual model that a) identifies factors related to cognitive decline that signal the onset of dementia, b) structures them by different domains and c) reflects on and visualizes the possible causal links and interactions between these factors based on expert input using a causal loop diagram.MethodWe used a mixed-method, step-wise approach: 1. A systematic literature review on factors related to cognitive decline; 2. A group model building (GMB) workshop with experts from different disciplines; 3. Structured discussions within the group of researchers. The results were continuously synthesized and graphically transformed into a causal loop diagram.ResultsThe causal loop diagram comprises 73 factors that were structured into six domains: physical (medical) factors (23), social health factors (21), psychological factors (14), environmental factors (5), demographic factors (5) and lifestyle factors (3). 57 factors were identified in the systematic literature review, additionally 16 factors, mostly of the social health cluster, were identified during the GMB session and the feedback rounds.ConclusionThe causal loop diagram offers a comprehensive visualisation of factors related to cognitive decline and their interactions. It supports the generation of hypotheses on causal relationships and interactions of factors within and between domains.
| S-EPMC9208220 | biostudies-literature
Project description:BackgroundIndividuals with dementia and mild cognitive impairment (MCI) experience a wide variety of symptoms and challenges that trouble them. To address this heterogeneity, numerous standardized tests are used for diagnosis and prognosis. myGoalNav Dementia is a web-based tool that allows individuals with impairments and their caregivers to identify and track outcomes of greatest importance to them, which may be a less arbitrary and more sensitive way of capturing meaningful change.ObjectiveWe aim to explore the most frequent and important symptoms and challenges reported by caregivers and people with dementia and MCI and how this varies according to disease severity.MethodsThis cross-sectional study involved 3909 web-based myGoalNav users (mostly caregivers of people with dementia or MCI) who completed symptom profiles between 2006 and 2019. To make a symptom profile, users selected their most personally meaningful or troublesome dementia-related symptoms to track over time. Users were also asked to rank their chosen symptoms from least to most important, which we called the symptom potency. As the stage of disease for these web-based users was unknown, we applied a supervised staging algorithm, previously trained on clinician-derived data, to classify each profile into 1 of 4 stages: MCI and mild, moderate, and severe dementia. Across these stages, we compared symptom tracking frequency, symptom potency, and the relationship between frequency and potency.ResultsApplying the staging algorithm to the 3909 user profiles resulted in 917 (23.46%) MCI, 1596 (40.83%) mild dementia, 514 (13.15%) moderate dementia, and 882 (22.56%) severe dementia profiles. We found that the most frequent symptoms in MCI and mild dementia profiles were similar and comprised early hallmarks of dementia (eg, recent memory and language difficulty). As the stage increased to moderate and severe, the most frequent symptoms were characteristic of loss of independent function (eg, incontinence) and behavioral problems (eg, aggression). The most potent symptoms were similar between stages and generally reflected disruptions in everyday life (eg, problems with hobbies or games, travel, and looking after grandchildren). Symptom frequency was negatively correlated with potency at all stages, and the strength of this relationship increased with increasing disease severity.ConclusionsOur results emphasize the importance of patient-centricity in MCI and dementia studies and illustrate the valuable real-world evidence that can be collected with digital tools. Here, the most frequent symptoms across the stages reflected our understanding of the typical disease progression. However, the symptoms that were ranked as most personally important by users were generally among the least frequently selected. Through individualization, patient-centered instruments such as myGoalNav can complement standardized measures by capturing these infrequent but potent outcomes.
| S-EPMC8832273 | biostudies-literature
Project description:BackgroundThe changes of cortical structure in Alzheimer's disease (AD) and frontotemporal dementia (FTD) are usually described in terms of atrophy. However, neurodegenerative diseases may also affect the complexity of cortical shape, such as the fractal dimension of the brain surface.ObjectiveIn this study, we aimed at assessing the regional patterns of cortical thickness and fractal dimension changes in a cross-sectional cohort of patients with AD and FTD.MethodsThirty-two people with symptomatic AD-pathology (clinically probable AD, n = 18, and amyloid-positive mild cognitive impairment, n = 14), 24 with FTD and 28 healthy controls underwent high-resolution 3T structural brain MRI. Using surface-based morphometry, we created vertex-wise cortical thickness and fractal dimension maps for group comparisons and correlations with cognitive measures in AD and FTD.ResultsIn addition to the well-established pattern of cortical thinning encompassing temporoparietal regions in AD and frontotemporal areas in FTD, we observed reductions of fractal dimension encompassing cingulate areas and insula for both conditions, but specifically involving orbitofrontal cortex and paracentral gyrus for FTD (FDR p < 0.05). Correlational analyses between fractal dimension and cognition showed that these regions were particularly vulnerable with regards to memory and language impairment, especially in FTD.ConclusionWhile the present study demonstrates globally similar patterns of fractal dimension changes in AD and FTD, we observed distinct cortical complexity correlates of cognitive domains impairment. Further studies are required to assess cortical complexity measures at earlier disease stages (e.g., in prodromal/asymptomatic carriers of FTD-related gene mutations) and determine whether fractal dimension represents a sensitive imaging marker for prevention and diagnostic strategies.
| S-EPMC7338220 | biostudies-literature
Project description:BackgroundMultiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care.MethodsWe searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic.ResultsWe included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs.ConclusionThe COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.
| S-EPMC8763414 | biostudies-literature
Project description:IntroductionPeople with dementia develop progressive difficulties conducting basic activities of daily living, often requiring considerable assistance from caregivers. Many people with dementia, particularly in the advanced stages, can refuse assistance with care leading to difficult interactions. The ways in which refusals of care can be best reduced are unknown. Using a realist approach, this study aims to develop and refine evidence-based programme theories showing which mechanisms of interventions contribute to reducing refusals of care between caregivers and people with dementia, in which contexts, how and why.Methods and analysisThe realist synthesis will be conducted in three iterative stages.Stage 1 will develop initial programme theories through secondary analysis of caregivers and persons with dementia interviews and observations, a preliminary exploratory literature review and team discussions. After initial programme theory development, the focus of the synthesis will be decided by the study team.Stage 2 will involve conducting focused, iterative and targeted literature searches to test and refine our initial programme theories considering the evidence for each setting: hospital, care home, home care and family. Data synthesis will use a realist lens to examine what works for whom in what circumstances and how, and organise related evidence to context-mechanism-outcome configurations whenever possible.Stage 3 will use stakeholder interviews to explore reactions to the programme theories and enhance validity after integration of these findings, recommendations and conclusions will be developed.Ethics and disseminationThe NHS Social Care Research Ethics Committee has approved the interview stage of this study (REC reference: 24/IEC08/0007; IRAS project ID: 338274). Informed consent will be obtained from all interviewees prior to data collection. Findings will be disseminated via peer-reviewed publications, conference presentations and accessible information for key stakeholders.Propspero registration numberCRD42024496072.
| S-EPMC11367303 | biostudies-literature
Project description: Not available
| S-EPMC8925088 | biostudies-literature
Project description:Health care and social services such as physician visits and support groups used by dementia caregivers for themselves were examined. Caregivers (N = 642) were from the Resources for Enhancing Alzheimer's Caregivers Health (REACH II) study.Caregiver predisposing, enabling, and need variables were examined using chi-squared and t-tests to characterize service users. Stagewise linear regression was used to explain numbers of services used.Predisposing, enabling, and need variables were significantly related to dementia caregivers' service use. In regression, caregivers who were older, more educated, married, not employed, depressed, with functional disability needs, more illness-related reduced activity days, more medications, more symptoms, and fewer hours on duty per day used significantly more services for themselves. The statistically significant model explained 22.2% variance in numbers of services used. Service users, compared with nonusers, evidenced greater burden, bother with behaviors, and more desire to institutionalize.This study shows that caregiver service use is related to caregiver characteristics. Future work should examine the impact of caregiving on health care and social service use and costs. The societal costs of caregiving may be better understood when we account for additional service use by caregivers themselves. A significant clinical and policy issue is who should assess and support the caregiver. Possibilities include the care recipient's health care practitioner, the caregiver's health care practitioner, or a formal caregiver-focused program based in the health care system or the social service network.
| S-EPMC5181390 | biostudies-other
Project description: Not available
| S-EPMC9905325 | biostudies-literature
Project description:ObjectivesHealthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of 'self-organisation' can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer's and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment.DesignA process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Analysis adopted a critical realist perspective and a deductive-inductive approach to identify patterns in how the intervention operated.SettingThe GREAT intervention was delivered through home visits by therapists, in eight regions in the UK.ParticipantsSix therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed.InterventionA 16-week cognitive rehabilitation programme for people with mild-to-moderate dementia.Results'Self-organisation' of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of 'social support'. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation.ConclusionsResearchers are increasingly adopting complexity theory to understand interventions. This study extends the application of complexity theory by demonstrating how 'self-organisation' was a useful concept for understanding aspects of the intervention that would have been missed by focusing on formal intervention components. Analysis of self-organisation could enhance future process evaluations and implementation studies.Trial registration numberISRCTN21027481.
| S-EPMC8549661 | biostudies-literature
Project description:ObjectiveThe purpose of this study was to clarify the microlevel determinants of the economic burden of dementia care at home in Japanese community settings by classifying them into subgroups of factors related to people with dementia and their caregivers.DesignA cross-sectional online survey.Participants4313 panels of Japanese research company who fulfilled the following criteria: (1) aged 30 years or older, (2) non-professional caregiver of someone with dementia, (3) caring for only one person with dementia and (4) having no conflicts of interest with advertising or marketing research entities.Primary outcome measuresInformal care costs and out-of-pocket payments for long-term care (LTC) services.ResultsFrom 4313 respondents, only 1383 caregivers in community-settings were included in this analysis. We conducted a χ² automatic interaction detection analysis to identify the factors related to each cost (informal care costs and out-of-pocket payments for LTC services) divided into subcategories. In the resultant classifications, informal care cost was mainly related to caregivers' employment status. When caregivers acquired family care leave, informal care costs were the highest. On the other hand, out-of-pocket payments for LTC were related to care-need levels and family economic status. Activities of Daily Living and Instrumental Activities of Daily Living functions such as bathing, toileting and cleaning were related to all costs.ConclusionThis study clarified the difference in dementia care costs between classified subgroups by considering the combination of the situations of both people with dementia and their caregivers. Informal care costs were related to caregivers' employment and cohabitation status rather to the situations of people with dementia. On the other hand, out-of-pocket payments for LTC services were related to care-need levels and family economic status. These classifications will be useful in understanding which situation represents a greater economic burden and helpful in improving the sustainability of the dementia care system in Japan.
| S-EPMC6629423 | biostudies-literature