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

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.

scholarly journals How Long Do Older Adults Remain Homebound in the Community? Implications for Long-Term Services and Support Systems

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 711-712
Author(s):  
Katherine Ornstein ◽  
Jennifer Reckrey ◽  
Evan Bollens-Lund ◽  
Katelyn Ferreira ◽  
Mohammed Husain ◽  
...  
Keyword(s):  
Older Adults ◽  
Functional Disability ◽  
Long Term Care ◽  
Models Of Care ◽  
Medicare Beneficiaries ◽  
Term Care ◽  
Nationally Representative ◽  
Survey Weighting ◽  
Growing Population

Abstract A large and growing population of older adults with multimorbidity, cognitive impairment, and functional disability live in the community but are homebound (never/rarely leave home). While homebound status is associated with decreased access to medical services and poor health outcomes, it is unclear how long individuals remain homebound. We used the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries age 65 and over, with survey weighting to assess duration of homebound status in the community. Among the incident homebound in 2016 (n=253) , only 28% remained homebound after 1 year. 21% died, 18% were recovered, and one-third left the home but still reported difficulty. As the locus of long-term care shifts from nursing homes to the community and models of care expand to serve the needs of the homebound, it is critical that we better understand the heterogeneity and transitions of the homebound population.

scholarly journals Hospital to Home: Supporting the Transition From Hospital to Home for Older Adults

2021 ◽  
pp. 084456212110443
Author(s):  
Brittany Barber ◽  
Lori Weeks ◽  
Lexie Steeves-Dorey ◽  
Wendy McVeigh ◽  
Susan Stevens ◽  
...  
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Family Caregivers ◽  
Older Adult ◽  
Long Term Care ◽  
Home Care Services ◽  
Term Care ◽  
Care Services ◽  
Hospital To Home

Background An increasing proportion of older adults experience avoidable hospitalizations, and some are potentially entering long-term care homes earlier and often unnecessarily. Older adults often lack adequate support to transition from hospital to home, without access to appropriate health services when they are needed in the community and resources to live safely at home. Purpose This study collaborated with an existing enhanced home care program called Home Again in Nova Scotia, to identify factors that contribute to older adult patients being assessed as requiring long-term care when they could potentially return home with enhanced supports. Methods Using a case study design, this study examined in-depth experiences of multiple stakeholders, from December 2019 to February 2020, through analysis of nine interviews for three focal patient cases including older adult patients, their family or friend caregivers, and healthcare professionals. Results Findings indicate home care services for older adults are being sought too late, after hospital readmission, or a rapid decline in health status when family caregivers are already experiencing caregiver burnout. Limitations in home care services led to barriers preventing family caregivers from continuing to care for older adults at home. Conclusions This study contributes knowledge about gaps within home care and transitional care services, highlighting the importance of investing in additional home care services for rehabilitation and prevention of rapidly deteriorating health.

scholarly journals Does High Caregiver Stress Predict Nursing Home Entry?

2009 ◽  
Vol 46 (2) ◽  
pp. 140-161 ◽  
Author(s):  
Brenda C. Spillman ◽  
Sharon K. Long
Keyword(s):  
Nursing Home ◽  
Strong Predictor ◽  
Stress Factors ◽  
Physical Strain ◽  
Term Care ◽  
Care Survey ◽  
Nursing Home Entry ◽  
Home Placement

This study estimates how informal care, paid formal care, and caregiver stress or burden relate to nursing home placement. Data came from the 1999 National Long Term Care Survey and were merged with administrative data. Results show that stress is a strong predictor of entry over follow-up periods of up to two years, and physical strain and financial hardship are important predictors of high levels of caregiver stress. The estimates indicate that reducing these stress factors would significantly reduce caregiver stress and, as a result, nursing home entry. We conclude that initiatives to reduce caregiver stress hold promise as a strategy to avoid or defer nursing home entry.

Interventions for Women As Family Caregivers

2001 ◽  
Vol 19 (1) ◽  
pp. 125-142 ◽  
Author(s):  
MARGARET J. BULL
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Nursing Practice ◽  
Long Term Care ◽  
Chronically Ill ◽  
Term Care ◽  
Family Caregiver Burden

Family caregivers are the mainstay of long-term care, as they enable chronically ill elders and children to remain at home. The majority of family caregivers are women and historically their caregiving role has been viewed as an extension of their roles as wife and mother. Although numerous studies report the stresses associated with family caregiving and are predictors of burden, less attention has been given to interventions for family caregivers. The objective of this review is to examine reports of interventions to reduce family caregiver burden, to consider their implications for nursing practice, and to identify directions for future nursing research.

scholarly journals Disaster Preparedness Among Older Japanese Adults With Long-Term Care Needs and Their Family Caregivers

2016 ◽  
Vol 11 (1) ◽  
pp. 31-38 ◽  
Author(s):  
Tomoko Wakui ◽  
Emily M. Agree ◽  
Tami Saito ◽  
Ichiro Kai
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Disaster Preparedness ◽  
Long Term Care ◽  
Community Support ◽  
The United States ◽  
Great East Japan Earthquake ◽  
Care Needs ◽  
Term Care

AbstractObjectiveIn the 2011 Great East Japan Earthquake, as in Hurricanes Katrina and Rita in the United States, older individuals were at the greatest risk of mortality. Much concern has been raised about developing plans to reduce these risks, but little information has been provided about preparedness, and the key role played by caregivers has been largely unexplored. The aims of this study were thus to examine the preparedness of family caregivers of older adults with long-term care needs and to identify the characteristics of older adults and their caregivers that are associated with poor preparedness and greater concern about disasters.MethodsShortly after the Great East Japan Earthquake, the second wave of the Fukui Longitudinal Caregiver Study was administered to the family caregivers of older Japanese individuals with long-term care needs. The sample included 952 caregivers from 17 municipalities in Fukui prefecture. Logistic regression analyses were used to identify the factors associated with self-assessed preparedness, evacuation planning, and caregivers’ concerns about preparedness.ResultsThe majority (75%) of the caregivers had no concrete plans for evacuation in an emergency, and those caring for persons with dementia were 36% less likely to have any plan. In multivariate models, caregivers who were more experienced and wealthier and who reported more family and community support were more likely to feel well prepared. Caregivers with poor health or limited financial resources or who were responsible for older persons with mobility difficulties reported higher levels of anxiety about their disaster preparedness.ConclusionsThis study indicates that most caregivers are ill prepared to respond in emergencies and that caregiver resources, community support, and the needs of older care recipients influence both preparedness and concern about disasters. Education for caregivers and the development of community support programs could provide important sources of assistance to this vulnerable group. (Disaster Med Public Health Preparedness. 2017;11:31–38)

scholarly journals Satisfaction With Outdoor Activities Over Time Among Long-Term Services and Supports Recipients

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 189-190
Author(s):  
Justine Sefcik ◽  
Karen Hirschman ◽  
Darina Petrovsky ◽  
Liming Huang ◽  
Nancy Hodgson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Assisted Living ◽  
Term Care ◽  
Chronic Health ◽  
Outdoor Activities ◽  
Services And Supports ◽  
Over Time

Abstract Approximately 85% of older adults have at least one chronic health condition. The onset of chronic health conditions and mobility issues can constrain activities, including outdoor recreation. There is limited knowledge of older adults receiving long-term services and supports (LTSS) and their satisfaction with outdoor activities over time after enrolling in services. This study examined predictors of change in ratings of satisfaction with outdoor activities. A secondary analysis was conducted of data involving structured interviews with older adults (N=470) over the first two years of receiving LTSS (Health-Related Quality of Life: Elders in Long-Term Care; R01AG025524). Participants lived in assisted living communities, nursing homes, or their home. A single item on satisfaction with outdoor activities (assessed using a 5-point Likert scale: not at all to extremely satisfied) was the primary outcome. Mixed effects linear regression modeling using a backward elimination process was used for building a final multivariable model. In the final model, older age (p<0.001) and higher overall quality of life ratings (p<0.001) at baseline were associated with slower rates of increase in outdoor satisfaction over time. Higher education level (p=0.035) at baseline was associated with a faster rate of increase in outdoor satisfaction over time. Additionally, those who moved into an assisted living community (p=0.024) or nursing home (p=0.016) at baseline were associated with faster rates of increase in outdoor satisfaction over time compared to those in the home. Knowledge of factors influencing satisfaction with outdoor activities can assist interdisciplinary teams implement interventions for individual or organizational changes.

Physician Communication with Family Caregivers of Long-Term Care Residents at the End of Life

2007 ◽  
Vol 55 (6) ◽  
pp. 846-856 ◽  
Author(s):  
Holly Biola ◽  
Philip D. Sloane ◽  
Christianna S. Williams ◽  
Timothy P. Daaleman ◽  
Sharon W. Williams ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Long Term Care ◽  
Physician Communication ◽  
Term Care

scholarly journals Comparing the resident populations of private and public long-term care facilities over a 15-year period: a study from Quebec, Canada

2014 ◽  
Vol 35 (10) ◽  
pp. 2039-2052 ◽  
Author(s):  
GINA BRAVO ◽  
MARIE-FRANCE DUBOIS ◽  
NICOLE DUBUC ◽  
LOUIS DEMERS ◽  
DANIÈLE BLANCHETTE ◽  
...  
Keyword(s):  
Older Adults ◽  
Residential Care ◽  
Severe Disabilities ◽  
Cross Sectional ◽  
Term Care ◽  
Public Facilities ◽  
Private And Public ◽  
Resident Populations ◽  
Over Time

ABSTRACTIn the province of Quebec, Canada, long-term residential care is provided by two types of facility: privately owned facilities in which care is privately financed and delivered and publicly subsidised accredited facilities. There are few comparative data on the residents served by the private and public sectors, and none on whether their respective population has changed over time. Such knowledge would help plan services for older adults who can no longer live at home due to increased disabilities. This study compared (a) the resident populations currently served by private and public facilities and (b) how they have evolved over time. The data come from two cross-sectional studies conducted in 1995–2000 and 2010–2012. In both studies, we randomly selected care settings in which we randomly selected older residents. In total, 451 residents from 145 settings assessed in 1995–2000 were compared to 329 residents from 102 settings assessed in 2010–2012. In both study periods, older adults housed in the private sector had fewer cognitive and functional disabilities than those in public facilities. Between the two study periods, the proportion of residents with severe disabilities decreased in private facilities while it remained over 80 per cent in their public counterparts. Findings indicate that private facilities care today for less-disabled older adults, leaving to public facilities the heavy responsibility of caring for those with more demanding needs. These trends may impact both sectors' ability to deliver proper residential care.

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

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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