‘It’s good to talk to someone about these issues’: facilitating shared decision making with people with MCI/early stage dementia and their family caregivers

Abstract

This presentation reports on the outcomes from an innovative early-intervention for people with mild cognitive impairment (MCI), or a diagnosis of early-stage dementia, and their caregivers (the Dyad). The experiences and outcomes of three participant dyads will be presented using a case-study format. How the intervention was received by participants and the challenges associated with engaging with and implementing early intervention/forward planning strategies with people with a progressive incurable condition will be discussed. The Shared Care study used a quasi-experimental design with a non-equivalent control group. The in-home intervention consisted of seven sessions in which dyads (n=39) worked with a facilitator to discuss their current and future care expectations with respect to preferences for care providers (formal and informal) and settings (home and/or residential care). The sessions aimed to inform and empower the dyad to respond and manage issues they may experience during the disease/caregiving course. Thirty-five dyads completing the intervention, intervention effectiveness in assisting dyads to manage the consequences of dementia was evaluated using a mixed-method analysis. Some dyads (n=4) found reflecting on changes to capacity/functioning to be challenging and withdrew from the study. The majority (74%) of dyads who completed the intervention stated they felt better informed and identified tangible actions taken to plan for the future. Early intervention creates a window of opportunity for involving the person with dementia, whilst they are still able to participate in care-related discussions but the results indicate that acceptance of forward planning approaches is influenced by gender, age and dyadic relationship.