A survey of the experience of living with dementia in a dementia-friendly community.
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SUBMITTER: Darlington N
PROVIDER: S-EPMC8216308 | biostudies-literature | 2021 Jul
REPOSITORIES: biostudies-literature
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A survey of the experience of living with dementia in a dementia-friendly community.
Darlington Nicole N Arthur Antony A Woodward Michael M Buckner Stefanie S Killett Anne A Lafortune Louise L Mathie Elspeth E Mayrhofer Andrea A Thurman John J Goodman Claire C
Dementia (London, England) 20201008 5
Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experience of living in a DFC. Two-hundred and forty people living with dementia completed a cross-sectional survey in six DFCs across England. Around half of ...[more]
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Project description:ObjectivesTo apply and evaluate dementia-friendly community (DFC) principles in prisons.DesignA pilot study and process evaluation using mixed methods, with a 1-year follow-up evaluation period.SettingTwo male prisons: a category C sex offender prison (prison A) and a local prison (prison B).Participants68 participants-50 prisoners, 18 staff.InterventionThe delivery of dementia information sessions, and the formulation and implementation of dementia-friendly prison action plans.MeasuresStudy-specific questionnaires; Alzheimer's Society DFC criteria; semi-structured interview and focus group schedules.ResultsBoth 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.ConclusionsDFC 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:Dementia-friendly communities (DFC) have emerged as a global movement to make communities more supportive and inclusive of people living with dementia (PLWD) and their care partners. This study contributes to a nascent body of research on DFC initiatives by building theory on their local implementation. Based on an analysis of data from semi-structured interviews with 23 leaders of initiatives in Massachusetts (United States), we aimed to identify key dimensions of variation in the implementation of DFC initiatives. We found that all initiatives engaged in a common set of activities, such as the facilitation of training about dementia and improving services for PLWD. Although initiatives mostly engaged in these activities in ways that targeted the community at large, in some instances, they concentrated their efforts on enhancing the dementia-friendliness of their own organizations. We describe ways in which financial, social, and human capital operate as key factors that influence the initiatives' primary focus (i.e., the community at large or their own organization). Our findings suggest the importance of helping DFC initiative leaders more explicitly specify the focal ecological level of their efforts throughout the trajectory of their work, especially in the context of resource considerations. Results also indicate ways in which DFC initiative efforts at one systems level can support those at other levels over time.
| S-EPMC10138101 | biostudies-literature
Project description:BackgroundDementia-friendly communities (DFCs) are seen as key to the inclusion and participation of people with dementia and carers. Dementia-friendly initiatives (DFIs) are important building blocks for the growth of DFCs. The collaboration between different stakeholders is a central aspect in developing and sustaining DFIs.AimThis study tests and refines an initial theory about collaborating for DFIs with special attention for the involvement of people with dementia and their carers during the collaboration for DFIs. The realist approach is used for deepening contextual aspects, mechanisms, outcomes, and its explanatory power.MethodsA participatory case study design using qualitative data (focus groups, observations, reflections, minutes from meetings, and exit interviews) was executed in four Dutch municipalities that have ambitions to become dementia- friendly communities.ResultsThe refined theory on the collaboration for DFIs incorporates contextual aspects such as diversity, shared insights, and clarity. It draws attention to the importance of mechanisms such as the recognition of efforts and progress, informal distributed leadership, interdependency, belonging, significance, and commitment. These mechanisms resonate with feeling useful and feeling collectively powerful in the collaboration. The outcomes of collaboration were activation, getting new ideas, and fun. Our findings address how stakeholders' routines and perspectives impact the involvement of people with dementia and their carers during collaboration.ConclusionThis study provides detailed information about collaboration for DFIs. The collaboration for DFIs is largely influenced by feeling useful and collectively powerful. Further research is needed to understand how these mechanisms can be triggered with the involvement of people with dementia and their carers in the heart of the collaboration.
| S-EPMC10001691 | 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:PurposeBeing of working age while at the same time needing to help a partner with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this particular group of spouses. The aim of the study was to explore spouses' everyday experiences when living with a person with young onset dementia.MethodThe study had a descriptive qualitative design with semi-structured interviews with nine spouses. The interviews were analysed using content analysis.ResultThe interviewed spouses experienced emotions that varied from feelings of loneliness, frustration, and worry to peace of mind. They said that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also felt that they could use more support, both formal and informal.ConclusionThe spouse of a person with young onset dementia has a range of emotional experiences and has resourceful ways of handling everyday life. Various types of support are offered to spouses, however, they seemed to desire more from health care services.
| S-EPMC10946261 | biostudies-literature
Project description:BackgroundThe aim of this study is to 1) explore the experiences of people living with dementia interacting with DFCs and 2) identify factors that influence empower and support people living with dementia to live successfully in DFCs. The main elements of a DFC are related to people; communities; organisations and partnerships. There are over 200 organisations recognised as dementia-friendly in Northern Ireland (NI). This realist evaluation is to understand how DFCs work for people living with dementia, how positive outcomes are achieved, for whom and in what contexts do DFCs work best.MethodsA realist evaluation using case study methodology. The process evaluation includes a realist review of the literature, non-participant observation of people living with dementia in their local communities, semi-structured interviews to explore the facilitators and barriers to living well in DFCs and focus groups comprised of people living with dementia, family caregivers and people working in DFCs to support Context- Mechanisms and Outcomes (CMOs). This four-stage realist assessment cycle is used, including iterative rounds of theory development, data gathering, and theory testing. In the end, analysis will reveal context mechanisms that influence how dementia-friendly communities operate and present an initial theory of how people think, which, if adopted, may be able to alter current contexts so that "key" mechanisms are activated to generate desired outcomes.DiscussionTo give confidence in moving from hypothetical constructions about how DFCs could function to explanations of possible or observable causal mechanisms, the realist evaluation of a complex intervention incorporates a variety of evidence and perspectives. Despite playing a significant role in a person with dementia's everyday life, it appears that little is known about how communities function to achieve intended results. Even though there has been a lot of work to pinpoint the fundamentals and crucial phases of building DFCs, it is still unclear how people living with dementia benefit the most from these communities. This study intends to advance our understanding of how outcomes are produced for people living with dementia by contributing to the underlying theory of DFCs as well as addressing the primary research objectives.
| S-EPMC10251317 | biostudies-literature
Project description:AimsWe aim to identify existing empowerment interventions for people living with dementia and to explore which used interventions and projects are considered empowering and why.DesignThis was an online survey.MethodsWe conducted an online survey between May 2018 and July 2018 amongst professionals interested in dementia care in Europe. Interventions were clustered within the ecological model for health promotion. Reasons from respondents as to why they considered interventions to be empowering were analysed and structured according to a recently developed conceptual framework of empowerment for people living with dementia.ResultsSeventy-three respondents from 23 countries together mentioned 98 interventions or projects, of which 90 were unique. Interventions focused on the (inter)personal (n = 54), organizational (n = 15), communal (n = 6) and societal (n = 15) levels. A broad range of interventions were considered empowering, but no interventions were specifically developed for, nor aimed at, empowerment. Reasons as to why respondents considered these interventions as empowering fitted the framework's domains.ConclusionThis European survey provides insights into interventions considered empowering for people living with dementia. An important step that needs to be taken is to develop and test interventions that specifically aim to promote empowerment for people living with dementia.ImpactEmpowerment may encourage people with dementia to live the life they choose, and focus on what is possible, instead of what is no longer possible. Many interventions are considered as empowering for people living with dementia, however no interventions could be identified that were specifically developed for or aimed at empowerment. This study shows that for promoting empowerment, it is necessary to develop and test interventions that specifically aim for empowerment, do this in collaboration with relevant stakeholders, and in this way support people living with dementia to live according to their competencies, talents and wishes.
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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:The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.
| S-EPMC11475968 | biostudies-literature
Project description:Purpose of the studyTo identify and examine the published qualitative research evidence relative to the experience of living with dementia.Design and methodsMetasynthesis was used as the methodological framework to guide data collection and analysis.ResultsThree 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.ImplicationsThe 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.
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