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Background: For the rising number of people living with dementia, cost-effective community-based interventions to support psychosocial care are needed. The FindMyApps program helps people with dementia and their caregivers learn to use tablet computers and find user-friendly apps that facilitate self-management and engagement in meaningful activities. This definitive trial builds on previous feasibility pilot trials of FindMyApps and further evaluates cost-effectiveness.
Method: This is a protocol for a non-blinded randomized controlled trial (RCT) with two arms (intervention and usual care). 150 dyads (person with dementia and their carer) will be recruited. Participants must be resident in the community, with a diagnosis of Mild Cognitive Impairment or mild dementia (Mini Mental-State Examination 17-26, or Global Deterioration Scale 3-4. Dyads will be randomly assigned in equal proportions to receive either the FindMyApps intervention (experimental arm) or usual care (control arm). Primary outcomes measured at 3 months will be: patient self-management and social participation; caregiver sense of competence. Data will be collected through questionnaires filled in by the researcher (patient outcomes) or participants themselves (carer outcomes). In addition to a main effect analysis, a cost-effectiveness analysis will take place. In line with Medical Research Council (MRC) guidance for the evaluation of complex interventions, a process analysis will be undertaken, to identify factors that may influence trial outcomes. Semi-structured interviews and remotely collected data regarding use of the FindMyApps app will support the process analysis.
Result: Results of this study are expected in 2022. The study will be adequately powered to detect at least a moderate effect size of the intervention with respect to the primary outcomes.
Conclusion: This study will investigate the effectiveness and cost-effectiveness of the FindMyApps intervention. The results of the study will provide strong evidence to support or oppose scaling up implementation of the intervention. This is also an example of how the MRC framework for the evaluation of complex interventions can be implemented in practice. In a field which is often criticized for a lack of high quality evidence, randomized controlled trials should be applied more frequently designed for the robust and transparent evaluation of digital tools and technologies.
Since its development, the Qualidem has had items that were considered unsuited for people with very severe dementia. This study attempted to investigate the applicability of all Qualidem items in people with all stages of dementia severity.
Four data sets that contained Qualidem observations on people with dementia were combined. Dementia severity was categorized based on the Global Deterioration Scale (GDS), with a dichotomization of very severe dementia (GDS 7) and others (GDS 1–6). Unidimensional latent-trait models (Mokken scaling) were estimated to fit the Qualidem responses in the overall sample and the dichotomized groups. Scalability was assessed using coefficients of homogeneity (Loevinger's H), while reliability was assessed with Cronbach's α and ρ.
Combining the four databases resulted in 4,354 Qualidem measurements. The scalability of all scales was considered acceptable in the overall sample, as well is in the subgroups (all H > 0.3). Additionally, the reliability was good–excellent in the scales: “positive affect,” “positive self-image,” “care relationship,” and “negative affect.” Reliability was questionable–acceptable for “feeling at home,” “social relations,” “social isolation,” and “restless tense behavior.” Reliability was poor for “having something to do.”
Statistical considerations allow using all Qualidem items in all dementia stages. Future research should determine balance of statistical- versus conceptual-based reasoning in this academic debate.
In order to conceptually define quality of life (QOL) in dementia, the literature on QOL in the elderly population, in chronic disease and in dementia was studied. Dementia is a progressive, age-related, chronic condition and to avoid omissions within the dementia-specific concept of QOL, a broad orientation was the preferred approach in this literature study. Adaptation is a major outcome in studies investigating interventions aimed at improving QOL in chronic conditions, but to date, it has not been used in the definition of QOL. It is argued that adaptation is an important indication of QOL in people with chronic diseases and therefore also in dementia. Some crucial issues in assessing dementia-related QOL that are relevant to clarify the continuing debate on whether QOL, particularly in dementia, can be measured at all, are discussed. Then the following conceptual definition is offered: dementia-specific QOL is the multidimensional evaluation of the person–environment system of the individual, in terms of adaptation to the perceived consequences of the dementia.
Objective: This study tests the hypothesis that integrated family support, in which patients and caregivers are both supported by one professional staff, is more effective in influencing behavior problems and mood of the dementia patient than nonintegrated support, such as psychogeriatric day care only. Design: A quasi-experimental pretest-posttest control group design with matched groups was applied. Setting: Psychogeriatric day-care centers of four community centers and three nursing homes. Participants: Fifty-six dementia patients living at home and their caregivers. Intervention: The patients in the experimental group (n = 33) participated together with their caregivers in an integrated family support program, whereas the patients in the control group (n = 23) received psychogeriatric day care only. Measurements: Behavior problems and mood were observed using standardized behavior observation scales. Results: After 7 months the experimental support program, compared to the regular psychogeriatric day care, showed a large positive effect on the total number of behavior problems (effect size .75), and also specifically on the degree of inactivity (effect size .66) and nonsocial behavior (effect size .61). No effect on mood was found. Conclusions: In influencing the total amount of behavior problems, as well as the degree of inactivity and nonsocial behavior, the integrated family support program proved to be more effective than psychogeriatric day care. Because behavior problems are an important determinant for admission of persons with dementia into a nursing home, integrated family support may contribute to the delay of institutionalization.
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