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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering

Innovating the clinical pathway for home-dwelling people with dementia and their families. A mixed-method randomized controlled trial

Alternative title: Innovating the clinical pathway for home-dwelling people with dementia and their families. A mixed-method randomized controlled trial

Awarded: NOK 16.4 mill.

The provision of economically viable and proper care for the growing group of home-dwelling persons with dementia (PWD) is one of the most pressing issues in our society. While a cure for dementia is not yet available, professionals and policy-makers highly prioritize the support of caregivers who experience a high burden. LIVE@Home.Path is a mixed method, stepped wedge randomized controlled trial which aims to develop, test, and implement a complex intervention in PWD, intended to reduce caregivers` burden and resource utilization, which again will be cost-effective for the society. Participants are recruited from memory units in specialist and municipal health care in Bergen, Bærum and Kristiansand. The intervention is developed together with users, and LIVE is the acronym for its components, that is Learning, Innovation, Volunteers, and Empowerment. We will apply a stepped wedge design, which means that all participants will receive the intervention, the randomization determines the timing of the start of the intervention. Qualitative interviews will determine users` values and wishes, and promotors and barriers for successful implementation of the intervention. Primary outcome is resource utilization in dementia care and caregiver burden, while secondary outcome includes, amongst others, quality of life, neuropsychiatric symptoms and use of welfare technology. During 2019 we screened 438 dyads of PWD and caregivers for participation, of which 281 were included in the trial. The first group received the LIVE intervention from September 2019 to March 2020, leaving 237 dyads still in the trial. When the Covid-19 pandemic challenged the implementation of the intervention in the second group due to restrictions on home visits, we developed a pandemic cohort, the PANdemic in DEMentia (PAN.DEM), were we conducted telephone interviews with 126 dyads during April and May 2020. From June 2020 the home visits were gradually allowed, and we conducted the intervention for the second group from June to December 2020 and for the third group from September 2020 to March 2021. At the final data collection autumn 2021, 82 dyads were still in the trial. Loss to follow up is mainly caused by nursing home placement or death of the PWD. The project is lead by Center for elderly and nursing home medicine (SEFAS) at the University of Bergen in close cooperation with Haraldsplass Deaconess Hospital, the municipalities of Bergen, Bærum and Kristiansand, Western Norway University of Applied Sciences, NORCE, Dignity Centre, colleagues from the EU-COST Action TD1005, Worldwide University Network (WUN), Japan, United Kingdom, Netherlands and USA.

Primary outcomes are resource utilization in dementia care and caregiver burden, while secondary outcome includes, amongst others, quality of life, neuropsychiatric symptoms, and use of assistive technology and volunteer support. The study has demonstrated that people with dementia experience a clinical global impression of change after receiving the multicomponent LIVE-intervention from a skilled coordinator in the municipality, a designated person who handles all their questions and follows up throughout the pathway. All coordinators affiliated with the trial underwent a two-day introduction course, on which we gave lectures on dementia and care management and provided an overview over relevant learning programs, assistive technology, and volunteer support in the municipality. They also received formalized training on how to collect data in a standardized way, that is, how to use assessment tools in dementia care. After the conduction of the trial, all coordinators from the three participating municipalities came to a conference to discuss and learn from each other’s experiences, summarize the main outcome of the projects for dementia care in their municipality and discuss future perspectives. To conclude, the data collection of the LIVE@Home.Path trial show that there are several points in which to improve the quality of life for both persons with dementia and their caregivers. With the increasing numbers of people with dementia in Norway and worldwide, combined with the politically driven changes from institutionalizing older adults to live longer, independently at home, researchers at SEFAS have taken part in the public debate to argue that it is necessary to focus on and improve home care services for home-dwelling people with dementia and their informal caregivers. By April 2023, SEFAS has published about 20 articles with trial related data, and even more are in the pipeline, including the main article which focuses on resource utilization and caregiver burden. Additionally, the LIVE-team has disseminated the findings to the general audience through chronicles, interviews on radio, TV and newspapers. The project results are also disseminated through participation at national and international conferences, in the Directorate of Health’s ongoing working groups for palliative care, the Directorate for e-Health, and openness regarding death and dying. The researchers will continue to disseminate the results when they are published in the upcoming years, in particular with regard to the intervention effect on the primary outcome resource utilization and caregiver burden. Inspired by this work, we developed further applications and research and received funding both from RCN, Helse Vest, UiB, GC Rieber Fondene and a Consolidator ERC grant for the following projects: ActiveAging, DIGI.PARK; DIPH.DEM; DARK.DEM; and 5-D, respectively.

The provision of economically viable and proper care for the growing group of home-dwelling people with dementia (PWD) is one of the most pressing issues in our society. While a cure for dementia is not yet available, professionals and policy-makers highly prioritize the support of caregivers who experience a vast burden. However, there is a lack of high-quality research investigating clinical, social and economic factors that may add beneficial effects. This project aims to develop, test, and implement a complex intervention in PWD and families, intended to reduce informal caregivers` burden, which will lead to stay safely, longer and independently at home, with dignity and cost-effectiveness. In a randomized controlled trial, newly diagnosed PWD from memory clinics in Bergen and 9 other municipalities will undergo monthly supervision during the 12-month user-inspired and tailored LIVE@Home.Path intervention comprised by a) Learning and coping, b) Technology (ICT), c) Volunteers, and d) End-of-life care. Qualitative interviews will determine users` values and wishes, and promotors and barriers for successful implementation of the intervention. Compared to Controls, primary and secondary outcomes on cost-benefit analyses, cognitive, emotional and social factors, and QoL of PWD and families will be assessed, at baseline, every 6-month over 3 years. In cooperation with the specialised and primary care services and a strong multidisciplinary network of national and international partners, a clinical dementia pathway will be developed, involving communication of research results to patients, patient groups, and stakeholders. The applicant is among the leading scientist on pain in PWD and has high-ranking publications on effects of pain on behavioural disturbances, effects of pain treatment on agitation and depression, and complex interventions in nursing homes. A pilot study has been started to confirm user-involvement, and recruitment and implementation strategies.

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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering