Professor Mary McCarron:

I thank the members for a number of pertinent and critical questions. Regarding what we should do to make health promotion more accessible and to deal with the literacy issue for people with intellectual disability, we should not spend the next ten or 15 years trying to teach this population how to read and write. That is the first thing to say. If we do that, we would waste many valuable years. I am not saying that is not important. We should be considering adult literacy classes and so forth for this population, but we must also look at technology and other areas which will be more accessible. There are big efforts now in Ireland, particularly with a doctorate around technology and intellectual disability, in trying to make technology accessible for this population.

As part of IDS-TILDA we worked a great deal with people with intellectual disability. When we started this study it was said that these people would not be able to participate and that they would not be able to engage in this protocol, yet we have had a 98% retention rate from wave 1 to wave 2. We involved people with intellectual disability in the design of the study. They helped us to develop the accessible materials. Not only that, if members of the committee have a chance to look at the IDS-TILDA website, people with intellectual disability have acted out the key findings of the study. This is an effort to make things accessible to people. It has been a big focus. While a very strong conceptual framework underpinned this study, there was also a very strong values framework. That values framework was about making this study accessible to people with intellectual disability to enable them to take part. We have shown that this can be done. It has happened and we certainly can roll out the learning from IDS-TILDA to other walks of life. It is something that can happen.

The next question was about dementia and whether there was a difference with the general population. Yes, there is. People with Down's syndrome have a far increased risk of dementia. Overall, if one looks at all of the international studies, we are looking at a prevalence rate of 15% to 40% of people with Down's syndrome over the age of 40 years having Alzheimer's disease. The prevalence in the generic population is 4% to 8% in people aged 65 years and over. One of the over-riding reasons that people with Down's Syndrome are at increased risk is that in 95% of people with Down's syndrome the Down's syndrome is caused by having a triple copy of chromosome 21. We now know that key sites located in chromosome 21 are implicated in the cause of dementia, particularly the location of the amyloid precursor protein gene which is located on chromosome 21. This puts people with Down's syndrome at increased risk. They have an increased loading. Of course, there are also other factors.

Now that we know this population is at increased risk, we must begin to look at prevention. We must begin to examine what is happening around brain health for the general population.

Very little has happened in this field. A PhD student from Trinity College, Eimear McGlinchey, is part of the team. We have started the first brain training programme with financial support from Down Syndrome Ireland and in conjunction with University College Cambridge. It is looking at brain health in people with Down's syndrome. We know that things like physical activity, exercise and social connectedness are implicated in brain health. As we know that a genetic risk loading is associated with this population, we need to look at what we can do to prevent these problems from developing.

Senator van Turnhout also asked about issues relating to disclosure of abuse. This has not necessarily come through in the data we have collected to date. As we prepare for the third wave, we may want to look at some different areas that may help if they were uncovered. Certainly, issues of abuse have not emerged to date among people with intellectual disability who have self-reported.

Deputy Neville asked about mental ill-health, which is a major concern. Over 45% of the population enrolled in this study had mental health problems. Dr. Niamh Mulryan, who is present at this meeting, is studying the prevalence of mental health problems among this population in great detail. We know this is a serious issue. We can see that from the types of medications these people are taking. Ms O'Dwyer has spoken about the high use of psychotropic medications. Mental health problems represent a serious issue for this population. We also have other issues which we need to unpack as well. Sometimes there are problems with diagnostics, challenging behaviours and other environmental issues that can be misinterpreted. We spoke about the very high prevalence of things like osteoporosis. We know that people who have these conditions are at greater risk of fractures. It is very common for people in this population to have vertebral compressions. Very often, they are not able to complain of things like pain. Perhaps some of the mental health problems we are looking at can be attributed to things like an inability to report problems or undiagnosed pain. Mental health is a serious issue. Diagnostics can be complicated. It is certainly something we are looking at. Approximately 47% of this population presented in the first wave with a mental health problem.

Senator Burke asked whether there is a single co-ordinator in terms of an overall package. We need much more joining up of the various systems in areas like housing, health and disability services. It is often the case that these groups never come together in the same room to discuss how to solve some of these problems. We have systems which are probably fragmented. We need a much more co-ordinated approach to how we tackle and address some of these issues. Certainly the housing issue is a big problem. We are looking to move people from congregated settings out into community-based accommodation. Many services are struggling to get on the housing list. Perhaps people with intellectual disability will be at the bottom of the pile when it comes to things like the housing list. We need to look at that. Various working groups are actively trying to address those problems. The value for money working group is certainly looking at that at present.

The Acting Chairman asked me to suggest how people could be supported when it comes to employment. We certainly need to prepare people for employment. Education is one way of doing that. It is really critical. It was evident from this study that many people in this population do not even have primary education. Very few of these people had an opportunity to go to third level education. I am working in a third level institution, Trinity College, that has a certificate in contemporary living. It is open to very few people, however. We need to broaden out the educational opportunities for this population at primary, secondary and third levels. There have been some very successful efforts to support people in small pockets. These have involved bridge workers and support workers, etc. It can happen. Other countries have demonstrated that people with intellectual disability can be supported to have real jobs as long as the right supports are put in place. People want real jobs. It is really important that we commit to supporting that to happen. That is critical.