Dementia (London, England)最新文献

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.

Background: Research shows a link between quality of care and quality of life in people with dementia, but potential differences between men and women remain unexplored. This study examined gender differences in types of care received, the quality of care and quality of life of people with dementia in the Netherlands. Gender differences were explored in the relation between quality of care and quality of life. Methods: Cross-sectional survey data were used of 449 people with dementia living in the Netherlands. Types of care were analysed with descriptive statistics and non-parametric tests. Perceived quality of care and quality of life were measured on a ten-point scale. Gender was analysed as a moderator in the quality of care-quality of life association using regression analysis. Included background characteristics were age and living situation. Results: More women received home care, while group meetings were more common among men. Quality of care ratings were similar for men (7.6) and women (7.5), indicating fair to good care. The average quality of life was slightly lower for women (6.9) than for men (7.1; b = -.251; p < .05). A higher quality of care was associated with a higher quality of life (b = .373; p < .05). The association between quality of care and quality of life was independent of the gender (b = -.035; p > .05). Conclusions: Men and women with dementia who were cognitively able to complete the survey differed in the types of care they received. On average, the respondents perceived the quality of care as fair to good. Quality of life was rated as fair, slightly higher for men. A higher quality of care was associated with a higher quality of life. Future studies should explore gender differences in family care and compare men and women receiving similar care.

BackgroundAs dementia emerges as a critical global health challenge, youth engagement is pivotal for building dementia-friendly communities. However, culturally sensitive dementia education models for Chinese youths remain underdeveloped. This study aims to explore the perceptions and experiences of a hybrid dementia education program among Macao youths.MethodsA qualitative exploratory study was conducted with 39 Macao youths (aged 15-24; 35.9% male) recruited through purposive sampling. Participants engaged in a hybrid education program comprising 2-h theoretical lectures and 2-h experiential learning. Post-intervention, semi-structured focus group interviews were conducted, transcribed, and analyzed using Colaizzi's seven-step framework in NVivo 11 to identify emergent themes.ResultsThree key themes emerged: (1) Motivation for participating in dementia education: Social and family responsibility-driven motivation; (2) Enhanced youths awareness of dementia: Converted stereotype of dementia and improved communication skills; (3) Suggestions for improving future education programs: Extending youth engagement with patients, increasing diversified practical activities, providing guidance for practical activities.ConclusionThe findings provide evidence to guide the design of tailored dementia awareness programs for youths, supporting the sustainable development of dementia-related interventions.

Background: Best healthcare practice for people with dementia encourages the inclusion of family members or carers, alongside enabling people with dementia to make their own decisions. Dementia care thus often includes the person with dementia, their carer, and their healthcare professional (HCP): a dementia care triad. Understanding how this triad is developed and navigated may improve future dementia care services. Methods: A longitudinal qualitative approach was used to interview 30 people with dementia, 31 family carers, and 7 healthcare professionals in England between May 2020 and March 2021. Data from three interview time points were transcribed and analysed using reflexive thematic analysis. Findings: The relationships within a dementia care triad were initially built on the dyadic relationship between the person with dementia and their family carer and any pre-existing relationships with their HCP. The nature and proximity of the carer to the person with dementia influenced how triadic relationships in dementia care formed and functioned, with spousal and co-resident carers more actively involved in healthcare interactions. Further positive development of a triad required confidence in the HCP, and shared perspectives on balancing the involvement of the carer and the independence of the person with dementia, with considerations of autonomy and risk, and which did not always follow a linear transition. While increased carer involvement often supported the person with dementia, it sometimes led to their exclusion. Engagement by healthcare professionals varied, reflecting inconsistencies in applying person-centred care. Conclusions: The findings of this study suggest a need for clearer, more consistent approaches that support dynamic carer roles while preserving the autonomy of the person with dementia. This study provides additional considerations in relationship dynamics that inform our understanding of the dementia care triad.

The positive physical, mental, and cognitive health effects of social participation in late life have been well established. However, the facilitators and barriers of social participation among older adults with dementia and the effects of social participation on their psychological well-being have been understudied. Using the cross-sectional 2023 National Health and Aging Trends Studies (N = 7,547; 13.2% of them classified as having possible or probable dementia), we examined the correlates of social participation among older adults with dementia, compared to those among their peers without dementia, the moderating effect of dementia on the associations between social participation and psychological well-being, and the mediation effects of SSNS and depressive/anxiety symptoms on the associations between social participation and psychological well-being among older adults with dementia. Results from linear regression models show negative associations between dementia and social participation (B [SE] = -0.36 [0.07], t = -5.38, p < .001 for possible dementia; B [SE] = -0.31 [0.09], t = -3.42, p = .001 for probable dementia). However, regardless of dementia status, higher education, larger social network, greater neighborhood social cohesion, and engagement in exercise were facilitators of social participation. Perceived health-related and transportation barriers and vision impairment among those with dementia were barriers to social participation. The positive association between social participation and psychological well-being (B [SE] = 0.18 [0.01], t = 13.01, p < .001) was not moderated by dementia status, although both possible and probable dementia were independently negatively associated with psychological well-being. Path model results show that among older adults with dementia, increased social network size (ratio of indirect to total effects = 0.13) and reduced depressive/anxiety symptoms (ratio of indirect to total effects = 0.17) mediated the association between social participation and psychological well-being. Implications of the findings for enhancing social participation among older adults with dementia are discussed.