This study focuses on finding better ways to assess and manage Parkinson's disease. The study aims to validate two machine learning algorithms, developed respectively by PragmaClin Research Inc., and researchers at the Tyndall Institute in collaboration with the Centre for Gerontology and Rehabilitation at University College Cork (UCC). These algorithms are both designed to analyse data collected from video recordings and wearable devices to provide a rating of PD symptom severity.

Challenge. Caring for the increasing numbers of people across Europe with advanced dementia and palliative care needs who live in care homes is difficult and demanding. People with advanced dementia can be immobile, non-verbal and unable to take part in day-to-day activities. They can be unsettled or agitated, with low quality-of-life and elevated levels of discomfort. Family members can find it difficult to connect meaningfully with their relative and are anxious about the future.

1 in 10 people in Ireland who are diagnosed with dementia are aged under 65, and this is termed “Young Onset Dementia”. The impact of a diagnosis at this time of their lives is huge, and also greatly impacts families, where young children may be involved. However, services in Ireland have typically overlooked this group, being targeted towards the needs of a much older population.

Young onset dementia (YOD) varies in many respects to typical aged dementia. The person with YOD will live with an increasing number of cognitive, neurological, psychological, emotional, economic and social changes. There are about 4,000 people with YOD in Ireland. A recent Irish report on YOD (Fox, Cahill, McGowan, & Kilty, 2020) emphasised the urgent need for improved health services and community supports to provide comprehensive and individualised care for Irish people living with YOD.

Our research aims to explore media supports used by Irish families who care for or have recently cared for a loved one with dementia. Media supports may include podcasts, radio shows, television programmes or adverts, websites, apps, physical information sheets, and other forms of information provision. We want to find out if Irish families caring for a loved one with dementia use resources of this type, if they are suitable, and how they are used in dementia care.