Dementia (London, England)最新文献

Background: The demand for long-term residential care for people with dementia is, especially for those in the moderate to severe stages, increasing. However, dementia care services within long-term care (LTC) settings remain underdeveloped in low- and middle-income countries (LMICs). Objectives: This qualitative evidence synthesis aimed to explore LTC staff's experiences of taking care of people with dementia in LTC facilities in LMICs. Methods: A comprehensive literature search was conducted of six databases in January 2023 and updated in August 2024 for qualitative studies of LTC staff's experience of caring for people with dementia. Thematic synthesis was utilised for data synthesis, and NVivo facilitated this process. Results: 8,565 studies were screened, and 11 articles were included in this review. The studies included were conducted in Brazil (n = 2), China (n = 5), India (n = 1), Iran (n = 1), Malaysia (n = 1) and South Africa (n = 1) between 2012 and 2024. An overarching theme was identified: We are an island: underdeveloped dementia care within the LTC settings in LMICs, and the following categories identified as (1) the development of care provided for people living with dementia within care home settings is in its infancy; (2) the positive and effective coping strategies that may help embrace a brighter future of dementia care; (3) the deficiencies in caregiving approaches that contributed to poor-quality care for people living with dementia. Conclusions: The development of dementia care services within LTC in LMICs is still in its early stages. The main concern is the lack of available support and training for care staff and their insufficient dementia knowledge and care competencies. We hope that this review will help to increase attention to this significant issue of long-term institutional care for people with dementia in LMICs and that further research could investigate and enhance potential improvements in the practical implementation of long-term residential dementia care.

Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. A tool for ACP that incorporates a range of outcomes that are most important to persons with cognitive impairment and their carers is needed. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. We conducted interviews with 17 persons with MCI or dementia and 15 caregivers of persons with MCI or dementia. Interviews explored participants' prior experiences with ACP and goals for care planning. Content analysis was used to generate a list of outcomes identified as most important to persons with MCI or dementia and their carers. The list of person-centered outcomes was refined/categorized by research team consensus. Most participants in the sample had not participated in a prior ACP conversation with a primary care provider. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific. The outcomes identified as most important to persons with MCI or dementia and their caregivers can be used as a foundation for future work focused on developing an ACP tool to guide shared decision-making about healthcare. This tool can facilitate prioritization of goals that are most meaningful to persons with cognitive impairment and their carers as opposed to focusing only on medical aspects of care.

Frontotemporal dementias (FTD) are a group of early-onset neurodegenerative disorders that primarily affect the frontal and temporal lobes, leading to changes in behavior, motor abilities, communication, and executive functions. Primary progressive aphasias (PPA), the language variant of FTD, specifically impair speech and language abilities. The heterogeneous presentation of FTD, particularly PPA, complicates differential diagnosis and treatment selection for healthcare professionals. These challenges are further exacerbated for patients in rural areas due to limited access to specialized healthcare services. This cross-sectional, descriptive case study examines a 76-year-old male patient diagnosed with agrammatic primary progressive aphasia (nfvPPA) living in a rural area in the U.S. We conducted a semi-structured interview with his caregiver to explore the lived experience of being diagnosed and treated for PPA in a rural setting and to identify challenges encountered during the diagnostic and therapeutic processes. Several critical barriers were identified, including poor interprofessional communication, inadequate practitioner-patient and caregiver communication, limited access to educational resources, inconsistent intervention and follow-ups, and restricted healthcare services. To improve the patient and caregiver experience, we propose a collaborative management model centered around speech-language pathologists with expertise in FTD/PPA. This model aims to facilitate smoother navigation of the healthcare system and improve patient outcomes. Effective care management requires clear and continuous communication among providers, patients, caregivers, and other professionals. Additionally, educating and supporting FTD/PPA patients and their families is essential. Research gaps in rural areas regarding diagnosis and treatment outcomes further hinder care, underscoring the need for targeted studies to enhance clinical practices and improve the quality of life for both patients and caregivers.

Objectives: Dementia care should meet the mental, physical, and daily care needs of people who are less able to take care of themselves. Research has been undertaken to understand the subjective perspectives of well-being and quality of life in people with mild-to-moderate dementia, but there is less clarity about the desires and influences on well-being of people with moderate-to -severe dementia. We aimed to understand what is important for well-being or quality of life from the perspective of people with moderate-to-severe dementia. Methods: We searched published literature and conducted a systematic review and qualitative thematic synthesis. We included qualitative studies that presented views on and experiences of well-being or quality of life from the perspectives of people with moderate-to-severe dementia. Findings: We included five studies. All were conducted in residential care homes, and data collection was carried out using face-to-face semi-structured conversational interviews with people with moderate-to-severe dementia. Three themes were identified: how people felt about their lives in the care home, how they felt about the care home itself, and how they felt about themselves. The overarching aspect of these three themes was the ability and opportunity to experience positive associations with past and present personal identity. Conclusions: People with moderate-to-severe dementia can communicate their preferences and wishes and need support to spend their time in ways that support their quality of life. Opportunities for positive reminiscence, daily activities that can enhance moments of pleasure, and positive reinforcement of identity can help maintain well-being and quality of life. Care home staff and family members may benefit from education and training in these aspects of care.

Dementia is the second leading cause of disease burden in Australia, with regional populations facing limited access to multidisciplinary assessment, leading to delays and poorer outcomes. A hybrid virtual memory clinic (hVMC) combining in-person and virtual assessments is a possible solution. This study aimed to co-design a hVMC model for trialling in regional areas. This cross-sectional qualitative study included four co-design workshops (n = 56) and four interviews with people living with dementia, care partners, clinicians, and administrators. A hVMC model was iteratively developed and refined. Thematic analysis was conducted. The first theme, "we need the right service, right time," describes regional challenges such as delays in assessment, limited specialist availability, and gaps in post-diagnostic support. The second theme, "the virtual memory clinic must be integrated with existing services," highlights the need for a person-centred hybrid model involving in-person visits and collaboration with local providers, fostering relationships and reciprocal capacity building. The third theme, "clarity needed on who virtual assessment would suit," reflects mixed views on eligibility, with general agreement on a cognitive threshold (e.g., Mini-Mental State Examination >20) but uncertainty around its application, suggesting a need for flexibility. Co-design participants also proposed practical features - shared intake, regular in-person assessments, post-diagnostic interventions (e.g., occupational therapy, cognitive programs), and local capacity building - which were iteratively integrated into the model. We present a co-designed hVMC model incorporating key features to support feasibility, access, and continuity of care. The model includes shared intake, quarterly in-person face-to-face assessments, structured post-diagnostic support, and collaboration with local services to build capacity. This model will be tailored to each region and is currently being piloted. Co-designed models must balance stakeholder priorities with implementation feasibility.

Care partners who have a loved one living with dementia are at risk for psychological distress and burden. As a result, a variety of programs to support dementia care partners have been designed, but dance/movement therapy (DMT) remains underexplored for care partner well-being. As such, the purpose of this study was to understand the experience of a novel DMT intervention designed to promote resilience among carers. Semi-structured interviews were conducted with 9 female care partners who took part in a pilot study. Reflective journals and interviews were transcribed and then thematically analyzed with an inductive approach. Three themes emerged pertaining to participants' experiences of the DMT program. Holistic engagement theme emphasized the powerful impact which the body-mind approach of had for carers, above and beyond verbal therapy. Liberation theme highlighted how beneficial movement was to enable carers to feel "free" to express themselves. Connection to others theme demonstrated the impact of movement to foster supportive relationships between carers. Participants suggested that future iterations of this program should have more sessions with time to process DMT activities in-depth. Overall, results suggest that DMT is a promising approach to support care partner well-being holistically, by providing creative opportunities for them to move, process, and connect. These findings can be built upon in future creative-arts therapy interventions for care partners.

People with dementia often experience psychological distress, and may experience difficulty in navigating changes to their cognition, identity and quality of life, yet experience challenges in accessing and engaging in talking therapies. This study aims to conduct a systematic review and thematic meta-synthesis to explore the experiences of people with dementia in accessing talking therapies by incorporating the perspectives of people with dementia, caregivers and dementia care professionals. We searched PsychINFO, CINAHL and Web of Science in March 2024 and included empirical peer reviewed studies that had qualitative data focussing on accessing, delivering or participating in talking therapies, from the perspective or people with dementia, their caregivers, or professionals. Only English language studies were included. 15 studies were included. Across the studies, qualitative data was collected from 88 people with dementia, 96 caregivers/family members/supportive others, 38 professionals and seven community stakeholders. Quality assessment was conducted using a revised version of the Critical Appraisal Skills Programme checklist for qualitative research. Talking therapies can help people with dementia to address, process, and accept difficult life situations, whilst also improving their knowledge on dementia and positively impacting their relationships with significant others. However, to maximise benefits, several adjustments are necessary, including, adjusting the length of therapy sessions, increased therapy reminders and follow-up, tailored communication, use of group sessions and improving staff's dementia knowledge. Additionally, the use of dementia-specific tools, alongside outcome measures that measure broader wellbeing constructs are recommended. Involving people with dementia, caregivers and dementia professionals in therapy planning and delivery can also improve outcomes. Talking therapies for people with dementia are effective, though adaptations to address their unique support needs are essential. Several studies explored multicomponent interventions, making it difficult to ascertain which specific elements of psychological intervention were most effective. Additionally, individuals from ethnically diverse backgrounds were consistently underrepresented across the studies.

Non-pharmacological therapies have demonstrated efficacy in alleviating dementia-related symptoms in residential aged care settings; however, their uptake remains limited. This systematic review aimed to identify the barriers and facilitators influencing the implementation of non-pharmacological therapies for people with dementia in residential aged care, with the goal of informing future research, practice and policy development. A systematic search was conducted across seven databases (PubMed, MEDLINE, PsycINFO, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, ProQuest) from January 2000 to March 2025. Studies were eligible for inclusion if they were published in English, involved participants aged 65 years and older with dementia residing in aged care facilities, and reported on implementation challenges or enablers related to non-pharmacological interventions. Three independent reviewers conducted screening, data extraction, and quality appraisal, with discrepancies resolved through consensus. The Mixed Methods Appraisal Tool was used to assess study quality. Data were synthesised using the Theoretical Domains Framework. Fifty-eight studies met inclusion criteria, representing 11 types of non-pharmacological therapies. The majority were qualitative in design (36/58; 62.1%). Music therapy (20/58; 34.5%) and recreation therapy (16/58; 27.6%) were the most studied. Key barriers and facilitators included staff availability (48/58; 82.8%), education and training (49/58; 84.5%), resource availability and cost (34/58; 58.6%), program usability (38/58; 65.5%), and organisational policy structures (34/58; 58.6%). There was no clear pattern in the type of barriers or facilitators reported by therapy type. Improving staff capacity, increasing access to training, ensuring resource availability, and designing flexible and user-friendly programs are critical to enhancing the successful adoption of non-pharmacological therapies in aged care. Addressing these factors may contribute to more sustainable and effective dementia care practices.

Exclusion, marginalization and stigma remain common experiences for people living with dementia. Dementia capable communities offer a pathway to support the wellbeing of people living with dementia by creating spaces where people living with dementia and their care partners are supported and empowered. This review of reviews examines the ideas and approaches for dementia-capable communities across disciplines and at multiple levels of action. Review articles focusing broadly on the development and implementation of dementia capable communities were analyzed for their methods, evidence base, approaches, and recommendations. The results highlighted the importance of engaging and collaborating across different parties, the need to support dementia awareness and address stigma and the key role of policy regulations and planning guidelines in facilitating dementia capable communities. They also noted the need to have a focus on the built environment and making it easier for people living with dementia to navigate the community. The importance of social and community based supports in promoting connection and wellbeing was also brought forward. Systemic critical analysis of the public policy and political conditions that would be needed for the development and maintenance of dementia capable communities was missing. Development of thriving communities where people living with dementia are supported and included will require contending with these challenges.

Objectives: Young-onset dementia often impairs work performance and increases the risk of job loss, necessitating support from employers, occupational physicians, and healthcare professionals to facilitate continued employment. This study explores the perspectives and roles of these stakeholders in supporting continued employment regarding young-onset dementia. Methods: 18 semi-structured interviews were organized to explore the different perspectives. Two focus group discussions were held to complement and rank the insights gathered from the individual interviews. Inductive thematic content analysis was applied to both sets of data. Results: Key stakeholders play a vital role in shaping support for continued employment of individuals with young-onset dementia. Findings emphasize the importance of knowledge, communication, and collaboration. Facilitators include young-onset dementia awareness, proactive organizational support, and timely professional involvement, while barriers stem from stigma, knowledge gaps, and legal constraints. Enhancing collaboration, workplace guidelines, and awareness can improve support for employees. Conclusion: Continued employment for individuals with young-onset dementia is achievable, if desired, through early recognition, workplace adjustments, and collaboration with key stakeholders. Success depends on raising awareness, fostering proactive organizational attitudes, and promoting open communication. Further research and the development of support tools are essential to support continued employment and improve the social health of individuals with young-onset dementia.