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A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study.

ABSTRACT: BACKGROUND:Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. OBJECTIVE:This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. METHODS:The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. RESULTS:There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. CONCLUSIONS:The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/13280.

SUBMITTER: Guisado-Fernandez E

PROVIDER: S-EPMC7413274 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study.

Guisado-Fernandez Estefania E Blake Catherine C Mackey Laura L Silva Paula Alexandra PA Power Dermot D O'Shea Diarmuid D Caulfield Brian B

JMIR aging 20200723 2

<h4>Background</h4>Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus fa ...[more]

PMID: 32706650

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Project description:ObjectiveFew instruments evaluate family caregiver perceptions of challenges caring for persons with dementia and improvement or worsening in these areas. To address this measurement gap, we examine psychometric properties of a Spanish version of the 13-item Perceived Change Index (PCI-S), originally validated with English-speaking caregivers.MethodsCross-sectional study with 94 caregivers of persons with mild to moderate dementia in Chile. Interviews included caregiver demographics, burden, health perception, distress with behaviours, dementia severity, behavioural symptoms and functionality.ResultsCaregiver mean age was 55.9 (SD ± 14.14) years and mean years caregiving was 3 (SD ± 2.60). The scale had strong internal consistency (Cronbach α = 0.94), and inter-observer consistency (CCI = 0.99; 95% CI = 0.95-0.99). Two factors were identified: Management skills (α = 0.89), and somatic well-being and affects (α = 0.92), explaining 63% of scale variance. Significant associations supporting convergent validity were observed for PCI-S and subscales with caregiver burden (p < 0.01), health perceptions (p < 0.01), depressive symptoms (p < 0.01) and distress with behaviours (p < 0.01); and in persons with dementia, functionality (p < 0.05), dementia severity (p < 0.05) and behavioural symptoms (p < 0.01) in expected directions. In logistic regression models, perceived worsening (PCI-S and subscale scores) was associated with more behavioural symptoms (OR = 1.07; 95% CI = 1.03-1.15) and caregiver burden (OR = 1.48; 95% CI = 1.18-1.86); whereas perceived improvement was associated with higher physical functioning (OR = 0.95; 95% CI = 0.91-0.99) in persons with dementia. PCI-S scores were not associated with socio-demographic characteristics reflecting divergent validity.ConclusionsSpanish version of the 13-item Perceived Change Index and its two-factor solution is a valid and reliable measure with clinical utility to detect improvement or worsening in caregivers concerning daily care challenges. Copyright © 2017 John Wiley & Sons, Ltd.

Project description:BackgroundThere are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving.ObjectiveThis study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after.MethodsWe codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis).ResultsFrom 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support.ConclusionsCaregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders-academics, policy makers, and practitioners-to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda.

Project description:BackgroundSmart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown.ObjectiveThe aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers' adoption of s-Health technologies for home care.MethodsFollowing the Arksey and O'Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes.ResultsEmerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain.ConclusionsAlthough s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.

Project description:BackgroundEnabling 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.MethodsThree 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.FindingsSix 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.ConclusionAn 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.

Dataset Information

A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study.

Publications

A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study.

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