LIVE@Home.Path

The LIVE@Home.Path trial focused on how to improve the caring situation for caregivers to people with dementia living at home. The overarching goal of the project was to develop knowledge about the needs of caregivers and people with dementia living at home and how to improve the dementia pathway. The project is now completed, and the main paper on effect evaluation of the RCT is accepted for publication in Alzheimer’s & Dementia entitled “Burden and care time for dementia caregivers in the LIVE@Home.Path trial”.

Bilde av eldre person i sykehjem — We have had the opportunity to visit many wonderful older adults during our projects, such as the lovely mrs. B. S. Friis. Photo: Grete Reimers

Affiliation

About the research project

The LIVE@Home.Path trial is SEFAS's grand investment in municipal dementia services and home-dwelling persons with dementia and their caregivers. The project was led by Professor Bettina Husebø, financed by the Research Council of Norway, and was a collaboration with NORCE, the Western Norway University of Applied Sciences, Haraldsplass Deaconess Hospital, the Dignity Centre, and the municipalities of Bergen, Bærum, and Kristiansand. International scientific partners included Yale (U.S.), Harvard/McLean (U.S), Leiden University (the Netherlands), Tohoku University (Japan), King's College (U.K.), and Exeter University (U.K.)

Methods

LIVE@Home.Path applied both qualitative and quantitative methods to explore how different components (ie, a multicomponent intervention) facilitated by a municipal coordinator can improve resource utilization and caregiver burden in dementia care. LIVE is an acronym for the components of the intervention, consisting of L for learning, I for innovation and ICT, V for volunteering, and E for empowerment, that is, planning of treatment and care in the last period of life. In the quantitative part of the project, we explored how this multicomponent intervention can reduce the number of informal care hours and caregiver burden, applying a stepped wedge randomized controlled design, which implies that all participants eventually will receive the intervention, while the timing of the intervention is determined by randomization. In total, we have followed 280 dyads of persons with dementia and their informal caregivers from 2019 in Bergen, Bærum, and Kristiansand, and implemented the coordinator-facilitated LIVE intervention over 6 months. We have also performed qualitative interviews with selected dyads and volunteer coordinators throughout the trial. We found that the LIVE intervention did not improve resource utilization or caregiver burden for caregivers of home-dwelling persons with dementia; however, the caregivers reported a positive change over the intervention period, which was most pronounced for the allocation of a personal coordinator.

Impact

Our findings highlight that the personalization of dementia care is highly valued by the caregivers. This finding may support clinicians and stakeholders in designing future health care services for people with dementia and their caregivers, since the prevalence will more than double over the next 30 years, thereby also increasing the need to support their caregivers.

Educational outcomes

PhD student Stein Erik Fæø defended his thesis in 2021: “Being Home with Dementia: Exploration of the Meaning of Home and Approaches to Care and Support”.
PhD student Marie Hidle Gedde defended her thesis on the 16th of February 2023: Behavioral and Psychological Symptoms of Dementia. The impact of medication reviews in multicomponent interventions and the consequences of COVID-19 restrictions. Gedde received the award for best PhD at the Faculty of Medicine in 2023.
PhD student Maarja Vislapuu defended her thesis on the 19th of April 2024: Informal and formal resource utilization in people with dementia.
Masterstudent Guro Kårøy Almås defended her master's degree in Health Sciences in June 2024: Betydelig pårørendebelastning hos hjemmeboende personer med demens.
PhD candidate Eirin Hillestad is researching volunteerism in dementia care by conducting interviews with volunteers, volunteer coordinators, individuals with dementia, and their relatives, as well as conducting participant observations.

Publications from the project

The main paper of the LIVE@Home.Path trial, "Burden and care time for dementia caregivers in the LIVE@Home.Path trial (external link)" was published in March 2025 in the world's leading dementia journal, Alzheimers & Dementia. The trial included 280 dyads of home-dwelling persons with dementia and their caregivers in a stepped wedge design and provided them with the multicomponent LIVE interventions encompassing Learning, Innovation, Volunteer services and Empowerment, and this intervention was delivered by a municipal coordinator. This intervention did not affect the trial's primary endpoint, caregiver burden resource utilization, yet we found that the caregiver reported clinical global impression of change improved over the trial, in particular related to the coordinator. We suggest that these results should be acknowledged when designing future health care services for families affected by dementia.

In the articles below, you can read about other research results from the LIVE@Home.Path project.

Dissemination

Scientific:

Oral presentation at the International Psychogeriatric Association Lisbon 2023: The effectiveness of a multicomponent intervention on caregiver burden and informal care time in home-dwelling people with dementia and their caregivers. Results from the stepped wedge randomized controlled LIVE@Home.Path trial. Berge LI, Angeles RC, Allore H, Vislapuu M, Gedde MH, Puschitz N, Ballard C, Aarsland D, Selbæk G, Vahia I, Tzoulis C, Nouchi R, Husebø B. February 2024 International Psychogeriatrics 35(S1):107-108, DOI: 10.1017/S1041610223001448 (external link)
Symposium at the International Psychogeriatric Association in Lisbon 2023: Learning from trials: LIVE@Home.Path, a stepped-wedge cluster randomized controlled trial of care coordination and implementation for home-dwelling people with dementia. Husebo B, Vislapuu M, Gedde M, Angelies RC, Puaschitz N, Berge LI International Psychogeriatrics , Volume 35 , Issue S1 , December 2023 , pp. 4 DOI: https://doi.org/ (external link)10.1017/S1041610223002181 (external link)
Symposium at the International Psychogeriatric Association in Lisbon 2023: Visualization of Pain and Agitation by System Analysis Algorithms. Husebo B, Berge LI, Erdal A and Patrascu M International Psychogeriatrics , Volume 35 , Issue S1 , December 2023 , pp. 38-39 DOI: https://doi.org/10.1017/S1041610223002077 (external link)

Popular science:

Participating municipalities:

Bergen, Bærum, and Kristiansand

Funding:

The Research Council of Norway
The Dignity Centre
Nasjonal kompetansetjeneste for kvinnehelse
Oslo University Hospital
GC Rieber Foundations
Extrastiftelsen

People involved:

Principal investigator: Bettina Husebø, Professor and Head of SEFAS

Postdocs: Oscar Tranvåg, Line Iden Berge, Renira Corinne Angeles, and Nathalie Genevieve Puaschitz.

PhD Candidates: Stein Erik Fæø, Maarja Vislapuu, Marie Hidle Gedde, and Eirin Hillestad