A survey of the experience of living with dementia in a dementia-friendly community.
Ontology highlight
ABSTRACT:
SUBMITTER: Darlington N
PROVIDER: S-EPMC8216308 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:OBJECTIVES:To apply and evaluate dementia-friendly community (DFC) principles in prisons. DESIGN:A pilot study and process evaluation using mixed methods, with a 1-year follow-up evaluation period. SETTING:Two male prisons: a category C sex offender prison (prison A) and a local prison (prison B). PARTICIPANTS:68 participants-50 prisoners, 18 staff. INTERVENTION:The delivery of dementia information sessions, and the formulation and implementation of dementia-friendly prison action plans. MEASURES:Study-specific questionnaires; Alzheimer's Society DFC criteria; semi-structured interview and focus group schedules. RESULTS:Both prisons hosted dementia information sessions which resulted in statistically significant (p>0.05) increases in attendees' dementia knowledge, sustained across the follow-up period. Only prison A formulated and implemented a dementia action plan, although a prison B prisoner dedicated the prisoner magazine to dementia, post-information session. Prison A participants reported some progress on awareness raising, environmental change and support to prisoners with dementia in maintaining independence. The meeting of other dementia-friendly aims was less apparent. Numbers of older prisoners, and those diagnosed with dementia, appeared to have the greatest impact on engagement with DFC principles, as did the existence of specialist wings for older prisoners or those with additional care needs. Other barriers and facilitators included aspects of the prison institution and environment, staff teams, prisoners, prison culture and external factors. CONCLUSIONS:DFC principles appear to be acceptable to prisons with some promising progress and results found. However, a lack of government funding and strategy to focus action around the escalating numbers of older prisoners and those living with dementia appears to contribute to a context where interventions targeted at this highly vulnerable group can be deprioritised. A more robust evaluation of this intervention on a larger scale over a longer period of time would be useful to assess its utility further.
| S-EPMC6701663 | biostudies-literature
Project description:ObjectivesTo identify features of programmes and approaches to make healthcare delivery in secondary healthcare settings more dementia-friendly, providing a context-relevant understanding of how interventions achieve outcomes for people living with dementia.DesignA realist review conducted in three phases: (1) stakeholder interviews and scoping of the literature to develop an initial programme theory for providing effective dementia care; (2) structured retrieval and extraction of evidence; and (3) analysis and synthesis to build and refine the programme theory.Data sourcesPubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Library, NHS Evidence, Scopus and grey literature.Eligibility criteriaStudies reporting interventions and approaches to make hospital environments more dementia-friendly. Studies not reporting patient outcomes or contributing to the programme theory were excluded.ResultsPhase 1 combined findings from 15 stakeholder interviews and 22 publications to develop candidate programme theories. Phases 2 and 3 identified and synthesised evidence from 28 publications. Prominent context-mechanism-outcome configurations were identified to explain what supported dementia-friendly healthcare in acute settings. Staff capacity to understand the behaviours of people living with dementia as communication of an unmet need, combined with a recognition and valuing of their role in their care, prompted changes to care practices. Endorsement from senior management gave staff confidence and permission to adapt working practices to provide good dementia care. Key contextual factors were the availability of staff and an alignment of ward priorities to value person-centred care approaches. A preoccupation with risk generated responses that werelikely to restrict patient choice and increase their distress.ConclusionsThis review suggests that strategies such as dementia awareness training alone will not improve dementia care or outcomes for patients with dementia. Instead, how staff are supported to implement learning and resources by senior team members with dementia expertise is a key component for improving care practices and patient outcomes.Trial registration numberCRD42015017562.
| S-EPMC5541590 | biostudies-literature
Project description:ObjectivesPaid caregivers (eg, home health aides and personal care attendants) provide hands-on care that helps individuals with dementia live in the community. This study (a) characterizes paid caregiving among community-dwelling individuals with dementia and (b) identifies factors associated with receipt of paid care.DesignCross-sectional analysis.SettingThe 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare recipients aged 65 years and older.ParticipantsCommunity-dwelling individuals with dementia (n = 899).MeasurementsPaid and family caregiving support was determined by participant or proxy report of help received with functional tasks. Multivariable logistic regression was used to examine factors associated with receipt of paid care. NHATS population sampling weights were used to produce national paid caregiving prevalence estimates.ResultsOnly 25.5% of community-dwelling individuals with dementia received paid care, and 10.8% received 20 hours or more of paid care per week. For those who received it, paid care accounted for approximately half of the 83 total caregiving hours (paid and family) that they received each week. Among the subgroup of individuals with advanced dementia (those with impairment in dressing, bathing, toileting, and managing medications and finances), nearly half (48.3%) received paid care. Multivariable analysis, adjusting for sociodemographic, family caregiving support, functional, and clinical characteristics, found that the odds of receiving paid care were higher among men (odds ratio [OR] = 1.91; 95% confidence interval [CI] = 1.24-2.95), the unmarried (OR = 2.20; 95% CI = 1.31-3.70), those with Medicaid (OR = 2.16; 95% CI = 1.27-3.66), and those requiring more help with activities of daily living (ADLs) (OR = 1.32; 95% CI = 1.18-1.48) and instrumental ADLs (OR = 1.29; 95% CI = 1.14-1.46).ConclusionsNew ways of making paid caregiving more accessible throughout the income spectrum are required to support family caregivers and respect the preferences of individuals with dementia to remain living in the community. J Am Geriatr Soc 68:186-191, 2019.
| S-EPMC6957088 | biostudies-literature
Project description:To identify and examine the published qualitative research evidence relative to the experience of living with dementia.Metasynthesis was used as the methodological framework to guide data collection and analysis.Three themes were identified. The first theme considered the main condition-related changes experienced by people with dementia (PWD) and showed how these are interlinked and impact upon various areas of people's lives. The second theme indicated that amidst these changes, PWD strive to maintain continuity in their lives by employing various resources and coping strategies. The third theme underlined the role of contextual factors. The reviewed evidence indicates that, the emerging experience of PWD and their potential to adjust to the continuous changes is influenced by access to and quality of both personal and contextual resources which remain in a constant, transactional relationship to each other.The findings were interpreted and discussed in the context of relevant theoretical frameworks and research evidence. It was considered that current evidence and findings presented in this review can be further explored and expanded upon in a more systematic way through research conducted within the theoretical framework of dynamic systems theory. Further research would be also beneficial to explore the subjective experience of dementia from a participatory perspective. Exploring the application of these theoretical standpoints would contribute to the current state of knowledge and offer both PWD and carers fresh perspective on the nature of change and potential for adaptability in dementia.
| S-EPMC5946830 | biostudies-other
Project description:ObjectivesTo describe and explain the outcomes of community dementia friendly initiatives (DFIs) for people with dementia and their caregivers to inform the development and tailoring of DFIs.MethodsLiterature searches on DFIs were performed through two systematic online database searches of PubMed, Embase, ASSIA, CINAHL and Google scholar. Papers were only included if they evaluated outcomes using empirical data from people with dementia or caregivers. Data collection and analysis were guided by the categorization in the DEM-FACT taxonomy and RAMESES guidelines for realist reviews.ResultsOf 7154 records identified, 22 papers were included with qualitative, mixed method and quantitative study designs. The synthesis led to a description of programme theories addressing caring, stimulating and activating communities. Outcomes for people with dementia and caregivers included having contact with others, enjoyment and decrease of stress and, lastly, support. This synthesis also indicated how people with dementia participated in a specific role in DFIs, such as patient, team member or active citizen.ConclusionsDFIs generate different outcomes for people with dementia and caregivers, depending on the kind of initiative and the specific role for people with dementia. These findings could be a catalyst for initiation and further development of DFIs in a dementia friendly community (DFC). This draws attention to the multiple aspects of DFCs and supports reflection on their essential principles.
| S-EPMC9299867 | biostudies-literature
Project description:BACKGROUND:The heterogeneity of symptoms across dementia subtypes has important implications for clinical practice and dementia research. Variation in subtypes and associated symptoms may influence the capability to live well for people with dementia and carers. The aim of this study is to investigate the potential impact of dementia subtypes on the capability to live well for both people with dementia and their carers. METHODS:The analysis was based on the 1283 dyads of community-dwelling people with dementia and carers in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, a large cohort study in Great Britain. Capability to live well was defined using three measures: quality of life, life satisfaction and wellbeing. Structural equation modelling was used to investigate capability to live well in seven dementia subtypes: Alzheimer's disease (AD), Vascular dementia (VaD), mixed AD/VaD, frontotemporal dementia (FTD), Parkinson's disease dementia (PDD), Lewy body dementia (LBD) and unspecified/other, accounting for dyadic data structure and adjusting for age and sex, type of relationship between person with dementia and their carer and the number of chronic conditions. RESULTS:The major subtypes in this study population were AD (56%), VaD (11%) and mixed AD/VaD (21%). Compared to participants with AD, people with non-AD subtypes generally reported a lower capability to live well. Carers for people with PDD (-?1.71; 95% confidence interval (CI) -?3.24, -?0.18) and LBD (-?2.29; 95% CI -?3.84, -?0.75) also reported a lower capability to live well than carers for people with AD. After adjusting for demographic factors and comorbidity, PDD (-?4.28; 95% CI -?5.65, -?2.91) and LBD (-?3.76; 95% CI -?5.14, -?2.39) continued to have the strongest impact on both people with dementia and their carers. CONCLUSIONS:This study suggests a variation in capability to live well across dementia subtypes. It is important for care providers to consider different needs across subtypes. Health professionals who provide post-diagnostic support may need to pay more attention to the complex needs of people living with PDD and LBD and their carers.
| S-EPMC6131832 | biostudies-literature
Project description:No studies have measured the periodontal inflamed surface area in people with dementia, although periodontal disease is a major health issue in this group. This study aimed to determine the relationship between dementia severity and periodontal inflamed surface area. An interdisciplinary team, including a dentist and psychiatrist, conducted an in-home survey of older people living in the community. This cross-sectional study was designed as part of a larger cohort study. The interdisciplinary team visited 198 individuals with cognitive decline. We surveyed the clinical dementia rating, periodontal inflamed surface area, number of teeth, and other health issues. We used multiple linear regression analysis to assess the 75 people who were able to take part in all the visits. Number of teeth (Beta = 0.479, p < 0.001), clinical dementia rating (Beta = 0.258, p = 0.013), and age (Beta = 0.250, p = 0.017) were independently associated with periodontal inflamed surface area after adjusting for biological sex, depression, diabetes, collagen disease, visual disorder, and osteoporosis medication. To make communities more dementia-friendly, we must protect older people with dementia from developing poor oral health, which may require home visits for dental assessment.
| S-EPMC8618461 | biostudies-literature
Project description:Aims and objectivesTo identify research undertaken in the last decade addressing continence for people living with dementia (PLWD) in the community. To highlight gaps and develop recommendations for future research, taking into account the experiences and priorities of PLWD, caregivers and healthcare professionals.MethodsA critical review with an Expert Review Group (ERG) comprising researchers, PLWD and facing continence issues, caregivers and other professional stakeholders. Findings are reported in line with the COREQ and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklists.BackgroundCaregivers rate the independent use of the toilet as the most important activity for PLWD to retain. However, in 2009 a review identified shortfalls in knowledge and praxis around promoting continence and managing incontinence for PLWD in the community. As absolute numbers of people with dementia are predicted to increase, it is imperative to examine whether these deficits have been addressed.ResultsOf 3,563 records identified, 57 full-text articles were reviewed. The ERG developed a conceptual model to summarise research evidence according to the extent of the challenge (neuropathology and clinicopathology, prevalence and incidence), gateways to continence services, effectiveness of interventions, outcomes and the potential influences of personal resources, socio-cultural factors and environmental contexts.ConclusionsResearch on (in)continence for PLWD in the community is under-developed and has not increased substantially over the last decade. ERG recommendations for future research included user involvement to identify appropriate quality indicators to assess the effectiveness of interventions.Relevance to clinical practiceThere is insufficient evidence on which to base decisions on continence care for PLWD in the community. Omission from continence care guidelines has the effect of marginalising and silencing this population. User involvement in clinical research and developing practice guidelines has the potential for positive systems change.
| S-EPMC9292568 | biostudies-literature
Project description:INTRODUCTION:Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite. METHODS:This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach. RESULTS:The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others. DISCUSSION AND CONCLUSION:Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.
| S-EPMC5999274 | biostudies-literature
Project description:BackgroundDementia friendly communities (DFCs) are seen as key to participation of people with dementia and carers. Dementia-friendly initiatives (DFI) are important building blocks for the growth of DFCs. Therefore, it is essential to understand how DFIs are developed and sustained to secure the growth of DFCs. This study identifies contextual factors and mechanisms that influence the development and sustainment of Dutch DFIs. It also explains how these contextual factors and mechanisms are interrelated and the outcomes to which they lead.MethodsMixed methods, namely interviews, observations, documentation and focus groups, were used for this realist multiple case study. Participants were professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2) who were involved in development and sustainment of DFIs in four Dutch DFCs.ResultsThis study revealed three middle-range program theories as final outcomes: development of a support base, collaboration, and participation in DFIs by people with dementia and carers. These theories address institutional, organisational, interpersonal and individual levels in the community that are essential in development and sustainment of DFIs.ConclusionsThe development and sustainment of DFIs requires the development of a support base, collaboration, and participation in DFIs by people with dementia and their carers.
| S-EPMC9909928 | biostudies-literature