Dementia (London, England)最新文献

Dementia is a growing public health concern in sub-Saharan Africa (SSA), driven mostly by an ageing population and increasing life expectancy. Evidence has shown that physical activity is an effective, non-pharmacological intervention to improve health outcomes for people living with dementia, but the extent to which it has been utilized among older adults with dementia in SSA remains unclear. This scoping review aimed to map and describe physical activity interventions targeting older adults with dementia or cognitive impairments in SSA using JBI guidelines. We systematically searched seven electronic databases (PubMed, Scopus, Embase, CINAHL, PsycINFO, SPORTDiscus and African Journal Online). We also searched Google Scholar, and other gray literature sources. A total of three studies were found, all three were interventional studies. Intervention characteristics were described using the FITT-VP framework (Frequency, Intensity, Time, Type, Volume, and Progression) and compared to international recommendations for physical activity. Outcomes and diagnostic tools were also described, alongside considerations of cultural tailoring. Findings indicate that despite a low volume of studies, interventions implemented largely aligned with international physical activity recommendations for older adults living with chronic health conditions. Improvements were reported in cognitive function, functional ability, and societal participation. However, there was limited use of culturally tailored diagnostic and outcome assessment tools, and interventions. The last eligible study was published in 2021, highlighting a stagnation in research despite the increasing prevalence of dementia in SSA. Potential reasons include underdevelopment of dementia research, diagnostic challenges, and poor indexing of African research in academic databases. Nevertheless, this review showed that physical activity is a promising strategy to address the growing gap in dementia care in SSA. Future research should focus on developing physical activity interventions co-designed with the local communities and adapted to the sociocultural contexts.

Young-onset dementia occurs during life stages when work and family responsibilities may still be present. These circumstances mean that persons with young-onset dementia often face support systems that are not fully adapted to their age, needs, or daily life. Although family-centred approaches are increasingly recognised in dementia care, limited knowledge exists about how couples living with young-onset dementia understand and make use of support in daily life. This study explores how support is experienced and integrated into the shared lifeworld of couples, focusing on practical, emotional, and existential aspects of daily living. Eleven couples participated in dyadic, semi-structured interviews. A meaning-oriented thematic analysis, guided by lifeworld research, was used to explore how support is understood and incorporated into daily life. Three themes emerged. Negotiating independence and support in daily life describes how couples balance emerging needs with daily routines and autonomy. Navigating complex systems in search of adequate support highlights the challenges of encountering fragmented structures and unclear responsibilities, often requiring persistence to identify relevant services. Experiencing a balance between expectations and daily support shows how support becomes meaningful when it aligns with the couple's daily life and current needs. Overall, the themes demonstrate how couples work together to maintain daily life while managing emerging needs and navigating fragmented systems, and how support is most helpful when it fits their life situation. The findings underscore the importance of support that matches the life circumstances of couples living with young-onset dementia and the ways they make sense of their daily lives.

Background: Diagnostic disclosure communication in dementia care proves challenging for clinicians and inadequately addresses patient and caregiver needs. We characterized clinician communication strategies and challenges for diagnostic disclosure conversations as an initial step in developing a structured communication intervention. Methods: Thematic analysis of semi-structured interviews with 23 clinicians across three academic medical centers in neurology, geriatrics, geriatric psychiatry, neuropsychology, and primary care. Findings: Communicating a dementia diagnosis, because of its gravity, requires incremental communication strategies organized in the following domains. First, building and maintaining strong relationships with patients and caregivers by establishing rapport and emotional connection builds trust and creates a sense of partnership. Second, assessing illness awareness and establishing readiness to discuss diagnosis occurs over multiple visits. This involves creating psychological safety to discuss cognitive concerns, especially for individuals from racial and ethnic marginalized communities in which there is enhanced stigma. Third, clinicians tailor word choice for disclosure based on patient and caregiver needs and their own comfort. Fourth, clinicians are attuned to patient and caregiver emotions but feel varying levels of comfort responding to emotions. Fifth, approaches to sharing prognostic information include emphasis on individual variability and discussions of longer-term anticipated changes to function, although clinicians identified challenges with discussing prognosis due to uncertainty about rates of progression. Sixth, supporting hope and preparation in care planning supports patients and caregivers to adapt to the diagnosis and plan for future changes. Building relationships with caregivers and adapting communication for patients of different cultural backgrounds occurs throughout the process. Common challenges include: harm to the therapeutic relationship from 'abrupt' disclosures; limitations in patient ability to retain or accept diagnostic information; clinicians' challenges with their own emotions that arise with disclosure. Conclusion: A customized, structured communication framework and training for clinicians may enhance the quality of diagnostic disclosure conversations in dementia care.

BackgroundAgitation is a common neuropsychiatric symptom of Alzheimer's disease; however, limited information exists on how measurable changes in agitated behaviors relate to overall caregiver experience. We sought to describe agitated behaviors measured by the Cohen-Mansfield Agitation Inventory (CMAI) score among individuals with Alzheimer's disease living in US community-based settings and experience of their caregivers.MethodsAn online survey was conducted (08/26/2021-09/24/2021) among adult caregivers who lived with and provided unpaid care for an individual with Alzheimer's disease. The 3-part survey involved (1) informed consent and screening; (2) CMAI assessment (total and sub-scores for four agitation factors); (3) characteristics and outcomes of caregivers and individuals with Alzheimer's disease. Descriptive statistics are reported. Association between the CMAI total score and caregiver burden (measured using the Zarit Burden Interview), mental health (measured using the Patient Health Questionnaire 4-item), and work/activity impairment (measured using the Work Productivity and Activity Impairment: Caregiver scale) was estimated using regression models.ResultsA total of 250 caregivers (mean age: 44.5 years; 55.2% male; 86.4% White) completed the survey. Based on the CMAI, 99.6% of individuals with Alzheimer's disease (mean age: 68.6 years; 55.2% male; 83.2% White) experienced ≥1 agitated behavior in the past 2 weeks. Caregivers reported providing an average of 39.1 hours of care per week for individuals with Alzheimer's disease (additional non-paid and paid care provided by other caregivers was 58.8% and 38.4%, respectively); 60.8% of caregivers had a high caregiving burden, 35.2% experienced moderate-to-severe distress, and 68.2/64.0% had impairment in work/daily activities. Agitation among individuals with Alzheimer's disease was associated with significantly poorer caregiver outcomes.ConclusionsIndividuals with Alzheimer's disease frequently experience several different agitated behaviors. Effective management of agitated behaviors is important and has the potential to improve the overall caregiver experience.

Introduction: Having a migration background might be associated with the care experiences of family caregivers of people with dementia. For example, caregivers with a migration background often face additional challenges in accessing professional care. The aim of this study was to provide insight into differences in care experiences between family caregivers with a native Dutch and a European or a non-European migration background. Methods: Data were used from a large-scale Dutch survey among family caregivers of relatives with dementia. The sample consisted of 170 caregivers with a European migration background, 199 caregivers with a non-European migration background and 4,158 caregivers with a native Dutch background. Linear and multinomial logistic regression analyses were used to analyse the survey data. The results were adjusted for background characteristics such as sex and age. Results: No differences were found between the two migrant groups and the native Dutch group in the perceived care burden and the caregiving intensity. Family caregivers with a European migration background were less likely to feel prepared for future changes in the dementia trajectory of their relative with dementia than caregivers with a native Dutch background. In addition, caregivers with a European migration background gave a lower score for their appreciation of the overall supply of care and support. Discussion: Caregivers with a European migration background, but not caregivers with a non-European migration background, were less likely to feel prepared for future changes than caregivers with a native Dutch background. In addition, they had lower appreciation for the overall supply of care and support. Offering a good supply of professional care and support, tailored to the individual situation and support needs, is important for caregivers in general, and those with a European migration background in particular.

Structural and social determinants of health are environmental conditions that affect individuals' health and functioning across the life course. These determinants are salient factors at the apex of individual psychology, community variables, and larger sociological factors, exerting prominent effects on individuals' wellbeing. The National Institute on Aging seeks to understand their influence on aging and Alzheimer's disease. We propose that the benefits of doing so may reach beyond knowledge of disease mechanisms - it may also improve clinical outcomes. We describe efforts introducing structural and social determinants of health data into the national network of Alzheimer's disease research centers. We report results of pilot testing 225 structural and social determinants of health items at the University of Pennsylvania's center among 135 cognitively unimpaired research participants. We summarize item and instrument completion rates, participant feedback, and survey adjustments. We describe the initiative, potential for its impact, pilot testing results, and future directions.

IntroductionCurrent support programs for individuals with dementia focus primarily on patients living with caregivers. Research on individuals with dementia living alone is sparse, with small sample sizes. This report describes data collected from the Supportive Care for Dementia program. The program's goals are to provide support services that allow the person to remain in their residence, increase involvement and decrease the stress experienced by family members, reduce neurobehavioral disturbances, reduce hospitalizations and emergency room visits and related costs, and facilitate placement or caregiving support when appropriate.MethodsThe data were collected from 300 patients enrolled in the Supportive Care for Dementia program. Measurements included patient behaviors, distant caregiver stress, hospitalizations and emergency room visits, and provided services.ResultsProgram participation was associated with positive outcomes, including decreased emergency room visits, decreased distant caregiver stress, and increased supportive services and familial engagement. Demographic data including racial and ethnic differences are discussed.DiscussionThe Supportive Care for Dementia program is a replicable program with demonstrated positive outcomes for individuals with dementia living alone.

The concept of personhood in dementia has maintained its status as the definitive approach to dementia care. Personhood works at both practical and philosophical levels to maintain the humanity of people with dementia. The project described in this article used the concept of personhood to design community-engaged research which harnessed the power of literary language to access the internal life of a person with dementia. Here we outline the design and methods in detail, homing in on our main conclusion that literary language is a powerful tool in helping diverse stakeholder groups access the person in dementia. The research comprised three inter-linked strands. In Strand One we built a corpus of dementia fiction from which we identified twelve extracts from contemporary novels offering the internal perspective of a person with dementia. Strand Two involved six weekly meetings of separate reading groups with four distinct stakeholder groups - student social workers, members of the public, family carers, and people with dementia. The four groups engaged in separate, facilitated discussions of the extracts. This aspect of the project is unique as to the best of our knowledge no previous research has analysed readers' responses to extracts of fictional characters' narration of living with dementia. Strand Three was led by a well-known writer and comprised a series of public events and outputs which engaged readers and authors of dementia fiction with the genre. A dementia fiction festival and writer workshops resulted in publication of an anthology of short stories which included stories addressing a deficiency of racial and ethnically diverse characters noted in our corpus. The article concludes by discussing how working across disciplines and sectors to engage with dementia as a cultural as well as a clinical challenge has the potential to facilitate the understanding and emphasis of personhood in dementia studies.

Dementia care provision is a global challenge. However, dynamics to provide care to a family member living with dementia in their home are far more complex. Evidence suggests that dementia care among culturally and linguistically diverse (CALD) communities is largely offered by family members within communities. But at a family level, care happens at the intersection of unequal gender relations, complex cultural constructions of dementia, and longstanding family values and traditions. While these dynamics show the intersection of power, class, and gender, these aspects have not gained widespread currency in dementia policy plans. Yet they shape the identities and social positioning of carers and consequently carer precariousness. This article reveals that the role of caring for family members living with dementia is embedded in complex power structures that stigmatise the identities of carers and those cared for, reproduces gendered social hierarchies, exacerbate economic uncertainties, and diminish the merits of filial piety - a valued cultural practice. By centering the voices of female carers from a CALD background, the authors highlight the need for policymakers to devote particular attention to how the intersection of the diverse cultural environments with dementia care at a family level induce carer insecurities and vulnerabilities - precariousness. This calls for an emancipatory dementia policy agenda that values the lived experiences of female carers' cumulative disadvantage over the course of providing care.

There are significant challenges in creating and maintaining positive care cultures for people with dementia. My Home Life is a UK initiative that provides staff with frameworks and tools to facilitate the development and implementation of strategies that support compassionate, relationship-centred care. Staff at a neurobehavioral unit used one of these tools, 'A Way with Words', and developed this into a language intervention, flipping language, which was grounded by the principles of My Home Life. This qualitative study explored how flipping language impacted on care provision and culture in a neurobehavioral unit. Five focus groups were held with staff (n = 23) and family members (n = 3) to understand their experiences of the flipping language intervention which involved staff and families exploring everyday clinical communication with individuals living with dementia. Using reflexive thematic analysis, seven themes were identified from the data. Flipping language resulted in staff having a better understanding of the person which facilitated tailored support. Conversely, families believed that knowing a person fosters language about them being flipped. The power of language was highlighted by all participants. Families spoke about the impact that clinical language had on their care journey. Staff spoke about their experiences of the playful and curious approach to flipping language fostered a culture of openness and connectedness. In summary, flipping language was perceived to promote a care environment that was enabling for staff to connect with residents, families and other staff, facilitating personalised and relational care. Flipping language has the potential to be implemented in any care setting seeking to challenge and improve care practices and culture. Unique components of this study include the intervention being led by a lived-experience staff member.