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Visual hallucinations in dementia and Parkinson's disease: A qualitative exploration of patient and caregiver experiences
Author(s) -
Renouf Sarah,
ffytche Dominic,
Pinto Rebecca,
Murray Joanna,
Lawrence Vanessa
Publication year - 2018
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.4929
Subject(s) - dementia , psychology , thematic analysis , visual hallucination , distress , affect (linguistics) , focus group , disease , context (archaeology) , clinical psychology , stigma (botany) , qualitative research , social stigma , psychiatry , developmental psychology , medicine , family medicine , pathology , marketing , human immunodeficiency virus (hiv) , sociology , business , biology , social science , paleontology , communication
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.