Investigating the views and experiences of using a digital legacy with people affected by Motor Neurone Disease (MND) [Best Oral Presentation: Peer Reviewed]

Motor Neurone Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS) is a terminal neurological disease with no known cure and an average survival of 2-5 years from symptom onset. The disease is insidiously progressive causing degeneration of motor neurones and ultimately affecting voluntary muscle movement throughout the body. Often this includes paralysis of the muscles involved with articulation resulting in severe communication problems. Palliative care is therefore a crucial aspect for families and those diagnosed with MND/ALS. One palliative care intervention for terminally ill patients is called Dignity Therapy (DT). This is a brief psychotherapy which encourages people at the end of their lives to reflect and record their past experiences and memories. With the assistance of a therapist, a written legacy is created from audio-recorded transcripts to be passed onto their family for when the patient has died. This project is investigating the use of an alternative type of legacy; a digital legacy. An overview of the research and intended procedure will be outlined in this presentation.