New study seeks carers’ experiences of visual hallucinations in LBD

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 dependency 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 an LBD who have experience with these VH.

It is hoped from that this will help the research team understand what it is like to provide care to those experiencing visual hallucinations in the context of Lewy body disorders.

The study will be recruiting through to March 2020.

Inclusion Criteria:

1.     Participants should be over 18 years of age;

2.     Be or have been the informal caregiver (primary person who provides mostly unpaid help and support e.g., family member or friend) for somebody with Lewy Body Disorder (Parkinson’s Disease, Parkinson’s Disease Dementia or Dementia with Lewy Bodies);

3.     Whereby the care recipient has experienced visual hallucinations (seeing something that is not actually there) for at least four weeks throughout their caregiver’s time.

4. Be in North-east England or able to travel there for the research interview.

For further information please contact Jake by email on

Additional information can also be found in the two documents below:

Invitation Letter LBS V2.0

Participant Information Sheet V3.0