scholarly journals INFORMAL CAREGIVER BURDENS AND THE SUBSEQUENT COGNITIVE STATUS OF THE CARE RECIPIENT

2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 314-314
Author(s):  
D. Lloyd ◽  
M.P. Aranda
Keyword(s):  
Informal Caregiver ◽  
Cognitive Status ◽  
Care Recipient ◽  
Caregiver Burdens

Caregiving as Pilgrimage

2018 ◽  
Author(s):  
Helen K. Black ◽  
John T. Groce ◽  
Charles E. Harmon
Keyword(s):  
Informal Caregiver ◽  
Care Recipient ◽  
The Subject ◽  
Do So

In this chapter, we explore the experience of an elder husband who was the primary informal caregiver for his wife of 60 years. We describe their encounters as caregiver and care recipient through the years as a pilgrimage. We do so because we believe this word has a revered connotation. Generally, two or more people travel together to a pilgrimage site for the sake of gaining spiritual insight or meaning. In a pilgrimage, the journey toward the site becomes an important part of the sacred quest. The husband who is the subject of this chapter cared for his wife for over 25 years. Through the years, his wife became increasingly impaired and incurred several serious illnesses at the same time that he, as caregiver, experienced his own illnesses and the declines of age.

scholarly journals LONG-DISTANCE CAREGIVERS’ INFORMAL CARE NETWORKS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S557-S557
Author(s):  
Danielle Jimenez ◽  
Francesca Falzarano ◽  
Amy Horowitz ◽  
Verena Cimarolli ◽  
Jillian Minahan
Keyword(s):  
Cognitive Impairment ◽  
Informal Care ◽  
Secondary Care ◽  
Informal Caregiver ◽  
Care Recipient ◽  
Depression And Anxiety ◽  
Long Distance ◽  
Factors Associated ◽  
Frequent Contact ◽  
Formal Services

Abstract The purpose of this study (N=304) was to examine the characteristics of LDCs’ informal caregiver (IC) network (Co-caregivers [Co-CG], other informal helpers) providing assistance to the care recipient (CR), and factors associated with more help received from ICs. The majority of LDCs in the sample reported working with at least one IC (81.9%) indicating the existence of a secondary care network. LDCs and Co-CGs were often siblings in comparison to other informal helpers that were more likely to be the CR’s friend. Results also show that CRs with children, living in the community, receiving no formal services, and lower levels of cognitive impairment receive more hours of help from ICs. In addition, more hours of help by ICs were associated with LDCs’ having higher scores of depression and anxiety, spending more hours per month helping the CR, and more frequent contact with CR. These seemingly discrepant findings are discussed.

Single-group trial of an Internet-delivered insomnia intervention among higher-intensity family caregivers: Rationale and mixed-methods study protocol (Preprint)

2021 ◽  
Author(s):  
Kelly Shaffer ◽  
Lee M. Ritterband ◽  
Wen You ◽  
Daniel J. Buysse ◽  
Meghan Mattos ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Family Caregivers ◽  
Behavioral Therapy ◽  
Digital Health ◽  
Cognitive Status ◽  
Care Recipient ◽  
The Internet ◽  
Psychosocial Needs ◽  
Open Label ◽  
Survey Responses

BACKGROUND Family caregivers are more likely to experience insomnia relative to non-caregivers, but have significant barriers to accessing gold-standard Cognitive Behavioral Therapy for Insomnia (CBT-I) treatment. Delivering interventions for caregivers by the Internet may help increase access to care, particularly among higher-intensity caregivers who provide assistance with multiple care tasks over many hours per week. Although there are existing Internet interventions that have been thoroughly studied and demonstrated effective in the general population, it has not been studied the extent to which these interventions may be effective for caregivers without tailoring to address this population’s unique psychosocial needs. OBJECTIVE The goal of this trial is to determine what tailoring may be necessary for which caregivers to ensure they receive optimal benefit from an existing evidence-based, Internet-delivered CBT-I program, SHUTi (Sleep Healthy Using the Internet). Specifically, we will test the association between caregivers’ engagement with SHUTi and their caregiving context characteristics (i.e., caregiving strain, self-efficacy, and guilt) and environment (i.e., proximity to care recipient; care recipient functional status, cognitive status, and problem behavior; and type of care provided). Among caregivers utilizing the program, we will also test the associations between change in known treatment mechanisms (sleep beliefs and sleep locus of control) and caregiving context factors. METHODS One-hundred higher-intensity caregivers with significant insomnia symptoms will be recruited from across the U.S. to receive access to SHUTi in an open-label trial with mixed-methods pre- and post-assessments. At post-assessment (9 weeks following pre-assessment completion), participants will be categorized according to their engagement with the program (non-users, incomplete users, or complete users). Study analyses will address three specific aims: To examine the association between caregivers’ engagement with SHUTi and their caregiving context (Aim 1a); to describe caregivers’ barriers to and motivations for SHUTi engagement will be described from open-ended survey responses (Aim 1b); and among caregivers using SHUTi, to determine whether cognitive mechanisms of change targeted by SHUTi are associated with differences in caregiving context (Aim 2). RESULTS Institutional Review Board approvals have been received and recruitment will be initiated in 2022, with data collection expected through 2023. CONCLUSIONS Findings will inform next research steps for tailoring and testing SHUTi for optimal impact and reach among caregivers. Beyond implication to the SHUTi program, findings will be translatable across intervention programs and hold significant promise to reduce inefficiencies in developing digital health interventions for caregivers, while also increasing their impact and reach for this underserved population. CLINICALTRIAL This trial is registered with ClinicalTrials.gov (NCT04986904)

A Harmful Care: The Association of Informal Caregiver Burnout With Depression, Subjective Health, and Violence

2021 ◽  
pp. 088626052098325
Author(s):  
Pierre Gérain ◽  
Emmanuelle Zech
Keyword(s):  
Informal Caregiver ◽  
Physical Violence ◽  
Informal Caregivers ◽  
Warning Signal ◽  
Subjective Health ◽  
Cross Sectional Study ◽  
Care Recipient ◽  
Psychological Violence ◽  
Cross Sectional ◽  
Caregiver Burnout

Providing informal care to a relative can lead to informal caregiver burnout, which is expected to lead to deleterious consequences. Among these consequences lie the risk of perpetrating violent behaviors against the care-recipient, the caregivers’ risk of depression, and their low subjective health. To investigate these associations, a sample of 499 informal caregivers completed a questionnaire addressing informal caregiver burnout, depression, subjective health, and violence. Hierarchical regression models were used to investigate the potential association of burnout with these potential consequences, while controlling for sociodemographic variables and received violence. The results show that burnout, and especially emotional exhaustion, is significantly associated with depression, low subjective health, and perpetrated physical violence, but not with perpetrated psychological violence. For both psychological and physical violence, it appears that receiving violence is one of the best predictors of perpetrating violence. With these results, this cross-sectional study confirms the association of informal caregiver burnout with deleterious consequences—even if this observation must be pondered—and the central role of received violence in predicting perpetrated violence, suggesting the risk of violence escalation. The implications of these results suggest that the emotional state of informal caregivers is one of the indicators of potential deleterious consequences and should, as such, be considered as a warning signal by field workers.

scholarly journals Neuropsychiatric Symptoms by Cognitive Status for Mexican-Americans Aged 85 and Older

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 893-893
Author(s):  
Lan Vu
Keyword(s):  
Cognitive Impairment ◽  
Mexican Americans ◽  
Mexican American ◽  
Psychiatric Symptoms ◽  
Neuropsychiatric Symptoms ◽  
Cognitive Status ◽  
Care Recipient ◽  
Future Research ◽  
Marginal Effect ◽  
Care Recipients

Abstract Older adults with dementia and cognitive impairment often experience neuropsychiatric symptoms (NPS). Few studies have investigated the presence of NPS among older Mexican-American adults. Our objective was to describe the NPS of Mexican-Americans 85 years and older according to cognitive status. Data came from wave 9 (conducted in 2016) of the Hispanic Established Populations for the Epidemiological Study of the Elderly. The final sample consisted of 381 care recipients aged 85 years and older, along with their caregivers. The 12-item Neuropsychiatric Inventory (NPI-12) was administered to measure behavioral and psychiatric symptoms among the care recipients. Cognitive impairment was defined as a score of 18 or less on the Mini Mental Status Exam (MMSE). Care recipients with a diagnosis of dementia as reported by the caregiver were also classified as cognitively impaired. Overall, 259 (68.0%) participants had one or more NPS. Logistic regression models were used to estimate the average marginal effect (range = -1 to 1) of cognitive impairment on NPS, controlling for care-recipient characteristics. Approximately 87% of care recipients with cognitive impairment had at least one NPS compared to 55.8% of those without cognitive impairment (p<0.01). The predicted probability of having one or more NPI symptoms was 0.25 percentage points (95% CI=0.14-0.35) higher for participants with cognitive impairment than those without. NPS are present in the majority of older Mexican American adults, particularly in those with cognitive impairment. Future research could also investigate sociodemographic correlates of NPS.

scholarly journals Informal Caregiver Burden, Benefits, and Older Adult Mortality: A Survival Analysis

2020 ◽  
Vol 75 (10) ◽  
pp. 2193-2206
Author(s):  
Teja Pristavec ◽  
Elizabeth A Luth
Keyword(s):  
Older Adults ◽  
Survival Analysis ◽  
Older Adult ◽  
Mortality Risk ◽  
Informal Caregiver ◽  
Adult Mortality ◽  
Care Recipient ◽  
National Study ◽  
Mortality Factors ◽  
Nationally Representative

Abstract Objective Informal caregivers are crucial to maintaining older adults’ health, but few studies examine how caregiving receipt is associated with older person longevity. In a nationally representative sample, we prospectively explore whether and how having an informal caregiver is associated with older adult overall mortality, and how caregivers’ burden and benefits perceptions relate to care recipient mortality. Methods We match six National Health and Aging Trends Study waves (2011–2016) with 2011 National Study of Caregiving data, conducting survival analysis on 7,369 older adults and 1,327 older adult-informal caregiver dyads. Results Having an informal caregiver is associated with 36% (p < .001) higher mortality risk over 6-year follow-up, adjusting for demographic, economic, and health factors. Older adults whose caregivers perceive only burden have 38% higher (p < .05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p < .001) for older adults with caregivers reporting benefits alongside burden, compared to those with caregivers reporting neither perception. Discussion Having a caregiver may signal impending decline beyond known mortality factors. However, interventions to increase caregivers’ benefit perceptions and reduce their burden may decrease mortality risk for older adults with declining health and functional ability.

scholarly journals Neuropsychiatric Symptoms by Cognitive Status for Mexican-Americans Aged 85 and Older

2021 ◽  
Vol 7 ◽  
pp. 233372142110027
Author(s):  
Lan H. Vu ◽  
Kyriakos S. Markides ◽  
Brian Downer
Keyword(s):  
Cognitive Impairment ◽  
Mexican Americans ◽  
Mexican American ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Cognitive Status ◽  
Care Recipient ◽  
Marginal Effect ◽  
Logistic Regression Models ◽  
Care Recipients

Few studies have investigated the relationship between neuropsychiatric symptoms (NPS) and cognitive status among older Mexican-American adults. Our objective was to describe the NPS of Mexican-Americans 85 years and older according to cognitive status. Data came from Wave 9 (conducted in 2016) of the Hispanic Established Populations for the Epidemiological Study of the Elderly. The final sample consisted of 381 care recipients ≥85 years. The 12-item Neuropsychiatric Inventory was administered to measure NPS among care recipients. Cognitive impairment was defined as a score of ≤18 on the Mini Mental State Exam or by clinical diagnosis of dementia as reported by the caregiver. Logistic regression models were used to estimate the average marginal effect (range = –1 to 1) of cognitive impairment on NPS, controlling for care-recipient characteristics. Overall, 259 (68.0%) participants had one or more NPS. Approximately 87% of care recipients with cognitive impairment had at least one NPS compared to 55.8% of those without cognitive impairment ( p < .01). The predicted probability of having one or more NPS was 0.25% points (95% CI = 0.14–0.35) higher for participants with cognitive impairment than those without. NPS are present in the majority of very old Mexican American adults, particularly in those with cognitive impairment.

scholarly journals THE EFFECT OF CAREGIVING EXPERIENCE ON CARE RECIPIENT OLDER ADULTS’ MORTALITY: A SURVIVAL ANALYSIS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S217-S217 ◽  
Author(s):  
Teja Pristavec ◽  
Elizabeth A Luth
Keyword(s):  
Older Adults ◽  
Survival Analysis ◽  
Mortality Risk ◽  
Informal Caregiver ◽  
Care Recipient ◽  
National Study ◽  
Dyadic Relationship ◽  
Risk Of Death ◽  
Time Period ◽  
Nationally Representative

Abstract Health and demographic mortality risk factors among older adults are well documented. However, less is known about the dyadic relationship between caregiver characteristics and care recipient mortality outcomes. In a nationally representative sample of older adults, we prospectively explore 1) whether and how having an informal caregiver is associated with care recipient mortality, and 2) among those with caregivers, how caregivers’ experiences of burden and benefits relate to care recipient mortality. We match 6 waves of National Health and Aging Trends Study (2011-2016) with 2011 National Study of Caregivers data. We conduct survival analysis on 7,369 older adults and a subsample of 1,341 older adult-informal caregiver dyads to address our research questions. First, we find that simply having an informal caregiver increases mortality risk by 71% (p&lt;0.001) over the 6-year time period, even when adjusting for key demographic, economic and health factors. Second, we find that older adults whose caregivers perceive burden have a significantly higher mortality risk. This risk is reduced if the caregiver also perceives caregiving benefits. The risk of death is 41% higher for older adults whose caregivers report burden but no benefit compared to those with caregivers who report neither burden nor benefit. Further research should investigate possible reasons why merely having a caregiver increases older adults’ mortality risk. Interventions to increase caregivers’ sense of benefit and reduce their burden may be an effective way of decreasing mortality risk for older adults with declining health and functional ability.

scholarly journals Spousal Caregiving and Cognitive Trajectories: Does Care Recipient Dementia Status Matter?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 359-360
Author(s):  
Taylor Atkinson ◽  
Dylan Jester ◽  
William Haley
Keyword(s):  
Cognitive Decline ◽  
Population Based ◽  
Cognitive Status ◽  
Spousal Caregivers ◽  
Care Recipient ◽  
Spousal Caregiving ◽  
Before And After ◽  
Race Ethnicity ◽  
Home Placement ◽  
Retirement Study

Abstract Caregiving is often considered stressful, even more so if the care recipient has been diagnosed with dementia. The current study examines the rate of cognitive decline of spousal caregivers of persons with dementia (CG-D) when compared to spousal caregivers of persons without dementia (CG) before and after the death of the care recipient. Health and Retirement Study (HRS) data from 1998-2016 were used to examine cognitive trajectories of CG-D (n=364) and CG (n=1,649) before and after the care recipient death. Cognition was measured through the HRS’s shortened Telephone Interview of Cognitive Status and separated into measures of total cognition and memory. Covariates included age, education, sex, race, ethnicity, care hours, frailty, socioeconomic status, nursing home placement of the recipient, and whether the death was expected. Piecewise mixed models were constructed to examine two two-year periods of decline leading up to the death of the care recipient, and two two-year periods of decline after the death of the care recipient. CG-D and CG declined at equivalent rates on measures of total cognition and memory (ps &gt; .05). In all caregivers, total cognition and memory declined at a stable rate before the death of the care recipient. However, an accelerated decline was evident after the death of the care recipient (ps &lt; .001). Our results suggest that cognitive decline is not differentially affected by care recipient dementia diagnosis. We find evidence that the death of a spousal care recipient is accompanied by hastened cognitive decline in our population-based sample.

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