Visual hallucinations in dementia and Parkinson's disease: A qualitative exploration of patient and caregiver experiences

Objectives: Visual hallucinations (VHs) can occur in several clinical conditions, of which the dementias, broadly defined, and Parkinson's disease rank among the most common. There is limited research on the lived experience of hallucinations among affected individuals and therefore a lack of evidence-based management strategies. This study used qualitative methods to explore the VH experience of individuals with dementia or Parkinson's disease and their informal caregivers.

Methods: In-depth interviews were conducted with 10 individuals with VHs and dementia and 11 informal caregivers, and 11 individuals with VHs and Parkinson's disease and 9 informal caregivers. Interviews were analysed using an inductive thematic approach.

Results: Three themes emerged from the data: "Insight and distress," "Caregiver approach: challenging v reassurance," and "Normality and stigma." Insight appeared to affect whether hallucinations were perceived as threatening and whether acceptance occurred over time. Emotional reactions and management strategies varied as insight changed with disease progression. Concerns around stigmatisation negatively influenced help-seeking and acceptance of the hallucinations.

Conclusions: Degree of insight and cognitive ability appear fundamental to the lived experience of hallucinations. Irrespective of the clinical context, support in early stages should focus on raising awareness of VH, symptom disclosure, stigma reduction, and contact with others affected. In later stages, the focus shifts to informal caregiver needs and a flexible approach to reassuring those affected.