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

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

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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 (Preprint)

10.2196/preprints.15600 ◽

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

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

JMIR Research Protocols ◽

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

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An evaluation of preventive sensor technology for dementia care

Journal of Telemedicine and Telecare ◽

10.1258/jtt.2012.120605 ◽

2013 ◽

Vol 19 (2) ◽

pp. 95-100 ◽

Cited By ~ 16

Author(s):

Nienke Nijhof ◽

Lisette Jewc Van Gemert-Pijnen ◽

Ryan Woolrych ◽

Andrew Sixsmith

Keyword(s):

Monitoring System ◽

Informal Caregiver ◽

Informal Caregivers ◽

Warning System ◽

Sensor Technology ◽

Burden Of Care ◽

Emergency Intervention ◽

People With Dementia ◽

Staying At Home ◽

At Home

We evaluated a commercially-available monitoring system for older people with dementia living at home. The system was designed to detect problems before they require crisis intervention. Fourteen clients from two healthcare organisations in the Netherlands used the system over a 9-month period. The formal and informal caregivers were interviewed, project group meetings were observed, nurse diaries were analysed and a cost analysis performed. Clients and informal caregivers reported enhanced feelings of safety and security as a result of having the system installed in the home. The system appeared to reduce the burden of care on the informal caregiver and had the potential to allow people to live at home for longer. There were financial savings for clients staying at home with the technology compared with the costs of staying in a nursing home: for 10 clients living at home for 2 months, the savings were 23,665 euro. The study showed that the monitoring system represents a potentially useful early warning system to detect a situation before it requires emergency intervention.

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

Applied Sciences ◽

10.3390/app112110221 ◽

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.

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349 - Cognitive-Behavioral Therapy for Caregiving Relatives of People with Dementia: Three-Year Follow-Up of a Randomized Controlled Trial

International Psychogeriatrics ◽

10.1017/s1041610220002495 ◽

2020 ◽

Vol 32 (S1) ◽

pp. 113-113

Author(s):

Mareike C. Sittler ◽

Nils F. Töpfer ◽

Franziska Meichsner ◽

Christina Theurer ◽

Gabriele Wilz

Keyword(s):

Challenging Behavior ◽

Behavioral Therapy ◽

Well Being ◽

Care Recipient ◽

Long Term Effects ◽

Positive Effects ◽

People With Dementia ◽

Home Placement ◽

At Home

Background:Even if cognitive-behavioral therapy (CBT) for caregiving relatives of people with dementia (PwD) has been found to be effective across various outcome measures, investigations into the long-term effects of these interventions remain scarce. Therefore, the purpose of the present study was the evaluation of a CBT intervention for caregiving relatives of PwD three years after intervention onset.Method:273 caregivers were randomly assigned to receive the intervention (IG) or usual care (CG). IG participants received over 6 month twelve 50-min sessions of individual CBT by trained psychotherapists. Symptoms of depression (CES-D), physical health symptoms (GBB-24), challenging behavior (BEHAVE-AD), quality of life (WHOQOL-BREF), utilization of psychosocial resources (RES), burden of care, coping with the care situation, and emotional well-being (visual analogue scales) were assessed three years after baseline. Data were analyzed using generalized ANCOVA.Results:164 participants (IG: n = 83, CG: n = 81; 60% of the baseline sample) participated in the three-year follow-up. Based on changes in the caregiving situation at three-year follow-up, we divided the sample into three subgroups: “still caring at home” (n = 52), “nursing home placement of the care recipient” (n = 29), “bereaved caregivers” (n = 83). Positive effects were found in the subgroup of caregivers “still caring at home” (on burden of care, coping with challenging behavior, social relationships QoL-domain) and “bereaved caregivers” (on overall QoL and physical health QoL-domain) compared to the CG. However, IG participants who decided for “nursing home placement of the care recipient” had poorer outcomes on a few measures (overall QoL, psychological health, emotional well-being, utilization of resources related to well-being).Discussion:It is impressive that CBT for caregiving relatives yielded positive effects in caregivers still caring at home and bereaved caregivers investigating long-term effects three years after baseline. Many challenges arise over the course of the different caregiving trajectories with changes in the caregiving situation being probably particularly influential. We will provide some ideas on how effects could be further sustained and discuss the need for further investigating the impact of changes in the caregiving situation.

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

10.2196/preprints.13280 ◽

2019 ◽

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

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Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽

10.1024/1662-9647/a000207 ◽

2019 ◽

Vol 32 (3) ◽

pp. 125-134

Author(s):

Mechthild Niemann-Mirmehdi ◽

Andreas Häusler ◽

Paul Gellert ◽

Johanna Nordheim

Keyword(s):

Quality Of Life ◽

Patient Autonomy ◽

Positive Association ◽

Well Being ◽

Negative Association ◽

Significant Positive Association ◽

Cross Sectional ◽

People With Dementia ◽

Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

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PUTRA-Adol study: protocol for an observational follow-up study to assess the tracking of dietary patterns linked to cardiometabolic risk factors and its prospective relationship with non-alcoholic fatty liver disease, carotid intima-medial thickness and mental well-being during adolescence in Malaysia

BMJ Open ◽

10.1136/bmjopen-2020-044747 ◽

2021 ◽

Vol 11 (5) ◽

pp. e044747

Author(s):

Geeta Appannah ◽

Nor Aishah Emi ◽

Mugambikai Magendiran ◽

Zalilah Mohd Shariff ◽

Azriyanti Anuar Zaini ◽

...

Keyword(s):

Risk Factors ◽

Cardiometabolic Risk ◽

Well Being ◽

Cardiometabolic Risk Factors ◽

Dietary Intakes ◽

Alcoholic Fatty Liver ◽

Follow Up Study ◽

Carotid Intima Medial Thickness ◽

Mental Well Being

IntroductionGrowing evidence suggesting that dietary intakes of adolescents are generally of poor quality but not adequately assessed in relation to the early manifestation of non-communicable diseases. This study aimed; (1) to examine tracking of an empirical dietary pattern (DP) linked to cardiometabolic risk factors and, (2) to assess prospective relationships between a DP characterised by high intakes of dietary energy density (DED) and added sugar, and cardiometabolic risk factors, non-alcoholic fatty liver disease (NAFLD), carotid intima-medial thickness (CIMT) and mental well-being during adolescence.Methods and analysisThe PUTRA-Adol is a prospective follow-up study that builds up from 933 Malaysian adolescents who were initially recruited from three southern states in Peninsular Malaysia in 2016 (aged 13 years then). Two sessions are planned; the first session will involve the collection of socio-economy, physical activity, dietary intakes, mental well-being, body image, risk taking behaviour, sun exposure, family functioning and menstrual (in women) information. The second session of data collection will be focused on direct assessments such as venesection for blood biochemistry, anthropometry and ultrasonography imaging of liver and bilateral carotid arteries. Z-scores for an empirical DP will be identified at 16 years using reduced rank regression. Multilevel modelling will be conducted to assess the tracking of DP and prospective analysis between the DP, cardiometabolic health, NAFLD, CIMT and mental well-being.Ethics and disseminationEthical approval for the conduct of this follow-up study was obtained from the Universiti Putra Malaysia’s Ethics Committee for Research Involving Human Subjects (JKEUPM) (Reference number: JKEUPM-2019–267). The findings from this study will be disseminated in conferences and peer-reviewed journals.DiscussionThe findings gathered from this study will provide evidence on prospective relationships between DPs, cardiometabolic risk factors, NAFLD, early atherosclerosis and mental well-being and that it may be mediated particularly DED and added sugar during adolescence.

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

Gerontology and Geriatric Medicine ◽

10.1177/23337214211020164 ◽

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.

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The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Dementia ◽

10.1177/14713012211012606 ◽

2021 ◽

pp. 147130122110126

Author(s):

Alexandra E Harper ◽

Lauren Terhorst ◽

Marybeth Moscirella ◽

Rose L Turner ◽

Catherine V Piersol ◽

...

Keyword(s):

Nursing Home ◽

Nursing Homes ◽

Home Care ◽

Scoping Review ◽

Informal Caregivers ◽

Nursing Home Care ◽

Person Centered Care ◽

People With Dementia ◽

Centered Care

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

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