Emerging research from a Trinity team has shown that those with Down Syndrome are more likely to develop dementia and to do so at an earlier age. A longitudinal study, which annually assessed 77 women over 35 years of age for symptoms of dementia, found that, over the last 20 years, 97.4% of participants developed dementia. Development occurred at the average age of 55. Their findings included predictions of 88% of a Down Syndrome population developing dementia by 65 – much higher than the the 5% to 7% of the same age in the general population.
According to the lead researcher, Professor Mary McCarron, there is a strong indication in these findings that “ageing is now a success story in people with intellectual disabilities”. Whereas fifty years ago, surviving beyond the age of 9 would have been “unimaginable” for people with Down Syndrome, now things have changed entirely.
McCarron, and others in her field, are beginning to face problems in healthcare as this increase in life expectancy occurs. These problems must be anticipated and planned for in order to ensure a consistently better quality of life for people with intellectual disabilities.
This research, published in the Journal of Intellectual Disability Research, is unusual in seeking seeks to specifically study the experiences and changing needs of those with intellectual disabilities. This Irish Disability Supplement to the general Irish Longitudinal Study on Ageing also makes Ireland the first country in the world to run a longitudinal study on people with intellectual disability, in tandem with one on the general population.
This study, backed by the Health Research board, has already generated novel recommendations to the government for its national dementia strategy. These are that the intellectually disabled, including but not limited to Down Syndrome, should be “afforded the same level of investigation, follow-up and support” in caring for their dementia as is provided for patients in the general population.
The implementation of these recommendations has begun, led by researchers with support from charitable organisations such as Down Syndrome Ireland. Designs are being made for two purpose-built homes for Down Syndrome and dementia patients, one for patients in the early stages of dementia, where specialist diagnostic and caregiving training will be provided for professionals, and one of a smaller capacity for end-stage palliative care. The HSE is interested in using the design of these homes to improve dementia care for the general population, making this an interesting example of research approaches being used to change infrastructure.
When considering these future problems, McCarron’s team are mindful of the hurdles they have faced in their work thus far. From securing funding, to running the study over the last twenty years, a recurring point of contention has been encountered by the team: convincing people that making minor changes to improve accessibility can make a real difference to participation in research. Without accessibility the intellectually disabled can never hope to fully engage with projects such as this, as they should.
The research group found that by welcoming women with Down Syndrome into the study who were “really interested in learning about their condition and their care”, the study facilitated a “participatory approach”, despite fears that they would be “unable to engage with something so complex”. This led to a minimal drop-out rate and allowed for important trends to be highlighted in their final data.
By modifying the cognitive tools used to assess dementia in the general population, the team hope to more clearly distinguishing the symptoms of Down Syndrome and dementia. This will allow independent study of accompanying comorbidities, facilitating the process of a reliable diagnosis.
Prof. McCarron’s team hopes that making those with intellectual disability aware of their health care needs will make a difference in solving the problems noted in this study. This requires the co-operation of research and social change. A co-operation which has so far lengthened the lifespan of the intellectually disabled and a co-operation which will enable them to make informed decisions about their ongoing care and, with that tailored care, best help them to live their lives.