Laila Øksnebjerg

People with dementia often need comprehensive support, depending on the stage of the disease, from both family members and healthcare professionals. Caring for a person with dementia can be stressful and impact the caregiver's health and wellbeing. Studies show that family caregivers of people with dementia frequently experience stress, depression, and reduced quality of life. We aimed to assess the association between the psychosocial intervention (DemTool) and caregiver wellbeing and quality of life among family caregivers of people with dementia. DemTool trial was a pragmatic, cluster-controlled trial. The intervention was delivered by primary care dementia coordinators across 30 Danish municipalities from 2020 to 2023, with 15 serving as the intervention group and 15 as treatment as usual. The primary outcome measures were the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) and the European Quality of Life Visual Analog Scale (EQ VAS). Both measures were completed at baseline and follow-up, alongside secondary quality of life outcomes. To estimate group differences in primary and secondary outcomes, we applied analysis of variance (ANOVA) and analysis of covariance (ANCOVA). A total of 245 family caregivers were included in the study (181 in the intervention group and 64 in the treatment-as-usual group). Most participants were females caring for a spouse. Baseline scores for caregiver wellbeing and quality of life were similar across groups. The DemTool intervention was associated with a significant between-group difference in change from baseline in caregiver-related quality of life as measured by the Carer Experience Scale (CES), favoring the intervention. This was evident in the analysis adjusted for baseline scores (p = 0.05) and remained significant when further adjusting for caregiver-related covariates (p = 0.02). No statistically significant between-group differences were observed for the remaining wellbeing and quality-of-life outcomes. No effects of DemTool were found on traditional health-related quality-of-life outcomes. However, a positive association was found between the intervention and the CES, underlining the importance of selecting outcomes that are directly related to the targeted effects of the intervention. The study protocol was registered in the ClinicalTrials.gov system, registration number: NCT07355829.

Assessment of wellbeing is essential in the context of chronic diseases. The Investigating Choice Experiments for the Preferences of Older People-Capability Index (ICECAP-O) is a generic wellbeing measure beyond health. We aimed to assess whether ICECAP-O is a valid measure of capability-wellbeing in people with mild dementia by assessing its discriminative and convergent validity. Further, we assessed its feasibility, internal consistency, and test-retest reliability. Four quality-of-life (QoL) and wellbeing measures were completed by 123 community-dwelling people with mild dementia. Discriminative validity was assessed by the ability of ICECAP-O to distinguish between levels of QoL, wellbeing, and related variables. Convergent validity was assessed by correlations between ICECAP-O index and domain scores, and the 5-level EQ-5D version (EQ-5D-5L), European Quality of Life visual analog scale (EQ VAS), Engagement and Independence in Dementia Questionnaire (EID-Q), and the World Health Organization Wellbeing Index (WHO-5). The feasibility of ICECAP-O in people with mild dementia was evaluated by missing data analysis. Internal consistency was assessed with Cronbach's α, and test-retest reliability was assessed using intraclass correlation coefficient (ICC). ICECAP-O significantly distinguished between different levels of QoL and wellbeing. Further, ICECAP-O was not affected by sociodemographic characteristics. ICECAP-O index scores were strongly correlated with EQ-5D-5L (ρ = 0.61) and EID-Q (ρ = 0.62), and moderately with WHO-5 (ρ = 0.58) and EQ-VAS (ρ = 0.58). Missing data on ICECAP-O dimensions, ranging from 2% to 3%, indicate good feasibility in people with mild dementia. ICECAP-O demonstrated acceptable internal consistency (α = 0.74) and good test-retest reliability (ICC = 0.86). The Danish version of ICECAP-O is a valid and reliable measure of wellbeing in people with mild dementia, and demonstrated acceptable psychometric properties, providing further evidence for its use in this population.

Background: The Carer Experience Scale (CES) measures the caring experience, focusing on caregiver-related quality of life (QoL) rather than health-related QoL. We aimed to validate the Danish language version of CES in family caregivers of people with dementia in Denmark by assessing CES discriminative and convergent validity. Further, we aimed to establish the internal consistency and test-retest reliability of CES. Methods: A baseline questionnaire from the Danish DemTool intervention trial, including CES and five other measures of QoL and wellbeing was completed by 375 family caregivers of people with dementia. Discriminative validity was assessed by the ability of CES to discriminate between different caring contexts and levels of caregiver strain, as determined by Mann–Whitney U and Kruskal–Wallis H tests. Convergent validity was assessed by analyzing correlations using Spearman’s rank correlation coefficients between the CES index and domain scores, and the 5-level EQ-5D version (EQ-5D-5L), European Quality of life visual analog scale (EQ VAS), Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D), World Health Organization Wellbeing Index (WHO-5), and the University of California, Los Angeles Three-Item Loneliness Scale (UCLA 3-item). Internal consistency was assessed using Cronbach’s α and test-retest reliability was assessed using intraclass correlation coefficient (ICC) between two different time points. Results: The CES effectively distinguished between different levels of caregiver strain. Further, the CES was not affected by different caregiver and care recipient characteristics. Supporting convergent validity, the CES index was moderately correlated with NPI-D (ρ=-0.42), WHO-5 (ρ = 0.44), and UCLA 3-item (ρ=-0.40). The CES index was weakly correlated with EQ-5D-5L (ρ = 0.27), and EQ-VAS (ρ = 0.26). The CES showed low internal consistency (α = 0.53), but high test-retest reliability (ICC = 0.76). Conclusion: The Danish version of CES demonstrated discriminative validity and acceptable psychometric properties, providing further evidence for its use in family caregivers of people with dementia.

This rapid review aims to identify the types of technologies used by people with dementia and their supporters during the COVID-19 pandemic, and the issues which influenced technology adoption with...

There is increasing awareness of the benefits of both physical and psychosocial interventions to empower and benefit people with dementia and their caregivers. However, the potential additional benefits of combining physical and psychosocial interventions have only been sparsely explored. The aim of this pilot study was to investigate the acceptability and potential impact of a multicomponent intervention comprising physical exercise, cognitive stimulation therapy (CST), psychoeducation and counselling for people with early-stage dementia. A 15-week multicomponent group-based intervention was offered to people with early-stage dementia in Denmark (N = 44). A mixed-methods design combining interviews, observations, tests of cognitive and physical functioning and an interviewer-assisted questionnaire on quality of life was applied to (1) investigate acceptability of the intervention, including whether people with dementia and their caregivers found the intervention meaningful and (2) to explore and assess changes in participants’ physical and cognitive functioning and quality of life. The study was conducted between June 2018 and August 2019. The pilot study demonstrated that the multicomponent intervention was acceptable for people with early-stage dementia and their caregivers. Test results did not show significant changes in measures of participants’ physical and cognitive functioning or quality of life. However, qualitative data revealed that participants perceived the intervention as meaningful and found that it had a positive influence on their physical and social well-being. In addition, interaction and support from peers and staff members was considered important and rewarding. This multicomponent intervention constitutes a meaningful and beneficial activity for people with early-stage dementia and their caregivers. It provides an opportunity to engage in social interactions with peers and experience professional support. The study also underlines the importance of providing prolonged and sustainable interventions for people with dementia to maintain personal and social benefits.

Background: Enabling people with dementia to ‘live well’ is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based ‘in-the-moment’ measurement.

Background: Assistive technology (AT) is rapidly emerging within dementia care and support. One area of AT application is support of people with dementia in compensating for cognitive symptoms and thereby promoting their self-management. There is, however, little evidence for the applicability, usability, and effectiveness of AT for people with dementia, and there is a need to identify factors that can promote adoption. Objective: This study aimed to (1) evaluate the applicability and usability of an app, tailor-made for people with dementia; (2) explore factors affecting adoption; (3) explore the possible influence of caregiver involvement; and (4) contribute to process evaluation of the intervention. Methods: The ReACT (Rehabilitation in Alzheimer's disease using Cognitive support Technology) app was designed as a holistic solution to support memory and structure in daily living. Persons with dementia had access to a personal user account, and family caregivers were given a parallel login. Written and Web-based materials were provided to support self-applied implementation. A mixed methods design was applied to explore adoption and use patterns, including background and disease-related data, qualitative data from a survey, and log data. Adoption was defined as the use of the app over a period of ≥90 days. Results: Data from 112 participants and 98 caregivers were included. Shorter time from diagnosis (U=595; P=.046; r=0.19) and caregiver activating the app (P=.02) had a significant impact on the participant adoption status. Logistic regression analysis showed that if caregivers had activated the app, the participant was five times more likely to become an adopter (odds ratio 5.1, 95% CI 1.29-19.99; P=.02). However, the overall predictive power was low, and there was a wide variation in background and disease-related characteristics among adopters. The level of experience and skills in tablet use were not significantly different between adopters and nonadopters. Adopters generally rated the app high on usefulness, satisfaction, and ease of use (rated on the USEdem questionnaire). Their scores were significantly higher compared with nonadopters (U=5.5; P=.02; r=0.64). Analysis of use patterns showed that all functionalities of the app were used among adopters. Conclusions: For participants who became adopters, the ReACT app and the methods for self-applied implementation were applicable. However, the results were also in accordance with the well-known challenges of nonadoption and nonadherence to digital health interventions. The study provided insight into the importance of timely introduction and caregiver support for adoption of AT among people with dementia. It also underlined the high complexity of personal and contextual factors that influence adoption. These complex factors need to be considered when designing and implementing AT for people with dementia.

Objectives: It is essential to develop interventions that meet individual needs for coping and self-management of people with dementia. This study explored the feasibility and applicability of an intervention merging methods of cognitive rehabilitation and self-management groups for people with early stage dementia. The potential of this intervention to promote adoption of assistive technology was also explored. Method: People with early stage Alzheimer’s disease (N = 19) participated in the programme comprising both individual and group sessions. Caregivers were involved in the individual session and a separate group meeting. The intervention both addressed individual goals and more general self-management approaches. In addition, both participants and caregivers were introduced to the ReACT app, a holistic solution tailormade to meet self-management needs of people with early stage dementia. Results: There was significant improvement in the participants’ attainment of individual goals and satisfaction with goal attainment from pre- to post-intervention. Participants and caregivers generally reported a positive attitude towards the intervention, attendance rate was high, and all participants completed the intervention. Qualitative results also indicated that the intervention promoted awareness, acceptance and coping among participants. The specific benefits of using the ReACT app for self-management were also emphasised. Forty-two percent of the participants adopted the app and continued using it after completing the intervention. Conclusion: Results from this pilot study indicated that the intervention is both feasible and applicable and can be an effective method to promote coping and adoption of assistive technology among people with early stage dementia.