Professor Mary McCarron:

There were a lot of questions there but I might start with the last one, about people with Down's syndrome. The ageing of people with intellectual disability is something to be celebrated. This is the first time in history when people with intellectual disabilities have lived to old age. In the 1930s, somebody with Down's syndrome could be expected to live to about 12 years old. Now people are living longer, simply because of better care, interventions, social care, education and all the other things we know are important, but they are still dying earlier than the general population and are at high risk of Alzheimer's disease, in particular. We need to be ambitious for continued longevity and ensure that, as people age, they will continue to live in good health. Moreover, many people are presenting with more complex issues well before the age of 65. Our gerontological services and so on often talk about access over the age of 65. One issue we need to look at is the use of chronological age in terms of access, whereas it should really be based on need. Those are some important issues for us to consider.

As for future-proofing services, when our decongregation started, people with higher levels of intellectual disability remained in congregated settings and we moved people with higher functioning levels out into the community first. When we moved them, it was often with no staff support during the day and there were no staff there at night. Now, as they begin to develop conditions of older age, often 20 years earlier than the general population do, we do not have the infrastructure or resources to address the changing needs. Often, for people who have been moved from the family home into a congregated setting and then out into the community, at a time in their life when they are most vulnerable, they are then moved back into perhaps a bigger congregated setting than that which they moved out of. We really need to understand how we are going to support people to age in the home of their choice independently with supports in the community of their choice. That is a big issue and the commission on care will certainly be looking for older people and examining some of those issues.

When it comes to family caregiving as well, we have to understand that the majority of people live at home with families. Many of these families are ageing. There is often no plan as to how their family member will be supported. Often when that parent or sibling passes away, it is a crisis issue. Not only do the people with intellectual disabilities lose their parent or family member who is their primary carer, they lose their house. They lose their community. They are moved out of everything so they have a multiple of losses. We need to understand. Very few residential placements are coming up. We see the waiting list that there is. We need to understand what the model of care and what mobility options will look like and how we continue to support parents who need support. When people have done lifelong caregiving, we also need to ensure that there is future planning and that there is some place for people to transition into should that happen or else that services are enabled to support that person to continue to live in the family home should that be the case. They are some of those critical issues.

In terms of menopause, menopause occurs early. There are many reasons for this. It occurs much earlier in people with Down's syndrome, at approximately 41 years of age. There is increased risk, if someone has an earlier onset of menopause, of developing other conditions, including poor bone health, but also, in the Down's syndrome population, it is associated with increased risk of dementia.

We are working now with Stewarts Care and try to translate some of these findings to make change and developing, exactly as Deputy Ellis said, educational resources. We have a PhD student who is working with Dr. Burke. Perhaps she wants to speak to that.