Ms Clodagh Whelan:

When we talk about disease modifying therapies, it is important to remember that the ones that are available now that we are discussing will only ever be for a very small cohort of people. As Dr. O’Philbin mentioned, services and supports bring hope as well. As an organisation we are very ambitious for the lives of people impacted by dementia. We believe we need to take a rights-based approach to their lives. We need to understand that there is a trajectory of the disease.

We spoke about people living with young-onset dementia. They are people like us in the room. They have jobs and families. Dementia is no longer simply an older person living in a nursing home. However, we are hopeful and ambitious for their lives right through the trajectory of the disease. We really hope that the Government and the State will ready themselves for those disease-modifying therapies but we can never forget that concurrently, we have to work on services and supports.

Our day care at home services are a really good example of that. Sometimes we tend to view care as the shower, the toilet, going to bed or getting up in the morning. Those things are foundational and they will never not be important but we are ambitious for the lives of people living with dementia. We want them to take walks, listen to music, to have hobbies and interests and to be in their communities. Our day care at home service offers that social support that all of us need. We talk a lot about care, helping people get out of bed, have a shower and get dressed. My question would be, what are they getting dressed for? What are they then doing? It is really important that we have the two things happening in parallel: the focus on investment, learning and readying ourselves for the drug therapies that we hope will come, while we still improve services and supports for everyone impacted by dementia.