How PPI saved my study

From a 2014 issue of our Care and Cure research magazine, read about how involvement of people with dementia helped to save one researcher's study.

The involvement of people affected by dementia is a central part of the Alzheimer's Society research programme. One example of this is how our Research Network volunteers saved a project by helping the researcher to get ethical approval.

Michael Head, a researcher at University College London, approached Alzheimer's Society when his study into scabies in nursing homes was stalled. Scabies are contagious parasitic mites that can spread easily in residential care but are difficult to diagnose and manage in the elderly. As over 60 per cent care home residents havedementia, the researchers were having trouble getting the study approved by their research ethics committee.

'We had an ethical conundrum on getting consent from people without capacity.'

explains Head.

The Society put forward two of Research Network volunteers, Sylvia Wallach and Tricia Best, both with experience of dementia in care homes, to work with the research team and improve their study design.

'Being involved in the study was helpful for me to see what was happening in research.'

says Wallach.

'In my parents' care home there had been a suspected case of scabies and they were subjected to being covered in cream to treat it. The outbreak was never confirmed, but all staff and residents had to go through the treatment. So I had a personal interest in the study because of my parents, but I was also able to help on another level.'

The problem for the study was getting consent on behalf of residents quickly enough to study an outbreak of scabies as soon as it started. Informed consent might not be possible from a person with dementia and getting written consent from all the families involved would take too long.

'I had been involved in another study looking at pain issues and put Michael in contact with the principle investigator. That study got verbal assent over the phone from the guardian, and then got written consent afterward.'

Wallach recalls.

Head applied this process to his study design and this time received ethical approval. Having spent the initial pilot grant to look into this project, the team led by Professor Jackie Cassell at Brighton and Sussex Medical School was able to get another £170,000 to expand the study.

'We wouldn’t have got that if we didn’t have ethical approval in place.'

says Head.

'We have covered six outbreaks so far. The study is still ongoing but we're getting really good data. We're looking to see if people with dementia have a higher risk of getting scabies, but we can’t say that for sure right now.

'We're now also looking at influenza cases in care homes, so this has a snowball effect, leading to further studies on infectious controls in care homes and people with dementia.'