Following the National Dementia Strategy and the Government’s 2020 Dementia Challenge dementia is a priority area for NIHR research funding with a target of increasing the numbers of participants with dementia into clinical research trials to 10% of this patient group. The NIHR has been supporting recruitment of people living with dementia through the NIHR Join Dementia Research register, the ENRICH Engaging Research in Care Homes network and the NIHR Clinical Research Network DeNDRoN. Focused funding calls are also increasing the breadth of research and increasing capacity in this area. Recruiting people living with dementia to research studies however can be challenging. This paper discusses what researchers need to consider when planning a study involving patients with dementia.
Many people with dementia will not have capacity to give informed consent to take part in research. The Mental Capacity Act 2005 (MCA) governs how we decide whether a patient has capacity. The MCA is a very clear piece of legislation and before conducting research involving patients living with dementia, you must become familiar with its content, particularly sections 30 to 34 which cover research. Your knowledge of the act needs to be demonstrated in any funding or research ethics application.