The multidimensional burden of informal caregivers in primary malignant brain tumor.

PURPOSE: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective. METHODS: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated. RESULTS: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year). CONCLUSIONS: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial.

BACKGROUND: Although non-drug interventions are widely used in patients with Alzheimer's disease, few large scale randomized trials involving a long-term intervention and several cognitive-oriented approaches have been carried out. ETNA3 trial compares the effect of cognitive training, reminiscence therapy, and an individualized cognitive rehabilitation program in Alzheimer's disease to usual care. METHODS: This is a multicenter (40 French clinical sites) randomized, parallel-group trial, with a two-year follow-up comparing groups receiving standardized programs of cognitive training (group sessions), reminiscence therapy (group sessions), individualized cognitive rehabilitation program (individual sessions), and usual care (reference group). Six hundred fifty-three outpatients with Alzheimer's disease were recruited. The primary efficacy outcome was the rate of survival without moderately severe to severe dementia at two years. Secondary outcomes were cognitive impairment, functional disability, behavioral disturbance, apathy, quality of life, depression, caregiver's burden, and resource utilization. RESULTS: No impact on the primary efficacy measure was evidenced. For the two group interventions (i.e. cognitive training and reminiscence), none of the secondary outcomes differed from usual care. The larger effect was seen with individualized cognitive rehabilitation in which significantly lower functional disability and a six-month delay in institutionalization at two years were evidenced. CONCLUSIONS: These findings challenge current management practices of Alzheimer's patients. While cognitive-oriented group therapies have gained popularity, this trial does not show improvement for the patients. The individualized cognitive rehabilitation intervention provided clinically significant results. Individual interventions should be considered to delay institutionalization in Alzheimer's disease.

Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study.

OBJECTIVE: Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative. SETTING: Longitudinal cohort study (metropolitan Paris, France). PARTICIPANTS: Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs. MAIN OUTCOME MEASURES: Informal caregiver objective burden (Resource Utilization in Dementia measuring Informal Care Time [ICT]), subjective burden (Zarit Burden Inventory), monetary self-valuation of ICT (Willingness-to-pay, Willingness-to-accept). RESULTS: Informal caregivers were women (81%) assisting men (80%) of mean age of 37 years. Fifty-five ICs reported no objective burden (ICT = 0) and no/low subjective burden (average Zarit Burden Inventory = 12.1). Forty-three ICs reported a major objective burden (average ICT = 5.6 h/d) and a moderate/severe subjective burden (average Zarit Burden Inventory = 30.3). In multivariate analyses, higher objective burden was associated with poorer Glasgow Outcome Scale-Extended scores, with more severe cognitive disorders (Neurobehavioral Rating Scale-revised) and with no coresidency status; higher subjective burden was associated with poorer Glasgow Outcome Scale-Extended scores, more Neurobehavioral Rating Scale-revised disorders, drug-alcohol abuse, and involvement in litigation. Economic valuation showed that on average, ICs did not value their ICT as free and preferred to pay a mean Willingness-to-pay = &OV0556;17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = &OV0556;12). CONCLUSION: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.

Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study.

OBJECTIVE: To investigate predictors of informal care burden 1 year after a severe traumatic brain injury (TBI). PARTICIPANTS: Patients (N = 66) aged 15 years or older with severe TBI (Glasgow Coma Scale score of 8 or less) and their primary informal caregivers. SETTING: Multicenter inception cohort study over 22 months in Paris and the surrounding area (PariS-TBI study). MAIN MEASURES: Patients' preinjury characteristics; injury severity data; outcome measures at discharge from intensive care and 1 year after the injury; Dysexecutive Questionnaire; Medical Outcome Study Short Form-36; Zarit Burden Inventory. RESULTS: Among the 257 survivors at discharge from acute care, 66 patient-caregiver couples were included. Primary informal caregivers were predominantly women (73%), of middle age (age, 50 years), supporting male patients (79%), of mean age of 38 years. The majority (56%) of caregivers experienced significant burden, and 44% were at risk of depression. Caregivers' impaired health status and perceived burden significantly correlated with patients' global disability (as assessed with the Glasgow Outcome Scale-Extended) and impairments of executive functions (as assessed with the Dysexecutive Questionnaire). A focused principal component analysis suggested that disability and executive dysfunctions were independent predictors of perceived burden, whereas demographics, injury severity, and Glasgow Outcome Scale at discharge from acute care did not significantly correlate with caregiver's burden. CONCLUSION: Global handicap and impairments of executive functions are independent significant predictors of caregiver burden 1 year after TBI.

Impact of CEDIT recommendations: An example of health technology assessment in a hospital network.

OBJECTIVES: The objective of this study is to assess the impact of CEDIT (French Committee for the Assessment and Dissemination of Technological Innovations) recommendations on the introduction of technological innovations within the AP-HP (Assistance Publique-Hôpitaux de Paris), the French hospital network to which this body is attached. METHODS: In 2002, a study based on semidirective interviews of fourteen people affected by these recommendations and a case study relating to thirteen recommendations issued between 1995 and 1998 were conducted. RESULTS: The CEDIT is very scientifically reputable among interviewees. There is generally widespread interest for the recommendations. They are used as decision-making tools by administrative staff and as negotiating instruments by doctors in their dealings with management. Based on the case study, ten of thirteen recommendations had an impact on the introduction of the technology in health establishments. One recommendation appears not to have had an impact. Furthermore, the impact of two technologies was impossible to assess. CONCLUSIONS: This study highlights the significant impact of recommendations arising from a structure that is attached to a hospital network and the good match between CEDIT's objectives and its assignments.

[The cost of severe dementia]. / Le coût des démences sévères.

The aim of the present article is to analyse the methodological difficulties to assess the economic cost of severe dementia from the available data, and the shortcomings of an exclusively economic approach. It is very difficult to provide a reliable account of the cost of severe dementia, when ignoring the initial assessment of the severity and the socio-economic context of the care given to demented persons. When assessing the cost of severe dementia, one needs to know who are the affected individuals, and what medical care they are given - whether at home or inside an institution. While the direct cost can be easily assessed, the indirect cost is more difficult to calculate, and particularly the productivity loss for the caring persons, when they are in occupational activity. Setting up reliable indicators for the cost of dementia is a long process, which needs a clear definition of the target population of the measurement.

[Possible courses of caregiver's support in Alzheimer's disease]. / Orientations possibles de l'aide aux aidants de personnes atteintes de la maladie d'Alzheimer.

The Legos (a laboratory specialized on health economics at Dauphine University, Paris) conducted a detailed survey at three daycare centres for persons suffering from Alzheimer's disease in France, Germany and Spain, to examine in depth their objectives, organization, practices and relations to patients' families. Though it proved difficult to establish a true typology, the analysis showed that the support provided to caregivers by the daycare centres were responding to three main approaches: one aimed at stimulating or keeping the cognitive abilities of the patients; a second one based on the remaining autonomy of the patients and striving to improve the provided home cares and services, in order to avoid or postpone a departure to a nursing home; the last one dealing with the socialization of the patients through an action on the strong relationship with their family. The survey, as well as the study of the available literature published in English and French on the day care centres, also stressed that some delicate questions were not getting the thorough attention they deserve; e.g. the interaction between what is going on in the day care centre and the life outside the centre, the management of the transition between the day care centre and home when the patient returns, the information and professional training of the carers (formal and informal), the various financial aspects of caregivers' support and of attendance at a daycare centre and, last but not least, the different ways of taking into consideration the opinion and the quality of life of the patients.

Financing systems of care for older persons in Europe.

The growing demand for long-term care is placing significant pressure on traditional funding for health and social services in the European Union. In countries where the social security system is based on the Beveridge model, dependency is essentially community-managed through local services; in some countries in which social protection is based on the Bismarck model, dependency has been recognized as a new risk; in southern Europe and Belgium, dependency leads to tax-funded social assistance. Related positions have been adopted: individual contributions are increasing, and while recourse to private insurance remains marginal but is developing, the need for public financing is not being questioned. The choices made regarding home-maintenance, local intervention levels and caregiver assistance will determine the degree of risk coverage in Europe. If the various European countries adopt similar policies, there can be a convergence of the models of social protection for dependency.

Health status and work burden of Alzheimer patients' informal caregivers: comparisons of five different care programs in the European Union.

BACKGROUND: In 1998, a research study was conducted to compare existing programs in the European Union providing both care to people with senile dementia of the Alzheimer type, and support to their informal caregiver. METHOD: Five programs were selected in seven centres. Home social services (Denmark), Day centres (Germany), Expert Centres (Belgium, Spain), Group Living/Cantou (Sweden, France), Respite hospitalization (France). In each centre, 50 patients were randomly selected. The questionnaire addressed informal caregivers (or referents). It included the Nottingham Health Profile (NHP), the Zarit Scale, and it collected data on age, sex and position (spouse or child) of the informal caregiver, as well as age, level of mental deterioration and disabilities of the patient. RESULTS: (n=322 subjects) Comparatively with caregivers of Respite hospitalization patients chosen as the reference, caregivers of patients cared by Group living/Cantou and Home social services experienced a significantly lower burden. The benefit from the Expert centre program concerned emotional reactions (depression) (odds ratio=0.32; P=0.02) and work burden (Zarit) (OR=0.32; P=0.04). The main benefit for caregivers who received Day centre help was the important reduction of feelings of social isolation (OR=0.13; P=0.0003). CONCLUSIONS: The Group Living/Cantou program appeared as the most efficient way to reduce informal caregiver burden, independently from the country considered.