Dementia (London, England)最新文献

Using a theoretical framework that underscores the social dimension of meaning-making processes, this study delved into the social representations of dementia in the Italian context and the personal meanings expressed by three distinct groups of participants. The study involved ninety-two episodic interviews with people living with dementia and those who had provided care as professionals or informal caregivers. The collected data underwent various types of analysis. A hierarchical descending analysis was initially conducted using IRaMuTeQ to elucidate the lexical worlds that form the shared idea of dementia. This was followed by a more interpretative thematic analysis using Atlas.ti. The results reveal the diverse perspectives of the groups in articulating the contents of social representations, which can guide actions in the care and management of the disease.

Art-based interventions for people living with dementia have been successful in improving diverse areas of quality of life and care. Within the spectrum of art-based interventions, poetry has shown an impact on communication, socialization, and the regulation of behavioral outcomes. This scoping review aims to identifying and analyzing how and in what contexts poetry has been used as a form of therapy for people living with dementia and their caregivers. It also looks at the methodology, design, and outcomes. After screening 1106 articles across multiple databases, 23 underwent full-text review, and six were included in the final extraction. Inclusion criteria focused on people living with dementia aged 50+ and/or their family caregivers, encompassing any form of language-based poetry intervention (e.g., written, spoken word). Both completed and ongoing original research reporting intervention outcomes in peer-reviewed articles or certain types of grey literature were considered. The review covers literature published between 1993 and 2023. Additional details on the poetry interventions including collaboration, facilitation, duration, and underlying theory, were also extracted. The findings highlight the effectiveness of poetry interventions for people living with dementia and their caregivers as person-centered activities fostering personhood and social connectedness. Particularly spoken-word poetry-based programs showed positive impacts on participants' self-expression, personhood, and agency. Two main barriers for wider dissemination were identified. First, methodology and outcome reporting conventions in some extracted studies diverge from broader biomedical/health and social science norms. Second, study design and data analysis are not reported in ways that evidence of programs' impact can be assessed and supported. Additionally, there is a lack of literature focused on the development and implementation of poetry-based intervention programs aimed at serving under-represented and minority populations. Recommendations for future projects include multidisciplinary collaborations, diversifying methodological approaches, and attention to cross-cultural approaches to program development and implementation.

Memory clinics provide ongoing, community-based care for people living with dementia as well as supporting their carers. Much of the research to date has measured quantitative carer outcomes, which may fail to demonstrate the true value of the clinics to carer well-being. Therefore, this paper seeks to understand the carer's role and explore the impacts of a memory clinic on the carers of people living with dementia. A qualitative descriptive approach was used to inform semi-structured interviews with six carers and five clinic staff with direct carer contact. Interviews were audio-recorded and analysed using thematic analysis. Three themes were identified: perceptions of the carer role, psychological well-being and experience of the clinic. Carers experienced the hard work of their caring role and struggled with losing their sense of self and their social networks. The psychological well-being of carers was impacted by feelings of frustration, fatigue, depression and grief. Carers' experiences of the clinic focused on the positive impact resulting from individualised education, respite in a safe space and networking resulting from the memory clinic. The memory clinic was perceived as a valuable support for carers, with individualised support, respite and networking highly regarded. The primary limitations were the challenge of clinic access and the availability of additional clinic days.

Background and Aims: UTIs greatly impact hospitalization rates for people living with dementia. This study aims to craft a framework through a scoping review, assessing UTI symptoms, risk factors, and non-pharmacological prevention strategies in older people living with dementia. Research Design and Methods: Our scoping review followed PRISMA-ScR guidelines, exploring databases (PubMed, CINAHL, Embase, Web of Science) for topics like geriatric care, urinary tract issues published from January 1977 to April 2023. Two reviewers assessed data, organizing it using the Social-Ecological Model to construct the UTI Prevention (UTIP) framework. Results: The literature review scrutinized 1394 articles, selecting 14 through rigorous evaluation. It detailed demographic characteristics, synthesized UTI symptoms, 14 risk factors, and seven outcomes for older people living with dementia. Moreover, it outlined ten preventive domains and proposed a comprehensive UTI Prevention (UTIP) framework spanning individual, relational, community, and societal levels. This framework aims to prevent UTIs among older people living with dementia, integrating risk factors and outcomes to bolster effective prevention strategies for this population. Discussion and Implications: The review introduced a UTIP framework, and non-pharmacological preventive measures tailored for elderly people living with dementia. However, some factors in the framework require further validation to strengthen their associations with outcomes. Preventive measures from studies had limitations like small sample sizes, bias risks, and inconsistent findings. Future research should prioritize robust randomized trials with strong statistical power, strict criteria, and consistent individual-level interventions to boost outcome reliability and validity. Such efforts will enhance the credibility of findings and contribute significantly to refining preventive strategies for this vulnerable population.

It is important to understand the range of transitional care models that support people with dementia who have complex health needs. This is to avoid unnecessary hospitalisations, to maximise any benefits in care transfers and, may increase access to higher quality care and reduce the incidence of low value care. A scoping review of peer-reviewed literature was conducted to investigate and summarise nurse or allied health-led models of transitional dementia care in Australia. Nurse and allied health-led transitional care models for older people and people with dementia included models that emphasised community services, hospital avoidance, out-reach to residential care, emergency department streamlining, intensive dementia support, or a combination (n = 14). Health outcomes reported included decreased presentations, length of stay and costs in emergency departments; reduction in hospital admissions and in medication use and increase in non-pharmacological interventions. Future models of nurse or allied health-led care should emphasise the need for localised relational approaches by the transitional staff to support continuity of care as crucial aspects for behavioural and gerontological transitional care.

African Caribbean people in the UK have a higher incidence of dementia compared to White people. Despite this, they are less likely to seek help from services. Previous research has investigated barriers to help-seeking for dementia in ethnic minorities, but this research has typically involved samples drawn from a range of ethnic groups. Given their increased risk, it would be useful to focus specifically on the African Caribbean community. Fourteen African Caribbean participants, with experience of supporting a family member with memory loss, participated in an interview exploring their perceptions of barriers to help-seeking. Reflexive Thematic Analysis was used to guide the collection and analysis of interview data. Historical experiences of the African Caribbean community have made them self-reliant and stoical in the face of adversity, and unwilling to seek help, particularly from a society that rejected them. Memory loss is likely to be attributed to old age or harmless individual traits, and the concept of dementia is not well rooted in the culture. Shame and stigma attached to mental difficulties in the culture also make people unwilling to seek help and motivated to mask their difficulties. There are cultural and familial expectations that care should be provided by daughters within the family, not by outsiders. Participants were reluctant to make use of services due to concerns that, because of racism, the family member will receive a poorer quality service, a culturally insensitive service, or be mistreated. There is a need to raise awareness and understanding of dementia in this community, and to tackle the stigma associated with it. Ongoing racism and cultural insensitivity within services also need to be addressed. Because of the community's mistrust of government and mainstream institutions, African Caribbean community organisations should be funded to lead efforts to deal with these issues.

Background: Black and African American (BAA) adult males have the worst overall health relative to any other race or gender in the United States. The prevalence of Alzheimer's disease is twice as high for BAA adults. Yet, little is known about how the social determinants of health (SDoH) influence the views of BAA adult males' perception of Alzheimer's disease. Methods: We conducted a secondary analysis of ethnographic interview data from BAA adult male participants (n = 10) at an NIA-funded Alzheimer's Disease Research Center. Participants included both persons living with dementia (n = 6) and individuals providing care to a person living with dementia (n = 4) who were purposively sampled to ensure that a range of perspectives were represented in the parent study, Recruitment Innovations for Diversity Enhancement in Alzheimer's disease Research. Interview transcripts were first examined to organize the data within categories informed by the SDoH. Data within each SDoH category were then analyzed to identify themes and explore potential relationships across SDoH categories. Results: All individuals providing care to a person living with dementia identified as male with a mean age of 75 (SD ± 12.5); 80% reported three or more years of post-secondary education and 100% spontaneously mentioned elements of the SDoH in response to questions about their experiences with dementia and motivations for participation in Alzheimer's disease research. A perceived relationship between Alzheimer's disease and SDoH was revealed. While variations in lived experience were noted, themes including locus of control/agency, perception is reality, mistrust and othering, consistently emerged. Conclusions: Despite the shared social characteristics race and gender among the individuals providing care to a person living with dementia, their perceptions of Alzheimer's disease in relation to SDoH were not monolithic. Findings support the need for additional research to examine the perceptions and lived experiences of Alzheimer's disease among BAA adult males.

As a life-limiting illness, dementia requires a holistic approach to care, where spiritual support plays a crucial role in helping individuals and their caregivers find meaning and solace. Our aim was to systematically map the research conducted on psychosocial interventions developed to provide spiritual support for people living with dementia and their caregivers from diagnosis and across the disease trajectory. A scoping review was conducted to explore the breadth of research on 'spiritual support' in dementia care, encompassing interventions, service delivery models, programs, toolkits, approaches, and activities. Electronic databases (MEDLINE (Pubmed), CINAHL, PsycINFO, EMBASE, Web of Science and The Cochrane Library) from inception until February 2025. References of included papers were hand searched. The quality of studies was assessed using the Mixed Methods Appraisal Tool. The findings were interpreted jointly with seven people with dementia and six family caregivers. Twelve papers met the eligibility criteria, reporting on interventions for people with dementia, caregivers, staff skills, care environments, and inclusive worship. Most studies were exploratory, with only one RCT. Studies originated from the USA (n = 4), Europe (n = 4), Australia (n = 2), Taiwan (n = 1), and Canada (n = 1). Eight focused on community settings, three on residential care, and one included both. Six studies involved people with dementia: four with mild to moderate, one with moderate to advanced, and one with mixed severity. Outcomes were inconsistent and there was a lack of longitudinal observational studies to track changes over time. Spiritual support should be personalised and multifaceted, incorporating creative activities and tailored interventions that reflect individual preferences and diverse backgrounds. Future research should employ longitudinal observational and intervention designs.

People with dementia are living longer in the community and reliance on informal caregivers is increasing. Few studies have focused on the experiences of adult-daughter caregivers (daughter caregivers), who may have increased risk of depression and lack of support compared with spousal caregivers. We aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia in Sweden. We conducted semi-structured interviews with 23 daughter caregivers. A topic guide was used to explore experiences of accessing and receiving formal and informal support in their caregiving role. We analyzed the interviews using reflexive thematic analysis. We generated two themes: Types of support, and Mismatched support. The first theme, with subthemes Sharing experiences, Professional support, and Getting some relief, captured the caregiver support context with different types of support accessed and received by daughter caregivers, with peer support and informational support identified as important components of caregiver support. The second theme, with subthemes Lack of tailoring to daughter caregivers' needs and Difficulties navigating support, captured how daughter caregivers perceived existing support to be inadequate to meet their specific needs and the complex structure of available support limited their opportunities to access support. Daughter caregivers experience a mismatch between the type of support accessed and received and their specific support needs. Support better tailored to the needs and situation of daughter caregivers of people with dementia in Sweden is required. The potential of utilizing peer support for caregivers warrants further research.

As the prevalence of dementia rises exponentially globally, instituting practices to support the dying process of people affected by dementia is a public health priority. However, end-of-life quality indicators such as place of death provide limited information about the totality of the dying process. Hence, this study's aim was to identify factors affecting the relatively understudied concept of final place of care (where care was received in the last three days of life i.e. home/inpatient hospice/hospital) and its concordance with previously stated preferences (goal-concordance). A retrospective cohort study was conducted using secondary data (electronic medical records) from 284 individuals enrolled in a home-based palliative care service for people with advanced dementia in Singapore. Despite demonstrating positive impacts, the service was unable to meet some individuals' end-of-life preferences. Analysis used multivariate binomial logistic regression, concordance and sensitivity analyses. Results found home to be the most common final place of care (81.7%). Better biological and functional status, and inconsistent preferences for place of care and death predicted hospital admission for care (9.2%). Discomfort, oral feeding, psychosocial challenges, and family unemployment predicted inpatient hospice admissions (9.2%); these were often late and unplanned, suggesting a preference for home until death was imminent. Better prognosis, infection two weeks before death/admission, higher caregiver burden and psychosocial challenges predicted non-concordance with preferences (14.4%). The results highlight the unpredictable, protracted trajectory of people with advanced dementia and the multifaceted challenges of end-of-life care and death. Unlike place of death, relatively stable factors (sociodemographic, chronic comorbidities) had no effect on final place of care. These fresh insights, supported by findings about end-of-life transitions in international literature, have implications for policies and practices to advance the global health goal of facilitating people with advanced dementia not just to die but to spend their final days at their place of choice.