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LIVE@Home.Path

LIVE@Home.Path is a collection of studies on people with dementia and their caregivers. The goal of the project was to develop knowledge about people with dementia living at home and how to improve the dementia pathway. The studies are now completed, and the final results and publications are in production.

Velferdsteknologi
Photo:
Grete Reimers

Main content

The number of home-dwelling people with dementia is increasing. Due to the development of the disease, people with dementia demands an increasing rate of help and support, both from health care professionals, and informal caregivers. There is a need to improve the health care services for this group; both to increase the quality of care, dignity and safety for the patients, but also to reduce caregiver burden and rate of institutionalisation. The complexity of the field and the multitude of individual needs suggest that isolated improvements are not sufficient to meet the growing needs.

LIVE@Home.Path aimed to solve some of these challenges by coordinating and integrating a variety of measures, individually adjusted to meet the needs of each patient and their caregivers. With the question «What matters to YOU?» as a starting point, we offered education to patients and their caregivers, combined with volunteer and technological support. Moreover, we offered education and support for general practitioners and the municipal home care services to increase inter-professional cooperation and increase the attention given to specific challenges, observations and possibilities for improving the care for people with dementia.

As part of the project we performed a variety of studies to gain knowledge about home-dwelling people with dementia as well as their surrounding support system.

Closing remarks

LIVE@Home.Path applies 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 are exploring how this multicomponent intervention can reduce 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 caregiver 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 along the trial.

We are now exploring the effect of the LIVE intervention on the trial’s primary endpoint caregiver burden and informal care time. Postdocs Renira Angeles and Line Iden Berge visited Yale university, US, in the autumn 2022 to work on the analyses together with Professor Heather Allore and Associate professor Fan Li. Fan Li did also visit SEFAS in September 2023, continuing working on the analyses and manuscript. Berge presented the trials preliminary results on the International Congress of Psychogeriatrics in Lisbon July 2023.

  • PhD student Marie Hidle Gedde used data from the LIVE trial and defended her thesis on the 16th February 2023: Behavioral and Psychological Symptoms of Dementia. The impact of medication reviews in multicomponent interventions and the consequences of Covid-19 restrictions
  • PhD student Maarja Vislapuu uses data from the LIVE trial and is close to submitting her thesis: Informal and formal resource utilization in people with dementia.
  • PhD student Eirin Hillestad at the Dignity Centre study volunteerism in dementia care by conducting interviews with volunteer coordinators.
  • Postdoc Nathalie Puaschitz at the Western Norway University of Applied Sciences works on implementation of assistive technology in dementia care.
  • Postdoc Renira Angeles, Norce, works on the cost of informal dementia care in economic evaluations.

We expect that the results will inform how we provide health care services to families affected with dementia in the near future.

Publications from the project

In the below articles, you can read about research results from the LIVE@Home.Path project. More publications are expected. 

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

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

"Less Is More: The Impact of Deprescribing Psychotropic Drugs on Behavioral and Psychological Symptoms and Daily Functioning in Nursing Home Patients. Results From the Cluster-Randomized Controlled COSMOS Trial." 

LIVE@Home.Path—innovating the Clinical Pathway for Home-dwelling People with Dementia and Their Caregivers: Study Protocol for a Mixed-method, Stepped-wedge, Randomized Controlled Trial.

Factors associated with access to assistive technology and telecare in home-dwelling people with dementia: baseline data from the LIVE@Home.Path trial.

The consequences of COVID-19 lockdown for formal and informal resource utilization among home-dwelling people with dementia: results from the prospective PAN.DEM study. 

Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD).

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

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