It was great to see Trinity College Dublin's news page cover a recent webinar from the National Intellectual Disability Memory Service at Tallaght Hospital. In addition to Professors Mary McCarron and Seán Kennelly, who established the service, the webinar had the special guest speaker Dr Juan Fortea, who spoke of some of the intersectional aspects of health inequities for people ID, as well as highlighting his work with the Down Alzheimer Barcelona Neuroimaging Initiative and international consortia. He mentioned that there appears to be more funding for research on this topic in the United States, although the incidence of Down Syndrome is higher in Europe. He also spoke about the value of research in enhancing quality of life for people with Down Syndrome, and highlighted that barriers to participation in research could well be considered a form of discrimination against people with Down Syndrome.
The National Intellectual Disability Memory Service will work in assessment, diagnosis, post-diagnostic support, and research. Assessing any patient for dementia is complicated, but this is particularly true in the context of intellectual disability, where physicians cannot assume a typical baseline level of cognitive performance or independence in daily living. The onset of dementia is younger on average in people with ID, so the potential to capture baseline cognitive performance and independence at a younger age (e.g. mid-thirties) will allow for a clearer picture of any decline. Professor Seán Kennelly highlighted the importance of appropriate disclosure of diagnosis, as well as how post-diagnostic support should take into account lifestyle factors such as sleep and physical activity.
The National Intellectual Disability Memory Service aims to develop satellite clinics across Ireland, so patients from around the country will not necessarily have to travel to Tallaght in Dublin for assessment. Professor Mary McCarron also underlined the value of telemedicine in helping to address equity of access, particularly in this time of the COVID-19 pandemic. A recent guide to memory clinics highlighted that there were no memory clinics for the general population in the Northwest of Ireland, despite this region having the highest prevalence of dementia, and to the best of my knowledge there is no national memory clinic for the general population. Notwithstanding that general memory clinics will see a higher number of patients, the NIDMS is clearly setting a very high standard in this arena.
The webinar is available at the NIMDS webpage: https://www.tcd.ie/tcaid/research/NIDMS.php