scholarly journals Testing a Single-Case Experimental Design to Study Dynamic Light Exposure in People with Dementia Living at Home

2021 ◽  
Vol 11 (21) ◽  
pp. 10221
Author(s):  
Ellen van Lieshout-van Dal ◽  
Liselore Snaphaan ◽  
Samantha Bouwmeester ◽  
Yvonne de Kort ◽  
Inge Bongers
Keyword(s):  
Experimental Design ◽  
Light Exposure ◽  
Single Case ◽  
Informal Caregivers ◽  
Real Life ◽  
Well Being ◽  
Lessons Learned ◽  
Lighting System ◽  
People With Dementia ◽  
At Home

Most people with dementia live at home supported by informal caregivers, but disturbed sleep patterns may induce a heavy burden of care. The beneficial effects of bright light on their sleep, health, and well-being have been demonstrated in clinical settings, but not in a home situation. We evaluated a dynamic lighting system in a real-life longitudinal single-case experimental design (SCED) with people with dementia living at home. Eleven people with dementia and their informal caregivers were included in this study with four 4-week periods of alternating exposure and nonexposure in an introduction–withdrawal setup (ABAB). Objective light exposure data were collected and analyzed. The used study design seems applicable for this population and suitable for home use. Participant dropout did occur, but was due to health conditions rather than participant burden. The lighting system led to more light in the homes of the participants, as well as to higher actual individual light exposures, although the latter increased only moderately and not consistently across all participants, seasons, and times of day. The participants appreciated the lighting system even after 6 months. We reflect on individual differences, seasonal and daypart influences, and differential light effects. Recommendations and lessons learned are discussed.

scholarly journals Biodynamic Lighting and Functional Disability: A Single-Case Experimental Design in Three Community Dwelling People with Dementia

2021 ◽  
Vol 11 (20) ◽  
pp. 9433
Author(s):  
Noortje Aarden-van Delft ◽  
Manon Peeters ◽  
Liselore Snaphaan
Keyword(s):  
Experimental Design ◽  
Functional Activity ◽  
Functional Disability ◽  
Single Case ◽  
Community Dwelling ◽  
Term Care ◽  
Functional Activities ◽  
People With Dementia ◽  
Over Time ◽  
At Home

Functional disability in people with dementia is associated with placement in long-term care facilities, feelings of depression and caregiver burden. As there is currently no cure for dementia, more attention is needed for personalised support for people living with dementia at home. A promising non-pharmacological innovation for reducing problems in functional activities is biodynamic lighting. This type of artificial lighting resembles a normal daylight curve, including changes in light intensity and colour during the day. The aim of this pilot study with three participants is to explore the possible influence of biodynamic lighting on functional activities over time on people with dementia living at home. The study used an A-B-A-B withdrawal single-case experimental design. In the intervention phases, the participants were exposed to biodynamic lighting, while in the placebo phases, the participants were exposed to placebo light. Both light phases came from the same light system. Based on this study protocol, the quantitative effects of biodynamic light related with functional activity did not reach significance. However, the qualitative results of lighting seem promising with a stabilisation of functional activity experienced over time. Future research should examine the effects that light may have on functional activity more in-depth. This study offers recommendations for longitudinal research.

scholarly journals A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study (Preprint)

2019 ◽  
Author(s):  
Estefania Guisado-Fernandez ◽  
Catherine Blake ◽  
Laura Mackey ◽  
Paula Alexandra Silva ◽  
Dermot Power ◽  
...  
Keyword(s):  
Home Care ◽  
Functional Status ◽  
Disease Progression ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
People With Dementia ◽  
Mental Well Being ◽  
At Home

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 RR2-10.2196/13280

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

JMIR Aging ◽  
10.2196/15600 ◽  
2020 ◽  
Vol 3 (2) ◽  
pp. e15600
Author(s):  
Estefania Guisado-Fernandez ◽  
Catherine Blake ◽  
Laura Mackey ◽  
Paula Alexandra Silva ◽  
Dermot Power ◽  
...  
Keyword(s):  
Home Care ◽  
Functional Status ◽  
Disease Progression ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
People With Dementia ◽  
Mental Well Being ◽  
At Home

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

scholarly journals Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach
Keyword(s):  
Negative Impact ◽  
Living Arrangement ◽  
Informal Caregivers ◽  
Well Being ◽  
Rapid Review ◽  
People With Dementia ◽  
Psychosocial Resilience ◽  
Quantitative Descriptive ◽  
The Impact ◽  
Health And Well Being

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

scholarly journals Development of a Caregivers’ Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study

10.2196/13280 ◽  
2019 ◽  
Vol 8 (8) ◽  
pp. 13280
Author(s):  
Estefania Guisado-Fernandez ◽  
Brian Caulfield ◽  
Paula Alexandra Silva ◽  
Laura Mackey ◽  
David Singleton ◽  
...  
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Home Care ◽  
Informal Caregivers ◽  
Intervention Group ◽  
Well Being ◽  
Mixed Methods Study ◽  
Care Plan ◽  
Connected Health ◽  
At Home

Background Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver’s and PwD’s emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management–based strategies, and enhancing caregivers’ involvement in the management of health care at home for PwDs. Conclusions We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs’ care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. International Registered Report Identifier (IRRID) DERR1-10.2196/13280

scholarly journals Psychomotor Dance Therapy Intervention (DANCIN) for people with dementia in care homes: a multiple-baseline single-case study

2016 ◽  
Vol 28 (10) ◽  
pp. 1695-1715 ◽  
Author(s):  
A. Guzmán ◽  
M. Freeston ◽  
L. Rochester ◽  
J. C. Hughes ◽  
I. A. James
Keyword(s):  
Nursing Home ◽  
Dance Therapy ◽  
Single Case ◽  
Well Being ◽  
Care Homes ◽  
Multiple Baseline ◽  
Single Case Study ◽  
People With Dementia ◽  
Therapy Intervention

ABSTRACTBackground:A Psychomotor DANCe Therapy INtervention (DANCIN) using Latin Ballroom (Danzón) in care homes has previously been shown to enhance well-being for both residents with dementia and staff. The aim of this study was to understand the effect of this approach on the mood and behavior of individual people living with mild to moderate dementia.Method:A multiple-baseline single-case study across two care homes and one nursing home with 3–6 weeks baseline, 12-weeks DANCIN (30 minutes/twice-weekly sessions), and 12-weeks follow-up was conducted. Seventeen items from the Dementia Mood Assessment Scale (DMAS) outcome measure were adapted with input from senior staff to match participants’ behavior and mood symptoms. Daily monitoring diaries were collected from trained staff on reporting individualized items for ten residents. Data were analyzed, using a non-parametric statistical method known as Percentage of All Non-Overlapping Data (PAND) which provides Phi effect size (ES). Medication use, falls, and life events were registered.Results:Seven residents participated throughout DANCIN whilst three became observers owing to health deterioration. One participant showed adverse effects in three DMAS items. Nine participants, dancers and observers, showed a small to medium magnitude of change (PAND) in 21 DMAS items, indicating a decrease in the frequency of behavior and mood indices which were regarded as problematic; eight items showed no change.Conclusion:Despite methodological challenges, the DANCIN model has the potential to facilitate and sustain behavior change and improve mood (e.g. decrease irritability, increase self-esteem) of the residents living with dementia. The study was conducted in two care homes and one nursing home, strengthening the interventions’ validity. Findings suggest DANCIN is appropriate for a larger controlled feasibility study.

scholarly journals Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

2016 ◽  
Vol 42 (3-4) ◽  
pp. 198-214 ◽  
Author(s):  
Karlijn J. Joling ◽  
Gill Windle ◽  
Rose-Marie Dröes ◽  
Franka Meiland ◽  
Hein P.J. van Hout ◽  
...  
Keyword(s):  
Informal Caregivers ◽  
Well Being ◽  
Negative Consequences ◽  
Data Set ◽  
Male Caregiver ◽  
People With Dementia ◽  
Different Types ◽  
High Care ◽  
International Data ◽  
Person With Dementia

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services.

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