Phuong Leung

Background: Despite people with dementia being at increased risk of going missing, we currently have limited knowledge about the factors that increase their exposure to harm during missing incidents. Objective: To compare characteristics of missing incidents and associated risk factors for harm in older people with and without dementia reported missing in the UK. Methods: Retrospective analysis of reported missing incident data from two police forces in England and Wales over an 84-month period (January 2015 to December 2021). Results: A total of 1540 missing incidents involving 1286 people ≥65 years were identified, of which 414 (27%) incidents were dementia-related. In most incidents, people with dementia were reported missing from their own home/neighbourhood, with approximately half being found by the police. Nine percent (n = 39) sustained significant harm, including one death. Older age, going missing at night and prolonged duration of going missing were associated with increased probability of harm. Approximately 14% of people with dementia and 11% of people without dementia experienced at least one repeat missing incident. Conclusions: Our study is the largest to date reporting on missing incidents among older people in the UK. Despite being a low frequency event, missing incidents are associated with significant risk of harm for older people with and without dementia. Preventative and timely interventions to prevent harm associated with missing incidents for those aged over 65 years with or without dementia are urgently needed.

Background: People with dementia are at increased risk of going missing, which can lead to severe harm and distress. Despite the need for a better understanding of how to support people with dementia and their families affected, research in this area remains limited. This qualitative study explored lived experiences of families affected by missing incidents, and carers’ and professionals’ perspectives of how to improve care. Methods: A multi-perspective, qualitative framework analysis approach was undertaken with purposive sampling. Topic guides were developed in consultation with carers and professionals. We conducted in-depth semi-structured interviews and a focus group with key stakeholders (n = 33), which included carers of people with dementia (n = 9), police officers (n = 6), healthcare professionals (n = 12) and researchers (n = 6). Data were interpreted using thematic analysis to identify key themes. Reflexivity was considered throughout the process. Results: Five key themes were identified: (i) risk and protective factors of missing incidents, (ii) gaps in reporting and response pathways, (iii) the use of technology for preventing and responding to missing incidents, (iv) the role of communities in prevention of harm, and (v) the need for integration of services through multi-agency collaboration. Conclusion: This study highlights key gaps on our national and global response to missing incidents in dementia. Understanding risk and protective factors and improving our public health response through multi-agency collaboration and clear care pathways, were considered key by stakeholders. Our findings offer actionable insights to inform future strategies and improve care for people with dementia who go missing.

Timely dementia diagnosis is a global priority, reflected in most national and regional policies and plans. Nevertheless, there are currently no robust estimates of the average time to diagnosis (TTD) and factors influencing diagnostic intervals. This article presents the first systematic review of quantitative studies on TTD in dementia and the factors associated with its duration. We systematically searched EMBASE, Psych INFO, MEDLINE, and CINAHL databases for relevant studies published up to December 2024. We defined TTD as the interval between symptom onset (rated by family carers or patients using interviews or medical records) to final diagnosis. Risk of bias was assessed using the Reporting studies on time to diagnosis tool. We included 13 studies reporting data on 30,257 participants, with age at onset ranging between 54 and 93 years. Meta‐analysis pooling 10 studies showed that average mean TTD across all types of dementia was 3.5 years [confidence interval (CI): 2.7–4.3; moderate quality evidence]. Analyses of six studies showed that TTD in young onset dementia was 4.1 years (CI: 3.4–4.9; moderate quality evidence). Although the factors influencing TTD were inconsistent, a younger age at onset and having frontotemporal dementia were consistently associated with a longer interval to diagnosis. TTD in dementia remains long, and specific healthcare strategies are urgently needed to improve it. Increasing the evidence base and developing interventions to reduce TTD should be a future research priority. Specialist services are likely to be key in improving TTD in young‐onset dementia.

Background: People with dementia are at risk of going missing while walking outdoors, which can significantly affect their safety and well-being. However, evidence on their lived experiences during such incidents, as well as on strategies that may improve care remain limited. Aim: To conduct a narrative synthesis of qualitative studies exploring the lived experiences and preferences of people with dementia, family carers and professionals in relation to strategies for supporting safe walking and preventing missing episodes in both community and residential care settings. Methods: Four electronic databases (Medline, Embase, PsycINFO and CINAHL) were systematically searched up to April 2025. Studies were appraised using the Critical Appraisal Skills Programme qualitative research checklist. A narrative synthesis framework was adapted to explore themes emerging within and among studies. Results: Of the 19 207 articles identified, 25 met the inclusion criteria. Four themes emerged: (a) emotional impact of missing episodes, (b) safe walking as a fundamental need for people with dementia, (c) existing strategies for safe walking and responding to missing episodes and (d) experiences of using technological solutions to prevent and manage missing incidents. Conclusions: Preventive and reactive strategies, including technological devices, can promote safe walking for people with dementia. There is an urgent need to embed safe walking plans within dementia care packages to mitigate harms associated with missing incidents. Initiatives that raise awareness of risk among people with dementia, carers and professionals should form a core component of clinical practice.

Objectives: This study aimed to investigate the mediating effects of quality of the caregiving relationship and other carer and person with dementia variables in predicting carer resilience over time.Method: Carers of people with mild and moderate dementia in community settings completed baseline (n = 176 dyads) and six‐month follow‐up assessments (n = 139 dyads). Causal mediation analysis was conducted using Pearson Correlation and Structural Equation Modelling (SEM) to examine longitudinal predictors of carer resilience, and the effect of several mediating person with dementia, and carer factors on carer resilience over time.Results: At 6‐month follow‐up, higher levels of carer resilience were longitudinally correlated with higher ratings of perceived relationship quality by people with dementia (r = 0.53 p ≤ 0.01), and lower levels of emotional distress symptoms by carer's (r = −0.59 p ≤ 0.01). Mediation analyses showed that people with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms (β = −0.32, p ≤ 0.001) and carer resilience (β = 0.53, p ≤ 0.001) over time. The final SEM provided a good fit for the data (X ² = 0.12, p = 0.72, CFI = 1.00, NFI = 0.99, and Root Mean Square Error of Approximation = 0.001).Conclusion: Higher ratings of perceived relationship quality by people with dementia, and lower levels of carer emotional distress predicted higher carer resilience at follow‐up. People with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms and carer resilience over time. Our findings indicate that interventions aimed at strengthening the caregiving relationship might have a protective long‐term effect for carer resilience in dementia caregiving.

A dementia diagnosis can affect social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities. Focused ethnography informed by Spradley’s approach to data collection and analysis. Observations in community spaces. Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hr of observation, and researcher field notes. The overarching theme “the dynamic nature of being a person” encapsulates participants’ exhibited experiences in negotiating to attain and sustain an acknowledged place in their communities. Two subthemes characterized contexts and actions: (1) “Being me—not dementia”: Participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. (2) “Resisting or acquiescing to ‘being absent in place’”: Participants were often able to resist being absent to the gaze from others, but some social structures and behaviors led to a person being “in place,” yet not having their presence confirmed. People living with dementia can actively draw on personal attributes, familiar rituals, objects, and social roles to continue to present themselves as social beings. Identifying how postdiagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia enabling them to have a continued social presence.

Background: Engaging in meaningful activity is an important contributor to well‐being in late life. This study aimed to develop a new measure of meaningful and enjoyable activities in people living with mild dementia.Methods: The study consisted of four phases: (a) a review of measures of meaningful activity in older people; (b) interviews with people with dementia and their carers (n = 32), (c) expert opinion; and (d) feasibility testing in a pilot randomised controlled trial (n = 63).Results: The development process resulted in a 20‐item questionnaire. The Meaningful and Enjoyable Activities Scale (MEAS) evidenced appropriate levels of internal consistency (α = .79). Higher scores correlated with higher functional independence (r = −.605, P < .001), patient (r = .330, P = .010) and carer‐rated patient quality of life (r = .505, P < .001). Multiple regression analyses showed that functional independence made a significant independent contribution in predicting higher levels of meaningful activity (F[7,45] = 6.75, P < .001, R² = .512; β = −.444, P = .001). Confirmatory factor analysis indicated that a revised three‐factor 9‐item model provided good fit for the data (X² = 22.74, P = .54, GFI = 0.93, RMSE = 0.00), with leisure‐time physical activity, social engagement and mentally stimulating activities as the key dimensions.Conclusion: Our study provides support for the construct of meaningful activity in people with mild dementia. Although we find preliminary evidence that the MEAS has adequate psychometric properties, future large scale studies are required to test its validity further and responsiveness to change.

Background: Memory services often see people with early stage dementia who are largely independent and able to participate in community activities but who run the risk of reducing activities and social networks. PRIDE is a self-management intervention designed to promote living well and enhance independence for people with mild dementia. This study aims to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention offered in addition to usual care or with usual care alone. Methods/design: PRIDE is a parallel, two-arm, multicentre, feasibility, randomised controlled trial (RCT). Eligible participants aged 18 or over who have mild dementia (defined as a score of 0.5 or 1 on the Clinical Dementia Rating Scale) who can participate in the intervention and provide informed consent will be randomised (1:1) to treatment with the PRIDE intervention delivered in addition to usual care, or usual care only. Participants will be followed-up at 3 and 6 month’s post-randomisation. There will be an option for a supporter to join each participant. Each supporter will be provided with questionnaires at baseline and follow-ups at 3 to 6 months. Embedded qualitative research with both participants and supporters will explore their perspectives on the intervention investigating a range of themes including acceptability and barriers and facilitators to delivery and participation. The feasibility of conducting a full RCT associated with participant recruitment and follow-up of both conditions, intervention delivery including the recruitment, training, retention of PRIDE trained facilitators, clinical outcomes, intervention and resource use costs and the acceptability of the intervention and study related procedures will be examined. Discussion: This study will assess whether a definitive randomised trial comparing the clinical and cost-effectiveness of whether the PRIDE intervention offered in addition to usual care is feasible in comparison to usual care alone, and if so, will provide data to inform the design and conduct of a future trial. Trial registration: ISRCTN, ISRCTN11288961, registered on 23 October 2019, http://www.isrctn.com/ISRCTN12345678 Protocol V2.1 dated 19 June 2019.

Background: Evidencing well‐planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematized and unchallenged.Objective: To critically evaluate the implementation of PPI activity, including co‐research in a programme of research exploring ways to enhance the independence of people with dementia.Design: Using critical cases, we make visible and explicate theoretical and moral challenges of PPI.Results: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co‐applicant, PPI advisory member and a co‐researcher. Case 2 explores tensions which arose when working with carer co‐researchers during data collection; here the co‐researcher's wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co‐research data coding and interpretation activities undertaken with people with dementia, reporting the theoretical outputs of the activity and questioning whether this was co‐researcher analysis or PPI validation.Conclusion: Patient and public involvement activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public.