mHealth Apps for Dementia, Alzheimer Disease, and Other Neurocognitive Disorders: Systematic Search and Environmental Scan.

BACKGROUND: Lifestyle behaviors including exercise, sleep, diet, stress, mental stimulation, and social interaction significantly impact the likelihood of developing dementia. Mobile health (mHealth) apps have been valuable tools in addressing these lifestyle behaviors for general health and well-being, and there is growing recognition of their potential use for brain health and dementia prevention. Effective apps must be evidence-based and safeguard user data, addressing gaps in the current state of dementia-related mHealth apps. OBJECTIVE: This study aims to describe the scope of available apps for dementia prevention and risk factors, highlighting gaps and suggesting a path forward for future development. METHODS: A systematic search of mobile app stores, peer-reviewed literature, dementia and Alzheimer association websites, and browser searches was conducted from October 19, 2022, to November 2, 2022. A total of 1044 mHealth apps were retrieved. After screening, 152 apps met the inclusion criteria and were coded by paired, independent reviewers using an extraction framework. The framework was adapted from the Silberg scale, other scoping reviews of mHealth apps for similar populations, and background research on modifiable dementia risk factors. Coded elements included evidence-based and expert credibility, app features, lifestyle elements of focus, and privacy and security. RESULTS: Of the 152 apps that met the final selection criteria, 88 (57.9%) addressed modifiable lifestyle behaviors associated with reducing dementia risk. However, many of these apps (59/152, 38.8%) only addressed one lifestyle behavior, with mental stimulation being the most frequently addressed. More than half (84/152, 55.2%) scored 2 points out of 9 on the Silberg scale, with a mean score of 2.4 (SD 1.0) points. Most of the 152 apps did not disclose essential information: 120 (78.9%) did not disclose expert consultation, 125 (82.2%) did not disclose evidence-based information, 146 (96.1%) did not disclose author credentials, and 134 (88.2%) did not disclose their information sources. In addition, 105 (69.2%) apps did not disclose adherence to data privacy and security practices. CONCLUSIONS: There is an opportunity for mHealth apps to support individuals in engaging in behaviors linked to reducing dementia risk. While there is a market for these products, there is a lack of dementia-related apps focused on multiple lifestyle behaviors. Gaps in the rigor of app development regarding evidence base, credibility, and adherence to data privacy and security standards must be addressed. Following established and validated guidelines will be necessary for dementia-related apps to be effective and advance successfully.

Denial of Desire for Death in Dementia: Why Is Dementia Excluded from Australian Voluntary Assisted Dying Legislation?

Euthanasia in the form of Voluntary Assisted Dying (VAD) is legal in all Australian States, but current eligibility criteria preclude access to people with dementia. This article discusses Australian VAD eligibility criteria that are problematic for people with dementia: (1) time until death within 12 months, (2) decision-making capacity for VAD, and (3) determination of intolerable suffering. Legislation in the Netherlands allows VAD for people with dementia. The challenges and philosophical issues raised by such cases are explored. It is proposed that the unique nature of dementia in its various forms warrants the formulation of dementia-specific VAD eligibility criteria. A case could be brought to challenge the denial of access to VAD of people with dementia on the basis that their exclusion is discriminatory and an abuse of human rights. If such a challenge was successful, it could form a common law precedent to allow people with dementia access to VAD.

Person-centredness in dementia care: an integrative review of theoretical approaches.

OBJECTIVES: This review identifies and examines theoretical approaches (components and objectives) to person-centred dementia care in order to obtain a better understanding of what is meant by the concept of person-centred dementia care. DESIGN: Following the approach of Whittemore and Knafl, an integrative literature review was conducted to answer the following questions: (1) Which theoretical approaches to person-centred dementia care have been published? (2) What are the components of the theoretical approaches to person-centred dementia care thus identified, and which objectives can be identified? DATA SOURCES: MEDLINE (via PubMed), CINAHL (via EBSCO) and PsycINFO (via EBSCO) were searched through to 26 April 2021. ELIGIBILITY CRITERIA: We included any kind of published literature that describes theoretical approaches to person-centred dementia care and that was written in German or English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data. Data were pooled using a data extraction form developed by the Joanna Briggs Institute. A qualitative content analysis was conducted. RESULTS: The analysis revealed heterogeneous perspectives within the identified approaches to person-centred dementia care. Statements pertaining to the components and objectives could be assigned to three different subcategories (microlevel, macrolevel and application level). This analysis enabled an enhanced understanding of how person-centred dementia care is currently described and whether and how the theoretical approaches differ in terms of their orientations and their focus on the individual and/or on sociality, which allows conclusions regarding the underlying conceptual idea of personhood. CONCLUSIONS: There is a clear challenge for future research to overcome the dominance of the focus on the individual and to consider aspects of sociality to be at least equally important. This is needed in order to understand dementia as a multifaceted phenomenon that demands a differentiated consideration of theoretical notions of how to understand personhood in this context.

Technology Usability for People Living With Dementia: Concept Analysis.

BACKGROUND: Usability is a key indicator of the quality of technology products. In tandem with technological advancements, potential use by individuals with dementia is increasing. However, defining the usability of technology for individuals with dementia remains an ongoing challenge. The diverse and progressive nature of dementia adds complexity to the creation of universal usability criteria, highlighting the need for focused deliberations. Technological interventions offer potential benefits for people living with dementia and caregivers. Amid COVID-19, technology's role in health care access is growing, especially among older adults. Enabling the diverse population of people living with dementia to enjoy the benefits of technologies requires particular attention to their needs, desires, capabilities, and vulnerabilities to potential harm from technologies. Successful technological interventions for dementia require meticulous consideration of technology usability. OBJECTIVE: This concept analysis aims to examine the usability of technology in the context of individuals living with dementia to establish a clear definition for usability within this specific demographic. METHODS: The framework by Walker and Avant was used to guide this concept analysis. We conducted a literature review spanning 1984 to 2024, exploring technology usability for people with dementia through the PubMed, Web of Science, and Google Scholar databases using the keywords "technology usability" and "dementia." We also incorporated clinical definitions and integrated interview data from 29 dyads comprising individuals with mild Alzheimer dementia and their respective care partners, resulting in a total of 58 older adults. This approach aimed to offer a more comprehensive portrayal of the usability needs of individuals living with dementia, emphasizing practical application. RESULTS: The evidence from the literature review unveiled that usability encompasses attributes such as acceptable learnability, efficiency, and satisfaction. The clinical perspective on dementia stages, subtypes, and symptoms underscores the importance of tailored technology usability assessment. Feedback from 29 dyads also emphasized the value of simplicity, clear navigation, age-sensitive design, personalized features, and audio support. Thus, design should prioritize personalized assistance for individuals living with dementia, moving away from standardized technological approaches. Synthesized from various sources, the defined usability attributes for individuals living with dementia not only encompass the general usability properties of effectiveness, efficiency, and satisfaction but also include other key factors: adaptability, personalization, intuitiveness, and simplicity, to ensure that technology is supportive and yields tangible benefits for this demographic. CONCLUSIONS: Usability is crucial for people living with dementia when designing technological interventions. It necessitates an understanding of user characteristics, dementia stages, symptoms, needs, and tasks, as well as consideration of varied physical requirements, potential sensory loss, and age-related changes. Disease progression requires adapting to evolving symptoms. Recommendations include versatile, multifunctional technology designs; accommodating diverse needs; and adjusting software functionalities for personalization. Product feature classification can be flexible based on user conditions.

Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study.

BACKGROUND: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. OBJECTIVE: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. METHODS: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. RESULTS: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]). CONCLUSIONS: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.

Agreement between Clinical Frailty Scale-scores based on information from patient interviews and Clinical Frailty Scale-scores based on information from medical records - a cross sectional study.

INTRODUCTION: Frailty is an age-related condition with increased risk for adverse health outcomes. Assessing frailty according to the Clinical Frailty Scale (CFS) based on data from medical records is useful for previously unassessed patients, but the validity of such scores in exclusively geriatric populations and in patients with dementia is relatively unknown. METHODS: Patients admitted for the first time to one of two geriatric wards at Örebro University hospital between January 1st - December 31st, 2021, were included in this study if they had been appointed a CFS-score by anamnestic interview (CFSI) at admission. CFS scores based on medical records (CFSR) were appointed by a single medical student, who was blinded to the CFSI score. Score-agreement was evaluated with quadratic weighted Cohen's kappa (κ). RESULTS: In total, 145 patients between the age of 55-101 were included in the study. The CFSR and CFSI scores agreed perfectly in 102 cases (0.7, 95% CI 0.65-0.77). There was no significant difference regarding age, sex, comorbidity, or number of patients diagnosed with dementia between the patients with complete agreement and the patients whose scores did not agree. Agreement between the scores was substantial, κ = 0.66, 95% CI 0.53-0.80. CONCLUSIONS: CFS scores based on information from medical records can be generated with substantial agreement to CFS scores based on in-person anamnestic interviews. A dementia diagnosis does not influence the agreement between the scores. Therefore, these scores are a useful tool for assessing frailty in geriatric patients who previously lack a frailty assessment, both in clinical practice and future research. The results support previous findings, but larger studies are warranted.

Psychometric of the Persian version of Quality of Life in Late-Stage Dementia (QUALID) in the elderly with Alzheimer's disease.

BACKGROUND: Improving the quality of life (QoL) is a significant healthcare priority, and it is an important health outcome for elderly individuals with Alzheimer's disease. Quality of Life in Late-Stage Dementia (QUALID) is a specific scale used to measure the QoL in elderly individuals with Alzheimer's. So far, limited quantitative research has been conducted on the psychometric properties of this scale. AIMS: This study was conducted to translate the QUALID Scale into Persian and evaluate its psychometric properties among family and professional caregivers of elderly individuals with Alzheimer's disease in Tehran. METHODS: A cross-sectional methodological study was conducted among family and professional caregivers of elderly individuals with Alzheimer's in Tehran, Iran in 2022. The questionnaire was translated into Persian using the forward-backward method. Face and content validity were assessed. Additionally, construct validity was examined using exploratory factor analysis (EFA) with Equamax rotation (n=210) and confirmatory factor analysis (CFA) (n=155). Cronbach's alpha and interclass correlation coefficient (ICC) were estimated to determine reliability. RESULTS: A total of 365 caregivers with a mean age of 14.18±42.60 years participated in this study. In the face and content validity phase, all 11 items were retained. To determine the construct validity, two factors were extracted in the EFA phase, including behavioural signs of discomfort and behavioural signs of social interaction. The findings of the CFA also indicated that all goodness of fit indices supported the final model. The Cronbach's alpha was excellent for both factors (0.814), and the ICC was calculated as 0.98. CONCLUSION: Based on the findings of this study, it can be concluded that the Persian version of the QUALID Scale has sufficient validity and reliability for measuring the QoL in elderly Iranian individuals with Alzheimer's.

Implementation and evaluation of a community-based mindful walking randomized controlled trial to sustain cognitive health in older African Americans at risk for dementia.

BACKGROUND: With an increasing proportion of older adults and the associated risk of Alzheimer's Disease and Related Dementias (ADRD) around the globe, there is an urgent need to engage in ADRD risk reduction efforts. African American (AA) older adults in the U.S. are disproportionally impacted by ADRD compared to other races and ethnicities. Mindful walking integrates two potentially protective factors of ADRD by elevating mindfulness and physical activity (i.e., walking), resulting in a synergistic behavioral strategy that is feasible and safe for older adults. However, the efficacy of applying this intervention for cognitive health outcomes has not been evaluated using experimental designs. METHODS: This paper documents the goal and protocol of a community-based, mindful walking randomized controlled trial to examine the short- and longer-term efficacy on cognitive and other health-related outcomes in ADRD at-risk AA older adults. The study outcomes include various brain health determinants, including cognitive function, quality of life, psychological well-being, physical activity, mindfulness, sleep, and overall health status. In addition, the estimated costs of program implementation are also collected throughout the study period. This study will recruit 114 older adults (ages 60+ years) with elevated ADRD risk from the Midlands region of South Carolina. Older adults are randomly assigned to participate in 24 sessions of outdoor mindful walking over three months or a delayed mindful walking group (n=57 in each group). Participants in both groups follow identical measurement protocols at baseline, after 12 weeks, after 18 weeks, and after 24 weeks from baseline. The outcome measures are administered in the lab and in everyday settings. Costs per participant are calculated using micro-costing methods. The eliciting participant costs for mindful walking engagement with expected results are reported using the payer and the societal perspectives. DISCUSSION: This study will generate evidence regarding the efficacy of mindful walking on sustaining cognitive health in vulnerable older adults. The results can inform future large-scale effectiveness trials to support our study findings. If successful, this mindful walking program can be scaled up as a low-cost and viable lifestyle strategy to promote healthy cognitive aging in diverse older adult populations, including those at greatest risk. TRIAL REGISTRATION: ClinicalTrials.gov number NCT06085196 (retrospectively registered on 10/08/2023).

Dementia Subtypes Defined Through Neuropsychiatric Symptom-Associated Brain Connectivity Patterns.

Importance: Understanding the heterogeneity of neuropsychiatric symptoms (NPSs) and associated brain abnormalities is essential for effective management and treatment of dementia. Objective: To identify dementia subtypes with distinct functional connectivity associated with neuropsychiatric subsyndromes. Design, Setting, and Participants: Using data from the Open Access Series of Imaging Studies-3 (OASIS-3; recruitment began in 2005) and Alzheimer Disease Neuroimaging Initiative (ADNI; recruitment began in 2004) databases, this cross-sectional study analyzed resting-state functional magnetic resonance imaging (fMRI) scans, clinical assessments, and neuropsychological measures of participants aged 42 to 95 years. The fMRI data were processed from July 2022 to February 2024, with secondary analysis conducted from August 2022 to March 2024. Participants without medical conditions or medical contraindications for MRI were recruited. Main Outcomes and Measures: A multivariate sparse canonical correlation analysis was conducted to identify functional connectivity-informed NPS subsyndromes, including behavioral and anxiety subsyndromes. Subsequently, a clustering analysis was performed on obtained latent connectivity profiles to reveal neurophysiological subtypes, and differences in abnormal connectivity and phenotypic profiles between subtypes were examined. Results: Among 1098 participants in OASIS-3, 177 individuals who had fMRI and at least 1 NPS at baseline were included (78 female [44.1%]; median [IQR] age, 72 [67-78] years) as a discovery dataset. There were 2 neuropsychiatric subsyndromes identified: behavioral (r = 0.22; P = .002; P for permutation = .007) and anxiety (r = 0.19; P = .01; P for permutation = .006) subsyndromes from connectivity NPS-associated latent features. The behavioral subsyndrome was characterized by connections predominantly involving the default mode (within-network contribution by summed correlation coefficients = 54) and somatomotor (within-network contribution = 58) networks and NPSs involving nighttime behavior disturbance (R = -0.29; P < .001), agitation (R = -0.28; P = .001), and apathy (R = -0.23; P = .007). The anxiety subsyndrome mainly consisted of connections involving the visual network (within-network contribution = 53) and anxiety-related NPSs (R = 0.36; P < .001). By clustering individuals along these 2 subsyndrome-associated connectivity latent features, 3 subtypes were found (subtype 1: 45 participants; subtype 2: 43 participants; subtype 3: 66 participants). Patients with dementia of subtype 3 exhibited similar brain connectivity and cognitive behavior patterns to those of healthy individuals. However, patients with dementia of subtypes 1 and 2 had different dysfunctional connectivity profiles involving the frontoparietal control network (FPC) and somatomotor network (the difference by summed z values was 230 within the SMN and 173 between the SMN and FPC for subtype 1 and 473 between the SMN and visual network for subtype 2) compared with those of healthy individuals. These dysfunctional connectivity patterns were associated with differences in baseline dementia severity (eg, the median [IQR] of the total score of NPSs was 2 [2-7] for subtype 3 vs 6 [3-8] for subtype 1; P = .04 and 5.5 [3-11] for subtype 2; P = .03) and longitudinal progression of cognitive impairment and behavioral dysfunction (eg, the overall interaction association between time and subtypes to orientation was F = 4.88; P = .008; using the time × subtype 3 interaction item as the reference level: ß = 0.05; t = 2.6 for time × subtype 2; P = .01). These findings were further validated using a replication dataset of 193 participants (127 female [65.8%]; median [IQR] age, 74 [69-77] years) consisting of 154 newly released participants from OASIS-3 and 39 participants from ADNI. Conclusions and Relevance: These findings may provide a novel framework to disentangle the neuropsychiatric and brain functional heterogeneity of dementia, offering a promising avenue to improve clinical management and facilitate the timely development of targeted interventions for patients with dementia.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

Guideline summary: assessment, diagnosis, care and support for people with dementia and their carers [Scottish Intercollegiate Guidelines Network SIGN Guideline 168].

The Scottish Intercollegiate Guidelines Network (SIGN) have recently published their guideline SIGN168 on 'Assessment, Diagnosis, Care, and Support for People with Dementia and their Carers'. The guideline makes evidence-based recommendations for best practice in the assessment, care and support of adults living with dementia. Topics featured in this guideline are limited to those prioritised by stakeholders, especially people with lived and living experience, and those not well covered under pre-existing guidance. We summarise the guideline recommendations related to identification and diagnosis of dementia, investigative procedures, postdiagnostic support living with dementia, including non-pharmacological approaches for distressed behaviours, using technology to support people with dementia, grief and dementia and changing needs of people with dementia. The guideline content is summarised as officially published, with additional commentary in the final section.

Effects of the discontinuation of antihypertensive treatment on neuropsychiatric symptoms and quality of life in nursing home residents with dementia (DANTON): a multicentre, open-label, blinded-outcome, randomised controlled trial.

BACKGROUND: Based on observational studies and randomised controlled trials (RCTs), the benefit-harm balance of antihypertensive treatment in older adults with dementia is unclear. OBJECTIVE: To assess whether discontinuing antihypertensive treatment reduces neuropsychiatric symptoms (NPSs) and maintains quality of life (QoL) in nursing home residents with dementia. DESIGN: Open-label, blinded-outcome RCT. Randomisation 1:1, stratified by nursing home organisation and baseline NPS. Trial registration: NL7365. SUBJECTS: Dutch long-term care residents with moderate-to-severe dementia and systolic blood pressure (SBP) ≤160 mmHg during antihypertensive treatment. Exclusion criteria included heart failure NYHA-class-III/IV, recent cardiovascular events/procedures or life expectancy <4 months (planned sample size n = 492). MEASUREMENTS: Co-primary outcomes NPS (Neuropsychiatric Inventory-Nursing Home [NPI-NH]) and QoL (Qualidem) at 16 weeks. RESULTS: From 9 November 2018 to 4 May 2021, 205 participants (median age 85.8 [IQR 79.6-89.5] years; 79.5% female; median SBP 134 [IQR 123-146] mmHg) were randomised to either antihypertensive treatment discontinuation (n = 101) or usual care (n = 104). Safety concerns, combined with lacking benefits, prompted the data safety and monitoring board to advice a premature cessation of randomisation. At 16-week follow-up, no significant differences were found between groups for NPI-NH (adjusted mean difference 1.6 [95% CI -2.3 to 5.6]; P = 0.42) or Qualidem (adjusted mean difference - 2.5 [95% CI -6.0 to 1.0]; P = 0.15). Serious adverse events (SAEs) occurred in 36% (discontinuation) and 24% (usual care) of the participants (adjusted hazard ratio 1.65 [95% CI 0.98-2.79]). All 32-week outcomes favoured usual care. CONCLUSION: Halfway through this study, a non-significant increased SAE risk associated with discontinuing antihypertensive treatment was observed, and an associated interim analysis showed that significant worthwhile health gain for discontinuation of antihypertensive treatment was unlikely. This unbeneficial benefit-harm balance shows that discontinuation of antihypertensive treatment in this context does not appear to be either safe or beneficial enough to be recommended in older adults with dementia.

Impact of care-recipient relationship type on quality of life in caregivers of older adults with dementia over time.

BACKGROUND: Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers. OBJECTIVE: To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period. METHODS: This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, "other" caregiver and "multiple" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers' QoL outcomes across types of relationship over time. RESULTS: About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers' socio-demographics, "other" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD's dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively). CONCLUSIONS: The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

Factors associated with a history of critical wandering among Medic-Alert subscribers.

BACKGROUND: Critical wandering occurs when an individual living with dementia leaves a location and is unaware of place or time. Critical wandering incidents are expected to increase with the growing prevalence of persons living with dementia worldwide. We investigated the association between demographic, psychopathological, and environmental factors and a history of critical wandering among Medic-Alert subscribers, both with and without dementia. METHODS: Our retrospective study included data of 25,785 Canadian Medic-Alert subscribers who were aged 40 years or older. We used multivariable logistic regression analysis to examine the associations between a history of critical wandering and dementia status as psychopathological independent variable, controlled by demographic (age, ethnic background, sex at birth, Canadian languages spoken) and environmental (living arrangement, population density) factors. RESULTS: The overall study sample comprised of mainly older adults (77.4%). Medic-Alert subscribers who were older, male sex at birth, living with dementia, of a minority ethnic group and who did not have proficiency in an official Canadian language had a higher likelihood of a history of critical wandering. Residing in an urban environment, in an institution or with a family member, were environmental factors associated with a higher likelihood of a history of critical wandering. CONCLUSIONS: People living with dementia experience a higher likelihood of a history of critical wandering compared to those without dementia. Medic-Alert and similar organizations can develop algorithms based on the associated factors that can be used to flag risks of critical wandering. This can inform preventative strategies at the individual and community levels.

Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers.

BACKGROUND: People with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the 'Thinking Now About Later' tool, with open-ended questions about 'what matters most', and (2) a digital version of the 'Life Wishes Cards', a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers. METHODS: During an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data. RESULTS: Of 52 participants, 21 people had dementia and 31 were family caregivers. The 'Thinking Now About Later' tool and 'Life Wishes Cards' were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online. CONCLUSIONS: Although less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.

Detecting agitation and aggression in persons living with dementia: a systematic review of diagnostic accuracy.

OBJECTIVE: 40-60% of persons living with dementia (PLWD) experience agitation and/or aggression symptoms. There is a need to understand the best method to detect agitation and/or aggression in PLWD. We aimed to identify agitation and/or aggression tools that are validated against a reference standard within the context of PLWD. METHODS: Our study was registered on PROSPERO (CRD42020156708). We searched MEDLINE, Embase, and PsycINFO up to April 22, 2024. There were no language or date restrictions. Studies were included if they used any tools or questionnaires for detecting either agitation or aggression compared to a reference standard among PLWD, or any studies that compared two or more agitation and/or aggression tools in the population. All screening and data extraction were done in duplicates. Study quality was assessed using the Quality Assessment of Diagnostic Accuracy Studies 2 (QUADAS-2) tool. Data extraction was completed in duplicates by two independent authors. We extracted demographic information, prevalence of agitation and/or aggression, and diagnostic accuracy measures. We also reported studies comparing the correlation between two or more agitation and/or aggression tools. RESULTS: 6961 articles were screened across databases. Six articles reporting diagnostic accuracy measures compared to a reference standard and 30 articles reporting correlation measurements between tools were included. The agitation domain of the Spanish NPI demonstrated the highest sensitivity (100%) against the agitation subsection of the Spanish CAMDEX. Single-study evidence was found for the diagnostic accuracy of commonly used agitation scales (BEHAVE-AD, NPI and CMAI). CONCLUSIONS: The agitation domain of the Spanish NPI, the NBRS, and the PAS demonstrated high sensitivities, and may be reasonable for clinical implementation. However, a limitation to this finding is that despite an extensive search, few studies with diagnostic accuracy measurements were identified. Ultimately, more research is needed to understand the diagnostic accuracy of agitation and/or aggression detection tools among PLWD.

The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study.

BACKGROUND: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. OBJECTIVE: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for "Nuestros Días" (Spanish for "our days"), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. METHODS: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. RESULTS: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. CONCLUSIONS: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55216.

Providing and receiving support through a tailor-made mobile app: a qualitative study on experience of professionals and family caregivers to persons with dementia.

BACKGROUND: The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. METHODS: A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. RESULTS: The social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support. CONCLUSIONS: This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.