-
Social Science & Medicine (1982) Aug 2023An increasing number of people living with dementia worldwide receive informal care from their family members. A key element of dementia care is maintaining a daily...
An increasing number of people living with dementia worldwide receive informal care from their family members. A key element of dementia care is maintaining a daily routine and familiarity, making caring an extremely rhythmic practice. To explore the rhythmic nature of informal care, we apply and advance Lefebvre's unfinished rhythmanalysis by developing an original typology of eurhythmia as a metastable equilibrium. Metastability, although appearing macroscopically stable, is a vulnerable state where a slight disturbance can result in deviation to another state (i.e., stable or unstable). Drawing upon interviews with informal caregivers, we discuss the rhythms and (dis)harmonies of caring practice, including the substantial rhythms of caring practice, the relational balance of rhythms between the caregiver and care recipient, and the various rhythmic disruptions that occur. We demonstrate how metastability provides an understanding of the ever-changing rhythms of every day and allows us to move beyond the immediacy of arrhythmic breaks and explore the subtle changes that occur in (poly)rhythms. Thus, eurhythmia as a metastable equilibrium allows us to explore the gradual and subtle development of, and changes to, dementia care and other routine practices in health geography.
Topics: Humans; Dementia; Caregivers; Family
PubMed: 37478663
DOI: 10.1016/j.socscimed.2023.116099 -
Journal of Aging and Health Aug 2023Earlier studies suggest that being married in later life protects against dementia, and that being single in old age increases the risk of dementia. In this study, we...
Earlier studies suggest that being married in later life protects against dementia, and that being single in old age increases the risk of dementia. In this study, we examine midlife marital status trajectories and their association with dementia and mild cognitive impairment (MCI) at ages 70 plus using a large population based sample from Norway. Based on a general population sample linked to population registries ( = 8706), we used multinomial logistic regression to examine the associations between six types of marital trajectories (unmarried, continuously divorced, intermittently divorced, widowed, continuously married, intermittently married) between age 44 and 68 years from national registries and a clinical dementia or a MCI diagnosis after age 70. We estimated relative risk ratios (RRR) and used mediation analyses adjusting for education, number of children, smoking, hypertension, obesity, physical inactivity, diabetes, mental distress, and having no close friends in midlife. Inverse probability weighting and multiple imputations were applied. The population attributable fraction was estimated to assess the potential reduction in dementia cases due to marital histories. Overall, 11.6% of the participants were diagnosed with dementia and 35.3% with MCI. Dementia prevalence was lowest among the continuously married (11.2%). Adjusting for confounders, the risk of dementia was higher for the unmarried (RRR = 1.73; 95% CI: 1.24, 2.40), continuously divorced (RRR = 1.66; 95% CI: 1.14, 2.43), and intermittently divorced (RRR = 1.50; 95% CI: 1.09, 2.06) compared to the continuously married. In general, marital trajectory was less associated with MCI than with dementia. In the counterfactual scenario, where all participants had the same risk of receiving a dementia diagnosis as the continuously married group, there would be 6.0% fewer dementia cases. Our data confirm that staying married in midlife is associated with a lower risk of dementia and that divorced people account for a substantial share of dementia cases.
Topics: Humans; Aged; Cognitive Dysfunction; Marriage; Marital Status; Divorce; Dementia; Risk Factors
PubMed: 36321864
DOI: 10.1177/08982643221131926 -
PloS One 2024Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience... (Review)
Review
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/).
Topics: Humans; Dementia; Caregivers; Patient-Centered Care
PubMed: 38713699
DOI: 10.1371/journal.pone.0302929 -
Journal of Geriatric Psychiatry and... Sep 2023Stigma often surrounds people with dementia when it comes to use of computer technology, although evidence does not always support this. More understanding is needed to...
BACKGROUND
Stigma often surrounds people with dementia when it comes to use of computer technology, although evidence does not always support this. More understanding is needed to investigate attitudes and experience in relation to computer technology use among those living with dementia and their readiness to use it to support self-management.
METHODS
An online self-report questionnaire was completed by adults living with a dementia diagnosis and those living with them. Questions explored how long the participants had been using computer technology; how regularly they used it; the popularity of common communication apps; and whether they were interested in using an app to support their independence.
RESULTS
47 participants with dementia and 62 supporters responded to the questionnaire. There were no obvious differences between those with dementia and supporters when it came to regular technology usage and both groups showed positive attitudes to the use of it for independence in dementia.
CONCLUSIONS
There was active use of computer technology among this population. Benefits were shown to include communication, increasing individuals' understanding of dementia diagnoses, and enabling independent activities for both those with dementia and supporters.
Topics: Humans; Dementia; Mobile Applications; Surveys and Questionnaires; Self Report
PubMed: 36597870
DOI: 10.1177/08919887221149139 -
Nutrients Nov 2023Dietary omega-3 fatty acids are promising nutrients in dementia. Several prospective cohort studies have examined the relationships between circulating omega-3 (an...
Dietary omega-3 fatty acids are promising nutrients in dementia. Several prospective cohort studies have examined the relationships between circulating omega-3 (an objective biomarker of dietary intake) and incident dementia, the largest to date being a report from the UK Biobank (n = 102,722). Given the recent release of new metabolomics data from baseline samples from the UK Biobank, we re-examined the association in a much larger sample (n = 267,312) and also focused on associations with total omega-3, docosahexaenoic acid (DHA), and non-DHA omega-3. Using Cox regression models, we observed that the total omega-3 status was inversely related to the risk of Alzheimer's (Q5 vs. Q1, hazard ratio [95% confidence interval] = 0.87 [0.76; 1.00]) and all-cause dementia (Q5 vs. Q1, 0.79 [0.72; 0.87]). The strongest associations were observed for total omega-3 (and non-DHA omega-3) and all-cause dementia. In prespecified strata, we found stronger associations in men, and in those aged ≥60 years at baseline (vs. those aged 50-59). Thus, in the largest study to date on this topic, we confirmed the favorable relationships between DHA and risk for dementia, and we also found evidence that non-DHA omega-3 may be beneficial. Finally, we have better defined the populations most likely to benefit from omega-3-based interventions.
Topics: Male; Humans; Fatty Acids, Omega-3; Prospective Studies; Biological Specimen Banks; Docosahexaenoic Acids; Dementia; Eicosapentaenoic Acid; Fatty Acids
PubMed: 38068754
DOI: 10.3390/nu15234896 -
Nagoya Journal of Medical Science Nov 2023This study aimed to confirm the reality of family-focused medical treatment of dementia in Japan and the US. It conducted a questionnaire survey on informed consent from...
This study aimed to confirm the reality of family-focused medical treatment of dementia in Japan and the US. It conducted a questionnaire survey on informed consent from patients with dementia among neurologists and psychiatrists in four prefectures in the Tokai Region (Aichi, Gifu, Mie, and Shizuoka) and dementia specialists in the US. Of the responses, 120 (39.7% response rate) and 20 (5.9% response rate) were obtained, respectively. In obtaining informed consent from patients with dementia, 75 Japanese specialists (62.5%) and 16 US specialists (80.0%) regularly assessed patients' decision-making abilities. The majority of specialists in both Japan and the US used the Mini-Mental State Examination and Hierarchic Dementia Scale-Revised, which are widely used for cognitive function assessment. In the survey, 27 Japanese specialists (22.5%) and 10 US specialists (50.0%) had different considerations when obtaining informed consent for participation in research, compared to their medical practice. The majority of Japanese and US specialists obtained informed consent from both the patient and their family.
Topics: Humans; Japan; Informed Consent; Surveys and Questionnaires; Dementia
PubMed: 38155614
DOI: 10.18999/nagjms.85.4.797 -
Journal of Medical Internet Research Sep 2023Knowledge graph-based recommender systems offer the possibility of meeting the personalized needs of people with dementia and their caregivers. However, the usability of...
BACKGROUND
Knowledge graph-based recommender systems offer the possibility of meeting the personalized needs of people with dementia and their caregivers. However, the usability of such a recommender system remains unknown.
OBJECTIVE
This study aimed to evaluate the usability of a knowledge graph-based dementia care intelligent recommender system (DCIRS).
METHODS
We used a convergent mixed methods design to conduct the usability evaluation, including the collection of quantitative and qualitative data. Participants were recruited through social media advertisements. After 2 weeks of DCIRS use, feedback was collected with the Computer System Usability Questionnaire and semistructured interviews. Descriptive statistics were used to describe sociodemographic characteristics and questionnaire scores. Qualitative data were analyzed systematically using inductive thematic analysis.
RESULTS
A total of 56 caregivers were recruited. Quantitative data suggested that the DCIRS was easy for caregivers to use, and the mean questionnaire score was 2.14. Qualitative data showed that caregivers generally believed that the content of the DCIRS was professional, easy to understand, and instructive, and could meet users' personalized needs; they were willing to continue to use it. However, the DCIRS also had some shortcomings. Functions that enable interactions between professionals and caregivers and that provide caregiver support and resource recommendations might be added to improve the system's usability.
CONCLUSIONS
The recommender system provides a solution to meet the personalized needs of people with dementia and their caregivers and has the potential to substantially improve health outcomes. The next step will be to optimize and update the recommender system based on caregivers' suggestions and evaluate the effect of the application.
Topics: Humans; Pattern Recognition, Automated; Computer Systems; Data Accuracy; Intelligence; Dementia
PubMed: 37751241
DOI: 10.2196/45788 -
Using AI-Based Technologies to Help Nurses Detect Behavioral Disorders: Narrative Literature Review.JMIR Nursing May 2024The behavioral and psychological symptoms of dementia (BPSD) are common among people with dementia and have multiple negative consequences. Artificial intelligence-based... (Review)
Review
BACKGROUND
The behavioral and psychological symptoms of dementia (BPSD) are common among people with dementia and have multiple negative consequences. Artificial intelligence-based technologies (AITs) have the potential to help nurses in the early prodromal detection of BPSD. Despite significant recent interest in the topic and the increasing number of available appropriate devices, little information is available on using AITs to help nurses striving to detect BPSD early.
OBJECTIVE
The aim of this study is to identify the number and characteristics of existing publications on introducing AITs to support nursing interventions to detect and manage BPSD early.
METHODS
A literature review of publications in the PubMed database referring to AITs and dementia was conducted in September 2023. A detailed analysis sought to identify the characteristics of these publications. The results were reported using a narrative approach.
RESULTS
A total of 25 publications from 14 countries were identified, with most describing prospective observational studies. We identified three categories of publications on using AITs and they are (1) predicting behaviors and the stages and progression of dementia, (2) screening and assessing clinical symptoms, and (3) managing dementia and BPSD. Most of the publications referred to managing dementia and BPSD.
CONCLUSIONS
Despite growing interest, most AITs currently in use are designed to support psychosocial approaches to treating and caring for existing clinical signs of BPSD. AITs thus remain undertested and underused for the early and real-time detection of BPSD. They could, nevertheless, provide nurses with accurate, reliable systems for assessing, monitoring, planning, and supporting safe therapeutic interventions.
Topics: Humans; Artificial Intelligence; Dementia
PubMed: 38805252
DOI: 10.2196/54496 -
Dementia (London, England) Apr 2024There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of...
There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the landscape of needs and services available, and provides an evidence base to inform priority-setting for strengthening responses to dementia in South Africa. This situational analysis was conducted in three phases: (1) a desk review guided by a comprehensive topic guide which includes the WHO's Global Dementia Observatory indicators; (2) multi-sectoral stakeholder interviews to verify the secondary sources used in the desk review, and to identify gaps and opportunities in policy and service provisions; and (3) a SWOT-analysis examining the strengths, weaknesses, opportunities and threats in current care and support provisions in South Africa. Our findings highlight the gaps and opportunities with current service provision and show how structural factors create barriers to diagnosis, support, and care. There is an urgent need for intersectoral policy responses to support and strengthen current health, social care, and long-term support systems so that people living with dementia and their families can live and age well. This paper forms part of a larger study on strengthening responses to dementia (The STRIDE project).
Topics: Humans; South Africa; Dementia; Aged; Health Policy
PubMed: 37337309
DOI: 10.1177/14713012231183358 -
Frontiers in Public Health 2023A shift in research interest from separate care problem to care problem clusters among caregivers of people living with dementia may contribute to a better understanding...
BACKGROUND
A shift in research interest from separate care problem to care problem clusters among caregivers of people living with dementia may contribute to a better understanding of dementia care. However, the care problems network among caregivers of people living with dementia are still unknown. This study aimed to identify care problem clusters and core care problems, and explore demographic variables associated with these care problem clusters among caregivers of people living with dementia.
METHODS
Participants were recruited through memory clinics and WeChat groups. The principal component analysis was applied to identify care problem clusters. The network analysis was conducted to describe the relationships among care problems and clusters. Multiple linear models were used to explore the associated factors for the occurrence of the overall care problems and top three central care problem clusters.
RESULTS
A total of 1,012 carer-patient pairs were included in the analysis. Nine care problem clusters were identified. In the entire care problem network, "deterioration in activities of daily living" was the most core care problem cluster across the three centrality indices, followed by "verbal and nonverbal aggression" and "loss of activities of daily living." Variables including marital status, years of dementia diagnosis, number of dementia medication type, and caregiver's educational attainment were associated with the prevalence of these three care problem clusters.
CONCLUSION
Our study suggests that there is a need to evaluate care problem clusters for the improvement of care problem management among people living with dementia. It is particularly important to include assessment and treatment of core care problem as an essential component of the dementia care.
Topics: Humans; Aged; Caregivers; Activities of Daily Living; Educational Status; Linear Models; Dementia
PubMed: 37637827
DOI: 10.3389/fpubh.2023.1195637