Making Sense of Visual Hallucinations in Lewy Body Dementia for Informal Caregivers: An Interpretative Phenomenological Analysis

Objective:
A growing body of research has outlined the adverse outcomes which may occur for those providing informal care in the context of visual hallucinations for those with Lewy Body Disorder (LBD). However, there is a lack of first-person, subjective perspectives from those providing informal care in this area.

Method:
Interpretative phenomenological analysis (IPA; Smith et al 2009) was deemed the most appropriate qualitative method to answer the research question: “What is the lived experience of individuals providing informal care to those experiencing visual hallucinations in the context of Lewy body dementia?” IPA is dedicated to understanding participants’ experiences by accessing the meaning they impart on the phenomenon.

Results:
Six caregivers of persons with LBD took part in semistructured interviews. All participants had experience providing informal care to individuals with visual hallucinations in the context of Lewy Body Disorder (LBD). IPA was conducted to get close to participants’ experiences. Five superordinate themes were identified, including (1) duty and devotion. (2) How do you make sense of something surreal? (3) Moving to a position of adjustment. (4) The horrible shape the illness takes. (5) Preservation and survival: “Easier said than done, but you just have to get through it.” Findings revealed that visual hallucinations shocked most caregivers, which was related to the appraisals attached to the phenomenon and cultural beliefs. All caregivers highlighted the importance of considering the broader context around the illness, which resulted in an inescapable subsuming awfulness.

Conclusions:
The identified themes illustrate how caregiving within the context of LBD was marked by continual loss and ongoing psychosocial difficulties, both of which required ongoing work to manage. Although formal and informal support was crucial to helping caregivers during their experiences, this was only sometimes available and resulted in a more arduous journey. Participants provided valuable insights that may be helpful for professional practice, especially in terms of illustrating how important it is for a program of psychoeducation to be offered alongside better access to support services more broadly. Further research is needed to understand the nuances around caregiving within this context from a cross-cultural perspective.