Estimating the Quantity and Economic Value of Family Caregiving for Community-Dwelling Older Persons in the Last Year of Life

OBJECTIVES: To estimate the quantity and economic value of informal care provided to older persons during their final year of life in the community.
DESIGN: Retrospective analysis of publicly available nationally representative survey data.
SETTING: This retrospective study used data from the Health and Retirement Study, a nationally representative, longitudinal study of community-dwelling older people.
PARTICIPANTS: Older people who died between 2000 and 2002.
MEASUREMENTS: Data were extracted from the 2002 "exit survey" and linked with characteristics of caregivers from the helper file. Ordinary least squares regression was used to estimate hours of informal caregiving for community-dwelling older people (N=990). Adjusted hours were multiplied by the 2002 national average home aide wage ($9.16 per hour). Sensitivity tests were performed using the 10th percentile wage rate ($6.56) and 90th percentile wage rate ($12.34).
RESULTS: Older people who died in the community received on average 65.8 hours per week of informal care in the last year of life. The estimated economic value ranges from $22,514 to $42,351, which is equivalent to the annual direct replacement cost with a home aide in 2002.
CONCLUSION: Family members provide substantial assistance during the last year of life for older people who die in the community. If the informal care provided in the last year of life is replaced with a home aide, the total economic value for the United States would be approximately $1.4 billion (in 2002).     

Illness Perceptions and Quality of Life in Patients with Chronic Obstructive Pulmonary Disease

This study aimed at identifying cognitive and emotional representations relevant for improving health care communication and quality of life (QoL) in patients with chronic obstructive pulmonary disease (COPD). One-hundred-seventy-one COPD outpatients completed questionnaires on illness perceptions and QoL. After controlling for the effects of age, pulmonary function, and dyspnea, patients with decreased attention to symptoms, with more positive beliefs about the effects and outcomes of their illness, and with less strong emotional reactions to the illness, had higher QoL scores. The results of this study are discussed in relation to the associations found in other illnesses.     

Trajectories of Quality of Life in Older Persons with Advanced Illness

OBJECTIVES: To examine subjective ratings of quality of life (QoL) in older adults with advanced illness. DESIGN: Observational cohort study with interviews at least every 4 months for up to 2 years conducted between December 1999 and December 2002. SETTING: Participants' homes. PARTICIPANTS: One hundred eighty‐five community‐dwelling individuals aged 60 and older with advanced cancer, heart failure, or chronic obstructive pulmonary disease. MEASUREMENTS: Participants were asked how they would rate their overall QoL. RESULTS: Of participants who died, 46% reported good or best possible QoL at their final interview, 21% reported improvement in QoL from their penultimate to final interview, and 39% reported no change. Forty‐nine percent of participants reported two or more changes in the direction of their QoL trajectories (e.g., QoL improved then declined). As measured over time in a multivariable longitudinal regression analysis, greater activity of daily living disability (adjusted odds ratio (AOR)=0.85, 95% confidence interval (CI)=0.75–0.95) and depressed mood (AOR=0.42, 95%CI=0.27–0.66) were associated with poorer QoL, whereas better self‐rated health (AOR=4.79, 95% CI=2.99–7.69) and having grown closer to one's church (AOR=1.99, 95% CI=1.17–3.39) were associated with better QoL. CONCLUSION: Although declining QoL is not an inevitable consequence of advancing illness, individuals' ratings of QoL are highly variable over time, suggesting that temporary factors may influence subjective QoL. Functional status, depression, and connection to one's religious community are shared determinants of QoL.     

Preliminary Evidence for the Validity and Reliability of the Caregiver Reaction Scale

Objective: Reliable and valid measures of caregiver experience are critical components of researching the caregiver experience and providing effective care to family caregivers. Assessments should be comprehensive, including positive aspects of caregiving as well as multiple dimensions of stress and burden (Family Caregiver Alliance, 2006). One such measure is the Caregiver Reaction Scale (CRS), a clinical tool adapted from research protocols in 1990.

Methods: This study is a preliminary examination of the psychometric properties of the CRS using a sample of family caregivers (N = 502) seeking services at a community based mental health and aging family service agency.

Results: The eight subscales of the CRS exhibited very good internal reliability α ≥ .81. Test-retest reliability was r ≥ .62, and convergent validity evidence is positive. Means and standard deviations are reported.

Conclusions: Initial psychometrics suggest the CRS offers a reliable and valid assessment of multiple dimensions of the caregiving experience and warrants further research.     

Chronic Critical Illness: The Limbo Between Life and Death

The entity of chronic critical illness (CCI) has shown a rise in the past decades for popularity and prevalence. CCI is loosely defined as the group of patients who require the intensive care setting for weeks to months; its hallmark is prolonged mechanical ventilation. The outcomes of chronically critically ill patients have been dismal and have not improved over time; 1-year survival hovers at approximately 50%. Given the high mortality, prognostic variables are important when making medical decisions. CCI encompasses a syndrome that includes altered pathophysiology across a variety of organ systems. Another crucial element of CCI is the symptom burden that patients experience which include feelings of dyspnea, difficulty communicating and pain. This patient population necessitates the combined efforts of multiple care teams and the early integration of palliative and critical care. Future directions need to include improving the symptom management and communication for patients with CCI.     

The Oldest Old in the Last Year of Life: Population-Based Findings from Cambridge City over-75s Cohort Study Participants Aged 85 and Older at Death

OBJECTIVES: To characterize people of advanced old age in their last year of life and compare those dying in their late 80s with those dying aged 90 and older to inform policy and planning.
DESIGN: Retrospective analysis of prospectively collected population-based data from the Cambridge City over-75s Cohort (CC75C) Study, United Kingdom.
PARTICIPANTS: Men and women aged 85 and older at death who died less than 1 year after taking part in any CC75C survey (N=321).
MEASUREMENTS: Physical health, functional disability, self-rated health, cognitive status.
RESULTS: Functional and cognitive impairments were markedly higher for those who died aged 90 and older— predominantly women—than for those who died aged 85 to 89. At least half (49.4–93.6%) of subjects aged 90 and older needed maximum assistance in virtually every daily activity; those aged 85 to 89 needed this only for shopping and laundry. Disability in basic and instrumental activities rose from 59.1% before to 85.4% after the age of 90 and cognitive impairment (Mini-Mental State Examination score ≤21) from 41.7% to 69.4%. Despite this and proximity to death, 60.5% and 67.0%, respectively, rated their health positively. Only one in five reported needing more help.
CONCLUSION: This study provides new data identifying high levels of physical and cognitive disability in very old people in the year before death. As the very old population rises, so will support needs for people dying in extreme old age. The mismatch between health perceptions and functional limitations suggests that these vulnerable older adults may not seek help from which they could benefit. These findings have major policy and planning implications for end-of-life care for the oldest old.