Understanding the meaning in activities and interactions for people with advanced dementia in a Scottish care home: An action research study

‘Meaningful activities’ is a term often used in dementia practice in relation to enhanced wellbeingand quality of life, yet what makes activities and interactions meaningful for people in theadvanced stages is unknown. This can risk unintentional exclusion from occupational, relationaland social opportunities or the selection of inappropriate activities, potentially invalidating theperson’s preferences and/or existence. Research actively involving this population is rarebecause of complex ethical processes, assumptions about the person’s ability to participate, andinflexible, inappropriate methods. Thus, an under-representation and/or exclusion of the voicesof people with advanced dementia (PwAD) has occurred.The aim of this study was to understand meaning in activities and interactions in collaborationwith PwAD, their family members and staff in a care home setting. Using a qualitative, ActionResearch methodology and creative methods, audio-visual data was collected over a six-monthperiod during three phases of Action Research. The study took place in one Scottish care homewith four PwAD, four family members, and six care home staff. Creative methods included usingimages and objects during family member interviews and staff focus groups, co-created activitieswith PwAD (e.g. walking, drumming, dancing), and a workshop with family/staff.Data was analysed using methods by Stringer and Aragon (2021) to create themes for eachphase, from which four key findings were developed. Finding One presents components ofmeaning, Finding Two highlights how the ordinariness of meaning can be inadvertentlyunderstated, or overlooked by others, Finding Three discusses potential signs of meaning, andFinding Four describes synchronising with PwAD during joint activities. This research contributesto the field by providing insights into what meaning in activities and interactions with PwAD canrepresent, how it can be recognised, and how this understanding of meaning can be used toenhance their participation in everyday life.