Randomized Controlled Trial

. 2025 Mar;21(3):e14622.

doi: 10.1002/alz.14622.

Burden and care time for dementia caregivers in the LIVE@Home.Path trial

Line Iden Berge^{1

2}, Renira Corinne Angeles^{1

3}, Marie Hidle Gedde^{1

4}, Stein Erik Fæø⁵, Janne Mannseth⁶, Maarja Vislapuu^{1

5}, Natalie Genevieve Søyland Puaschitz^{1

5

7}, Eirin Hillestad^{1

8}, Dag Aarsland⁹, Wilco Peter Achterberg¹⁰, Heather Allore^{11

12}, Clive Ballard¹³, Fan Li^{12

14}, Geir Selbæk^{15

16

17}, Ipsit Vihang Vahia^{18

19}, Bettina Sandgate Husebo^{1

20}

Affiliations

¹ Center for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of Bergen, Bergen, Norway.
² NKS Olaviken Gerontopsychiatric Hospital, Erdal, Norway.
³ NORCE Norwegian Research Centre, Bergen, Norway.
⁴ Haraldsplass Deaconess Hospital, Bergen, Norway.
⁵ Faculty of Health Studies, Department of Nursing, VID Specialized University, Bergen, Norway.
⁶ Section for Epidemiology and Medical Statistic, Department of Global Public Health and Primary Care, Faculty of Medicine, University of Bergen, Bergen, Norway.
⁷ Western Norway University of Applied Sciences, Bergen, Norway.
⁸ The Dignity Centre, Bergen, Norway.
⁹ Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK.
¹⁰ Department of Public Health and Primary Care, Center for Medicine for Older People, Leiden University Medical Center, Leiden, the Netherlands.
¹¹ Department of Internal Medicine, School of Medicine, Yale University, New Haven, Connecticut, USA.
¹² Department of Biostatistics, Yale School of Public Health, New Haven, Connecticut, USA.
¹³ University of Exeter Medical School, Exeter, UK.
¹⁴ Center for Methods in Implementation and Prevention Science, Yale School of Public Health, New Haven, Connecticut, USA.
¹⁵ Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.
¹⁶ Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
¹⁷ Geriatric Department, Oslo University Hospital, Oslo, Norway.
¹⁸ McLean Hospital, Belmont, Massachusetts, USA.
¹⁹ Harvard Medical School, Boston, Massachusetts, USA.
²⁰ Neuro-SysMed Center, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.

PMID: 40042468
PMCID: PMC11881633
DOI: 10.1002/alz.14622

Randomized Controlled Trial

Burden and care time for dementia caregivers in the LIVE@Home.Path trial

Line Iden Berge et al. Alzheimers Dement. 2025 Mar.

. 2025 Mar;21(3):e14622.

doi: 10.1002/alz.14622.

Authors

Affiliations

¹ Center for Elderly and Nursing Home Medicine, Department of Global Public Health and Primary Care, Faculty of Medicine, University of Bergen, Bergen, Norway.
² NKS Olaviken Gerontopsychiatric Hospital, Erdal, Norway.
³ NORCE Norwegian Research Centre, Bergen, Norway.
⁴ Haraldsplass Deaconess Hospital, Bergen, Norway.
⁵ Faculty of Health Studies, Department of Nursing, VID Specialized University, Bergen, Norway.
⁶ Section for Epidemiology and Medical Statistic, Department of Global Public Health and Primary Care, Faculty of Medicine, University of Bergen, Bergen, Norway.
⁷ Western Norway University of Applied Sciences, Bergen, Norway.
⁸ The Dignity Centre, Bergen, Norway.
⁹ Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK.
¹⁰ Department of Public Health and Primary Care, Center for Medicine for Older People, Leiden University Medical Center, Leiden, the Netherlands.
¹¹ Department of Internal Medicine, School of Medicine, Yale University, New Haven, Connecticut, USA.
¹² Department of Biostatistics, Yale School of Public Health, New Haven, Connecticut, USA.
¹³ University of Exeter Medical School, Exeter, UK.
¹⁴ Center for Methods in Implementation and Prevention Science, Yale School of Public Health, New Haven, Connecticut, USA.
¹⁵ Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.
¹⁶ Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
¹⁷ Geriatric Department, Oslo University Hospital, Oslo, Norway.
¹⁸ McLean Hospital, Belmont, Massachusetts, USA.
¹⁹ Harvard Medical School, Boston, Massachusetts, USA.
²⁰ Neuro-SysMed Center, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.

PMID: 40042468
PMCID: PMC11881633
DOI: 10.1002/alz.14622

Abstract

Introduction: We investigated the effectiveness of the multicomponent learning, innovation, volunteer support, empowerment (LIVE) intervention on caregiver burden and care time in dyads of home-dwelling people with dementia and caregivers.

Method: A 24 month, multicenter, stepped-wedge trial, randomized dyads to receive the 6-month LIVE intervention by municipal coordinators (May 2019 to December 2021). Primary outcomes were caregiver burden assessed by Relative Stress Scale (RSS) and informal care time spent on personal activities assessed by Resource Utilization in Dementia Personal Activities of Daily Living (RUD-PADL). Analyses used an intention-to-treat.

Results: Two hundred eighty dyads were enrolled. Caregivers during the intervention period reported lower levels of RSS of 0.7 points (standard deviation [SD]: 0.8) compared to the caregivers in the control period. Caregivers during the intervention period reported more time spent on PADL of 11.7 hours/month (SD: 8.7) compared to caregivers during the control period; both were not statistically significant (P > 0.05).

Discussion: The LIVE intervention did not reduce caregiver burden or care time.

Trial registration: ClinicalTrials.gov NCT04043364.

Highlights: Two hundred eighty persons with dementia and caregivers were included in a stepped wedge randomized controlled trial. We used the learning, innovation, volunteer support, empowerment (LIVE) intervention. The LIVE intervention did not reduce caregiver burden or informal care time. The LIVE intervention improved the caregiver's clinical global impression of change. Positive change was most pronounced for coordinator personalized support.

Keywords: care coordination; caregiver burden; dementia; resource use; stepped wedge randomized controlled trial.

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Conflict of interest statement

Dr. Ballard reports personal fees from Johnson and Johnson, Novo Nordisk, ReMynd, Acadia, AARP, Addex, Eli Lilly, GW Pharma, BMS, Janssen, Orion, Sunovion, Suven, Roche, Biogen, and TauRx. Dr. Selbæk reports honoraria for lectures at symposia sponsored by Eisai and Eli‐Lilly and has participated on advisory boards for Eli‐Lilly, Eisai, and Roche regarding disease‐modifying treatment of Alzheimer's disease. Dr. Aarsland reports grants from Roche Diagnostics, consulting fees from Roche Diagnostics, Eisai, Eli Lilly, and GSK. All other authors have no interests to disclose. Author disclosures are available in the supporting information.

Figures

**FIGURE 1**
Flow chart of the LIVE@Home.Path stepped wedge randomized controlled trial. NH, nursing home.

**FIGURE 2**
Mixed effect regression with time‐invariant intervention effect – primary and secondary outcomes. All models are adjusted for baseline covariates: sexes of the person with dementia and caregiver, caregiver age, relation to the person with dementia, dementia etiology, presence of pain disorders, and personal activities of daily living (total score). N represents the number of observations analyzed in the regression model. CGIC, Clinical Global Impression of Change; EQ‐5D‐5L, European Quality of Life‐5 Dimensions‐5 Levels; GSD, Geriatric Depression Scale; IADL, instrumental activities of daily living; PADL, personal activities of daily living; RSS, Relative Stress Scale; RUD, resource utilization in dementia.

**FIGURE 3**
Mixed effect regression with time‐dependent intervention effect – primary outcomes The deltas (δ) constitute the intervention effect, and their subscript defines heterogenous effects where δ₁ ^* = 1 if follow‐up post‐lockdown treatment effect δ₀ ^* = 1 if post‐lockdown, and δ₀ = 1 if pre‐lockdown intervention effect. All models are adjusted for baseline covariates: sexes of the person with dementia and caregiver, caregiver age, relation to person with dementia, dementia etiology, pain disorders and personal activities of daily living (total score). PADL, personal activities of daily living; RSS, Relative Stress Scale; RUD, resource utilization in dementia.

See this image and copyright information in PMC

References

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Burden and care time for dementia caregivers in the LIVE@Home.Path trial

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Burden and care time for dementia caregivers in the LIVE@Home.Path trial

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