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1.
J Aging Stud ; 69: 101224, 2024 Jun.
Article En | MEDLINE | ID: mdl-38834244

Discussions regarding personhood and dementia care are often based on practices of recognition; on notions of being-or not being- 'one of us'. This article provides a short overview of personhood as articulated in dementia care, especially in the assemblage of practices known as 'person-centred care' (PCC), and in post-human approaches that developed following the critique of PCC. This article posits an alternative framework, based on a rereading of the concept of alienation, that we want to call 'alienation-centred care'. It considers the extent to which dynamic prosthetic networks can be adapted to the lives of people with dementia, rather than only examining the individual's reactivity to dementia interventions that define traditional approaches. It further urges us to understand the multiple origins of alienating states. Conclusions explore how this framework might address some of the limitations identified in both humanist and post-human approaches to personhood and dementia.


Dementia , Patient-Centered Care , Personhood , Humans , Dementia/psychology , Dementia/therapy
2.
BMC Geriatr ; 24(1): 480, 2024 Jun 01.
Article En | MEDLINE | ID: mdl-38824515

OBJECTIVE: Research the dose-response relationship between overall and certain types of exercise and cognitive function in older adults with Alzheimer's disease and dementia. DESIGN: Systemic and Bayesian Model-Based Network Meta-Analysis. METHODS: In our study, we analyzed data from randomized controlled trials investigating the effects of different exercises on cognitive outcomes in older adults with AD. We searched the Web of Science, PubMed, Cochrane Central Register of Controlled Trials, and Embase up to November 2023. Using the Cochrane Risk of Bias tool (Rob2) for quality assessment and R software with the MBNMA package for data analysis, we determined standard mean differences (SMDs) and 95% confidence intervals (95%CrI) to evaluate exercise's impact on cognitive function in AD. RESULTS: Twenty-seven studies with 2,242 AD patients revealed a nonlinear relationship between exercise and cognitive improvement in AD patients. We observed significant cognitive enhancements at an effective exercise dose of up to 1000 METs-min/week (SMDs: 0.535, SD: 0.269, 95% CrI: 0.023 to 1.092). The optimal dose was found to be 650 METs-min/week (SMDs: 0.691, SD: 0.169, 95% CrI: 0.373 to 1.039), with AE (Aerobic exercise) being particularly effective. For AE, the optimal cognitive enhancement dose was determined to be 660 METs-min/week (SMDs: 0.909, SD: 0.219, 95% CrI: 0.495 to 1.362). CONCLUSION: Nonlinear dose-response relationship between exercise and cognitive improvement in Alzheimer's disease, with the optimal AE dose identified at 660 METs-min/week for enhancing cognitive function in AD.


Alzheimer Disease , Bayes Theorem , Cognition , Network Meta-Analysis , Randomized Controlled Trials as Topic , Humans , Alzheimer Disease/psychology , Alzheimer Disease/therapy , Randomized Controlled Trials as Topic/methods , Cognition/physiology , Exercise Therapy/methods , Dementia/psychology , Dementia/therapy , Aged
3.
JMIR Aging ; 7: e50107, 2024 Jun 07.
Article En | MEDLINE | ID: mdl-38848116

BACKGROUND: Assistive technologies can help people living with dementia maintain their everyday activities. Nevertheless, there is a gap between the potential and use of these materials. Involving future users may help close this gap, but the impact on people with dementia is unclear. OBJECTIVE: We aimed to determine if user-centered development of smartwatch-based interventions together with people with dementia is feasible. In addition, we evaluated the extent to which user feedback is plausible and therefore helpful for technological improvements. METHODS: We examined the interactions between smartwatches and people with dementia or people with mild cognitive impairment. All participants were prompted to complete 2 tasks (drinking water and a specific cognitive task). Prompts were triggered using a smartphone as a remote control and were repeated up to 3 times if participants failed to complete a task. Overall, 50% (20/40) of the participants received regular prompts, and 50% (20/40) received intensive audiovisual prompts to perform everyday tasks. Participants' reactions were observed remotely via cameras. User feedback was captured via questionnaires, which included topics like usability, design, usefulness, and concerns. The internal consistency of the subscales was calculated. Plausibility was also checked using qualitative approaches. RESULTS: Participants noted their preferences for particular functions and improvements. Patients struggled with rating using the Likert scale; therefore, we assisted them with completing the questionnaire. Usability (mean 78 out of 100, SD 15.22) and usefulness (mean 9 out of 12) were rated high. The smartwatch design was appealing to most participants (31/40, 76%). Only a few participants (6/40, 15%) were concerned about using the watch. Better usability was associated with better cognition. The observed success and self-rated task comprehension were in agreement for most participants (32/40, 80%). In different qualitative analyses, participants' responses were, in most cases, plausible. Only 8% (3/40) of the participants were completely unaware of their irregular task performance. CONCLUSIONS: People with dementia can have positive experiences with smartwatches. Most people with dementia provided valuable information. Developing assistive technologies together with people with dementia can help to prioritize the future development of functional and nonfunctional features.


Dementia , Self-Help Devices , Smartphone , User-Centered Design , Humans , Dementia/psychology , Dementia/therapy , Dementia/rehabilitation , Male , Female , Aged , Aged, 80 and over , Surveys and Questionnaires , Activities of Daily Living/psychology , Cognitive Dysfunction/psychology , Cognitive Dysfunction/rehabilitation , Cognitive Dysfunction/therapy , Middle Aged , Mobile Applications
4.
Sci Eng Ethics ; 30(3): 17, 2024 May 08.
Article En | MEDLINE | ID: mdl-38720094

Wandering is a symptom of dementia that can have devastating consequences on the lives of persons living with dementia and their families and caregivers. Increasingly, caregivers are turning towards electronic tracking devices to help manage wandering. Ethical questions have been raised regarding these location-based technologies and although qualitative research has been conducted to gain better insight into various stakeholders' views on the topic, developers of these technologies have been largely excluded. No qualitative research has focused on developers' perceptions of ethics related to electronic tracking devices. To address this, we performed a qualitative semi-structured interview study based on grounded theory. We interviewed 15 developers of electronic tracking devices to better understand how they perceive ethical issues surrounding the design, development, and use of these devices within dementia care. Our results reveal that developers are strongly motivated by moral considerations and believe that including stakeholders throughout the development process is critical for success. Developers felt a strong sense of moral obligation towards topics within their control and a weaker sense of moral obligation towards topics outside their control. This leads to a perceived moral boundary between development and use, where some moral responsibility is shifted to end-users.


Caregivers , Dementia , Interviews as Topic , Moral Obligations , Qualitative Research , Humans , Dementia/therapy , Caregivers/ethics , Wandering Behavior/ethics , Grounded Theory , Stakeholder Participation , Electronics/ethics , Female , Motivation/ethics
5.
BMJ Open ; 14(5): e083724, 2024 May 08.
Article En | MEDLINE | ID: mdl-38719284

INTRODUCTION: The rapid growth of the ageing population underscores the critical need for dementia care training among care providers. Innovative virtual reality (VR) technology has created opportunities to improve dementia care training. This scoping review will specifically focus on the barriers, facilitators and impacts of implementing fully immersive VR training for dementia care among staff in long-term care (LTC) settings. METHODS AND ANALYSIS: We will follow the Joanna Briggs Institute's scoping review methodology to ensure scientific rigour. We will collect literature of all languages with abstracts in English from CINAHL, Medline, Scopus, Embase, Web of Science and ProQuest database until 31 December 2023. Grey literature from Google Scholar and AgeWell websites will be included. Inclusion criteria encompass papers involving paid staff (Population), fully immersive VR training on dementia care (Concept) and LTC settings (Context). Literature referring only to non-paid caregivers, non-fully immersive VR or other chronic diseases will be excluded. Literature screening, data extraction and analysis will be conducted by two reviewers separately. We will present a narrative summary with a charting table on the main findings. ETHICS AND DISSEMINATION: This work does not require ethics approval, given the public data availability for this scoping review. Through a comprehensive overview of the current evidence regarding impacts, barriers and facilitators on this topic, potential insights and practical recommendations will be generated to support the implementation of VR training to enhance staff competence in LTC settings. The findings will be presented in a journal article and shared with practitioners on the frontline.


Dementia , Long-Term Care , Virtual Reality , Humans , Dementia/therapy , Health Personnel/education
6.
BMC Prim Care ; 25(1): 147, 2024 May 02.
Article En | MEDLINE | ID: mdl-38698316

INTRODUCTION: With an aging population and a growing prevalence of people living with dementia, the demand for best-practice dementia care in general practice increases. There is an opportunity to better utilise the nurse role within the primary care team to meet this increasing demand in the provision of care for people living with dementia. However, general practice nurses have limited knowledge in the provision of best-practice care for people living with dementia and their carer(s). A number of best-practice dementia care recommendations contained in the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia have been identified as highly relevant to the role of the general practice nurse. AIMS: To explore general practice nurses' perspectives on published best-practice dementia care recommendations relevant to their role and identify barriers and facilitators to their implementation into clinical practice. METHODS: Thirteen Australian general practice nurses took part in this qualitative interview study. The research questions for this study were addressed within a paradigmatic framework of social constructionism. Data were transcribed verbatim and thematically analysed. RESULTS: There was a high level of agreement between general practice nurses that the recommendations were important, reflected best-practice dementia care and were relevant to their role. However the recommendations were perceived as limited in their usefulness to nurses' clinical practice due to being too vague and lacking direction. Four main themes were identified describing barriers and facilitators to operationalising best-practice dementia care.: creating a comfortable environment; changing approach to care; optimising the general practice nurse role and working collaboratively. Nine sub-themes were described: physical environment; social environment; complexity of care; care planning for the family; professional role and identity, funding better dementia care, education, networking and resources; different roles, one team; and interagency communication. CONCLUSION: This study identified several factors that need addressing to support general practice nurses to integrate best-practice dementia care recommendations into daily clinical practice. The development of interventions needs to include strategies to mitigate potential barriers and enhance facilitators that they perceive impact on their delivery of best-practice care for people living with dementia and their carer(s). The knowledge gained in this study could be used to develop multi-faceted interventions informed by theoretical implementation change models to enable the general practice nurse to operationalise best-practice dementia care recommendations.


Attitude of Health Personnel , Dementia , Qualitative Research , Humans , Dementia/nursing , Dementia/therapy , Australia , Female , Practice Guidelines as Topic , Male , Nurse's Role , General Practice , Adult , Middle Aged , Interviews as Topic
7.
Sci Rep ; 14(1): 10273, 2024 05 04.
Article En | MEDLINE | ID: mdl-38704403

Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT's responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.


Caregivers , Dementia , Information Seeking Behavior , Humans , Dementia/therapy , Dementia/psychology , Caregivers/psychology , Female , Male , Surveys and Questionnaires , Aged , Middle Aged , Needs Assessment
8.
Int J Geriatr Psychiatry ; 39(5): e6096, 2024 May.
Article En | MEDLINE | ID: mdl-38719786

BACKGROUND: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. METHODS: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. RESULTS: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. CONCLUSIONS: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.


Caregivers , Dementia , Healthcare Disparities , Humans , Dementia/therapy , Europe , Healthcare Disparities/statistics & numerical data , Female , Male , Surveys and Questionnaires , Health Services Accessibility/statistics & numerical data , Aged , Middle Aged , Adult
9.
BMC Med Ethics ; 25(1): 65, 2024 May 28.
Article En | MEDLINE | ID: mdl-38802779

BACKGROUND: Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources. METHODS: A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. RESULTS: 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. CONCLUSIONS: Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.


Dementia , Informed Consent , Mental Competency , Research Personnel , Humans , Dementia/therapy , Cross-Sectional Studies , Wales , Surveys and Questionnaires , England , Male , Female , Patient Selection/ethics , Middle Aged , Adult , Research Subjects/psychology
10.
BMJ Open ; 14(5): e076727, 2024 May 15.
Article En | MEDLINE | ID: mdl-38754883

INTRODUCTION: Dementia is a growing public health concern, and providing long-term care for individuals affected by this condition is challenging for their family caregivers. While researchers have explored various intervention options to provide psychological support for dementia caregivers, mentalising imagery therapy (MIT) has gained significant recognition as an effective programme. Despite its significance and effectiveness, there is a lack of comprehensive scoping reviews of MIT in dementia caregiving. Thus, conducting such a review can provide valuable insights into the status and outcomes of MIT, identify gaps in existing research and provide recommendations for a more effective clinical practice. METHODS AND ANALYSIS: This study proposes a scoping review conducted according to the Joanna Briggs Institute, Arksey and O'Malley's methodological framework, as well as the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review Extension. PubMed, Web of Science, Embase, Scopus, CINAHL and PsycINFO databases will be searched while grey literature will be retrieved via Google Scholar. Covidence will be used to manage the literature selection process and remove duplicate publications. Two researchers will independently screen the literature according to the inclusion criteria, with any discrepancies resolved through discussions with a third researcher. Data will be presented in a structured tabular format, with a narrative synthesis providing an overview of the findings on the identified research gaps and the effectiveness of MIT in the field of dementia caregiving. ETHICS AND DISSEMINATION: In a scoping review, no ethical approval is necessary. The results will be published in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: The scoping review protocol has been registered with Open Science Framework (https://doi.org/10.17605/OSF.IO/FHRG8).


Caregivers , Dementia , Imagery, Psychotherapy , Research Design , Humans , Caregivers/psychology , Dementia/therapy , Imagery, Psychotherapy/methods , Review Literature as Topic , Systematic Reviews as Topic
11.
BMJ Open ; 14(5): e078369, 2024 05 09.
Article En | MEDLINE | ID: mdl-38724048

INTRODUCTION: Based on the available evidence, cognitive stimulation is recommended as an intervention for people with dementia (PwD). Currently, cognitive stimulation is regularly offered as a group programme in care facilities. However, some residents, such as those who are bedridden, cannot participate. Furthermore, group programmes were not feasible during the pandemic. A concept that accompanies everyday life and enables cognitive stimulation in everyday communication (ie, '24/7') has been missing. Therefore, this feasibility study aims to (1) assess the feasibility of a new continuous 24/7 cognitive stimulation programme (CogStim24) based on a process evaluation and (2) examine the possible effects of CogStim24 on the primary outcome of global cognition in PwD and further PwD-related and staff-related outcomes. METHODS AND ANALYSIS: The complex CogStim24 programme is developed to be conducted as an everyday intervention during routine care including cognitively stimulating techniques, such as reminiscence therapy, multisensory stimulation and physical activity. In this unblinded single-arm study with pre-assessments and post-assessments, four nursing homes with a total of N=20 nursing and care staff will participate in an 11-week CogStim24 training programme. The intervention will be conducted to N=60 PwD. Neuropsychological assessments will be conducted pre-staff and post-staff training, as well as after a 6-week implementation phase. A process evaluation will be performed. ETHICS AND DISSEMINATION: Ethics approval was obtained from the ethics committee of the Faculty of Medicine of the University of Cologne, Cologne, Germany. Although cognitive stimulation is known to be effective for enhancing global cognition and quality of life in PwD, it is currently undersupplied to PwD. Therefore, CogStim24 has the potential to reach many more PwD. This study has the potential to serve as a basis for a large multicentre cluster randomised controlled trial. An interdisciplinarity team and mixed-methods approach will help generate information on the practicality and mechanisms of impact of CogStim24. This is important for the further development of the intervention and for facilitating its implementation. The study results will be disseminated via presentations at scientific conferences and meetings for healthcare professionals and PwD and their relatives. Several manuscripts presenting results of the different study parts will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: DRKS00024381.


Dementia , Feasibility Studies , Nursing Homes , Humans , Dementia/therapy , Cognition , Quality of Life , Cognitive Behavioral Therapy/methods , COVID-19 , Aged , Homes for the Aged
12.
PLoS One ; 19(5): e0301715, 2024.
Article En | MEDLINE | ID: mdl-38781188

INTRODUCTION: We examined whether the Clinical Frailty Scale (CFS), a widely adopted tool for stratifying the degree of frailty, and the Dementia Assessment Sheet for Community-based Integrated Care System 21-items (DASC-21), a simple tool for simultaneous assessment of impaired cognition and impaired ADL, at the time of initiation of hemodialysis is useful tool of older patients for the outcome and prognosis. METHODS: Data for 101 patients aged 75 years or older (mean age, 84.3 years) with ESRD who were initiated on hemodialysis and could be followed up for a period of 6 months were reviewed. RESULTS: The 6-month survival curves showed a significantly higher number of deaths in the frailty (CFS≥5) group than in the normal to vulnerable (CFS<5) group (p<0.01). The CFS level was also significantly higher (6.5±1.5) in patients who died within 6 months of dialysis initiation as compared with that (4.6±1.7) in patients who survived (p<0.01). On the other hand, the total score of DASC-21 was related to need for inpatient maintenance dialysis (p<0.01). The total score on the DASC-21 were found as showing significant correlations with the CFS level. The IADL outside the home was identified in the DASC-21 sub-analyses as being correlated with CFS. CONCLUSIONS: The CFS and the DASC-21 appeared to be a useful predictive tool of outcome and prognosis for older patients being initiated on hemodialysis. Assessment by the CFS or the DASC-21 might be useful for selecting the renal replacement therapy by shared decision-making and for advance care planning.


Dementia , Frailty , Renal Dialysis , Renal Insufficiency, Chronic , Humans , Male , Female , Aged , Aged, 80 and over , Dementia/therapy , Dementia/mortality , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/mortality , Geriatric Assessment/methods , Prognosis , Kidney Failure, Chronic/therapy , Kidney Failure, Chronic/mortality , Delivery of Health Care, Integrated
13.
Age Ageing ; 53(5)2024 May 01.
Article En | MEDLINE | ID: mdl-38783755

BACKGROUND: Patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia are underrepresented in specialist palliative home care (SPHC). However, the complexity of their conditions requires collaboration between general practitioners (GPs) and SPHC teams and timely integration into SPHC to effectively meet their needs. OBJECTIVE: To facilitate joint palliative care planning and the timely transfer of patients with advanced chronic non-malignant conditions to SPHC. METHODS: A two-arm, unblinded, cluster-randomised controlled trial. 49 GP practices in northern Germany were randomised using web-based block randomisation. We included patients with advanced CHF, COPD and/or dementia. The KOPAL intervention consisted of a SPHC nurse-patient consultation followed by an interprofessional telephone case conference between SPHC team and GP. The primary outcome was the number of hospital admissions 48 weeks after baseline. Secondary analyses examined the effects on health-related quality of life and self-rated health status, as measured by the EuroQol 5D scale. RESULTS: A total of 172 patients were included in the analyses. 80.4% of GP practices had worked with SHPC before, most of them exclusively for cancer patients. At baseline, patients reported a mean EQ-VAS of 48.4, a mean quality of life index (EQ-5D-5L) of 0.63 and an average of 0.80 hospital admissions in the previous year. The intervention did not significantly reduce hospital admissions (incidence rate ratio = 0.79, 95%CI: [0.49, 1.26], P = 0.31) or the number of days spent in hospital (incidence rate ratio = 0.65, 95%CI: [0.28, 1.49], P = 0.29). There was also no significant effect on quality of life (∆ = -0.02, 95%CI: [-0.09, 0.05], P = 0.53) or self-rated health (∆ = -2.48, 95%CI: [-9.95, 4.99], P = 0.51). CONCLUSIONS: The study did not show the hypothesised effect on hospitalisations and health-related quality of life. Future research should focus on refining this approach, with particular emphasis on optimising the timing of case conferences and implementing discussed changes to treatment plans, to improve collaboration between GPs and SPHC teams.


Heart Failure , Palliative Care , Primary Health Care , Pulmonary Disease, Chronic Obstructive , Quality of Life , Humans , Palliative Care/methods , Male , Female , Aged , Germany , Pulmonary Disease, Chronic Obstructive/therapy , Pulmonary Disease, Chronic Obstructive/diagnosis , Aged, 80 and over , Heart Failure/therapy , Heart Failure/diagnosis , Dementia/therapy , Chronic Disease , Home Care Services , Patient Care Team , Time Factors , Interdisciplinary Communication , Delivery of Health Care, Integrated/organization & administration
14.
J Interprof Care ; 38(4): 675-694, 2024.
Article En | MEDLINE | ID: mdl-38757957

Interprofessional collaboration (IPC) is essential for high-quality palliative care (PC) for persons with dementia. The aim of this scoping review was to identify IPC approaches in palliative dementia care and explore the elements constituting these approaches. We performed a search in PubMed, CINAHL, and PsychINFO using the Joanna Briggs Institute Reviewers' manual and PRISMA guidelines, and conducted content analysis of the included articles. In total, 28 articles were included, which described 16 IPC approaches in palliative dementia care. The content analysis revealed three overall elements of these approaches: 1) collaborative themes, 2) collaborative processes, and 3) resources facilitating collaboration. Frequently reported collaborative themes embraced pain management and providing care in the dying phase. These themes were addressed through intertwined collaborative processes including communication, coordination, assessing and monitoring, and reflecting and evaluating. To ensure optimal IPC in palliative dementia care, various resources were required, such as PC knowledge, skills to manage symptoms, skills to communicate with collaborators, and a facilitating environment. In conclusion, the identified IPC approaches in palliative dementia care involve diverse collaborating professionals who mainly manage symptoms, prepare for the dying phase and require material and immaterial resources to enable optimal IPC in palliative dementia care.


Cooperative Behavior , Dementia , Interprofessional Relations , Palliative Care , Humans , Dementia/therapy , Palliative Care/organization & administration , Communication , Patient Care Team/organization & administration , Pain Management
15.
JAMA Health Forum ; 5(5): e240825, 2024 May 03.
Article En | MEDLINE | ID: mdl-38728021

Importance: Nursing home residents with Alzheimer disease and related dementias (ADRD) often receive burdensome care at the end of life. Nurse practitioners (NPs) provide an increasing share of primary care in nursing homes, but how NP care is associated with end-of-life outcomes for this population is unknown. Objectives: To examine the association of NP care with end-of-life outcomes for nursing home residents with ADRD and assess whether these associations differ according to state-level NP scope of practice regulations. Design, Setting, and Participants: This cohort study using fee-for-service Medicare claims included 334 618 US nursing home residents with ADRD who died between January 1, 2016, and December 31, 2018. Data were analyzed from April 6, 2015, to December 31, 2018. Exposures: Share of nursing home primary care visits by NPs, classified as minimal (<10% of visits), moderate (10%-50% of visits), and extensive (>50% of visits). State NP scope of practice regulations were classified as full vs restrictive in 2 domains: practice authority (authorization to practice and prescribe independently) and do-not-resuscitate (DNR) authority (authorization to sign DNR orders). Main Outcomes and Measures: Hospitalization within the last 30 days of life and death with hospice. Linear probability models with hospital referral region fixed effects controlling for resident characteristics, visit volume, and geographic factors were used to estimate whether the associations between NP care and outcomes varied across states with different scope of practice regulations. Results: Among 334 618 nursing home decedents (mean [SD] age at death, 86.6 [8.2] years; 69.3% female), 40.5% received minimal NP care, 21.4% received moderate NP care, and 38.0% received extensive NP care. Adjusted hospitalization rates were lower for residents with extensive NP care (31.6% [95% CI, 31.4%-31.9%]) vs minimal NP care (32.3% [95% CI, 32.1%-32.6%]), whereas adjusted hospice rates were higher for residents with extensive (55.6% [95% CI, 55.3%-55.9%]) vs minimal (53.6% [95% CI, 53.3%-53.8%]) NP care. However, there was significant variation by state scope of practice. For example, in full practice authority states, adjusted hospice rates were 2.88 percentage points higher (95% CI, 1.99-3.77; P < .001) for residents with extensive vs minimal NP care, but the difference between these same groups was 1.77 percentage points (95% CI, 1.32-2.23; P < .001) in restricted practice states. Hospitalization rates were 1.76 percentage points lower (95% CI, -2.52 to -1.00; P < .001) for decedents with extensive vs minimal NP care in full practice authority states, but the difference between these same groups in restricted practice states was only 0.43 percentage points (95% CI, -0.84 to -0.01; P < .04). Similar patterns were observed in analyses focused on DNR authority. Conclusions and Relevance: The findings of this cohort study suggest that NPs appear to be important care providers during the end-of-life period for many nursing home residents with ADRD and that regulations governing NP scope of practice may have implications for end-of-life hospitalizations and hospice use in this population.


Dementia , Medicare , Nurse Practitioners , Nursing Homes , Terminal Care , Humans , Nursing Homes/statistics & numerical data , Female , United States , Male , Nurse Practitioners/statistics & numerical data , Terminal Care/statistics & numerical data , Dementia/nursing , Dementia/therapy , Aged, 80 and over , Aged , Cohort Studies
16.
PLoS One ; 19(5): e0302929, 2024.
Article En | MEDLINE | ID: mdl-38713699

BACKGROUND: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed. METHODS: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model. RESULTS: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings. CONCLUSIONS: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects. TRIAL REGISTRATION: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/).


Caregivers , Dementia , Humans , Dementia/therapy , Caregivers/psychology , Patient-Centered Care
17.
Br J Psychiatry ; 224(6): 221-229, 2024 Jun.
Article En | MEDLINE | ID: mdl-38738348

BACKGROUND: Dementia is a common and progressive condition whose prevalence is growing worldwide. It is challenging for healthcare systems to provide continuity in clinical services for all patients from diagnosis to death. AIMS: To test whether individuals who are most likely to need enhanced care later in the disease course can be identified at the point of diagnosis, thus allowing the targeted intervention. METHOD: We used clinical information collected routinely in de-identified electronic patient records from two UK National Health Service (NHS) trusts to identify at diagnosis which individuals were at increased risk of needing enhanced care (psychiatric in-patient or intensive (crisis) community care). RESULTS: We examined the records of a total of 25 326 patients with dementia. A minority (16% in the Cambridgeshire trust and 2.4% in the London trust) needed enhanced care. Patients who needed enhanced care differed from those who did not in age, cognitive test scores and Health of the Nation Outcome Scale scores. Logistic regression discriminated risk, with an area under the receiver operating characteristic curve (AUROC) of up to 0.78 after 1 year and 0.74 after 4 years. We were able to confirm the validity of the approach in two trusts that differed widely in the populations they serve. CONCLUSIONS: It is possible to identify, at the time of diagnosis of dementia, individuals most likely to need enhanced care later in the disease course. This permits the development of targeted clinical interventions for this high-risk group.


Dementia , Humans , Dementia/therapy , Dementia/diagnosis , Male , Female , Aged , Retrospective Studies , Aged, 80 and over , United Kingdom , Routinely Collected Health Data , Community Mental Health Services , Middle Aged , Electronic Health Records/statistics & numerical data , Risk Assessment
18.
Br J Psychiatry ; 224(6): 252-257, 2024 Jun.
Article En | MEDLINE | ID: mdl-38699852

Leucine-rich glioma-inactivated 1-antibody-encephalitis is a treatable and potentially reversible cause of cognitive and psychiatric presentations, and may mimic cognitive decline, rapidly progressive dementia and complex psychosis in older patients. This aetiology is of immediate relevance given the alternative treatment pathway required, compared with other conditions presenting with cognitive deficits.


Autoantibodies , Dementia , Humans , Dementia/therapy , Autoantibodies/blood , Encephalitis/therapy , Encephalitis/diagnosis , Encephalitis/immunology , Intracellular Signaling Peptides and Proteins , Diagnosis, Differential , Aged , Mental Health Services , Female , Male
19.
BMC Genomics ; 25(1): 516, 2024 May 25.
Article En | MEDLINE | ID: mdl-38796425

Increasing evidence of brain-immune crosstalk raises expectations for the efficacy of novel immunotherapies in Alzheimer's disease (AD), but the lack of methods to examine brain tissues makes it difficult to evaluate therapeutics. Here, we investigated the changes in spatial transcriptomic signatures and brain cell types using the 10x Genomics Visium platform in immune-modulated AD models after various treatments. To proceed with an analysis suitable for barcode-based spatial transcriptomics, we first organized a workflow for segmentation of neuroanatomical regions, establishment of appropriate gene combinations, and comprehensive review of altered brain cell signatures. Ultimately, we investigated spatial transcriptomic changes following administration of immunomodulators, NK cell supplements and an anti-CD4 antibody, which ameliorated behavior impairment, and designated brain cells and regions showing probable associations with behavior changes. We provided the customized analytic pipeline into an application named STquantool. Thus, we anticipate that our approach can help researchers interpret the real action of drug candidates by simultaneously investigating the dynamics of all transcripts for the development of novel AD therapeutics.


Brain , Disease Models, Animal , Transcriptome , Animals , Mice , Brain/metabolism , Brain/diagnostic imaging , Brain/pathology , Immunomodulation/drug effects , Dementia/genetics , Dementia/therapy , Alzheimer Disease/genetics , Alzheimer Disease/therapy , Gene Expression Profiling , Killer Cells, Natural/immunology , Killer Cells, Natural/metabolism
20.
Healthc Policy ; 19(3): 78-95, 2024 Feb.
Article En | MEDLINE | ID: mdl-38721736

Background: Rural persons with dementia face medical services gaps. This study compares the health service utilization of rural and urban community-dwelling individuals with incident dementia. Methods: This study used a repeated annual cross-sectional cohort design spanning a period from 2000 to 2019 analyzing age-adjusted rates for 20 indicators of service use and mortality one year after diagnosis in Quebec administrative databases. Results: Of 237,259 persons, 20.1% were rural. Most rural persons had more emergency department visits and hospitalizations, shorter stays, less alternate level of care and fewer family physicians' and cognition specialists' visits. All groups had similar long-term care and mortality rates. Conclusion: Policy implications of these disparities are discussed.


Dementia , Rural Population , Urban Population , Humans , Dementia/epidemiology , Dementia/therapy , Quebec/epidemiology , Female , Male , Aged , Cross-Sectional Studies , Rural Population/statistics & numerical data , Aged, 80 and over , Urban Population/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data , Middle Aged , Cohort Studies , Hospitalization/statistics & numerical data
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