Caregiver experiences: Visual hallucination in Lewy body disorders.
Research type
Research Study
Full title
A qualitative exploration of the lived experience of informal caregivers of people who have visual hallucinations in the context of Lewy body disorders.
IRAS ID
263941
Contact name
Angela Prout
Contact email
Sponsor organisation
Teesside University
Duration of Study in the UK
1 years, 4 months, 0 days
Research summary
Visual hallucinations (VH) are the experience of seeing something that is not actually there. They can occur in those who are healthy, but are more common in people with brain deteriorating illnesses affected by Lewy body disorder (LBD); this includes those suffering from Parkinson's disease, Parkinson's disease dementia and dementia with Lewy bodies. As these illnesses progress and symptoms worsen, there comes an increased dependancy on informal caregivers. Informal caregivers are defined as those who provide mostly unpaid help and support to people with physical and/or psychological disorders.
Of the limited research, some studies have specifically linked VH in the above illnesses affected by LBD with negative caregiver outcomes, as examples: increased caregiver burden and emotional distress. Despite this, relatively little is known about these experiences. Hearing about these experiences from caregivers is needed in order to further understand this and it is hoped that doing so may identify certain needs that caregivers have in relation to caring for those with LBD experiencing VH. This research will ask caregivers about their experiences of providing care to those with VH, asking how often they occur, what the experience is like, and what they understand to be going on and what impact it has on them.
To gather this rich information, Jake Hutchinson (Student Researcher, Teesside University) will have interviews with up 12 people who provide care to those diagnosed with a LBD who have experience with these VH.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
19/NE/0316
Date of REC Opinion
5 Nov 2019
REC opinion
Further Information Favourable Opinion