How creative activities impact emotional processing of pre-death grief in carers of people living with rare dementia

Abstract

Although 5%-15% of people living with dementia have a rare dementia, there remains a significant lack of resources needed to support affected individuals. The Road Less Travelled: Our Journey with Grief and Loss is a programme for carers of people with a rare dementia combines informational and creative aspects to help explore caregiver experiences of pre-death grief. The objective of this paper is to investigate how creative activities may impact emotional processing of pre-death grief as well as the nuances underpinning the implementation of such activities in caregiver interventions. The programme included nine rare dementia caregivers and two facilitators. Professional transcripts of the video recordings of the programme sessions and post-programme participant and facilitator interviews were thematically analysed using NVivo V.12. Four key themes were identified: 1) creative elements enable emotional processing 2) barriers to engaging with creative components 3) creativity as a catalyst 4) practicalities linked to incorporating creative elements. The analysis found that despite some variability in the group members’ experiences of the creative activities, they were largely helpful for emotional processing and barriers to engaging with creative activities emphasised aspects of ‘timing.’ Additionally, the results highlighted the complexities of incorporating creative elements into such programmes. The implications of these findings go beyond the scope of this particular programme, providing helpful insights into the creation/implementation of other caregiver interventions and paving the way for further research into the area of creativity and caregiver wellbeing