Caregiver Time Research Articles

Energy requirements of children with cerebral palsy.

Energy requirements of children and adolescents with cerebral palsy appear to be disease-specific and different from the current recommendations for healthy children, varying depending upon functional capacity, degree of mobility, severity of disease, and level of altered metabolism. Feeding problems are prevalent in many of these children, and can result in inadequate energy intake. Wasting of voluntary muscles, a common symptom of cerebral palsy, contributes to reduced resting energy needs; nevertheless, the location of the central nervous system lesion may also influence energy requirements. To guarantee individualized, accurate, and optimal energy recommendations for this population, resting energy expenditure should preferentially be measured by indirect calorimetry. Equations and formulae to predict healthy people's resting energy expenditure are available, but tend to overestimate these children's energy needs. Future studies should address the role of the central nervous system in regulating energy metabolism in this population. When adequately nourished, children and adolescents with cerebral palsy appear more tranquil and require decreased feeding time, which gives caregivers time to develop the child's functional independence and character. Understanding energy requirements of this population will provide caregivers and health professionals with guidelines for providing optimal nutritional status.

The impact of anemia treatment visits on the patient and their caregiver

8114 Background: Anemia-related fatigue can decrease the quality of life in cancer patients (pts) receiving chemotherapy (ctx). Methods: This study used a cross-sectional survey design. Eligible pts had a diagnosis of cancer, were receiving ctx, and received either an erythropoietic agent or a colony-stimulating factor the month prior to the survey. The survey was administered by the study nurse as a semi-structured interview. Pt characteristics, impact of ctx-related anemia treatment on pt and caregiver time, pt activities affected by visits, and caregiver support activities were captured. Results: To date, data from 1960 pts at 72 outpatient oncology clinics were analyzed (mean age 62 years, SD:13years; 63% female). Most common tumor types were breast (28%) and lung (21%). Most common ctx dosing schedule was Q3W (37%). Most (75%) received an erythropoietic agent (39% darbepoetin alfa, 36% epoetin alfa). Almost all (95%) epoetin alfa pts received QW dosing whereas the majority (79%) of darbepoetin alfa p...

P2-395 Extra caregiver time due to dementia: results from the monzino 80-plus study

P2-395 Extra caregiver time due to dementia: results from the monzino 80-plus study

Long-term donepezil treatment in 565 patients with Alzheimer's disease (AD2000): randomised double-blind trial

Cholinesterase inhibitors produce small improvements in cognitive and global assessments in Alzheimer's disease. We aimed to determine whether donepezil produces worthwhile improvements in disability, dependency, behavioural and psychological symptoms, carers' psychological wellbeing, or delay in institutionalisation. If so, which patients benefit, from what dose, and for how long? 565 community-resident patients with mild to moderate Alzheimer's disease entered a 12-week run-in period in which they were randomly allocated donepezil (5 mg/day) or placebo. 486 who completed this period were rerandomised to either donepezil (5 or 10 mg/day) or placebo, with double-blind treatment continuing as long as judged appropriate. Primary endpoints were entry to institutional care and progression of disability, defined by loss of either two of four basic, or six of 11 instrumental, activities on the Bristol activities of daily living scale (BADLS). Outcome assessments were sought for all patients and analysed by logrank and multilevel models. Cognition averaged 0.8 MMSE (mini-mental state examination) points better (95% CI 0.5-1.2; p<0.0001) and functionality 1.0 BADLS points better (0.5-1.6; p<0.0001) with donepezil over the first 2 years. No significant benefits were seen with donepezil compared with placebo in institutionalisation (42% vs 44% at 3 years; p=0.4) or progression of disability (58% vs 59% at 3 years; p=0.4). The relative risk of entering institutional care in the donepezil group compared with placebo was 0.97 (95% CI 0.72-1.30; p=0.8); the relative risk of progression of disability or entering institutional care was 0.96 (95% CI 0.74-1.24; p=0.7). Similarly, no significant differences were seen between donepezil and placebo in behavioural and psychological symptoms, carer psychopathology, formal care costs, unpaid caregiver time, adverse events or deaths, or between 5 mg and 10 mg donepezil. Donepezil is not cost effective, with benefits below minimally relevant thresholds. More effective treatments than cholinesterase inhibitors are needed for Alzheimer's disease.

Pharmacoeconomic aspects of memantine (Ebixa®) in the treatment of Alzheimer’s disease

Severe dementia is a devastating condition causing great impairment in cognition and functional capacity. The costs associated with severe dementia are very high and the disease can have a major impact on the next of kin. Thus, any treatment that can influence the course of severe dementia would be of great value. Memantine (1amino3,5dimethyladamantane hydrochloride, CAS 4100521, Ebixa®) is a noncompetitive N-methyl-D-aspartate antagonist. It has been suggested that by inhibiting excessive stimulation of NMDA receptors, memantine may have the potential to provide both symptomatic improvement and neuroprotective effects in Alzheimer’s disease. In clinical trials on patients with moderate-to-severe Alzheimer’s disease, memantine has shown significant effects on clinical global impression of change, behavior and activities in daily life. In this survey, pharmacoeconomic results of memantine treatment from a prospective randomized 6-month US clinical trial are reviewed. Caregiver time was significantly lower in the memantine group and the resulting costs were also lower in the memantine group as compared with placebo. Combined with efficacy results, this may indicate cost-effectiveness. However, such a conclusion should be judged with some care since the long-term effects on resource utilization, costs and survival are not known.

Donepezil for the Treatment of Mild to Moderate Alzheimer’s Disease in France: The Economic Implications

In the present study, the socioeconomic impact of the use of the acetylcholinesterase inhibitor donepezil in patients with mild to moderate Alzheimer’s disease (AD) living in France was examined. A model was created to extrapolate over a 3-year period the results from placebo-controlled trials together with epidemiological and prevalence data. Costs considered in the model were net societal costs associated with paid and unpaid assistance, general medical consumption and institutional care. The model suggested that delays in cognitive decline and functional dependence due to treatment reduced the time spent in institutional care and the burden on caregivers. Over a 3-year period, total net costs of caring for untreated patients with an initial Mini-Mental State Examination score ranging from 10 to 26 were EUR 53,206 compared with EUR 42,720 for a patient treated with donepezil – an annual cost saving of approximately EUR 3,500 per patient. Cost savings were mainly due to savings in unpaid caregiver time, which, apart from patient institutionalization, represented the most costly component of total care in this study but had no direct budgetary impact. Overall, these data suggest that donepezil is a cost-effective treatment for mild to moderately impaired AD patients living in France.

Preference and resource utilization in elderly patients: InnoLet ® versus vial/syringe

InnoLet ® is a disposable insulin injection device with a large easy-to-read dial, large push button for injection, and audible clicks for each unit injected. This clinical trial assessed patient preference, satisfaction, and utilization of healthcare resources (estimated nursing care) for InnoLet and vial/syringe. Patients with diabetes mellitus ( N=79, mean age 68.2±8.6 years, duration of diabetes 16.5±10.9 years) having visual and/or motor disabilities and having difficulty (or required caregiver assistance) for previous injections by vial/syringe were randomized to use of either InnoLet or vial/syringe for 6 weeks, then switched to the alternate regimen for 6 weeks. At the end of the study, utilization of healthcare resources was assessed in terms of the caregiver time required to assist in preparation, storage, and disposal of each device. For vial/syringe, 60% of patients required assistance in drawing up the appropriate dosage in the syringe, and 36% of patients required assistance when injecting insulin. A major portion of the patients (53%) could independently conduct injections (without nursing/caregiver assistance) during use of InnoLet, versus 20% for vial/syringe. As a result, mean daily nursing costs associated with the injection regimen were US$ 114 for the InnoLet device, and US$ 196 for vial/syringe ( P<0.001). A majority of patients (82%) indicated a preference for the InnoLet device ( P<0.001).

A VA inpatient respite program for patients with dementia.

can result in high levels of stress, unwanted social role changes, depression, anxiety, a lowered sense of wellbeing, feelings of being burdened, deterioration of physical health, and a general feeling that life is overwhelming (5). Research on the family caregivers of persons with dementia has consistently revealed that respite care ranks among urgently desired community services (6). Inpatient respite care is a shortterm out-of-home stay for the patient with dementia. In the VA system, sustained treatment and rehabilitation units, nursing home care units, and extended care rehabilitation units usually provide this care for a short period, generally one or two weeks. The service gives the caregiver—who is usually related to the person with dementia, often as a spouse or adult child—a break from the stressful task of caring for the patient at home. As well as providing temporary relief from worry and stress, this type of service gives the caregiver time to attend to his or her own needs (7). The purpose of this column is to discuss the effects of inpatient respite care on persons with dementia and on their caregivers and the clinical implications for both patients and caregivers. We include a synopsis of an inpatient respite program at a local VA medical center as an example and make suggestions for better serving persons with dementia as well as their caregivers.

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.

Med Check

Med Check

Resource Utilisation and Cost Analysis of Memantine in Patients with Moderate to Severe Alzheimer??s Disease

Alzheimer's disease (AD) is a devastating illness that causes enormous emotional stress to affected families and is associated with substantial medical and nonmedical costs. To determine the effects of 28 weeks of memantine treatment for patients with AD on resource utilisation and costs. Multicentre, prospective, double-blind, randomised, placebo-controlled clinical trial performed in the US. The Wilcoxon-Mann-Whitney test was used to examine the resource utilisation variables and logistic regression models were used for multivariate resource utilisation analyses. Analysis of covariance (ANCOVA) models (log and non-log) were computed to examine costs from a societal perspective. All costs were calculated in 1999 US dollars. Outpatients with moderate to severe AD. Overall, 252 patients received randomised treatment, and 166 patients (placebo n = 76, memantine n = 90) formed the treated-per-protocol (TPP) subset for the health economic analyses, on which the main cost analysis was based. Resource Utilisation in Dementia (RUD) scale, measuring patient and caregiver resource utilisation, and various sources for cost calculations. Controlling for baseline differences between the groups, significantly less caregiver time was needed for patients receiving memantine than for those receiving placebo (difference 51.5 hours per month; 95% CI -95.27, -7.17; p = 0.02). Analysis of residential status also favoured memantine: time to institutionalisation (p = 0.052) and institutionalisation at week 28 (p = 0.04 with the chi-square test). Total costs from a societal perspective were lower in the memantine group (difference dollars US 1089.74/month [non-overlapping 95% CI for treatment difference -1954.90, -224.58]; p = 0.01). The main differences between the groups were total caregiver costs (dollars US-823.77/month; p = 0.03) and direct nonmedical costs (dollars US-430.84/month; p = 0.07) favouring memantine treatment. Patient direct medical costs were higher in the memantine group (p < 0.01), mainly due to the cost of memantine. Resource utilisation and total health costs were lower in the memantine group than the placebo group. The results suggest that memantine treatment of patients with moderate to severe AD is cost saving from a societal perspective.

Cost Analysis of Ropinirole versus Levodopa in the Treatment of Parkinson??s Disease

Not all patients with Parkinson's disease (PD) respond to levodopa and others develop dyskinesias. Ropinirole, a dopamine agonist, is associated with fewer dyskinesias than levodopa. To examine the economic impact of reducing dyskinesias using ropinirole instead of levodopa plus benserazide in PD was examined. The research question addressed was: is the added cost of ropinirole offset by savings due to avoided cases of dyskinesia? A cost-minimisation analysis was performed from both the societal and Ministry of Health (MoH) of Ontario, Canada perspectives, using 5-year data from a study of dyskinesia outcomes comparing ropinirole with levodopa plus benserazide. A predictive model was developed to capture resource utilisation over 5 years, such as medication costs, medical consultations, hospital admissions, nursing home admissions, caregiver time and productivity loss. The model was based on a previously reported clinical trial which determined dyskinesia rates to be 20% for ropinirole and 45% for levodopa. Standard costing lists were used, and costs were discounted at various rates. Constant 1999 Canadian dollars ($Can) were applied, and no increases were assumed over the time horizon of the analysis. A multivariate sensitivity analysis with changes in key parameters was also performed. From a societal perspective, ropinirole was cost saving. From the MoH perspective, the analysis yielded an incremental expected daily cost/patient of $Can4.41 for substituting levodopa plus benserazide with ropinirole. Ropinirole resulted in daily savings/patient of $Can0.17 in non-drug healthcare costs. In the sensitivity analysis, the direction of results did not change despite changes of 15 to 20% in key parameters, suggesting robustness of the model. From the societal perspective, in comparison with levodopa plus benserazide, the added cost of ropinirole is offset by savings due to avoided cases of dyskinesia.

Temporal patterns of caregiving for preterm infants indicate individualized developmental care.

Individualized attention for premature infants was assessed from temporal patterns of caregiving at three very different regional NICUs. Continuous time-lapse video recording of 95 premature infants under 1500 g was made over three 24-hour periods when they were 33 weeks' and 35 weeks' conceptional age. Analysis of variance was used to compare caregiving measures within and across hospitals. The tapes were scored in 5-minute epochs for periods when the infants were in and out of the crib, and when intervention/caregiving was occurring. Despite other differences, the three hospitals did not differ with respect to demographic and risk characteristics of the infant subjects. In all three hospitals, there was more out-of-crib and more caregiving during the daytime than at night; caregiving time showed individual differences over day and night periods; developmental changes in caregiving were observed over the 2 weeks; and more caregiving time was devoted to infants who were at greater risk. Temporal patterns of caregiving reliably indicate individual differences, with sensitive and responsive caregiving common to typical NICU nursing environments.

Dementia Problem Behavior and the Production of Informal Caregiving Services

Informal caregivers of individuals with Alzheimer's disease spend a considerable amount of time providing care. In this paper, we use Grossman's health production and Becker's time allocation models to develop a model of informal care provision to elderly dementia patients. In our model, time inputs produce caregiving services, which provides utility to the caregiver, but reduces leisure. We assume that time is less productive of services on the margin as the disease progresses. In this framework, an increase in patients' disease severity does not necessarily increase informal caregiver time input. The cost of formal care establishes a reservation price for informal caregiving. When the costs of informal caregiving rise above this reservation level, the patient is institutionalized. We test empirically the effect of deterioration in the patients' condition, proxied by both disease severity and dementia problem behavior, on informal caregiving time. We find that dementia-related problem behaviors and functional limitations significantly increase inputs of informal caregiving time. Patients' problem behavior exerts a modifying effect on functional limitations, and patients' comorbidities have no effect on informal caregiving time.

The Caregiver Vigilance Scale: application and validation in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project.

This article reports on the measurement properties of Caregiver Vigilance, a four-item caregiver self-report of perceived oversight demand for Alzheimer's disease and related disorders family caregiving. The self-report uses data from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, a multisite National Institutes of Health (NIH) sponsored study of over 1,200 family caregivers. Results indicate that the items were clearly understood by the racially/ethnically diverse respondents; and, when responses were transformed into a summary scale and analyzed, unidimensionality was evident and internal consistency reliability favorably demonstrated. We suggest using the Caregiver Vigilance Scale in conjunction with traditional burden measures to systematically include the caregiving time associated with protectively watching over care recipients and the daily duration of this responsibility. We also highlight the practical utility of selected items for potential use in the caregiver assessment process.

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.

An Economic Evaluation of Donepezil in Mild to Moderate Alzheimer’s Disease: Results of a 1-Year, Double-Blind, Randomized Trial

The costs and consequences of donepezil versus placebo treatment in patients with mild to moderate Alzheimer’s disease (AD) were evaluated as part of a 1-year prospective, double-blind, randomized, multinational clinical trial. Patients received either donepezil (n = 142; 5 mg/day for 28 days followed by 10 mg/day according to the clinician’s judgement) or placebo (n = 144). Unit costs were assessed in 1999 Swedish kronas (SEK) and converted to US dollars (USD). Donepezil-treated patients gained functional benefits relative to placebo on the Progressive Deterioration Scale (p = 0.042) and Instrumental Activities of Daily Living scale (p = 0.025) at week 52. Caregivers of donepezil-treated patients spent an average of 400 h less annually providing care than caregivers of placebo-treated patients. Mean annual healthcare costs were SEK 137,752 (USD 16,438) per patient for the donepezil group and SEK 135,314 (USD 16,147) in the placebo group. With the average annual cost of donepezil at SEK 10,723 (USD 1,280) per patient, the SEK 2,438 (USD 291) cost difference represented a 77% cost offset. When caregiver time and healthcare costs were included, mean annual costs were SEK 209,244 (USD 24,969) per patient in the donepezil group and SEK 218,434 (USD 26,066) in the placebo group, a total saving associated with donepezil treatment of SEK 9,190 (USD 1,097) per patient [95% CI of SEK –43,959 (USD –5,246), SEK 25,581 (USD 3,053); p = 0.6]. The positive effects on the efficacy outcome measures combined with no additional costs from a societal perspective indicate that donepezil is a cost-effective treatment, representing an improved strategy for the management of patients with AD.

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.

Is hygiene promotion cost-effective? A case study in Burkina Faso.

To estimate the incremental cost-effectiveness of a large-scale urban hygiene promotion programme in terms of reducing the incidence of childhood diarrhoeal disease in Bobo-Dioulasso, Burkina Faso. Total and incremental costs of the programme were estimated retrospectively from the perspectives of the provider, from the households who change their behaviour as a result of the programme and from society (the sum of the two). The programme effects were derived from an intervention study that estimated the impact on handwashing with soap after handling child stools through a time-series method of observing 37 319 mothers. Using data from the literature, the associated reductions in childhood morbidity and mortality were estimated. The direct medical savings and indirect savings of caregiver time and lost productivity associated with child death were estimated from interviews with households and health workers. The cost and outcome data were combined to provide an estimate of the cost per mother who starts handwashing with soap as a result of the programme and the cost per case of childhood diarrhoea averted. The total provider cost (including start-up and 3-year running costs) was $302 507. Core programme activities accounted for 31% of the cost, administration 40%. The total cost to the 7286 households associated with changing behaviour during the 3 years of programme implementation was $160 125 ($7.3 per year per household). An estimated 8638 cases of diarrhoea, 864 outpatient consultations, 324 hospital referrals and 105 deaths were averted by the programme during this time. Savings to the provider from reduced treatment costs were estimated at $10 716 and savings to the households from averted treatment cost were $9136, resulting in a total saving to society of $19 852, increasing to $393 967 if indirect savings are included. The incremental provider cost per case of diarrhoea averted was $33.8. The incremental cost to society was $51.3 falling to $7.9 if indirect savings are included. If the programme were to be replicated elsewhere, savings in the international research input and start-up costs could reduce provider costs to $26.9 per case of diarrhoea averted. The annual cost of the programme represents 0.001% of the national health budget for Burkina Faso. The direct annual cost of implementing the programme at the household level represents 1.3% of annual household income. Hygiene promotion reduces the occurrence of childhood diarrhoea in Burkina Faso at less than 1% of the Ministry of Health budget and less than 2% of the household budget, and could be widely replicated at lower cost.

Time Spent Caregiving for Persons with the Dual Disability of Down's Syndrome and Alzheimer's Dementia

Persons with Down's syndrome (DS) are at increased risk of Alzheimer's type dementia (AD) compared with the general population. Little attention has been paid to the current and future impact of AD on caregivers and clients in residential and community settings. The present study sought to test if the Caregiver Activity Survey-Intellectual Disability (CAS-ID) would be useful in measuring time spent by professional caregivers aiding persons with DS and AD. Preliminary findings suggest that staff caregiving time increases significantly when a person with DS experiences symptoms of dementia. No significant differences were reported in time spent caregiving for subjects at mid-stage versus end-stage dementia; however, the nature and tasks of caregiving change as dementia progresses. This study supports the utility of the CAS-ID in measuring time spent caregiving for persons with AD and DS. Care providers must plan appropriate models of health and social care to effectively address these needs.