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      Telephone-based aftercare groups for family carers of people with dementia: study protocol of the Talking Time – REHAB project

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          Abstract

          Background

          More than one million people in Germany live with dementia. Most of these people are cared for at home in the family setting. Supporting and caring for people with dementia is time-consuming, and family carers often have high stress levels and are at an increased risk of becoming physically and mentally ill. Medical rehabilitation (rehab) helps to relieve family carers and provide them with strategies to cope with stress. The aim of this study is to improve the sustainability of a multimodal rehab program for family carers of people with dementia. Research question: can the effects of this rehab be maintained through telephone-based aftercare groups following the rehab program?

          Methods

          A prospective randomized controlled longitudinal trial is performed. The intervention group (IG) participates in telephone-based aftercare groups; the control group (CG) receives treatment as usual. For evaluation, a mixed-methods approach is used. The effects of the intervention are quantitatively evaluated by written questionnaires at four measuring points (pre- and post-rehab, as well as 6 and 12 months after the end of rehab). Primary outcome: participation (IMET). Secondary outcomes: Depressive Mood State CES-D, General Complaints SCL-90-R, Subjective Quality of Life WHOQUOL-BREF, Social Support F-SozU, performance in different areas of life, single scales, and support offers (single items). The intervention process is evaluated through qualitative interviews and focus groups with regard to the acceptance of and satisfaction with the aftercare offered; in addition, a health economic evaluation is performed using the EQ-5D questionnaire. Rehabilitants are included in the study ( N = 103 each in the IG and CG) who, accompanied by their family members with dementia, participate in the rehab measure in Ratzeburg. The IG participates monthly in 6 telephone aftercare groups over a period of 6 months. Typical stress situations are discussed and worked on.

          Discussion

          Upon successful evaluation, the offer to participate in telephone-based aftercare groups can be firmly established in the participating rehab clinic. Through minor adjustments, the offer would also be suitable for carers of physically ill people and for non-nursing-specific rehabilitation indications.

          Trial registration

          German Clinical Trials Register: DRKS00013736, May 14, 2018.

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          Most cited references 24

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          A single European currency for EQ-5D health states. Results from a six-country study.

          The EQ-5D questionnaire is a widely used generic instrument for describing and valuing health that was developed by the EuroQol Group. A primary objective of the EuroQol Group is the investigation of values for health states in the general population in different countries. As part of the EuroQol enterprise 11 population surveys were carried out in six Western European countries (Finland, Germany, The Netherlands, Spain, Sweden and the UK) to value health states as defined by the EQ-5D using a standardised visual analogue scale (EQ-5D VAS). This contribution reports how a European set of general population preference weights was derived from the data collected in the 11 valuation studies. The scores from this set of preference weights can be applied to generate a VAS-based weighted health status index for all the potential 243 EQ-5D health states for use in multi-national studies. To estimate the preference weights a multi-level regression analysis was performed on 82,910 valuations of 44 EQ-5D health states elicited from 6,870 respondents. Stable and plausible solutions were found for the model parameters. The R(2) value was 75%. The analysis showed that the major source of variance, apart from 'random error', was variance between individuals (28.3% of the total residual variance). These results suggest that VAS values for EQ-5D health states in six Western European countries can be described by a common model.
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            Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up.

            Meta-analysis was used to examine pooled parameter estimates of 9 active compared with 6 control conditions of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project at 6 months on caregiver burden and depressive symptoms. Associations of caregiver characteristics and outcomes were examined. For burden, active interventions were superior to control conditions (p = .022). Also, active interventions were superior to control conditions for women versus men and for caregivers with lower education versus those with higher education. For depressive symptoms, a statistically significant association of group assignment was found for Miami's family therapy and computer technology intervention (p = .034). Also, active interventions were superior to control conditions for Hispanics, nonspouses, and caregivers with lower education. Results suggest interventions should be multicomponent and tailored.
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              Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial.

              Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge. To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups. Randomized, controlled trial. In-home caregivers in 5 U.S. cities. 212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders. Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief "check-in" telephone calls during the 6-month intervention. The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months. Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months. The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups. A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers. ClinicalTrials.gov identifier: NCT00177489.
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                Author and article information

                Contributors
                Martin.Berwig@medizin.uni-leipzig.de
                Susanne.Lessing@medizin.uni-leipzig.de
                ruth.deck@uksh.de
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central (London )
                1472-6963
                21 March 2019
                21 March 2019
                2019
                : 19
                Affiliations
                [1 ]ISNI 0000 0001 2230 9752, GRID grid.9647.c, Clinic for Cognitive Neurology, Medical Faculty, , University of Leipzig, ; Leipzig, Germany
                [2 ]ISNI 0000 0001 0057 2672, GRID grid.4562.5, Institute for Social Medicine and Epidemiology, , University of Lübeck, ; Lübeck, Germany
                [3 ]Rehabilitation Clinic for Family Carers, AMEOS Rehab Clinical Centre Ratzeburg, Ratzeburg, Germany
                Article
                4003
                10.1186/s12913-019-4003-7
                6427887
                30898114
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Funding
                Funded by: Innovations fond funding programme of the Joint National Committee (Gemeinsamer Bundesausschuss, G-BA)
                Award ID: 01VSF17029
                Award Recipient :
                Categories
                Study Protocol
                Custom metadata
                © The Author(s) 2019

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