LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial
Abstract Background The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction o...
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BMC
2020-06-01
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Series: | Trials |
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Online Access: | http://link.springer.com/article/10.1186/s13063-020-04414-y |
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language |
English |
format |
Article |
sources |
DOAJ |
author |
Bettina Sandgathe Husebo Heather Allore Wilco Achterberg Renira Corinne Angeles Clive Ballard Frøydis Kristine Bruvik Stein Erik Fæø Marie Hidle Gedde Eirin Hillestad Frode Fadnes Jacobsen Øyvind Kirkevold Egil Kjerstad Reidun Lisbeth Skeide Kjome Janne Mannseth Mala Naik Rui Nouchi Nathalie Puaschitz Rune Samdal Oscar Tranvåg Charalampos Tzoulis Ipsit Vihang Vahia Maarja Vislapuu Line Iden Berge |
spellingShingle |
Bettina Sandgathe Husebo Heather Allore Wilco Achterberg Renira Corinne Angeles Clive Ballard Frøydis Kristine Bruvik Stein Erik Fæø Marie Hidle Gedde Eirin Hillestad Frode Fadnes Jacobsen Øyvind Kirkevold Egil Kjerstad Reidun Lisbeth Skeide Kjome Janne Mannseth Mala Naik Rui Nouchi Nathalie Puaschitz Rune Samdal Oscar Tranvåg Charalampos Tzoulis Ipsit Vihang Vahia Maarja Vislapuu Line Iden Berge LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial Trials Home-dwelling Dementia care Service collaboration Resource utilization Caregiver burden Stepped-wedge randomization |
author_facet |
Bettina Sandgathe Husebo Heather Allore Wilco Achterberg Renira Corinne Angeles Clive Ballard Frøydis Kristine Bruvik Stein Erik Fæø Marie Hidle Gedde Eirin Hillestad Frode Fadnes Jacobsen Øyvind Kirkevold Egil Kjerstad Reidun Lisbeth Skeide Kjome Janne Mannseth Mala Naik Rui Nouchi Nathalie Puaschitz Rune Samdal Oscar Tranvåg Charalampos Tzoulis Ipsit Vihang Vahia Maarja Vislapuu Line Iden Berge |
author_sort |
Bettina Sandgathe Husebo |
title |
LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
title_short |
LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
title_full |
LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
title_fullStr |
LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
title_full_unstemmed |
LIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
title_sort |
live@home.path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial |
publisher |
BMC |
series |
Trials |
issn |
1745-6215 |
publishDate |
2020-06-01 |
description |
Abstract Background The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. Methods The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. Discussion We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. Trial registration ClinicalTrials.gov: NCT04043364 . Registered on 15 March 2019. |
topic |
Home-dwelling Dementia care Service collaboration Resource utilization Caregiver burden Stepped-wedge randomization |
url |
http://link.springer.com/article/10.1186/s13063-020-04414-y |
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doaj-ff71235434dd4d358b1409b1696947b22020-11-25T03:43:58ZengBMCTrials1745-62152020-06-0121111610.1186/s13063-020-04414-yLIVE@Home.Path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trialBettina Sandgathe Husebo0Heather Allore1Wilco Achterberg2Renira Corinne Angeles3Clive Ballard4Frøydis Kristine Bruvik5Stein Erik Fæø6Marie Hidle Gedde7Eirin Hillestad8Frode Fadnes Jacobsen9Øyvind Kirkevold10Egil Kjerstad11Reidun Lisbeth Skeide Kjome12Janne Mannseth13Mala Naik14Rui Nouchi15Nathalie Puaschitz16Rune Samdal17Oscar Tranvåg18Charalampos Tzoulis19Ipsit Vihang Vahia20Maarja Vislapuu21Line Iden Berge22Centre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenDepartment of Internal Medicine, Section of Geriatrics, Yale School of MedicineDepartment of Public Health and Primary Care, Leiden University Medical CenterNORCE Norwegian Research CentreCollege of Medicine and Health, University of ExeterDepartment of Global Public Health and Primary Care, Faculty of Medicine, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenVid Specialized UniversityNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital TrustNORCE Norwegian Research CentreCentre for Pharmacy, Department of Global Public Health and Primary Care, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenHaraldsplass Deaconess HospitalDepartment of Cognitive Health Science, Institute of Development, Aging and Cancer, Tohoku UniversityCentre for Care Research, Western Norway University of Applied SciencesCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenNeuro-SysMed, Department of Neurology, Haukeland University HospitalMcLean HospitalCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenCentre for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of BergenAbstract Background The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. Methods The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. Discussion We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. Trial registration ClinicalTrials.gov: NCT04043364 . Registered on 15 March 2019.http://link.springer.com/article/10.1186/s13063-020-04414-yHome-dwellingDementia careService collaborationResource utilizationCaregiver burdenStepped-wedge randomization |