scholarly journals Modulators of Caregiver Distress and Corresponding Impacts on Persons With Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 130-130
Author(s):  
Michaella Trites ◽  
Sebastian Santana ◽  
Debra Sheets ◽  
Andre Smith ◽  
Robert Stawski ◽  
...  
Keyword(s):  
Well Being ◽  
Coupling Model ◽  
Care Recipient ◽  
Extensive Literature ◽  
Time Varying ◽  
Caregiver Distress ◽  
Care Recipients ◽  
Motion Study ◽  
Care Partners ◽  
The Impact

Abstract Extensive literature documents the detrimental effects of caregiver distress (CD) for caregivers. Less is known about the impact that CD exerts upon their care recipients, particularly persons with dementia (PwD). Using multilevel modeling, this study employed dyadic data from the Voices in Motion study to examine time-varying within-person associations between key caregiver and care recipient indicators of psychosocial function. An initial dyadic coupling model indicated that cognitive functioning for PwD and caregiver well-being significantly predicted shifts in CD. A second time-varying dyadic model found that, within dyads, high levels of CD predicted lower positive affect and increased depression scores in PwD. Most sociocognitive interventions target a sole member of a dyad; our results suggest that both dyad members are impacted simultaneously. Caregiver well-being impacts CD, which in turn, impacts well-being in PwD. The symbiotic relationship between care partners and PwD is nuanced, with further research required to understand the interdependencies.

scholarly journals SOCIAL NETWORKS, HEALTH, AND WELL-BEING AMONG PEOPLE LIVING WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S71-S71
Author(s):  
Eleanor S McConnell ◽  
Kirsten Corazzini ◽  
T Robert Konrad
Keyword(s):  
Older Adults ◽  
Social Networks ◽  
Well Being ◽  
Sensor Technology ◽  
Web Based ◽  
Use Of Technology ◽  
Care Partners ◽  
The Impact ◽  
The Relationship ◽  
Health And Well Being

Abstract Although the impact of dementia on the health and well-being of those living with Alzheimer’s Disease and related Disorders (ADRD) and their care partners has been widely studied, less attention has been paid to how the disease impacts individuals within the context of their larger social networks. This symposium presents findings from a series of integrated studies aimed at strengthening measurement of health and well-being among older adults with living with dementia and well-being among members of their social networks. Findings will be presented from five studies: (1) a scoping review of social network measurement in older adults in chronic illness, including dementia, that emphasizes the use of technology in measuring older adults’ social networks; (2) a simulation study to evaluate the feasibility and reliability of sensor technology to measure social interaction among a person living with dementia and others in their immediate surroundings; (3) development of a web-based application that allows older adults to map and activate their social networks; (4) a qualitative analysis of interviews from persons living with dementia, their unpaid caregivers, and paid caregivers from an adult day health program concerning well-being focused outcomes; and (5) a mixed methods analysis of the feasibility of using both traditional and novel measures of health and well-being deployed among networks of people living with dementia. Emerging technologies for measuring social networks health and well-being hold promise for advancing the study of the relationship-based nature of care for people living with dementia.

scholarly journals The heterogeneous severity of COVID-19 in African countries: A modeling approach

2021 ◽  
Author(s):  
Salihu Sabiu Musa ◽  
Xueying Wang ◽  
Shi Zhao ◽  
Shudong Li ◽  
Nafiu Hussaini ◽  
...  
Keyword(s):  
Case Fatality ◽  
Well Being ◽  
Mitigation Strategies ◽  
Basic Reproductive Number ◽  
Reproductive Number ◽  
Time Varying ◽  
African Countries ◽  
Awareness Campaigns ◽  
Considerable Impact ◽  
The Impact

Abstract Background: The COVID-19 pandemic has had a considerable impact on global health and economics. The impact in African countries has not been investigated through fitting epidemic models to the reported COVID-19 deaths.Method: We downloaded data for the twelve most affected countries with the highest cumulative COVID-19 deaths to estimate the time-varying basic reproductive number (R0(t)) and infection attack rate (IAR). We developed a simple epidemic model and fitted the model to reported COVID-19 deaths in twelve African countries using iterated filtering and allowing a flexible transmission rate.Results: We observed high heterogeneity in the case-fatality rate across countries, which may be due to different reporting or testing efforts. South Africa, Tunisia, and Libya were affected most strongly, exhibiting a relatively higher(R0(t)) and infection attack rate.Conclusion: To effectively control the spread of COVID-19 epidemics in Africa, there is a need to consider other mitigation strategies (such as improvements in socioeconomic well-being, healthcare systems, the water supply, and awareness campaigns).

scholarly journals A Scoping Review of the Examination of Sandwiched Caregivers’ Psychological Well-being and Physical Health

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 814-814
Author(s):  
Barbara Hodgdon ◽  
Jen D Wong ◽  
Patricia S Pittman
Keyword(s):  
United States ◽  
Depressive Symptoms ◽  
Health Behaviors ◽  
Physical Health ◽  
Scoping Review ◽  
Well Being ◽  
The United States ◽  
Psychological Well Being ◽  
Care Recipients ◽  
The Impact

Abstract As numbers of sandwiched caregivers in the United States grow, it is essential to document the literature on the impact of dual care responsibilities on aspects of psychological well-being and physical health. This scoping review examined the literature on sandwiched caregivers’ psychological well-being and physical health, identified gaps in the literature, and provided suggestions for future studies to advance the literature on sandwiched caregivers in the United States. Guided by the Arksey and O’Malley (2005) framework, this scoping review comprised of 15 peer-reviewed articles between 1980 and 2019, that examined aspects of the psychological well-being (e.g., depression, affect) and physical health (e.g., health behaviors, chronic conditions) of sandwiched caregivers in the United States. Findings showed that there was ambiguity surrounding the conceptualization of sandwiched caregivers, specifically how older and younger care recipients were defined. Also, most studies examined psychological well-being while physical health was understudied. The findings of this review also showed that, compared to non-sandwiched caregivers (e.g., spousal, filial caregivers) and non-caregivers, sandwiched caregivers exhibited greater depressive symptoms and psychological distress as well as poorer health behaviors. Furthermore, sandwiched caregivers who were female and employed were more susceptible to greater depressive symptoms than their employed male counterparts or employed non-caregivers. In considering future directions, more work is needed that examines physical health. Additionally, sandwiched caregivers of minority status merit attention as multigenerational care occurs at greater rates in these populations. Finally, caregiving during the pandemic may have a detrimental impact on sandwiched caregivers’ lives which should be investigated.

scholarly journals Care Partners and Multiple Sclerosis

2015 ◽  
Vol 17 (6) ◽  
pp. 253-260 ◽  
Author(s):  
Tamara McKenzie ◽  
Mary Elizabeth Quig ◽  
Tuula Tyry ◽  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Caregiver Burden ◽  
Psychological Health ◽  
Well Being ◽  
Future Research ◽  
Online Questionnaire ◽  
Research Committee ◽  
Care Partners ◽  
Male Care ◽  
The Impact

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment. Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were men (n = 825, 61.9%), with a mean (SD) age of 51.1 (11.2) years. The mean (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. Compared with male care partners, female care partners reported higher levels of burden and stress and more medication use for stress/anxiety and mood disorders. Male care partners were more likely to report physical concerns. Care partners of people with primary progressive MS reported greater perceived burden than did partners of people with secondary progressive MS and relapsing-remitting MS. More than 40% of care partners (559 of 1288) had missed work during the past year owing to caregiving responsibilities. Conclusions: Care partners of people with MS have substantial physical and psychological health concerns and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse effects of caregiving and evaluate positive aspects of the role.

scholarly journals PLACE MATTERS: HOW LOCATION AT DEATH INFLUENCES CAREGIVER WELL-BEING IN BEREAVEMENT

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S136-S136
Author(s):  
Deborah P Waldrop ◽  
Jacqueline M McGinley
Keyword(s):  
Older Adults ◽  
Quantitative Methods ◽  
Hospice Care ◽  
Well Being ◽  
Care Recipient ◽  
Categorical Variables ◽  
Qualitative And Quantitative Methods ◽  
Care Recipients ◽  
Location Of Death ◽  
Actual Location

Abstract Most older adults express the preference to die at home, but the desire for home death may go unfulfilled when the dying process become burdensome. Little is known about the congruence between older adults’ and their caregivers’ desired locations at death. The purpose of this study was to explore how the congruence between caregiver-care recipients desired and actual location at death influenced well-being in bereavement. This exploratory study utilized simultaneous qualitative and quantitative methods. Interviews were conducted with 108 bereaved caregivers about 4 months after the care recipient died while receiving hospice care. Care recipients’ ages ranged from 43-101 (M=79.6); caregivers from 32-88 (M=61.5). Quantitative data included categorical variables about demographics, advance care planning and location at death. The Core Bereavement Items and CDC HRQOL–14 "Healthy Days Measure" scales were used. Qualitative data involved open-ended questions about the illness trajectory, desired location and perceptions of care at life’s end. Quantitative analysis included comparison of group differences using both Independent Samples t-tests and One-way ANOVA. Of the 92 care recipients who had an advance directive, N=49 (45%) were in the location they desired and for N=49 (45%) there was caregiver/care recipient congruence about location. Caregivers who experienced incongruence reported poorer physical and emotional well-being and higher, more intense bereavement symptoms. Three overarching themes illuminated caregivers’ experiences: (1) Caregiver-recipient congruence; (2) Caregiver-recipient incongruence; (3) Incongruence-influenced bereavement. Results suggest that incongruence between desired and actual location of death affects well-being in bereavement. Implications: Communication about location at death is an essential consideration.

Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

2021 ◽  
pp. 1-16
Author(s):  
Daniella Rangira ◽  
Hiba Najeeb ◽  
Samantha E. Shune ◽  
Ashwini Namasivayam-MacDonald
Keyword(s):  
Older Adults ◽  
Caregiver Burden ◽  
Social Life ◽  
English Language ◽  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Meta Analyses ◽  
The Impact

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

scholarly journals ‘You come because it is an interesting place’: The impact of attending a heritage programme on the well-being of people living with dementia and their care partners

Dementia ◽  
2021 ◽  
pp. 147130122098538
Author(s):  
Anthea Innes ◽  
Helen F Scholar ◽  
Jana Haragalova ◽  
Monika Sharma
Keyword(s):  
United Kingdom ◽  
Social Inclusion ◽  
Well Being ◽  
Primary Data ◽  
Data Sets ◽  
Heritage Sites ◽  
The United Kingdom ◽  
Care Partners ◽  
Before And After ◽  
The Impact

Promoting access to heritage settings has been acknowledged as a way to promote well-being in the United Kingdom for people living with dementia and their care partners. Yet there is a lack of information available internationally on the contribution of heritage sites to promote well-being and social inclusion for those living with dementia. This study addresses this gap by reporting on the impact for 48 people of participating in the ‘Sensory Palaces’ (SP) programme run by Historic Royal Palaces at Hampton Court and Kew Palaces in the United Kingdom. Two primary data sources were used; post-session interviews involving 30 participants (the person living with dementia and/or their care partners), and 131 sets of self-complete pre- and post-session mood questionnaires administered directly before and after SP session attendance. Analysis of the data sets is presented under three themes: enjoyment and engagement; connecting and learning and place, space and time. The findings demonstrate that participants highly valued the heritage sessions and reported positively on the impact this had for their individual well-being and their relationships with one another. This study highlights the opportunity for heritage sites to contribute to promoting well-being for people living with dementia.

scholarly journals Memory and communication support strategies in dementia: Effect of a training program for informal caregivers

2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  
Keyword(s):  
Training Program ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Training Group ◽  
Well Being ◽  
Care Recipient ◽  
Control Group ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

ABSTRACTBackground: People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated.Methods: A pre-test/post-test controlled trial was undertaken with caregiver–care-recipient dyads living in the community. Measures of the carers’ knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured.Results: Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers’ knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups.Conclusions: This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.

Examining the Influence of Care-Recipient Resistance on Family Caregiver Emotional and Physical Well-Being: Average Frequency Versus Daily Fluctuation

2016 ◽  
Vol 37 (2) ◽  
pp. 203-227 ◽  
Author(s):  
Yumi Shirai ◽  
Susan Silverberg Koerner
Keyword(s):  
Physical Health ◽  
Repeated Measures ◽  
Well Being ◽  
Average Frequency ◽  
The United States ◽  
Care Recipient ◽  
Future Research ◽  
Daily Fluctuation ◽  
Health Symptoms ◽  
The Impact

Although existing cross-sectional research suggests that dependent older family members’ resistive behavior (care-recipient [CR] resistance: verbal or nonverbal rejection or resistance toward caregiver [CG] assistance) can be challenging for informal family CGs, we know little about the impact of the occurrence patterns of CR-resistance—average frequency versus daily fluctuation—on CG emotional and physical well-being. To document CGs’ daily experiences with CR-resistance and their emotional and physical well-being, the present study applied short-term repeated measures, collecting data on 8 consecutive days from 63 CGs in Southern Arizona, the United States. Multilevel modeling of the daily data revealed that neither average frequency nor daily fluctuation in CR-resistance alone had a significant impact on CG emotional/physical health. However, the combination of experiencing relatively high frequency and high daily fluctuation in CR-resistance was associated with significant increases in CG physical health symptoms ( b = .34, p < .01). Specifically, on days when a CG faced more CR-resistance than his or her usual amount, significant increases in physical health symptoms existed for CGs with relatively high average frequency of CR-resistance, but not for CGs with relatively low average frequency of CR-resistance. Based on our results, it appears that monitoring and maintaining a reasonable level of CR-resistance are effective strategies to maintain CG resilience to the negative impact of CR-resistance daily fluctuation. The findings are interpreted in light of Stress Theory, and recommendations for future research and practical interventions are offered.

scholarly journals Using Computer Tablets to Improve Moods for Older Adults With Dementia and Interactions With Their Caregivers: Pilot Intervention Study

10.2196/14530 ◽  
2019 ◽  
Vol 3 (3) ◽  
pp. e14530 ◽  
Author(s):  
Aaron Gilson ◽  
Debby Dodds ◽  
Arveen Kaur ◽  
Michael Potteiger ◽  
James H Ford II
Keyword(s):  
United States ◽  
Positive Mood ◽  
The United States ◽  
Care Recipient ◽  
Daily Activities ◽  
Chi Square ◽  
Skilled Nursing ◽  
Mood Changes ◽  
Care Recipients ◽  
The Impact

Background Persons living with dementia represent a significant and growing segment of the older adult (aged 65 years and older) population. They are often challenged expressively and may experience difficulties with sharing their feelings or moods. Availability of, and easy access to, tablets facilitates the use of information and communication technologies (ICTs) as a delivery mechanism for nonpharmacological interventions, especially for persons living with dementia. Evidence of the impact of ICTs in different community settings on mood with older adults and the impact of engagement on their caregivers is needed to promote broader adoption and sustainment of these technologies in the United States. Objective This study aimed to determine the extent of the effects of tablets on positive mood change and examine the effects of study variables on care recipients’ mood changes and caregivers’ daily interactions. Methods The tablet intervention was developed and evaluated in five programs. The primary outcome was caregivers’ assessment of care recipients’ mood (n=1089) before and after a tablet engagement session using an eight-point mood visual analog scale. Session influence on caregivers’ daily activities was captured for a subsample of participants (n=542). Frequency distributions were computed for each study variables. Chi-square tests of association were calculated to determine the association of the variables on mood changes for all care recipients, as well as those being treated in skilled nursing facilities and in-home, and then for those that affected caregivers’ daily activities. Results The study sample comprised 1089 care recipient and caregiver engagement sessions. Cumulatively, 50.78% (553/1089) of care recipients showed a transition from negative to positive moods, whereas another 41.78% (455/1089) maintained an already-positive mood after the caregiver engagement session. Chi-square analyses demonstrated that positive mood changes resulted from using music (χ210=72.9; P<.001), using YouTube as the sole app (χ212=64.5; P<.001), using multiple engagement strategies (χ22=42.8; P<.001), and when cared for in a skilled nursing facility (χ24=236.8; P<.001) across the entire care recipient sample. In addition, although many features of the engagement session positively influenced the caregivers’ day, the largest effect was observed when care recipients’ mood was considered to have improved following the session (χ24=234.7; P<.001). Conclusions The study is one of the first in the United States to explore the impact of ICTs, in particular managed tablets and Web-based video services that can be used on a tablet through an app, on improving mood in persons living with dementia, and enhancing caregivers’ perceptions about their care recipient interactions. Importantly, these pilot data substantiate ICTs as part of a personalized engagement approach, as beneficial alternatives to pharmaceutical interventions for mood enhancement. However, a more comprehensive study that explores the ICT’s impact on additional clinical outcomes is needed to confirm these preliminary findings.

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