Caregiving Hours Research Articles

Caregiving and Volunteering: Are Private and Public Helping Behaviors Linked?

The purpose of this study was to examine the relationship between two forms of helping behavior among older adults--informal caregiving and formal volunteer activity. To evaluate our hypotheses, we employed Tobit regression models to analyze panel data from the first two waves of the Americans' Changing Lives survey. We found that older adult caregivers were more likely to be volunteers than noncaregivers. Caregivers who provided a relatively high number of caregiving hours annually reported a greater number of volunteer hours than did noncaregivers. Caregivers who provided care to nonrelatives were more likely than noncaregivers to be a volunteer and to volunteer more hours. Finally, caregivers were more likely than noncaregivers to be asked to volunteer. Our results provide support for the hypothesis that caregivers are embedded in networks that provide them with more opportunities for volunteering. Additional research on the motivations for volunteering and greater attention to the context and hierarchy of caregiving and volunteering are needed.

Meeting Communication Needs: Topics of Talk in the Nursing Home

Nursing home residents primarily rely on staff for communication and interpersonal relationships. Challenged by staffing shortages and increasingly complex care, staff who provide the most communication with residents lack awareness and skills to effectively communicate with older adults. This study, a secondary analysis of staff-resident interactions from one nursing home, explores communication topics and the effects of an intervention. Staff from one unit were recorded during 2 hours of caregiving to provide a representative sample of their communication with residents. Staff then attended an educational program targeting improved awareness of communication needs and reducing "elderspeak". Recording was repeated post-intervention. Baseline conversations focused on activities of daily living (ADLs), personal-social, technical care, and health assessment. Post-intervention ADL talk decreased in staff-resident interactions, while personal-social topics increased. These findings suggest that residents' limited opportunities for communication with staff are primarily focused on care tasks. With increased communication awareness, staff can learn to modify conversational topics to better meet older adults' psychosocial needs.

Factors Affecting the Burden on Caregivers of Stroke Survivors in South Korea

Choi-Kwon S, Kim HS, Kwon SU, Kim JS. Factors affecting the burden on caregivers of stroke survivors in South Korea. Objective To elucidate the factors related to the caregiver burden in stroke survivors in Seoul, Korea. Design Cross-sectional study. Setting Outpatient clinic of a university hospital in Korea. Participants We randomly selected 340 stroke patients and evaluated them for 3 years poststroke. Among them, 147 caregivers and patients were finally interviewed. Interventions Patients’ demographic data, neurologic symptoms, depression, emotional incontinence, and Modified Rankin Scale (MRS) score were assessed. In addition, primary caregivers’ demographic data, hours of care per day, relationship with the patients, health status, anxiety and depression, and the presence of alternative caregivers were assessed. Main outcome measures Caregiver burden was evaluated with the Sense of Competence Questionnaire, which has 3 subdomains with a total of 27 items. Results Caregiver burden score was high as compared with reports from Western society. Patient factors related to the burden scores were being unemployed ( P<.05), the presence of diabetes mellitus ( P<.05), aphasia ( P<.01), dysarthria ( P<.05), dysphagia ( P<.01), cognitive dysfunction ( P<.01), severe MRS score ( P<.01), emotional incontinence ( P<.05), and depression ( P<.01). Caregiver factors related to high burden scores were being female ( P<.05), unemployment ( P<.01), being daughters-in-law ( P<.01), anxiety ( P<.01), depression ( P<.01), and long caregiving hours ( P<.05). On multivariate analysis, the most significant predictor for overall caregiver burden was caregiver anxiety followed by patient MRS score and caregivers being daughters-in-law. Caregiver depression, current employment status, and patient depression were also factors related to their burden. Conclusions Caregiver anxiety, patient physical deficits, and caregivers being daughter-in-law are important factors related to the caregiver burden in our population. Strategies to reduce caregiver burden should be developed based on understanding of these factors.

Caregiving stress, endogenous sex steroid hormone levels, and breast cancer incidence.

Stress is hypothesized to be a risk factor for breast cancer. The authors examined associations of hours of, and self-reported levels of stress from, informal caregiving with prospective breast cancer incidence. Cross-sectional analyses of caregiving and endogenous sex steroid hormones were also conducted. In 1992 or 1996, 69,886 US women from the Nurses' Health Study, aged 46-71 years at baseline, answered questions on informal caregiving; 1,700 incident breast cancer cases accrued over follow-up to 2000. A subset of 665 postmenopausal women not taking exogenous hormones returned a blood sample in 1990. Numbers of hours of care provided to an ill adult or to a child were each summed and analyzed as 0 (reference), 1-14, and >/=15 per week. Cox proportional hazards models were used in prospective analyses and linear models in cross-sectional analyses. High numbers of caregiving hours and self-reported stress did not predict a higher incidence of breast cancer. However, compared with women providing no adult care, women providing >/=15 hours of adult care (median, 54) had significantly lower levels of estradiol (geometric mean, 9.21 pg/ml vs. 7.46 pg/ml (95% confidence interval: 6.36, 8.76)) and bioavailable estradiol (geometric mean, 1.86 pg/ml vs. 1.35 pg/ml (95% confidence interval: 1.00, 1.82)). Stress from caregiving did not appear to increase breast cancer risk.

Direct Valuation of Personal Care by Huseholds

This paper valued the quantity of child, sick, and elderly care provided by house- holds using a new, direct measure. Such measures add to the literature that estimates the size of the contribution of non-market work by household members, particularly women, and to literature about valuation of childcare. This production remains unvalued in standard national income accounts. Traditional attempts to quantify this care multiplied care-giver hours by a wage rate, a method that suffers from several drawbacks, including omitting the contributions of anything but labor, the inability to handle joint production, and the use of an arbitrary wage rate. This study avoided these problems by valuing the amount of care with its market price based on data from a small urban area. The mean value was $3,547 annually (97 percent of it childcare) for all sample households and $9,610 for those providing care. The results afforded evidence of scale economies in parental childcare and quantified care furnished by different kinds of providers.

Publicly Funded and Family-Friend Care in the Case of Long-Term Illness: The Role of the Spouse

In recent years, considerable attention has been devoted to the value of unpaid work in the economy. One very important aspect of unpaid work is caregiving for chronically ill or disabled people and the question of whether or not family-and-friend caregiving eases the burden on the publicly funded system. Using data from the 1996 General Social Survey, this paper investigates the extent to which the presence of a spouse of a senior aged 55 and over with a long-term illness reduces the amount of publicly funded care received. The findings from the multivariate Tobit analysis show that the presence of the spouse does significantly reduce the amount of publicly funded care used. This result is not gender-specific. The total hours of caregiving by the spouse are valued, as well as the savings generated for the publicly funded system, and the policy issue of tax relief for spouses who are engaged in long-term caregiving is explored.

Health-related quality of life for caregivers of patients with Alzheimer disease.

We investigated the relationship of caregivers' health-related quality of life (HRQOL) to the burden of caring for patients with Alzheimer disease (AD) and resource utilization. Caregiver HRQOL was assessed using the SF-12 Mental and Physical Summary scores. Compared with a normative, age-adjusted sample, the 2477 caregivers had lower mental and physical scores (for the latter, only those <54 years of age). Increased caregiver mental functioning was associated with caregiver support and perceived quality of patient medical care, fewer hours of caregiving, and fewer patient behavioral symptoms. The burden of caregiving has substantial effects on HRQOL. Interventions that improve AD status and reduce caregiving hours have the potential to improve caregivers' HRQOL.

Respite for dementia caregivers: the effects of adult day service use on caregiving hours and care demands.

The objective of this study was to determine whether adult day service use was related to decreases in primary caregiving hours (i.e., the time caregivers spent on activities of daily living/instrumental activities of daily living and behavior problems for care recipients) and care recipient function for these domains. Three-month longitudinal data from the Adult Day Care Collaborative Study (N = 400) were used. Adult day service users reported greater decreases in hours spent on behavior problems when compared to nonusers, even after controlling for baseline differences between the two groups. In addition, adult day service users reported decreased frequency of behavior problems in their relatives who attended adult day programs. The findings suggest that adult day services, if used over time, are effective in restructuring caregiving time and may offer potential benefits not only to family caregivers but to community-residing older adults who have dementia as well.

Interactions between care-giving and paid work hours among European midlife women, 1994 to 1996

This paper uses data from the European Community Household Panel surveys of 1994 and 1996 to study the association between changes in care-giving and changes in weekly work hours. Our sample comprises women aged 45–59 years who participated in the labour force in at least one of the two years studied. Controlling for country variation, we find significant relationships between starting or increasing informal care-giving and changes in weekly work hours. No such association is found however among women terminating a care-giving commitment or reducing their care hours. Starting care-giving significantly reduces work hours for women in northern European countries (except Ireland). By contrast, women in southern Europe and Ireland respond to an increase in care-giving hours by a smaller increase or a higher decrease in work hours than non care-givers. In summary, our results show that the impact of care-giving on adjustments of weekly work hours is asymmetrical and that it differs in southern and northern Europe.

Adult day service use and reductions in caregiving hours: effects on stress and psychological well-being for dementia caregivers.

The objective of this study was to determine whether adult day service use interacts with decreases in primary caregiving hours (i.e. the time caregivers spent on activities of daily living/instrumental activities of daily living, memory problems, and behavior problems for patients) to alleviate caregiver stress and negative mental health over time. Three-month longitudinal data from the Adult Day Care Collaborative Study (n=400) were used. Decreases in memory problem hours among adult day service users were associated with reduced feelings of role overload; decreases in ADL hours among non-users were associated with decreases in worry and strain over a three-month period. The findings suggest that adult day services are potentially effective in restructuring caregiving time and providing respite to family members.

The incremental direct costs associated with behavioral symptoms in AD.

To determine the incremental costs associated with behavioral symptoms in patients with AD. A total of 128 patients with probable AD were enrolled into this study. Cognitive function and extrapyramidal features were assessed in patients with AD. Caregivers were interviewed to determine use of health care services, receipt of unpaid care, severity of behavioral symptoms (Neuropsychiatric Inventory [NPI]), and comorbid medical conditions in patients with AD. Healthcare utilization data were multiplied by unit costs to estimate direct formal costs. Unpaid caregiving hours were multiplied by an hourly wage to estimate direct informal costs. The annual incremental direct costs of additional behavioral symptoms were estimated with multiple regression equations. Annual, direct costs were significantly higher in patients with AD at or above the median score on the NPI (high NPI group), after adjusting for group differences in severity of cognitive impairment and comorbid conditions. Patients in the high NPI group had formal costs between US$3,162 and US$5,919 higher than the low NPI group and total direct costs between US$10,670 and US$16,141 higher, depending on the severity of cognitive impairments. Models for the entire sample estimated that a one-point increase in the NPI score would result in an annual increase of between US$247 and US$409 in total direct costs, depending on the value of unpaid caregiving. Behavioral symptoms in patients with AD significantly increase direct costs of care.

Informal Caregiving for Chronic Lung Disease Among Older Americans

To obtain nationally representative estimates of the additional time, and related cost, of unpaid family caregiving (informal caregiving) associated with chronic lung disease among older Americans. Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people > or = 70 years old (n = 7,443). National population-based sample of the community-dwelling elderly. Weekly hours of informal caregiving, and imputed cost of caregiver time, for community-dwelling elderly who reported the following: (1) no lung disease, (2) lung disease without associated activity limitations, or (3) lung disease with associated activity limitations. After adjusting for sociodemographic variables, potential caregiver network, and comorbid conditions, individuals with chronic lung disease and associated activity limitations (n = 403) received an additional 5.1 h/wk of informal care when compared to those with no lung disease (n = 6,593; p < 0.001). The associated additional yearly cost of informal care per case was $2,200 USD. This represents a national annual cost of informal caregiving for chronic lung disease of > $2 billion USD. The quantity and associated economic cost of informal caregiving for elderly individuals with chronic lung disease are substantial. These costs to families and society must be accounted for if the full societal costs of chronic lung disease are to be calculated. Pulmonary physicians caring for elderly individuals with chronic lung disease should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.

A national study of the quantity and cost of informal caregiving for the elderly with stroke.

As the US population ages, increased stroke incidence will result in higher stroke-associated costs. Although estimates of direct costs exist, little information is available regarding informal caregiving costs for stroke patients. To determine a nationally representative estimate of the quantity and cost of informal caregiving for stroke. The authors used data from the first wave of the Asset and Health Dynamics (AHEAD) Study, a longitudinal study of people over 70, to determine average weekly hours of informal caregiving. Two-part multivariable regression analyses were used to determine the likelihood of receiving informal care and the quantity of caregiving hours for those with stroke, after adjusting for important covariates. Average annual cost for informal caregiving was calculated. Of 7,443 respondents, 656 (8.8%) reported a history of stroke. Of those, 375 (57%) reported stroke-related health problems (SRHP). After adjusting for cormorbid conditions, potential caregiver networks, and sociodemographics, the proportion of persons receiving informal care increased with stroke severity, and there was an association of weekly caregiving hours with stroke +/- SRHP (p < 0.01). Using the median 1999 home health aide wage (8.20 dollars/hour) as the value for family caregiver time, the expected yearly caregiving cost per stroke ranged from 3,500 dollars to 8,200 dollars. Using conservative prevalence estimates from the AHEAD sample (750,000 US elderly patients with stroke but no SRHP and 1 million with stroke and SRHP), this would result in an annual cost of up to 6.1 billion dollars for stroke-related informal caregiving in the United States. Informal caregiving-associated costs are substantial and should be considered when estimating the cost of stroke treatment.

Informal caregiving time and costs for urinary incontinence in older individuals in the United States.

To obtain nationally representative estimates of the additional time, and related cost, of informal caregiving associated with urinary incontinence in older individuals. Multivariate regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people aged 70 and older (N = 7,443). Community-dwelling older people. National population-based sample of community-dwelling older people. Weekly hours of informal caregiving, and imputed cost of caregiver time, for community-dwelling older people who reported (1) no unintended urine loss, (2) incontinence that did not require the use of absorbent pads, and (3) incontinence that required the use of absorbent pads. Thirteen percent of men and 24% of women reported incontinence. After adjusting for sociodemographics, living situation, and comorbidities, continent men received 7.4 hours per week of care, incontinent men who did not use pads received 11.3 hours, and incontinent men who used pads received 16.6 hours (P <.001). Women in these groups received 5.9, 7.6, and 10.7 hours (P <.001), respectively. The additional yearly cost of informal care associated with incontinence was $1,700 and $4,000 for incontinent men who did not and did use pads, respectively, whereas, for women in these groups, the additional yearly cost was $700 and $2,000. Overall, this represents a national annual cost of more than $6 billion for incontinence-related informal care. The quantity of informal caregiving for older people with incontinence and its associated economic cost are substantial. Future analyses of the costs of incontinence, and the cost-effectiveness of interventions to prevent or treat incontinence, should consider the significant informal caregiving costs associated with this condition.

Nurse staffing levels in American hospitals: A 2001 report

Nurse staffing levels in American hospitals: A 2001 report

National estimates of the quantity and cost of informal caregiving for the elderly with dementia

Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia. Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people age 70 years or older (N = 7,443). National population-based sample of the community-dwelling elderly. Incremental weekly hours of informal caregiving and incremental cost of caregiver time for those with mild dementia, moderate dementia, and severe dementia, as compared to elderly individuals with normal cognition. Dementia severity was defined using the Telephone Interview for Cognitive Status. After adjusting for sociodemographics, comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P < .001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P < .001), respectively. The associated additional yearly cost of informal care per case was 3,630 dollars for mild dementia, 7,420 dollars for moderate dementia, and 17,700 dollars for severe dementia. This represents a national annual cost of more than 18 billion dollars. The quantity and associated economic cost of informal caregiving for the elderly with dementia are substantial and increase sharply as cognitive impairment worsens. Physicians caring for elderly individuals with dementia should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.

National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia*

OBJECTIVE: Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia. DESIGN: Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people age 70 years or older (N=7,443). SETTING: National population-based sample of the community-dwelling elderly. MAIN OUTCOME MEASURES: Incremental weekly hours of informal caregiving and incremental cost of caregiver time for those with mild dementia, moderate dementia, and severe dementia, as compared to elderly individuals with normal cognition. Dementia severity was defined using the Telephone Interview for Cognitive Status. RESULTS: After adjusting for sociodemographics, comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P<.001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P<.001), respectively. The associated additional yearly cost of informal care per case was $3,630 for mild dementia, $7,420 for moderate dementia, and $17,700 for severe dementia. This represents a national annual cost of more than $18 billion. CONCLUSION: The quantity and associated economic cost of informal caregiving for the elderly with dementia are substantial and increase sharply as cognitive impairment worsens. Physicians caring for elderly individuals with dementia should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.

Relationship between self-reported disability and caregiver hours.

In a large, population-based cohort of patients with spinal cord dysfunction, we assessed the relationship between self-reported physical function and hours of care received. Data were obtained by a cross-sectional, self-administered survey used to help establish a national registry of veterans with spinal cord dysfunction. Participants were originally identified from Department of Veterans Affairs databases as having a high probability of spinal cord dysfunction. All 13,542 respondents reporting spinal cord dysfunction and also having complete data on physical function and caregiver hours (CGHs) were included. Physical function was measured using the Self-Reported Functional Measure, and CGHs were obtained from a self-report of hours of caregiving received during the last 2 wk. The relationship between self-reported disability and CGHs was strong (Spearman correlation = -0.70). Subjects with moderate levels of disability had the most variability in CGHs. After stratifying by total Self-Reported Functional Measure score, the strongest predictors of CGHs were instrumental activities of daily living and individual Self-Reported Functional Measure items, explaining a moderate amount of variation in CGHs. These data support the construct validity of the Self-Reported Functional Measure and suggest that self-reported disability measures can be of use in describing the clinical epidemiology of patients with spinal cord dysfunction.

Estimating the cost of informal caregiving for elderly patients with cancer.

As the United States population ages, the increasing prevalence of cancer is likely to result in higher direct medical and nonmedical costs. Although estimates of the associated direct medical costs exist, very little information is available regarding the prevalence, time, and cost associated with informal caregiving for elderly cancer patients. To estimate these costs, we used data from the first wave (1993) of the Asset and Health Dynamics (AHEAD) Study, a nationally representative longitudinal survey of people aged 70 or older. Using a multivariable, two-part regression model to control for differences in health and functional status, social support, and sociodemographics, we estimated the probability of receiving informal care, the average weekly number of caregiving hours, and the average annual caregiving cost per case (assuming an average hourly wage of $8.17) for subjects who reported no history of cancer (NC), having a diagnosis of cancer but not receiving treatment for their cancer in the last year (CNT), and having a diagnosis of cancer and receiving treatment in the last year (CT). Of the 7,443 subjects surveyed, 6,422 (86%) reported NC, 718 (10%) reported CNT, and 303 (4%) reported CT. Whereas the adjusted probability of informal caregiving for those respondents reporting NC and CNT was 26%, it was 34% for those reporting CT (P <.05). Those subjects reporting CT received an average of 10.0 hours of informal caregiving per week, as compared with 6.9 and 6.8 hours for those who reported NC and CNT, respectively (P <.05). Accordingly, cancer treatment was associated with an incremental increase of 3.1 hours per week, which translates into an additional average yearly cost of $1,200 per patient and just over $1 billion nationally. Informal caregiving costs are substantial and should be considered when estimating the cost of cancer treatment in the elderly.

A National Study of the Quantity and Cost of Informal Caregiving for the Elderly with Stroke

56 Background: As the US population ages, increased stroke incidence will result in higher stroke-associated costs. While estimates of direct costs exist, little information is available regarding informal caregiving costs for stroke patients. Objective: To determine a nationally representative estimate of the quantity and cost of informal caregiving for elderly stroke patients. Methods: We used data from the first wave (1993) of the Asset and Health Dynamics (AHEAD) Study, a longitudinal study of people over 70 living in the community, to determine average weekly hours of informal caregiving. Multivariate and logistic regression analyses were performed to examine association of stroke and other covariates and assess the probability of receiving informal care. Average annual cost for informal caregiving was calculated. Results: Of the 7443 respondents, 656 (6%) reported a history of stroke. Of those, 375 (57%) reported stroke-related health problems (SRHP). After adjusting for cormorbid conditions, social support and sociodemographics, the proportion of patients receiving informal care increased with stroke severity, and there was a significant association of weekly hours of caregiving with stroke category (p&lt;0.01). Using the mean 1998 wage for a home health aide ($8.20/hr.) as the value for family caregiver time, the expected yearly caregiving cost per stroke ranged from $3500 to $7600, which would result in an annual cost of more than $5.7 billion for stroke-related informal caregiving in the US. Conclusions: The economic burden of informal caregiving following stroke has not been studied previously. Informal caregiving occurs frequently; associated costs are substantial and should be considered when estimating the cost of stroke treatment.