Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers

AbstractBackground and ObjectivesThis study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia.Research Design and MethodsSubjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain.ResultsCaregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed.Discussion and ImplicationsCaregivers’ perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers’ employment status may have complex associations with their feelings of stress over time.

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2400 How have characteristics of end-of-life family caregiving changed from 1999 to 2015? Preliminary results from two waves of nationally representative data

Journal of Clinical and Translational Science ◽

10.1017/cts.2018.286 ◽

2018 ◽

Vol 2 (S1) ◽

pp. 82-82

Author(s):

Judith Vick ◽

Jennifer Wolff

Keyword(s):

Older Adults ◽

End Of Life ◽

Family Caregivers ◽

Family Caregiving ◽

Physical Strain ◽

Term Care ◽

Care Survey ◽

Nationally Representative ◽

Over Time

OBJECTIVES/SPECIFIC AIMS: Family members are often critical in the delivery of hands-on care and decisions about care for persons approaching end-of-life (EOL). Prompted by concerns about the poor quality and high costs of care at the EOL, recent delivery reform efforts—such as the growth of hospice and palliative care—have been directed at improving EOL care for both patients and family. Trends of the characteristics of EOL family caregivers and care recipients over time have not been well described. The goal of this study is to evaluate changes in EOL family caregiving from 1999 to 2015. METHODS/STUDY POPULATION: This study uses reconciled data from two nationally representative surveys and their linked caregiver surveys: the 1999 wave of the National Long-Term Care Survey (NLTCS) and the Informal Care Survey (ICS), and the 2015 wave of the National Health and Aging Trends Study (NHATS) and the National Survey of Caregiving (NSOC). RESULTS/ANTICIPATED RESULTS: Crude analysis shows that older adults living in the community and receiving help from family caregivers in the last year of life were significantly better educated (72% with greater than 12 years of education vs. 46%), and more diverse (78% White vs. 89%) in 2015 compared with 1999. Family caregivers in the last year of life were less likely to be female in 2015 compared with 1999 (74% vs. 68%, NS) and significantly less likely to be spouses (45% vs. 38%) in 2015. In 2015, a significantly greater proportion of older adults received help with five or more activities of daily living (47% vs. 34%), but family caregivers reported significantly lower levels of caregiving-associated distress: financial strain (80% reporting none in 2015 vs. 53%), emotional (51% vs. 39%), and physical strain (70% vs. 45%). In addition, a significantly greater proportion of EOL family caregivers used respite care in 2015 compared to 1999 (15% vs. 4%). DISCUSSION/SIGNIFICANCE OF IMPACT: Changes in the experience of EOL family caregiving may be impossible to capture in studies of single interventions, but tracking nationally representative trends can be used as an indicator of broader changes that take place cumulatively over time. Although studies of this nature cannot identify causal mechanisms of change, they are important to monitor long-term impact of program implementation and to guide future research, policy, and resource allocation.

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Family Caregiver Role in the Long-Term Services and Supports of Individuals With Dementia Over Time

Innovation in Aging ◽

10.1093/geroni/igaa057.1571 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 486-486

Author(s):

Jennifer Reckrey ◽

Evan Bollens-Lund ◽

Mohammed Husain ◽

Katherine Ornstein ◽

Amy Kelley

Keyword(s):

Family Caregivers ◽

Adult Children ◽

Levels Of Care ◽

The Hours ◽

Total Care ◽

Nationally Representative ◽

Services And Supports ◽

Caregiver Role ◽

Over Time

Abstract Family caregivers of persons living with dementia (PLWD) provide disproportionately high levels of care over a long and variable disease course, yet an understanding of the trajectory of care hours provided over time and the contributions of individual family members to overall care is lacking. This study used longitudinal data from the nationally representative Health and Retirement Study in order to compare the hours of care that spouses, children, and other family caregivers provide to those with and without dementia. During the last 10 years of life, family caregivers of PLWD provided nearly three times as many total care hours as compared to others (7,447 vs. 2,653 total hours). While care hours provided to PLWD increased steadily in each of the last 10 years of life (going from 4 hours/week 10 years before death to 33 hours/week the year before death, average annual increase 27%), care hours provided to others remained low and then nearly tripled in the last year of life to 22 hours/week on average. Adult children of PLWD provided 50% of total care hours, while adult children of others provided 41% of care hours. This study provides important insight into the high levels of year-over-year caregiving provided to PLWD by their family caregivers in general and by adult children in particular. Policies to support these caregivers must shift from short-term, episodic support to sustained assistance in acknowledgment of the key role family caregivers play in the long-term services and supports of PLWD.

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Employment Changes among Chinese Family Caregivers of Long-Term Cancer Survivors

10.21203/rs.3.rs-32841/v1 ◽

2020 ◽

Author(s):

Siqi Liu ◽

Mingzhu Su ◽

Nengliang Yao ◽

Nan Zhang ◽

Jialin Wang ◽

...

Keyword(s):

Cancer Survivors ◽

Family Caregivers ◽

Employment Status ◽

Treatment Phase ◽

Working Hours ◽

Post Treatment ◽

Chinese Family ◽

Cross Sectional ◽

Economic Productivity

Abstract Background To describe the effect that providing cancer care to long-term cancer survivors has on the employment status of family caregivers (FCGs), and identify cancer-related characteristics that influence FCGs’ employment status in the post-treatment phase in China. Methods We surveyed 1155 cancer survivors (>1 year since completing treatment) from the cross‐sectional study “China Survey of Experiences with Cancer”. Participants reported changes in employment status of their FCGs. Descriptive statistics characterized the sample of survivors and FCGs’ employment status. Separate multivariable logistic regression models were conducted to examine the association between participant cancer characteristics and changes in FCGs’ employment status. Results In the primary treatment phase, 45.6% of all FCGs reduced their working hours and 17.4% stopped working altogether. In the post-treatment phase, 25.2% of FCGs reduced working hours and 6.6% stopped working. A higher probability of change in employment status among FCGs was associated with the following cancer-related characteristics: late-stage diagnosis, chemotherapy treatment, comorbidity, and limited ability to perform physical and mental tasks. Conclusions Cancer treatment and post-treatment demands may have a great number of impacts on the employment and economic productivity of Chinese FCGs. Interventions to assist them in maintaining employment are warranted across the whole survivorship trajectory.

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Employment Changes among Chinese Family Caregivers of Long-Term Cancer Survivors

10.21203/rs.3.rs-32841/v2 ◽

2020 ◽

Author(s):

Siqi Liu ◽

Mingzhu Su ◽

Nengliang Yao ◽

Nan Zhang ◽

Jialin Wang ◽

...

Keyword(s):

Cancer Survivors ◽

Family Caregivers ◽

Employment Status ◽

Treatment Phase ◽

Working Hours ◽

Post Treatment ◽

Chinese Family ◽

Cross Sectional ◽

Economic Productivity

Abstract Background: Family caregivers (FCGs) play a key role in the plan of care provision for long-term cancer survivors, yet few studies have been conducted as for the corresponding influence on them. This study aimed to better understand the effect of such a role on the employment status of FCGs, and identify cancer-related characteristics that influence FCGs’ employment status in the post-treatment phase in China. Methods: We surveyed 1155 cancer survivors (>1 year since completing treatment) from the cross‐sectional study “China Survey of Experiences with Cancer”. Participants reported changes in employment status of their FCGs. Descriptive statistics characterized the sample of survivors and FCGs’ employment status. Separate multivariable logistic regression models were conducted to examine the association between participant cancer characteristics and changes in FCGs’ employment status.Results: In the primary treatment phase, 45.6% of all FCGs reduced their working hours and 17.4% stopped working altogether. In the post-treatment phase, 25.2% of FCGs reduced working hours and 6.6% stopped working. A higher probability of change in employment status among FCGs was associated with the following cancer-related characteristics: late-stage diagnosis, chemotherapy treatment, comorbidity, and limited ability to perform physical and mental tasks.Conclusions: Cancer treatment and post-treatment demands may have a great number of impacts on the employment and economic productivity of Chinese FCGs. Interventions to assist them in maintaining employment are warranted across the whole survivorship trajectory.

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Change in Pain Status and Subsequent Opioid and Marijuana Use Among Long-Term Adult Survivors of Childhood Cancer

JNCI Cancer Spectrum ◽

10.1093/jncics/pkaa070 ◽

2020 ◽

Vol 4 (6) ◽

Author(s):

I-Chan Huang ◽

Nicole M Alberts ◽

Merrion G Buckley ◽

Zhenghong Li ◽

Matthew J Ehrhardt ◽

...

Keyword(s):

Childhood Cancer ◽

Marijuana Use ◽

Adult Survivors ◽

Opioid Use ◽

Status Change ◽

Pain Status ◽

Survivors Of Childhood Cancer ◽

Over Time

Abstract We evaluated pain status change and associations with subsequent opioid/marijuana use among 1208 adult survivors of childhood cancer. Pain status and opioid/marijuana were self-reported at baseline and follow-up evaluation (mean interval = 4.2 years). Over time, 18.7% of survivors endorsed persistent/increasing significant pain; 4.8% and 9.0% reported having used opioids and marijuana at follow-up. Persistent/increased (vs none/decreased) pain, persistent/increased (vs none/decreased) anxiety, and lack of health insurance increased odds of subsequent opioid use by 7.69-fold (95% confidence interval [CI] = 3.71 to 15.95), 2.55-fold (95% CI = 1.04 to 6.24), and 2.50-fold (95% CI = 1.07 to 5.82), respectively. Persistent/increased (vs none/decreased) depression increased odds of subsequent marijuana use by 2.64-fold (95% CI = 1.10 to 6.33).

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A Long and Winding Road: Dementia Caregiving With Grit and Grace

Innovation in Aging ◽

10.1093/geroni/igz021 ◽

2019 ◽

Vol 3 (3) ◽

Cited By ~ 1

Author(s):

Karen A Roberto ◽

Brandy Renee Mccann ◽

Rosemary Blieszner ◽

Jyoti Savla

Keyword(s):

Life Course Perspective ◽

Care Recipient ◽

Best Interest ◽

Dementia Caregivers ◽

The Face ◽

Relational Outcomes ◽

And Behavior ◽

Design And Methods ◽

Over Time

Abstract Background and Objectives Many dementia caregivers provide care for numerous years. Exhibiting grit, or commitment and persistence in the face of adversity, may bolster their ability to manage caregiving challenges. We explored grit in relationship to memory and behavior problems and response to stressors among women engaged in long-term dementia care. Research Design and Methods Informed by a life course perspective, and guided by stress-process theory, we interviewed 10 women with a spouse or parent initially diagnosed with mild cognitive impairment 4 times over 10 years. Using Charmaz’s analysis methods and grit as a sensitizing concept, we employed an unfolding analytic strategy involving (a) thematic analysis to identify expressions of grit in response to caregiving stressors across interviews and (b) case-by-case comparisons to assess associations of grit with the use of care strategies across caregivers over time. Results Dementia caregivers experienced unrelenting and changing psychosocial and physical challenges. Over time, most women exhibited a sustained commitment to the relationship through the ways in which they protected the identity of the person with dementia, modified their expectations for emotional intimacy, and managed their financial affairs. They persevered as their roles and relationships fluctuated, often finding purpose and relief through employment and leisure pursuits. As care intensified, women who took charge and consciously made decisions in the best interest of the care recipient and themselves minimized stress. Discussion and Implications While some caregivers exhibited grit from the outset, all showed enhanced perseverance and commitment to the ways they managed memory-related changes over time. Developing confidence in their ability to manage and provide care helped the caregivers respond to stressors with purpose and sustain their roles and responsibilities. Enhancing grit in long-term dementia caregivers may result in better individual and relational outcomes.

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State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

10.15868/socialsector.25076 ◽

2014 ◽

Cited By ~ 7

Author(s):

Susan C. Reinhard Reinhard ◽

Ari Houser Houser ◽

Enid Kassner Kassner ◽

Robert Mollica Mollica ◽

Kathleen Ujuari Ujuari ◽

...

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Physical Disabilities ◽

Services And Supports ◽

People With Physical Disabilities

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Presence of Liver Steatosis Is Associated With Greater Diabetes Remission After Gastric Bypass Surgery

10.2337/figshare.13166255 ◽

2020 ◽

Author(s):

Roman Vangoitsenhoven ◽

Rickesha Wilson ◽

Deepa V Cherla ◽

Chao Tu ◽

Sangeeta R Kashyap ◽

...

Keyword(s):

Gastric Bypass ◽

Metabolic Surgery ◽

Gastric Bypass Surgery ◽

Liver Steatosis ◽

Multivariable Analysis ◽

Diabetes Remission ◽

Independent Association ◽

Glycemic Outcomes ◽

Design And Methods

Objective: Type 2 diabetes mellitus (T2DM) is characterized by insulin resistance (IR) and beta-cell dysfunction. Ectopic fat accumulation in liver and muscle causes IR. Since bariatric and metabolic surgery significantly improves fatty liver disease, <a>we hypothesized that coexistence of liver steatosis (i.e., when hepatic IR contributes in T2DM) would be associated with greater diabetes improvement after surgery.</a> Research design and methods: A total of 519 patients with T2DM who underwent Roux-en-Y gastric bypass and simultaneous liver biopsy and had a minimum 5-year follow-up were analyzed to assess the independent association between biopsy-proven liver steatosis and postoperative long-term diabetes remission (glycated hemoglobin < 6.5% off medications). Results: Of the 407 patients with biopsy-proven liver steatosis, long-term diabetes remission was achieved in 211 (52%) patients, compared with 44/112 (39%) remission in patients without steatosis (P=0.027). In multivariable analysis, presence of liver steatosis was an independent predictor of long-term diabetes remission (odds ratio 1.96, [95% confidence interval 1.04 – 3.72], P=0.038). Hepatocyte ballooning, lobular inflammation, or fibrosis at baseline did not predict diabetes remission. Conclusion: This study, for the first time, suggests that in patients with T2DM who are considering bariatric and metabolic surgery, coexistence of liver steatosis is associated with better long-term glycemic outcomes. Furthermore, our data suggest that there are different variants of T2DM wherein metabolic responses to surgical weight loss are different. A subgroup of patients whose T2DM is characterized by the presence of hepatic steatosis (presumably associated with worse IR) experience better postoperative metabolic outcomes.

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