This is an opportunity to give advice as a member of a steering group.
The date given above is not the date of the meeting, meeting dates will be arranged once participants are selected.
Dementia with Lewy bodies (DLB) is the second most common type of degenerative dementia following Alzheimer’s disease (AD). It is closely related to Parkinsons’ disease (PD). It accounts for at least 4.2% of all dementia diagnosed in the community.
It is important to differentiate DLB from other types of dementia because specific types of drugs called antipsychotics can be very harmful in DLB. However, DLB can be difficult to diagnose, with only 30% of cases being identified in many places. Often more than 10 clinic visits are needed before a correct diagnosis is made. A test that is able to differentiate between DLB and other types of dementia may help to improve rates of diagnosis.
α-Synuclein (αSyn) is a protein forum in the brain and other parts of the nervous system of people with DLB and PD. Recent studies using a simple and safe technique called a punch biopsy have found that αSyn can be identified in the skin (cutaneous) nerves of people with Parkinson’s disease.
In this study we will recruit 10 people with DLB, 10 with PD and 10 healthy older people. Each will have a punch biopsy along with a clinical assessment. The punch biopsy removes a cylindrical sample of skin that is 3mm in diameter (less than half a centimetre wide). The skin sample will be stained with chemicals that identify αSyn and examined using a microscope.
This study aims to confirm that we can identify αSyn in the skin nerves of people with PD and DLB. If this is the case, and healthy older people do not have αSyn in their cutaneous nerves then it may be a useful diagnostic test for DLB.
This study involves punch biopsies, which had not previously been carried out in dementia research in Newcastle. The PPI panel was influential in framing our participant information sheets and developing a questionnaire on participant experiences.
More members for the PPI steering group for the study are required.
Anyone can be a member of the group. People with experience of Parkinson's disease or dementia would be particularly well placed to advise.
As a member of the steering group for this project you would be required to attend two meetings over the course of 2018. Meetings will last for approximately 1-2 hours.
We will present our findings from the patient experiences questionnaire to the panel and discuss study progress. This information will be the basis of a discussion with the PPI panel on the acceptability of the use of this technique in further studies.
Following this pilot project it is likely that a large grant application will be developed and group members would be invited to be involved if they wanted.
Meeting dates will be arranged at a time to suit the group members. They will take place at the Campus for Ageing and Vitality, Newcastle University.
Travel expenses will be reimbursed and parking will be paid for.