Sarah Renouf1, Dominic Ffytche1, Rebecca Pinto1, Joanna Murray2, Vanessa Lawrence2. 1. Department of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK. 2. Health Services and Population Research, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Abstract
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.
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.
Authors: Johanna C Badcock; Frank Larøi; Karina Kamp; India Kelsall-Foreman; Romola S Bucks; Michael Weinborn; Marieke Begemann; John-Paul Taylor; Daniel Collerton; John T O'Brien; Mohamad El Haj; Dominic Ffytche; Iris E Sommer Journal: Schizophr Bull Date: 2020-12-01 Impact factor: 9.306
Authors: John O'Brien; John Paul Taylor; Clive Ballard; Roger A Barker; Clare Bradley; Alistair Burns; Daniel Collerton; Sonali Dave; Rob Dudley; Paul Francis; Andrea Gibbons; Kate Harris; Vanessa Lawrence; Iracema Leroi; Ian McKeith; Michel Michaelides; Chaitali Naik; Claire O'Callaghan; Kirsty Olsen; Marco Onofrj; Rebecca Pinto; Gregor Russell; Peter Swann; Alan Thomas; Prabitha Urwyler; Rimona Sharon Weil; Dominic Ffytche Journal: J Neurol Neurosurg Psychiatry Date: 2020-03-25 Impact factor: 10.154
Authors: María Cristina Lopes Dos Santos; María Victoria Navarta-Sánchez; José Antonio Moler; Ignacio García-Lautre; Sagrario Anaut-Bravo; Mari Carmen Portillo Journal: Parkinsons Dis Date: 2020-04-28