People Living With Dementia Research Articles

Health Experiences of LGBTQ+ People Living With Dementia and Their Care Partners: A Scoping Review of Research and Policy.

This scoping review aimed to synthesize research on the health experiences of LGBTQ+ people living with dementia (PLWD) and their caregivers, and the impact of health policies on this population. Six databases were searched for research studies and policy literature. Titles, abstracts, and full texts were reviewed by a three-member team. Data was extracted and thematically analyzed. Feedback from 7 LGBTQ+ adults was collected through a community consultation session. A total of 9257 unique research and 945 policy citations were identified, of which 60 research and 19 policy papers were reviewed. Nine research studies and ten policy papers met eligibility criteria. Themes emerged through the analysis of research findings, the community listening session, and policy findings. Future work needs to disentangle the impact of policies on the health experiences of this population. Dementia-specific and LGBTQ+ inclusive services and policies are needed to address growing health disparities.

The efficacy of cognitive stimulation, cognitive training, and cognitive rehabilitation for people living with dementia: a systematic review and meta-analysis.

Cognition-oriented treatments (COTs) are a group of non-pharmacological treatments aimed at maintaining or improving cognitive functioning. Specific recommendations on the use of these interventions in people living with dementia (PLwD) are included in the Italian Guideline on the Diagnosis and Treatment of Dementia and Mild Cognitive Impairment, developed by the Italian National Institute of Health. This systematic review and meta-analysis, based on the GRADE methodology, is part of the guideline. Considered outcomes included the cognitive functions, quality of life, and functional abilities of PLwD, taking into account disease severity, modality and system of delivery, and form of the intervention. The effectiveness of these interventions on caregivers' outcomes was also assessed. Both group and individual cognitive stimulation were reported as effective in supporting cognitive functions in PLwD at any degree of severity. Individual cognitive training and group cognitive training were reported as effective in improving global cognitive functions in people with mild dementia. Cognitive rehabilitation appeared to be effective only in improving the functional abilities of people with mild dementia. Cognitive rehabilitation appeared to be the most effective in improving caregivers' outcomes, with results suggesting a reduction in care burden. The observed differences in the effectiveness of these interventions in people with different disease severity can be explained by the intrinsic characteristics of each intervention. Despite the large number of available studies, a high clinical, statistical, and methodological heterogeneity was observed. More methodologically rigorous studies are needed to clarify the effectiveness of each protocol and modality of intervention.

Assessment of sleep patterns in dementia and general population cohorts using passive in-home monitoring technologies

BackgroundNocturnal disturbances are a common symptom experienced by People Living with Dementia (PLWD), and these often present prior to diagnosis. Whilst sleep anomalies have been frequently reported, most studies have been conducted in lab environments, which are expensive, invasive and not natural sleeping environments. In this study, we investigate the use of in-home nocturnal monitoring technologies, which enable passive data collection, at low cost, in real-world environments, and without requiring a change in routine.MethodsClustering analysis of passively collected sleep data in the natural sleep environment can help identify distinct sub-groups based on sleep patterns. The analysis uses sleep activity data from; (1) the Minder study, collecting in-home data from PLWD and (2) a general population dataset (combined n = 100, >9500 person-nights).ResultsUnsupervised clustering and profiling analysis identifies three distinct clusters. One cluster is predominantly PLWD relative to the two other groups (72% ± 3.22, p = 6.4 × 10−7, p = 1.2 × 10−2) and has the highest mean age (77.96 ± 0.93, p = 6.8 × 10−4 and p = 6.4 × 10−7). This cluster is defined by increases in light and wake after sleep onset (p = 1.5 × 10−22, p = 1.4 × 10−7 and p = 1.7 × 10−22, p = 1.4 × 10−23) and decreases in rapid eye movement (p = 5.5 × 10−12, p = 5.9 × 10−7) and non-rapid eye movement sleep duration (p = 1.7 × 10−4, p = 3.8 × 10−11), in comparison to the general population.ConclusionsIn line with current clinical knowledge, these results suggest detectable dementia sleep phenotypes, highlighting the potential for using passive digital technologies in PLWD, and for detecting architectural sleep changes more generally. This study indicates the feasibility of leveraging passive in-home technologies for disease monitoring.

Administrative data for public health: a regional data warehouse applied to dementia epidemiology

Abstract Administrative data can represent valuable sources of information for researchers seeking to advise policymakers. Several countries have established population-based data warehouses (DWH), integrating multiple data sources in single repositories through data linkage techniques. In Lombardy (Italy), a regional population-based DWH was established in the 1980s. It collects data about citizens from multiple sources in the social and health sectors, anonymising them immediately after their acquisition. Lombardy Region signed a specific agreement with the University of Pavia to investigate the epidemiology and access to care among people living with dementia (PLWD), using the DWH. A retrospective cohort study was conducted on hospitalised PLWD, including people aged ≥ 65 years with diagnoses of dementia at discharge from 2002 to 2020. The aim was to study the trends of hospitalisations among PLWD, computing these by calendar year, age, sex and cause of hospitalisation. A total of 340,144 hospital discharges were registered, of which 211,709 (63.0%) were women and 124,195 (37.0%) were men. The rate of hospitalisation decreased over the study period, ranging from 100.6/10,000 in 2002 to 65.1/10,000 in 2020. The average age at hospitalisation increased for men and women from 78.9 and 81.8 years in 2002 to 82.0 years and 84.2 years, respectively, in 2020. Respiratory diseases caused 10.4% of all hospitalisations in 2002 and grew steadily to 26.8% in 2020, becoming the leading cause of hospital admissions since 2017. Results allowed us to elaborate epidemiological measures and to characterise our population in a wide temporal trend, quantifying access to acute care by leading causes of hospitalisation. However, the analysis of administrative data comes along with several challenges, such as data incompleteness and biases. Researchers should take advantage of these data sources while keeping in mind the limitations and constraints related to data quality.

Utilizing graph neural networks for adverse health detection and personalized decision making in sensor-based remote monitoring for dementia care

Background:Sensor-based remote health monitoring is increasingly used to detect adverse health in people living with dementia (PLwD) at home, aiming to prevent hospitalizations and reduce caregiver burden. However, home sensor data is often noisy, overly granular, and suffers from unreliable labeling, data drift and high variability between households. Current anomaly detection methods lack generalizability and personalization, often requiring anomaly-free training data and frequent model updates. Objective:To develop a lightweight, explainable, self-supervised approach with personalized alert thresholds to detect adverse health events in PLwD, using changes in home activity. Methods:We hypothesized that health downturns manifest as detectable shifts in household movement patterns. Our approach leverages a Graph Barlow Twins contrastive model, which uses granular activity data and a macroscopic view to extract noise-robust, high-level and low-level discriminative features that represent daily activity patterns. Household-personalized alert thresholds are calculated based on clinician-set target alert rates, and daily anomaly scores are compared against these thresholds, triggering alerts for the clinical monitoring team. Model attention weights support explainability. Data were collected from a real-world dataset by the UK Dementia Research Institute (August 2019-April 2022). Results:Our model outperformed state-of-the-art temporal graph algorithms in detecting agitation and fall events across three patient cohorts, achieving 81% average recall and 88% generalizability at a target alert rate of 7%. Conclusion:We developed a novel, lightweight, explainable, and personalized Graph Barlow Twins model for real-world remote health monitoring in dementia care, with potential for broader applications in healthcare and sensor-based environments.

The impact of cultural practice and policy on dementia care in Nepal

BackgroundPeople’s wider culture plays a vital role in both dementia care and policy. This study aims to explore the cultural practice and policy influence around caring for People Living with Dementia (PLWD) in Nepal.MethodsAn exploratory qualitative study was designed to investigate dementia care in Nepal. The study comprised four in-depth interviews and four focus group discussions with 29 participants, including family members, health care professionals, and other stakeholders. Data were analysed using thematic analysis.ResultFour major themes (each with several sub-themes) were identified: (1) Cultural practice in dementia care; (2) Impact of policy on the dementia care; (3) Service provision; and (4) Education and training.ConclusionThere is a need for community-based awareness raising on dementia and its care, to sensitise all relevant stakeholders to meet the needs of PLWD. In addition, capacity building of health workforce is needed to enhance their knowledge of and skills in providing culturally appropriate dementia care.

What are the research priorities in dance for dementia? A co-created agenda to support equitable research

ABSTRACT Background There is a gap in the field of dance for dementia regarding how to engage in and improve equitable, moral, and rights-based ways of working with those with lived experience to co-design research priorities. We set out to create a collaborative research agenda for this field. Methods A series of collaborative activities were conducted, including an in-person workshop (n = 59 people), online workshop (n = 23 people), digital communications, podcasts, and co-writing, including with people living with dementia (PLWD), health and social care professionals, artists, arts organisational representatives, and academic researchers. Results Three key themes were constructed: 1) Improving access to dance participation; 2) Prioritising co-produced approaches; and 3) Enabling innovation in measurement and methods. Conclusion This is the first co-produced agenda for the field of dance for dementia. Underpinned by diverse perspectives and lived experience, it outlines themes and associated research questions that can be used in future research.

Feasibility of Implementing Dementia Collaborative Coaching into Routine Care in Nursing Homes

ABSTRACT Objectives The study evaluated the feasibility of implementing Dementia Collaborative Coaching (DCC) into the routine workflow of speech-language pathologists (SLPs) working in nursing homes (NHs). DCC is an intervention delivered by SLPs to train nursing assistants (CNAs) in communication strategies to support people living with dementia (PLWD). Methods We assessed the feasibility of identifying eligible PLWD; estimated intervention fidelity; evaluated suitability of outcome measures; and determined the preliminary impact on behavioral and psychological symptoms of distress (BPSD) among PLWD. SLPs completed a semi-structured interview to collect further acceptability data. Results Four SLPs in four NHs completed DCC with 10 CNAs and 15 eligible PLWD that they appropriately identified from their caseloads. SLPs conducted 90 DCC sessions with 64% fidelity and billed Medicare for all sessions. The outcome measure of Minimum Data Set item E0200B: Rejection of Care did not vary enough to be useful, but positive changes were noted on the Cohen-Mansfield Agitation Inventory, t(14) = 10.51, p < .001, Cohen’s d = 2.76. Interviews further indicated feasibility. Conclusions It is feasible to implement DCC into the workflow of SLPs in NHs. Clinical Implications Given the feasibility and preliminary positive impacts, SLPs could consider implementing DCC in routine care.

Exploring the Impact of Animal Assisted Interventions on the Occupational Participation of People Living with Dementia

Abstract Background Animal Assisted Intervention (AAI) is defined as a goal-directed intervention designed to promote improvement in social, emotional, physical and cognitive functioning (AAII 2020). AAIs are a growing area in dementia research and practice (Lai et al. 2019). There is a significant gap in implementing and researching AAI in a UK context (Fine 2019). Caring for pets and service animals is considered an instrumental activity of daily living (AOTA 2008) and AAI has been shown to enhance the occupational participation of other client populations (Winkle et al. 2012; Herlache-Pretzer et al. 2017; Andreasen et al. 2017). It is unclear what impact AAI has on the occupational participation of people living with dementia (PLWD). Methods Interpretative Phenomenological Analysis was proposed to facilitate deep level interpretations of the experience of occupational participation for PLWD who have an assistance dog. Over a two-month period, the researcher proposed to complete four thirty-minute video observations capturing PLWD participating in a chosen occupation in their home environment. The researcher further proposed to maintain a reflexive journal and document notable observations throughout the research process to enhance the development of themes. Results PLWD have the right to access personally meaningful occupations (WFOT 2006). Assistance dogs may have the potential to facilitate positive occupational experiences such as occupational identity, occupational competence and occupational adaptation. Conclusion Occupational therapists who claim to be guided by the principals of client-centred practice (RCOT 2015a) must strive to look beyond traditional interventions to effectively meet the individual needs and preferences of PLWD (Brodrick and Barry 2016). Education and further research (Fine 2019) are required to raise the profile of AAI in a UK context. Future research would benefit from exploring the experience of occupational participation in social environmental contexts for PLWD (who have an assistance dog), to gain whole experiential accounts of this phenomenon.

Development and Initial Testing of an Artificial Intelligence-Based Virtual Reality Companion for People Living with Dementia in Long-Term Care.

Background/Objectives: Feelings of loneliness are common in people living with dementia (PLWD) in long-term care (LTC). The goals of this study were to describe the development of a novel virtual companion for PLWD living in LTC and assess its feasibility and acceptability. Methods: The computer-generated virtual companion, presented using a head-mounted virtual reality display, was developed in two stages. In Stage 1, the virtual companion asked questions designed to encourage conversation and reminiscence. In Stage 2, more powerful artificial intelligence tools allowed the virtual companion to engage users in nuanced discussions on any topic. PLWD in LTC tested the application at each stage to assess feasibility and acceptability. Results: Ten PLWD living in LTC participated in Stage 1 (4 men and 6 women; average 82 years old) and Stage 2 (2 men and 8 women; average 87 years old). Session lengths ranged from 0:00 to 5:30 min in Stage 1 and 0:00 to 53:50 min in Stage 2. Speech recognition issues and a limited repertoire of questions limited acceptance in Stage 1. Enhanced conversational ability in Stage 2 led to intimate and meaningful conversations with many participants. Many users found the head-mounted display heavy. There were no complaints of simulator sickness. The virtual companion was best suited to PLWD who could engage in reciprocal conversation. After Stage 2, response latency was identified as an opportunity for improvement in future versions. Conclusions: Virtual reality and artificial intelligence can be used to create a virtual companion that is acceptable and enjoyable to some PLWD living in LTC. Ongoing innovations in hardware and software will allow future iterations to provide more natural conversational interaction and an enhanced social experience.

Sleep-related measurements to assess sleep disturbances among people living with dementia in nursing homes: a systematic review.

There is a high prevalence of sleep disturbances among people living with dementia (PLWD) in nursing homes. Reliable and valid measurements are needed to assess these disturbances. The aim of this systematic review was to identify, analyze and synthesize studies of sleep-related measurements to assess sleep disturbances in PLWD. The databases PubMed, CINAHL, and PsycINFO were systematically searched in 2019; the search was updated in March 2024. The inclusion criteria were as follows: participants with dementia or probable dementia in any care setting; and studies that reported at least one of the following aspects: (I) theoretical and conceptual frameworks, (II) user or patient involvement by type of users in measurement development, (III) feasibility and practicability of measurements, and (IV) results of psychometric analyses. The quality of the included studies was evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria and the quality appraisal tool for studies of diagnostic reliability (QAREL) tool. A total of 5169 studies were identified; ultimately, 15 studies describing three self-administered measurements, three proxy-administered measurements and two technological measurements were included. No sleep-related measurement showed acceptable psychometric properties in any of the COSMIN domains. No measurement without adaptation can be recommended for PLWD in nursing homes. If existing measurements are used in clinical practice, the self-perspective of PLWD should be taken into account. If this is no longer fully possible, proxy-rating perspectives in combination could be an option. Future research on sleep-related measurements should be strictly based on international consensus-based psychometric quality criteria.

No Place to Go: The Relationship Between Care Partner Inclusion Practices and the Hospital Environment.

The objective of this was to explore how the physical environment in a hospital contributes to care partner inclusion practices. Despite their vital efforts in caring for people living with dementia (PLWD), care partners of PLWD often report feeling not included in their loved ones' hospitalizations. This phenomenon goes against research, policy initiatives, and hospital design frameworks that underscore the importance of including care partners in hospital care. To ensure that care partners are systematically included in hospital care, health systems must create an environment that prioritizes care partners' presence. This descriptive qualitative design employs a multimethod approach to data collection. Our team conducted direct observations in a large academic hospital and interviewed 23 clinicians/administrators and 15 care partners of PLWD to understand the relationship between hospital environments and care partner inclusion. Observational data were analyzed using a framework analysis, and interview data were analyzed through thematic analysis. Direct observations revealed an underutilization of environmental resources such as family-centered spaces and environmental communication tools. Interview data revealed that adequate space for care partners, the layout of patient rooms, parking accessibility, room personalization, and comfort level of the hospital space all impact care partner inclusion. Our findings highlight opportunities for health systems to create hospital environments that support PLWD and their care partners. In pursuit of systematic care partner inclusion, health systems can make adequate space for care partners, allocate dementia-friendly parking spaces, increase utilization of environmental communication tools, and increase comfort level of the environment.

Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities.

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

The Design of Health Promoting Outdoor Environments for People with Young-Onset Dementia-A Study from a Rehabilitation Garden.

Health-promoting outdoor environments designed for people living with dementia (PLwD) has proved to be an effective non-pharmacological intervention for treatment of symptoms and improved well-being. However, for individuals with Young-Onset Dementia (YOD), who have particular symptoms and needs, the content and design of these environments are underexplored. This study aimed to explore the needs of individuals with YOD in a garden setting, to generate design-related knowledge for 'dementia-friendly' outdoor environments, while contributing to the field of Evidence-Based Design (EBD). An 8-week long nature-based program was carried out in Alnarp's rehabilitation garden, a specifically developed garden based on research from e.g., landscape architecture, environmental psychology and medical science. The study used a triangulation of qualitative methods including six participants with YOD and a multidisciplinary team of five staff members. Content analysis was used for all gathered data, including 17 semi-structured interviews with participants with YOD and with staff. Data collection and analysis was performed based on the evidence-based Quality Evaluation Tool (QET). The study led to a target group adapted version of the QET for people with YOD containing 20 developed environmental qualities for designers to pursue in therapeutic gardens, including the additional quality of Calmness. A progression was noted, as a result of perceived positive effects during the intervention, indicating possible change and development of the group's needs and preferences in the outdoors.

Gaps in the coordination of care for people living with dementia.

One-third of people living with dementia (PLWD) have highly fragmented care (i.e., care spread across many ambulatory providers without a dominant provider). It is unclear whether PLWD with fragmented care and their caregivers perceive gaps in communication among the providers involved and whether any such gaps are perceived as benign inconveniences or as clinically meaningful, leading to adverse events. We sought to determine the frequency of perceived gaps in communication (coordination) among providers and the frequency of self-reported adverse events attributed to poor coordination. We conducted a cross-sectional study in the context of a Medicare accountable care organization (ACO) in New York in 2022-2023. We included PLWD who were attributed to the ACO, had fragmented care in the past year by claims (reversed Bice-Boxerman Index ≥0.86), and were in a pragmatic clinical trial on care management. We used an existing survey instrument to determine perceptions of care coordination and perceptions of four adverse events (repeat tests, drug-drug interactions, emergency department visits, and hospital admissions). ACO care managers collected data by telephone, using clinical judgment to determine whether each survey respondent was the patient or a caregiver. We used descriptive statistics to summarize results. Of 167 eligible PLWD, surveys were completed for 97 (58.1%). Of those, 88 (90.7%) reported having >1 ambulatory visit and >1 ambulatory provider and were thus at risk for gaps in care coordination and included in the analysis. Of those, 23 respondents were patients (26.1%) and 64 were caregivers (72.7%), with one respondent's role missing. Overall, 57% of respondents reported a problem (or "gap") in the coordination of care and, separately, 18% reported an adverse event that they attributed to poor care coordination. Gaps in coordination of care for PLWD are reported to be very common and often perceived as hazardous.

From the Perspective of People with Dementia: Using Creative Qualitative Measures to Assess the Values and Opinions on Freedom and Safety among People Living with Dementia.

With the growing numbers of people living in old age, a system that sustains autonomy, dignity and freedom of movement for people living with dementia (PwD) needs to be installed. However, due to the cognitive constraints in the cohort of PwD, traditional qualitative methods of inquiry, such as interviews, are often not a good match. This study aimed to use creative qualitative assessment tools to assess the values and opinions of PwD in nursing homes on freedom and safety. Twenty-two nursing home residents with memory problems participated in this study. Important themes related to freedom and safety were identified using a diverse set of methodologies. Overall, residents had a similar view on 'safety', relating this to having a homely environment where people look out for you, with a good balance between busy and quiet areas and being able to retain cognitive and physical function. Values around freedom were more diverse. Residents who were still capable of logical speech generally voiced a wish for independence, making one's own decisions and wanting to go outside. For residents who no longer spoke, freedom seemed to be experienced more through the connection to other people. These results show that PwD still have distinct personal values concerning freedom and safety, which should be given due consideration in decision-making regarding nursing home policy, thereby potentially improving the quality of life of PwD.

Networked everyday lives in the ‘care-full’ city: A framework for examining the complexities of immigrants living with dementia, carepartners, and care workers

ABSTRACT The ways in which people living with dementia (PLWD) care and are cared for in urban and suburban environments is not fully understood. Specifically, there is limited research on the impact neighborhoods have on the intersectional experiences of well-being for PLWD and their formal and informal caregivers—particularly for immigrants, women, and those living in under-resourced suburban areas. Writing from the geographical context of the inner suburb of Scarborough in Toronto, Canada, we present a framework for understanding the everyday complexities of care practices in this triad of individuals—PLWDs, care partners, and care workers—that considers their diverse practices, contexts, identities, and relations through time. Documenting these networks of caring complexities, represented in social and spatial ways, can disrupt the ways in which neoliberalism has relegated the understanding of care to be a highly gendered and racialized problem, as well as an individual problem to be solved by the free market, and to be contained in the home between family members (not in the public community realm).

Identifying Dementia Severity Among People Living With Dementia Using Administrative Claims Data

ObjectivesThere is currently no reliable tool for classifying dementia severity level based on administrative claims data. We aimed to develop a claims-based model to identify patients with severe dementia among a cohort of patients with dementia. DesignRetrospective cohort study. Setting and ParticipantsWe identified people living with dementia (PLWD) in US Medicare claims data linked with the Minimum Data Set (MDS) and Outcome and Assessment Information Set (OASIS). MethodsSevere dementia was defined based on cognitive and functional status data available in the MDS and OASIS. The dataset was randomly divided into training (70%) and validation (30%) sets, and a logistic regression model was developed to predict severe dementia using baseline (assessed in the prior year) features selected by generalized linear mixed models (GLMMs) with least absolute shrinkage and selection operator (LASSO) regression. We assessed model performance by area under the receiver operating characteristic curve (AUROC), area under precision-recall curve (AUPRC), and precision and recall at various cutoff points, including Youden Index. We compared the model performance with and without using Synthetic Minority Oversampling Technique (SMOTE) to reduce the imbalance of the dataset. ResultsOur study cohort included 254,410 PLWD with 17,907 (7.0%) classified as having severe dementia. The AUROC of our primary model, without SMOTE, was 0.81 in the training and 0.80 in the validation set. In the validation set at the optimized Youden Index, the model had a sensitivity of 0.77 and specificity of 0.70. Using a SMOTE-balanced validation set, the model had an AUROC of 0.83, AUPRC of 0.80, sensitivity of 0.79, specificity of 0.74, positive predictive value of 0.75, and negative predictive value of 0.78 when at the optimized Youden Index. Conclusions and ImplicationsOur claims-based algorithm to identify patients living with severe dementia can be useful for claims-based pharmacoepidemiologic and health services research.

'Becoming restrained': Conceptualising restrictive practices in the care of people living with dementia in acute hospital settings.

The use of restrictive practices within health and social care has attracted policy and practice attention, predominantly focusing on children and young people with mental health conditions, learning disabilities and autism. However, despite growing appreciation of the need to improve care quality for people living with dementia (PLWD), the potentially routine use of restrictive practices in their care has received little attention. PLWD are at significant risk of experiencing restrictive practices during unscheduled acute hospital admissions. In everyday routine hospital care of PLWD, concerns about subtle and less visible forms of restrictive practices and their impacts remain. This article draws on Deleuze's concepts of 'assemblage' and 'event' to conceptualise restrictive practices as institutional, interconnection social and political attitudes and organisational cultural practices. We argue that this approach illuminates the diverse ways restrictive practices are used, legitimatised and perpetuated in the care of PLWD. We examine restrictive practices in acute care contexts, understanding their use requires examining the wider socio-political, organisational cultures and professional practice contexts in which clinical practices occurs. Whereas 'events' and 'assemblages' have predominantly been used to examine embodied entanglements in diverse health contexts, examining restrictive practices as a structural assemblage extends the application of this theoretical framework.

Personalized goals of people living with dementia and family carers: A content analysis of goals set within an individually tailored psychosocial intervention trial.

Person-centered goals capture individual priorities in personal contexts. Goal Attainment Scaling (GAS) has been used in drug trials involving people living with dementia (PLWD) but GAS has been characterized as difficult to incorporate into trials and clinical practice. We used GAS in a trial of New Interventions for Independence in Dementia Study (NIDUS)-family, a manualized care and support intervention, as the primary outcome and to tailor the interventions to goals set. We aimed to assess the feasibility and content of baseline goal-setting. We developed training for nonclinical facilitators to set individualized GAS goals remotely with PLWD and family carer dyads, or carers alone, in the intervention trial, during the COVID-19 pandemic. A qualitative content analysis of the goals set explored participants' priorities and unmet needs, to consider how existing GAS goal domains might be extended in a psychosocial intervention trial context. Eleven facilitators were successfully trained to set and score GAS goals. A total of 313/328 (95%) participants were able to collaboratively set three to five goals with the facilitators. Of these, 302 randomized participating dyads set 1043 (mean 3.5, range 3 to 5) goals. We deductively coded 719 (69%) goals into five existing GAS domains (mood, behavior, self-care, cognition, and instrumental activities of daily living); 324 (31%) goals were inductively coded into four new domains: carer break, carer mood, carer behavior, and carer sleep. The most frequently set goals pertained to social support. There was little variation in types of goals set based on the context of who set them or level of pandemic restrictions in place. It is feasible for people without clinical training to set GAS holistic goals for PLWD and family carers in the community. GAS has potential to facilitate personalization of care and support interventions, such as NIDUS-family, and facilitate the roll out of more personalized care. Goal Attainment Scaling (GAS) can capture meaningful priorities of people with dementia and their family carers.A psychosocial intervention RCT used GAS as the primary outcome measure and goals were set collaboratively by non-clinically trained facilitators.The findings underscore the feasibility of using GAS as an outcome measure with this population.The content analysis findings unveiled the diversity in experiences and priorities of the study participants.GAS has the potential to support the implementation of more person-centred approaches to dementia care.