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

Å tilby økonomisk bærekraftig og forsvarlig omsorg for den voksende gruppen med hjemmeboende personer med demens (PMD) er en av de mest presserende utfordringene i dagens samfunn. En kur for demens finnes ennå ikke og pårørende opplever en stor byrde, derfor prioriterer både helsetjenestetilbydere og myndigheter støtte til pårørende høyt. LIVE@Home.Path er en randomisert kontrollert studie med implementering av en kompleks intervensjon for PMD og deres pårørende. Prosjektet har som mål å utvikle, teste og implementere en kompleks intervensjon for PMD som skal redusere de pårørendes byrde og ressursbruk, som igjen vil være kostnadseffektivt for samfunnet. Deltagerne er rekruttert fra hukommelsesklinikker og kommunale tjenester i Bergen, Bærum og Kristiansand. Deltakerne er randomisert i tid i (stepped wedge design), hvilket vil si at alle vil motta intervensjonen i løpet av studieperioden, tidspunktet bestemmes av randomisering. LIVE er utarbeidet i samarbeid med brukere, og er et akronym for de ulike delene intervensjonen består av dvs Læring, Innovasjon, Frivillige (V: Volunteering) og Empowerment, dvs medikamentgjennomgang og forhåndssamtaler. Gjennom kvalitative intervju vil vi få tak i PMD og deres pårørendes ønsker og verdier, men også hemmere og fremmere for en vellykket implementering av intervensjonen. Hovedutfallsmål er ressursbruk og pårørendebelastning, sekundære utfallsmål er bla livskvalitet, nevropsykiatriske symptomer og bruk av velferdsteknologi. I løpet av 2019 undersøkte vi 438 aktuelle par som bestod av PMD og pårørende, og av disse ble 281 inkludert i studien. Første gruppe fikk LIVE intervensjonen fra september 2019 til mars 2020, da var 237 par fortsatt i studien. Da Covid-19 pandemien gjorde det utfordrende å gjøre hjemmebesøk for koordinatorene og kartleggingspersonell, laget vi en egen pandemikohort, PANdemic in DEMentia (PAN.DEM) der vi gjorde telefonintervju med 126 deltakerpar i april og mai 2020. Fra juni 2020 startet hjemmebesøkene og dermed intervensjonen opp igjen, og vi gjennomførte andre gruppe i perioden juni til desember 2020 og tredje gruppe fra september 2020 til mars 2021. Ved avslutning av datainnsamling høsten 2021 var det 82 par som var igjen i studien. Frafall i studien skyldes i hovedsak at PMD fikk fast plass i sykehjem eller døde. Prosjektet ledes av Senter for alders- og sykehjemsmedisin (SEFAS) ved Universitetet i Bergen i tett samarbeid med Haraldsplass diakonale sykehus, Bergen, Bærum og Kristiansand kommuner, Høgskulen på Vestlandet, NORCE, Verdighetsenteret, og kolleger fra EU-COST Action TD1005, Worldwide University Network (WUN), Japan, Storbritannia, Nederland og 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.