NEWS

We are welcoming some fantastic keynote speakers to our Ageing Well conference this summer

This summer we are welcoming some fantastic keynote speakers to our Ageing Well with Dementia and Learning Disabilities conference.

Professor Mary McCarron, PhD RNID RGN BNS FTCD is Professor of Ageing and Intellectual Disability, Director of the Trinity Centre for Ageing and Intellectual Disability and Executive Director of the National Intellectual Disability Memory Service. Professor McCarron has held many senior leadership roles in Trinity College including Dean of the Faculty of Health Sciences and Head of the School of Nursing and Midwifery.

Professor McCarron is a recognised international leader in the fields of intellectual disability, ageing, dementia and palliative care. She is the founder and Principal Investigator for The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a global first. Prof McCarron is also a champion of patient and public involvement in research (PPI) and IDS-TILDA continues to provide PPI opportunities for people with intellectual disability.

Professor McCarron has led a longitudinal cohort study in dementia in people with Down syndrome spanning over 25 years. She has always had the person with an intellectual disability at the heart of her work and her research, and she has been a pivotal figure in developing a positive, person-centred culture at local, national, and international level. She has a particular interest on the impact of the environment on persons living with dementia and her award-winning approaches to dementia design has greatly impacted on quality of life of those living with dementia.

Her special interest in this area has driven to the development of Ireland’s first dedicated National Memory Service for people with an intellectual disability in Ireland addressing inequities in access to timely dementia assessment and person centred post diagnostic supports for those living with dementia.

We asked Professor McCarron to tell us more about her views on the key challenges and developments around people ageing with an intellectual disability and dementia, what she’s working on at the moment, and why we need to sit up and take more notice of these important issues at this point in time.

What do you think are the most important developments and challenges that we should be aware of around people ageing with an intellectual disability and dementia?

There is an increased prevalence of dementia in persons with an intellectual disability, with the incidence of dementia five times higher than in people without an intellectual disability. Risk for dementia increases from 23% in those aged 50 years to 80% in those aged 65 years and above.

Dementia care is a challenge for family caregivers and for service providers. Symptoms of dementia challenge the emphasis on skills acquisition prevalent in programming philosophies in service. Despite this high risk, services, both in the general population and intellectual disability specific services are ill prepared to provide post-diagnostic support to people with a intellectual disability and dementia and their carers, meaning unequal and inadequate access to supports for many across the country.

The National Memory Clinic has provided people with an intellectual disability equitable access to safe, timely, person-centred dementia assessment, diagnosis, treatment options and post-diagnostic supports through to compassionate end-of-life care. People with an intellectual disability, their carers and service providers have opportunities to actively partner with researchers to facilitate research and advance understanding of dementia and brain health.

Tell us a bit about the research you are currently working on.

People with an Intellectual Disability are at greater risk of developing dementia than the general population. In particular, those with Down syndrome (DS) are the world’s largest group with a genetic predisposition for Alzheimer’s disease (AD). I am working with the Horizon 21 Consortium to identify early bio markers for dementia and further validate diagnostic test instruments.

While some intellectual disability services have been able to provide specialised supports, they are only for the people who use their service, and services for the general population need assistance in understanding how best to support this group. This results in unequal and inadequate access for people with intellectual disability and dementia to post-diagnostic supports.

Such inequity was recognised by the National Working Group on Dementia, and, in 2018, the Government invested in a National Intellectual Disability Memory Service for people with intellectual disability (NIDMS) based at Tallaght University Hospital, in partnership with the Trinity Centre for Ageing and Intellectual Disability and the Daughters of Charity Disability Support Service. I am founder and Executive Director of this Service, which builds on the outstanding work already completed at Daughters of Charity Disability Support Service in Ireland.

I am Principal Investigator of ‘Including best practices and the voices of experience in developing post-diagnostic dementia support guidelines for people with an intellectual disability.’

The aim of the study is to develop accessible best practice guidelines for post-diagnostic dementia supports for people with an intellectual disability in Ireland.

This will be achieved through identifying current guidelines/recommendations on post-diagnostic dementia care nationally and internationally for the general population and for people with an intellectual disability, understanding the current landscape of post-diagnostic dementia support for people with an intellectual disability in Ireland, understanding the lived experience of accessing and using post-diagnostic dementia support services for people with an intellectual disability and down syndrome and their families and desires for post-diagnostic services and identifying gold standard approaches/guidelines to post diagnostic dementia care from specialist intellectual disability service providers.

Why is this topic – Ageing with an intellectual disability and dementia – so important and timely to explore now?

Like the general population we have seen a dramatic increase in life expectancy of people with an intellectual disability and particularly those with Down Syndrome, and this is to be celebrated. However, increases in life expectancy have led to new ageing-related health concerns particularly for those with Down Syndrome where dementia is about 5 times higher than the general population.

We need to tackle this at many levels, firstly in terms of Brain health and prevention, early diagnosis and robust and person centred post diagnostic supports. We need clinical trials and despite the increased risk of dementia we have limited understanding on treatment and prevention.

In a 20 year longitudinal study in Ireland, cumulative lifetime risk of developing dementia among people with DS was 23% at age 45, 55% at age 55 and an 88% risk by age 65 (McCarron et al., 2017).

There remains a major gap in research on post-diagnostic dementia supports for people with intellectual disability, their families and support workers. Additionally, we lack knowledge on the supports needed for people at different stages of dementia and in different living arrangements (family, group homes, residential settings).

Our more recent study which has just commenced aims to address this gap and ensure that the voice of people with intellectual disability, their families and paid carers will also inform the recommendations for post-diagnostic supports for people with intellectual disabilities living with dementia in Ireland.

Professor McCarron will be speaking more about the work of IDS TILDA in driving Evidenced Informed Policy and Service transformation for People Ageing with an Intellectual Disability and Dementia in Ireland at our Ageing Well conference this summer.

“I’m looking forward to the sharing of expertise and experiences across countries.” – Professor McCarron

Find out more about our inspiring programme of speakers and workshops here>