Dementia care in the general practice setting: a cluster randomized trial on the effectiveness and cost impact of three management strategies.

OBJECTIVE: To compare a complex nondrug intervention including actively approaching counseling and caregiver support groups with differing intensity against usual care with respect to time to institutionalization in patients with dementia. METHODS: Within this three-armed cluster-randomized controlled trial, 390 community-dwelling patients aged 65 years or older with physician-diagnosed mild to moderate dementia and their caregivers were enrolled via 129 general practitioners in Middle Franconia, Germany. The intervention included general practitioners' training in dementia care and their recommendation of support groups and actively approaching caregiver counseling. Primary study end point was time to institutionalization over 2 years. In addition, long-term intervention effects were assessed over a time horizon of 4 years. Secondary end points included cognitive functioning, (instrumental) activities of daily living, burden of caregiving, and health-related quality of life after 2 years. Frailty models with strict intention-to-treat approach and mixed linear models were applied to account for cluster randomization. Health care costs were assessed from the societal perspective. RESULTS: After 2 (4) years, 12% (24%) of the patients were institutionalized and another 21% (35%) died before institutionalization. No significant differences between study groups were observed with respect to time to institutionalization after 2 and 4 years (P 0.25 and 0.71, respectively). Secondary end points deteriorated, but differences were not significant between study groups. Almost 80% of the health care costs were due to informal care. Total annual costs amounted to more than €47,000 per patient and did not differ between study arms. CONCLUSION: The intervention showed no effects on time to institutionalization and secondary outcomes.

Excess costs of dementia disorders and the role of age and gender - an analysis of German health and long-term care insurance claims data.

BACKGROUND: Demographic ageing is associated with an increasing number of dementia patients, who reportedly incur higher costs of care than individuals without dementia. Regarding Germany, evidence on these excess costs is scarce. Adopting a payer perspective, our study aimed to quantify the additional yearly expenditures per dementia patient for various health and long-term care services. Additionally, we sought to identify gender-specific cost patterns and to describe age-dependent cost profiles. METHODS: The analyses used 2006 claims data from the AOK Bavaria Statutory Health Insurance fund of 9,147 dementia patients and 29,741 age- and gender-matched control subjects. Cost predictions based on two-part regression models adjusted for age and gender and excess costs of dementia care refer to the difference in model-estimated means between both groups. Corresponding analyses were performed stratified for gender. Finally, a potentially non-linear association between age and costs was investigated within a generalized additive model. RESULTS: Yearly spending within the social security system was circa €12,300 per dementia patient and circa €4,000 per non-demented control subject. About two-thirds of the additional expenditure for dementia patients occurred in the long-term care sector. Within our study sample, male and female dementia patients incurred comparable total costs. However, women accounted for significantly lower health and significantly higher long-term care expenditures. Long-term care spending increased in older age, whereupon health care spending decreased. Thus, at more advanced ages, women incurred greater costs than men of the same age. CONCLUSIONS: Dementia poses a substantial additional burden to the German social security system, with the long-term care sector being more seriously challenged than the health care sector. Our results suggest that female dementia patients need to be seen as a key target group for health services research in an ageing society. It seems clear that strategies enabling community-based care for this vulnerable population might contribute to lowering the financial burden caused by dementia. This would allow for the sustaining of comprehensive dementia care within the social security system.

Costs of care for dementia patients in community setting: an analysis for mild and moderate disease stage.

OBJECTIVE: Rising life expectancy is associated with higher prevalence rates of dementia disorders. When disease progresses the patients' call on formal health care services and on social support grows which imposes increasing costs of care. The aim of this study was to investigate the costs for patients with mild and moderate dementia in community setting in Germany. METHODS: We assessed total costs of care and individual cost components for 383 community-living dementia patients alongside a cluster-randomized trial from societal and health insurance perspective. Utilization of formal health care services was based on insurance claims data and time dedicated to informal care was assessed within caregiver interviews. We estimated costs using a two-part regression model adjusting for age, gender and cluster-effects. RESULTS: Costs of care equal €47,747 (Euros) from societal perspective which is almost the 4.7-fold of health insurance expenditures. Valued informal care covers 80.2% of societal costs and increases disproportionally when disease progresses. In moderate dementia the corresponding amount exceeds the one in mild dementia by 69.9%, whereas costs for formal health care services differ by 14.3%. CONCLUSION: Due to valued informal care, costs of care for community-living patients with moderate dementia are significantly higher than for patients with mild dementia. Informal care is a non-cash item saving expenditures for professional care. To relieve social security system and family caregivers as well as to allow dementia patients to stay at home as long as possible, concepts fostering community-based dementia care and support to family caregivers need to be further developed.

Counsellors contact dementia caregivers--predictors of utilisation in a longitudinal study.

BACKGROUND: Counselling of family members is an established procedure in the support of dementia patients' relatives. In absence of widespread specialised dementia care services in most countries, however, counselling services are often not taken up or only very late in the course of the disease. OBJECT: In order to promote acceptance of this service, a new counselling concept was implemented where general practitioners recommended family counsellors, who then actively contacted the family caregivers to offer counselling ("Counsellors Contact Caregivers", CCC). The research questions were: To what extent can the rate of family counselling be increased by CCC? What are the predictors for usage of this form of family counselling? METHODS: The study started in June 2006 in Middle Franconia for patients with mild to moderate dementia. At baseline, 110 family caregivers were offered counselling based on the CCC guideline. Data was analysed from 97 patient-caregiver dyads who received counselling for one year. The mean age of the patients with dementia (67 women and 30 men) was 80.7 years (SD = 6.2). The mean age of their primary family caregivers (68 women, 23 men) was 60.8 years (SD = 13.8). RESULTS: 35 family members (36%) made use of more extensive counselling (more than one personal contact). By contrast, 29 family members (30%) had no personal contact or only one personal contact (33 cases, 34%). The factors "spouse" (p = .001) and "degree of care" (p = .005) were identified as significant predictors for acceptance of extensive counselling. CONCLUSIONS: Actively contacting patients and their caregivers is a successful means of establishing early and frequent contact with family members of patients with mild to moderate dementia. Use of extensive counselling is made especially by spouses of patients requiring intensified care. TRIAL REGISTRATION: ISRCTN68329593.

Effects of general practitioner training and family support services on the care of home-dwelling dementia patients--results of a controlled cluster-randomized study.

BACKGROUND: More than 90% of dementia patients are cared for by their general practitioners, who are decisively involved in the diagnosis, therapy and recommendation of support services. OBJECTIVE: To test whether special training of general practitioners alters the care of dementia patients through their systematic recommendation of caregiver counseling and support groups. METHOD: 129 general practitioners enrolled 390 dementia patients and their informal caregivers in a prospective, three-arm cluster-randomized 2-year study. Arm A constituted usual care, in Arm B and C support groups and caregiver counseling (in Arm B one year after baseline, in Arm C at baseline) were recommended by the general practitioners. The general practitioners received arm-specific training. Diagnostic and therapeutic behavior of physicians was recorded at baseline. Informal caregivers were questioned in follow-up after 2 years about the utilization of support services. RESULTS: The diagnostic behavior of the general practitioners conforms to relevant guidelines. The procedure in newly-diagnosed patients does not differ from previously diagnosed patients with the exception of the rate of referral to a specialist. About one-third of the newly-diagnosed dementia patients are given an anti-dementia drug. The utilization of support groups and counseling increased five- and fourfold, respectively. Utilization of other support services remained low (< 10%), with the exception of home nursing and institutional short-term nursing. CONCLUSION: Trained general practitioners usually act in conformity with guidelines with respect to diagnosing dementia, and partly in conformity with the guidelines with respect to recommended drug therapy. Recommendations of support services for informal caregivers by the general practitioner are successful. They result in a marked increase in the utilization rate for the recommended services compared to offers which are not recommended by the general practitioner. TRIAL REGISTRATION: ISRCTN68329593.

Dementia care initiative in primary practice: study protocol of a cluster randomized trial on dementia management in a general practice setting.

BACKGROUND: Current guidelines for dementia care recommend the combination of drug therapy with non-pharmaceutical measures like counselling and social support. However, the scientific evidence concerning non-pharmaceutical interventions for dementia patients and their informal caregivers remains inconclusive. Targets of modern comprehensive dementia care are to enable patients to live at home as long and as independent as possible and to reduce the burden of caregivers. The objective of the study is to compare a complex intervention including caregiver support groups and counselling against usual care in terms of time to nursing home placement. In this paper the study protocol is described. METHODS/DESIGN: The IDA (Initiative Demenzversorgung in der Allgemeinmedizin) project is designed as a three armed cluster-randomized trial where dementia patients and their informal caregivers are recruited by general practitioners. Patients in the study region of Middle Franconia, Germany, are included if they have mild or moderate dementia, are at least 65 years old, and are members of the German AOK (Allgemeine Ortskrankenkasse) sickness fund. In the control group patients receive regular treatment, whereas in the two intervention groups general practitioners participate in a training course in evidence based dementia treatment, recommend support groups and offer counseling to the family caregivers either beginning at baseline or after the 1-year follow-up. The study recruitment and follow-up took place from July 2005 to January 2009. 303 general practitioners were randomized of which 129 recruited a total of 390 patients. Time to nursing home admission within the two year intervention and follow-up period is the primary endpoint. Secondary endpoints are cognitive status, activities of daily living, burden of care giving as well as healthcare costs. For an economic analysis from the societal perspective, data are collected from caregivers as well as by the use of routine data from statutory health insurance and long-term care insurance. DISCUSSION: From a public health perspective, the IDA trial is expected to lead to evidence based results on the community effectiveness of non-pharmaceutical support measures for dementia patients and their caregivers in the primary care sector. For health policy makers it is necessary to make their decisions about financing new services based on strong knowledge about the acceptance of measures in the population and their cost-effectiveness. TRIAL REGISTRATION: ISRCTN68329593.

[IDA project--concept and implementation of a cluster-randomized trial on dementia management in a general practice setting]. / Projekt IDA - Konzept und Umsetzung einer cluster-randomisierten Studie zur Demenzver- sorgung im hausärztlichen Bereich.

Given the multiple deficits in dementia care IDA is a health services research project that addresses the key role of general practitioners in the early detection of dementia, patient and family education, therapy and referral to further counseling and supportive measures. Mid 2005 IDA was started by the AOK Bavaria as a pilot project targeting patients living at home. This three-armed cluster-randomized trial--currently including 180 participating general practitioners--is to compare two supportive measures of different intensity (counseling for care-giving relatives and care management) with the usual care in terms of time to nursing home placement. Additional outcomes investigated include the development of the patient's cognitive status and his abilities to perform activities of daily living, burden and quality of life of care-giving relatives as well as healthcare costs and costs of institutional care. Participating patients with initially mild to moderate disease will be observed for a period of two years. Data collection will proceed via general practitioners and caregivers and also utilize routine data of statutory health insurances and long-term care insurances. Keeping in mind that patient recruitment is ongoing throughout 2006 the initial analysis of 254 patients' data shows an average 80-year old patient in the early phase of moderate dementia. One third of the participants are cases with a first- time diagnosis obtained from their general practitioner. Final results for IDA are expected to be available in 2009.