Dementia (London, England)最新文献

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.

Dementia is a cluster of disorders affecting a growing number of people around the world, with consequent disruption to the lives of those diagnosed and their loved ones. The impact of dementia on families has been widely documented; however, this is often done through the lens of caregiver burden. In contrast, the present research explores the wants and needs of couples living with dementia in terms of their shared leisure activities. Five Australians living with dementia and their partners participated in recorded semi-structured interviews. Thematic analysis of transcribed interviews produced four main themes and 15 subthemes highlighting this population's needs and values regarding leisure. Themes included, "increased awareness of how dyads spend their time", "awareness of dyadic changes within the relationship", "appreciation of fulfilling moments", and "person with dementia's engagement/activity moderation and support by care partner". The results support existing research including changes to relationship dynamics and lifestyle post-diagnosis. This research indicates the importance of leisure interventions that focus on improving socialisation for people with dementia and their partners and supports increased opportunities for quality time together.

IntroductionDementia is an escalating global concern driven by aging populations, significantly impacting Low-Middle-income countries like Albania. Formal caregivers face a unique set of ethical dilemmas and concerns when caring for individuals with dementia and their families. The lack of ethical guidelines and policies further complicates decision-making in these contexts. This is part of a larger EDEM project.AimThis study aims to explore the extent to which ethical dilemmas and concerns in caring for people with dementia are observed and experienced by formal caregivers in Albania.MethodsData were collected through face-to-face semi-structured discussions with three homogeneous focus groups of formal caregivers from diverse educational backgrounds, and analyzed using thematic analysis within the conceptual framework of Interpretative Phenomenological Analysis (IPA).ResultsA total of 23 participants (8 nurses, 7 social workers and 8 doctors) were included. Three main themes emerged which were: (1) Ethical Tensions in Caring for an individual with dementia and Family involvement; (2) The Multifaceted Burden of Dementia Care on Families; and (3) Quality of Care and Resource Allocation; Training and education of healthcare professionals. In patriarchal societies like Albania, caregivers' personal and cultural beliefs may conflict with their professional duties or the preferences of individuals with dementia and their families.ConclusionsFormal caregivers provide insights into their experiences with ethical dilemmas, concerns, and decision-making processes when caring for individuals with dementia. The findings underscore the critical necessity for developing and implementing clear policies, guidelines, community awareness initiatives, and comprehensive training programs for multidisciplinary teams, aimed at promoting optimal care standards.

The number of people with dementia living alone is predicted to double by 2039. People with dementia may live alone through choice and others due to life events like bereavement. There are unique challenges to living alone for people with dementia, their care partners and services supporting those individuals. The current review sought to summarise the psychosocial needs reported by people with dementia who live alone. Searches were completed accessing Academic Search Ultimate, MEDLINE, CINAHL Ultimate, APA PsycArticles and APA PsycInfo. Eligible articles explored the needs or experiences of people with dementia living alone through qualitative or mixed methods. The data was synthesized narratively, and the National Institute of Care and Health Excellence's quality appraisal checklist was used to assess all included studies. Needs were identified across all domains of Kitwood's model; love, identity, attachment, inclusion, occupation and comfort. The data revealed overlapping needs between those with dementia who live alone and those who live with others but importantly, needs that were distinct or exacerbated by living alone with dementia. Specifically, threat to personhood without others to maintain stories about identity and the management of living at home with the recognition that this would eventually end. The heterogeneity of people with dementia who live alone was highlighted and the gaps in the representation of the needs of specific groups in the research were considered such as individuals from the LGBTQ + community. Thus, the need for an intersectional and person-centred approach to future research and clinical practice was discussed.