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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.

ABSTRACT: Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers-that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's self-care or household activities-would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

SUBMITTER: Ornstein KA

PROVIDER: S-EPMC6760240 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.

Ornstein Katherine A KA Wolff Jennifer L JL Bollens-Lund Evan E Rahman Omari-Khalid OK Kelley Amy S AS

Health affairs (Project Hope) 20190601 6

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers-that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's self-care or household acti ...[more]

PMID: 31158025

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Project description:Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers' bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers' trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers' loss, particularly among those with more robust social networks prior to bereavement.

Project description:The aim of this study is to examine caregiver burden of spousal caregivers of patients with esophageal cancer after curative treatment with neoadjuvant chemoradiation followed by resection and to assess factors associated with caregiver burden.In this exploratory, cross-sectional study, spousal caregivers and patients were eligible if the caregiver was the patient's spouse and the patient had been treated with chemoradiation followed by surgery after esophageal carcinoma diagnosis. Forty-seven couples were included. Spousal caregivers completed a questionnaire, examining caregivers' burden (Self-Perceived Pressure from Informal Care (SPPIC, Dutch)), caregiver unmet needs (SCNS-P&S), anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), and marital satisfaction (Maudsley Marital Questionnaire (MMQ)). Patients completed the latter two questionnaires and a cancer specific quality of life questionnaire (EORTC-QLQ C30 and OES18 (oesophageal module). Logistic regression analysis was performed to identify correlates for caregiver burden.The median time after esophagectomy was 38 months. Thirty-four percent of the spousal caregivers reported moderate or high burden. Spousal caregivers most frequently reported unmet needs were managing concerns about the cancer coming back (43%), dealing with others not acknowledging the impact on your life of caring for a person with cancer (38%), and balancing the needs of the person with cancer and one's own needs. A comparable proportion of spousal caregivers and patients showed symptoms of anxiety (23 vs 17%) and depression (17 vs 17%). Spousal caregivers reported significantly more dissatisfaction than patients on the marital scale (p < 0.01). Factors independently associated with higher caregiver burden were fatigue of the patient (OR = 1.66, 95% CI 1.12-2.47) and depression of the spousal caregiver (OR = 1.44, 95% CI 1.11-1.86).More than a third of the spousal caregivers of patients with esophageal cancer treated with curative intent report moderate or high burden 3 years after treatment. Fatigue of the patient and depression of the spousal caregiver are associated with caregiver burden. To improve clinical care, identification of spousal caregivers at risk for experiencing higher caregiver burden and implementation of specific interventions is needed.

Project description:ObjectiveHome-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.DesignCross-sectional questionnaire study.SettingThe Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.ParticipantsOverall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.Main outcome measurePlanned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach's ? was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.ResultsExploratory and confirmatory factor analyses identified 26 items on five factors: 'helping spouses plan their futures' 'helping caregivers alleviate any regrets regarding their care', 'understanding the bond between a couple', 'providing support for anticipatory grief', and 'addressing spousal caregivers' emotions after their spouses' deaths'. The final model showed acceptable goodness-of-fit indices. The Cronbach's ? for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.ConclusionsThis scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.

Project description:Although high-intensity caregiving has been found to be associated with a greater prevalence of mental health problems, little is known about the specifics of this relationship. This study clarified the burden of informal caregivers quantitatively and provided policy implications for long-term care policies in countries with aging populations. Using data collected from a nationwide five-wave panel survey in Japan, I examined two causal relationships: (1) high-intensity caregiving and mental health of informal caregivers, and (2) high-intensity caregiving and continuation of caregiving. Considering the heterogeneity in high-intensity caregiving among informal caregivers, control function model which allows for heterogeneous treatment effects was used.This study uncovered three major findings. First, hours of caregiving was found to influence the continuation of high-intensity caregiving among non-working informal caregivers and irregular employees. Specifically, caregivers who experienced high-intensity caregiving (20-40 h) tended to continue with it to a greater degree than did caregivers who experienced ultra-high-intensity caregiving (40 h or more). Second, high-intensity caregiving was associated with worse mental health among non-working caregivers, but did not have any effect on the mental health of irregular employees. The control function model revealed that caregivers engaging in high-intensity caregiving who were moderately mentally healthy in the past tended to have serious mental illness currently. Third, non-working caregivers did not tend to continue high-intensity caregiving for more than three years, regardless of co-residential caregiving. This is because current high-intensity caregiving was not associated with the continuation of caregiving when I included high-intensity caregiving provided during the previous period in the regression. Overall, I noted distinct impacts of high-intensity caregiving on the mental health of informal caregivers and that such caregiving is persistent among non-working caregivers who experienced it for at least a year. Supporting non-working intensive caregivers as a public health issue should be considered a priority.

Project description:IntroductionAlthough physical activity (PA) is crucial for health, the literature is mixed about how individuals' PA decisions are affected by their spouses. To fill this gap, we examined the extent to which providing care for one spouse affects the PA of the other spouse among those aged 50 or older in the United States.MethodsWe analyzed 9,173 older adults living with their spouses or partners from the 2004 to 2016 waves of the Health and Retirement Study. To identify the causal effect of spousal caregiving on the PA of older adults, we estimated individual-fixed effects models using a two-stage least squared instrumental variable approach with spousal falls as our instrument. We also estimated the models by splitting the sample by gender and race/ethnicity to identify heterogeneous impacts of spousal caregiving on PA decisions among subgroups.ResultsWe found that a one percentage point increase in the probability of providing care to spouses led to an increase in the probability of initiating moderate or vigorous PA (MVPA) by 0.34-0.52 percentage points. This effect was salient, especially among female and non-Hispanic white older adults.DiscussionCaregiving experience might provide opportunities to learn about caregiving burdens and trigger an emotional response about the salience of an event (i.e., they need care in the future). Older caregivers might start MVPA in an effort to improve or maintain their health and avoid burdening their families for caregiving in the future. This study demonstrated spousal influence on PA. Instead of delivering PA-promotion information (e.g., the harm of sedentary lifestyle and benefits of regular PA) to individuals, risk communication and education efforts on PA promotion might be more effective considering the family context. Family events such as health shocks or the emergence of caregiving needs from family members provide windows of opportunities for intervening. Subgroup differences should also be considered in targeted interventions.

Project description:BackgroundA key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients.MethodsTwenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.ResultsThe dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life.ConclusionThe dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.

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