The CLEAR network: Building a multidisciplinary network to investigate Consciousness and Lived Experience in Alzheimer’s and Related dementias.

What is it like to have dementia? Understanding the lived experience of a person with dementia is essential to providing meaningful care and improving their quality of life. This is particularly important as dementia progresses to the advanced stages, when it becomes challenging for a person with dementia to express their experiences, feelings and needs. The number of people living with dementia is rapidly increasing and will reach 150 million people worldwide by 2050. As 60% of people with dementia are in the more advanced stages, there is an urgent need to understand how dementia impacts lived experience, and what can be done to help. Advances in neuroscience mean it is now possible to measure what someone is experiencing and feeling even if they are unable to speak or clearly communicate their experiences and needs. These approaches are based on simple recordings of brain activity and physical response. These state-of-the-art approaches have been developed across different fields of medicine and brain science. However, they have only recently begun to be used to understand the lived experience of people with dementia by teams in the UK and USA. This networking grant will bring together a multidisciplinary network of clinicians, data scientists, neuroscientists, health technology experts, and dementia care researchers. We will organise and deliver a two-day meeting to share ideas, plan future studies and grants, and launch a network of researchers to address this gap in our understanding and care for the growing number of people living with dementia worldwide.