Abstract
Objectives
Visual hallucinations can occur in several clinical conditions, of which the dementias, broadly defined, and Parkinson’s disease rank amongst 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 employed qualitative methods to explore the visual hallucination experience of individuals with dementia or Parkinson’s disease and their informal caregivers.
Methods
In-depth interviews were conducted with 10 individuals with visual hallucinations and dementia and 11 informal caregivers, and 11 individuals with visual hallucinations 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 re-assuring those affected.
Visual hallucinations can occur in several clinical conditions, of which the dementias, broadly defined, and Parkinson’s disease rank amongst 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 employed qualitative methods to explore the visual hallucination experience of individuals with dementia or Parkinson’s disease and their informal caregivers.
Methods
In-depth interviews were conducted with 10 individuals with visual hallucinations and dementia and 11 informal caregivers, and 11 individuals with visual hallucinations 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 re-assuring those affected.
| Original language | English |
|---|---|
| Pages (from-to) | 1327-1334 |
| Number of pages | 8 |
| Journal | International Journal of Geriatric Psychiatry |
| Volume | 33 |
| Issue number | 10 |
| Early online date | 28 Jun 2018 |
| DOIs | |
| Publication status | Published - Oct 2018 |
Keywords
- dementia
- Parkinson's disease
- qualitative methods
- visual hallucinations