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

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 vast 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, which will increase safety, and aid the PWD to live longer and more independently at home with dignity and cost-effectiveness. Participants are recruited from memory units in specialist and municipal health care in Bergen, Bærum and Kristiansand, and, according to the stepped wedge design, randomized in time to receive the LIVE intervention constituting of a) Learning, b) Innovation and technology, c) Volunteers, and d) Empowerment. 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 recruited 438 dyads of PWD and caregivers, of which 281 were included. 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 PANdemi in DEMentia (PAN.DEM), were we conducted telephone interviews with 126 dyads during April and May. 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. By June 2021 a total of 122 dyads were still in the trial. The final data collection will be completed in autumn 2021 after the last 6 months of follow up. Loss to follow up is mainly caused by nursing home placement of the PWD, which is an exclusion criterium. 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.

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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.

Publications from Cristin

Impact of COVID-19 restrictions on behavioural and psychological symptoms in home-dwelling people with dementia: A prospective cohort study (PAN.DEM)

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial

The acceptability, adoption, and feasibility of a music application developed using participatory design for home-dwelling persons with dementia and their caregivers. The “Alight” app in the LIVE@Home.Path trial

The impact of medication reviews by general practitioners on psychotropic drug use and behavioral and psychological symptoms in home-dwelling people with dementia: results from the multicomponent cluster randomized controlled LIVE@Home.Path trial

Access to and interest in assistive technology for home-dwelling people with dementia during the COVID-19 pandemic (PAN.DEM)

Age and emotional distress during covid-19: Findings from two waves of the norwegian citizen panel

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