Professor Mary McCarron:

I thank the Acting Chairman and the members of the Joint Committee on Health and Children for the opportunity to discuss ageing of people with an intellectual disability and to understand the implications of this ageing for the design of policies and the support of their quality of life. The intellectual disability supplement to the Irish Longitudinal Study on Ageing, follows a representative sample of 753 people with an intellectual disability aged 40 years and older. It compares their ageing to that of the general population with data yielded by TILDA. This is the first time in history that we have had a population of people with intellectual disability reach old age. The average lifespan of people with Down's syndrome has increased from nine years in the 1930s to 60 years and older today and while this advance is to be celebrated, there are some serious health concerns that we need to better understand. A recent study here found that mortality among people with an intellectual disability is almost four times higher than that among the general population, with the average age of death at 55 years which is 19 years earlier than the 74 years average age of death for the general population. There are some serious gaps in our knowledge about what is driving this higher mortality rate and about the health and well-being of this population.

Other countries have not been successful in including people with intellectual disability in their longitudinal studies on ageing but Ireland has. It is the first country in the world to include people with intellectual disability in tandem with a generic study on ageing.

I would like to draw members' attention to a number of areas, on which greater detail can be found in the submission and in the relevant reports from IDS-TILDA. I will first draw members' attention to the area of dementia. Recent findings from the IDS-TILDA found that over a three year period from 2010 to 2014, the prevalence of dementia has doubled in people with Down's syndrome from 15.8% to almost 30%. We know the average age of onset of dementia among this population is about 51 years, so we are looking at a much younger and at much higher prevalence of dementia than that reported among the general population, which is estimated to be between 4% and 8% in people aged 65 years and over. Many of the comorbidities which develop or co-exist with dementia in this population are also quite different. For example, almost 80% of people with Down's syndrome who develop Alzheimer's dementia will also develop new-onset epilepsy or seizure activity. This is unique to this population. We see about 10% new-onset seizure activity developing in dementia in the general population.

Assessment and diagnosis of dementia in people with Down's syndrome or with intellectual disability at large is complex and there are various reasons for this. There is no quick five minute screening for dementia in this population. I very much welcome the national strategy on dementia which has specifically identified people with Down's syndrome as a priority area for improvements in services. It is 20 years, however, since there were international guidelines on care issues and recommendations on the care and assessment of dementia in persons with an intellectual disability. Unfortunately, in Ireland and in other countries, many people with intellectual disability fail to get a diagnosis. When there is a diagnosis, often the intellectual disability services feel they do not have the know-how, the resources or the expertise to continue to provide care. When people seek assistance from generic services, such as health services, generic memory clinics and even palliative care providers, these services also feel they do not have the expertise or resources to support this population. Older people with intellectual disability and dementia are falling between two care systems, often with no one accepting responsibility.

That this population is developing dementia should not be a surprise. The data are very clear. The data from IDS-TILDA confirm that dementia is experienced earlier and more frequently in people with intellectual disability. There are some models of best practice developed in Ireland, particularly those of the Daughters of Charity and St. Michael's House. We need to look at these models and roll out similar models on a regional basis, ensuring there is equity of access to diagnoses and care.

I will now turn to the area of bone health and osteopenia or osteoporosis, often known as brittle bones. In wave two of IDS-TILDA we found that rates of diagnosed osteoporosis were 16.4%, slightly higher than that reported by TILDA for the general population, at 14.3%. However, what was very concerning was that when measured objectively, we found very high levels of osteopenia, 37% compared to 14% among the general population, and of osteoporosis, 35% compared to 28% among the general population. This meant that seven out of ten people in Ireland with an intellectual disability and who were over the age of 40 had poor bone health and most were undiagnosed. With the added risk loading for poor bone health among this population, it is also concerning that screening levels were low at about 25%. Given the evidence now emerging from IDS-TILDA, specific strategies around regular screening, objective assessment, targeted prevention and intervention programmes and education are imperative.

It is important to understand that seven out of ten people who participated in our study reported that they could not read instructions such as those on medicines or in health promotion material. A similar number of participants could not read accessible information or easy read information and over 50% could not sign their own name or recognise basic numbers. This means that many people with intellectual disability will not understand information given by a doctor, a nurse or other health care professionals. It is not good enough to display easy read material in a waiting room. We recommend, as demonstrated by the data, that health care professionals need additional education around the development of communication with people with intellectual disability. Many health care professionals fail to communicate in a manner that enables a genuine understanding of the care being offered and we need to address this urgently.

I will now highlight the issues for family carers. The family networks of older people with intellectual disability look very different to that of the general population. People with intellectual disability are generally single, unmarried and do not have partners, children or grandchildren to assist with their care as they age. Almost 68% of adults with intellectual disability continue to be cared for at home, many by family carers who are themselves ageing and dealing with their own health care needs. IDS-TILDA has also found that many are being cared for by sibling carers. We talk about the sandwich generation among the general population but the sibling carers of people with an intellectual disability are part of what we might call a triple-decker sandwich generation who care not only for their own families and their ageing parents but also for the family member with an intellectual disability.

Two thirds of family members gave approximately 60 hours of care per week and 48% spoke of feeling completely overwhelmed.

The IDS-TILDA evidence strongly suggests that a critical component in reducing reliance on congregated settings will be the quality and resourcing of supports for family carers. We already know that one of the major policy initiatives is to move people with intellectual disability from congregated settings into more community-based alternatives. Given the data, one of the first things we must ensure is that those who are already living in the community are supported to continue to do so. During the period 2010-2014, approximately 120 people reported having moved residence. However, it is concerning that only 30 of those moved from congregated settings to community-based settings. The majority of those moves were lateral moves to the same type of setting.

IDS-TILDA demonstrates that there is a need to understand the progress, the facilitators, the barriers and the outcomes of community-orientated services for people with intellectual disability. The first wave of data from IDS-TILDA provides data and baseline information on people’s quality of life, relationships, and health prior to the move. There must be a commitment to monitoring and tracking what happens after the move. Forthcoming waves of IDS-TILDA offer that opportunity.

As Ireland launches its health reform agenda, key policy documents, including Healthy Ireland – A Framework for Improved Health and Well-Being 2013-2025 and the Move from Congregated Settings, have set forth priorities and challenges for the ageing of people with an intellectual disability. Just as The Irish Longitudinal Study on Ageing, TILDA, is gathering and presenting general population data to inform these efforts, IDS-TILDA is ensuring that there is the same high quality data on people with intellectual disability. The data are raising the visibility of the needs and experiences of persons with intellectual disability as they age and encourages the cross-walking of that information between specialist intellectual disability services and generic public health environments. It ensures there is evidence to underpin policy so that we can ensure not only that we have added years to life for people with intellectual disability as they grow old but also, critically, that we have added life to years.

It is my hope that this committee will accept the challenge of ensuring that the data being gathered by IDS-TILDA are utilised effectively in the formulation of policies around disability, health and ageing. I thank the committee for the opportunity to make this presentation and I am very happy to answer any questions.