What is the Care Home Research Network?
The Care Home Research Network is a community of care homes in south London that are working with King’s College London to support research into dementia. The homes receive training and support to help them take part in research studies, for example into new treatments or ways of caring for people with dementia.
Why is research important?
There are currently 850,000 people with dementia in the UK, of whom at least 280,000 live in care homes. Despite these large numbers, it still remains that little research conducted to improve the treatment and care they receive. The Care Home Research Network aims to deliver a unique, valuable infrastructure for research in order to improve the lives of people living with dementia.
Despite these large numbers there is a huge amount that we still don’t know about the condition. Research is the only way to increase our understanding, develop new and better treatments for the future and to improve the way we care for people today.
At least 250,000 people with dementia live in care homes. Through research we can improve their quality of life and wellbeing, and understand how to work better with their families. Research also helps us to provide better information for health professionals and care staff.
For involvement in research, we ensure that all next of kin give both written and verbal consent for any participant in our research. For relatives and/or next of kin giving consent for participants to be involved in research we give/send out:
- A document explaining what the CHRN is about
- A covering letter from the care home manager
- An information sheet explaining the research study
- A consent form
- An opt-out form
All next of kin are required to sign and initial a consent form to ensure they understand why the research is taking place, what the research involves, and that they have the choice withdraw from the study at any point.
Once the CHRN team receive the completed consent form a team member will contact the next of kin to make sure they understand why the research is being conducted and whether the next of kin have any questions.
For example, if DNA needs to be taken from the participant, a CHRN team member will contact the next of kin to ensure they are happy for the DNA to be taken, explain the process of taking the DNA, and to answer any questions the next of kin may have about the process.
In one study the CHRN team are carrying out (the Longitudinal Study) DNA extraction is required. At first this may seem like quite a daunting process, however we feel it is important to clarify that this is not an invasive procedure and involves a simple cotton bud swab on the inside of the residents cheek as demonstrated below:
Once the DNA swabs have been taken, the researchers will place them into a sealed envelope which will then be posted off to our BioResource centre. It is also important to highlight that throughout this process the participant will only be identified by a unique identification number and will be unknown by name or personal details.
If you or your relative has been invited to take part in the Network you can find out more information by talking to the care staff at the care home. A researcher from our team will also visit the care home to explain involvement in more detail and can clarify any queries you may have in regards to the research. No one is obliged to take part.
If you or your relative is residing in a care home in London and surrounding areas and you would like to find out more please ask the care staff at the home to contact us to enquire about becoming a member.