Families, service providers and people with Down syndrome themselves have achieved a great deal, with average lifespans for the estimated 7,000 people with Down syndrome in Ireland rising from nine years in the 1930s to at least 60 years today. This is something we should all certainly celebrate.
However, growing older presents unique and increased health concerns for people with Down syndrome and a picture has emerged in which people with Down syndrome are increasingly suffering from Alzheimer’s and/or dementia at much earlier ages than the general population.
Most concerning is that they and their relatives are often unable to access appropriate care if and when they manage to get a proper diagnosis.
Recent data from IDS-TILDA, the Intellectual Disability Supplement to TILDA (The Irish Longitudinal Study on Ageing) found that in the three-year period since the first wave of data collection was conducted in 2010, the prevalence of dementia among people with Down syndrome over the age of 40 had almost doubled from 15.8 per cent to 29.9 per cent.
Other studies have reported that the average age of onset of dementia for people with Down syndrome was 51 years, with some cases presenting in their early 40s; much younger than the ages of onset being reported for the general population.
Indeed, the prevalence of dementia in people with Down syndrome in their late 40s is similar to what is seen in the general population in their 80s.
To add to the challenges with this emerging picture is the reality that older adults with Down syndrome are rarely married or have children or grandchildren to assist with caregiving. If they are still cared for by parents, as is often the case, those parents are likely to be elderly and dealing with their own health problems.
Changing needs
We all have to be concerned that Ireland and many other countries are ill-prepared to address the changing needs of people with Down syndrome who develop dementia. It is 20 years since international guidelines were issued about care and assessment of dementia in persons with Down syndrome, yet many struggle to get a diagnosis in Ireland.
When there is a diagnosis, their traditional intellectual disability service providers often feel they lack expertise in providing care for dementia. When they or their relatives seek assistance from general population clinics, hospitals and palliative care providers, including programmes designed to meet the needs of people with dementia, there is often little help available to them. Services other than a bed are still too rarely provided.
It is true that diagnostic and some care approaches will need to be different from those offered to the general population, but the unwillingness to change and to work together, beliefs that dementia care is not what intellectual disabilities services are designed for, and that training of staff and delivery of services in general hospitals and hospices are not designed to serve this population mean that people with Down syndrome and dementia fall between care systems with often no-one accepting responsibility.
The fact that people with Down syndrome are at increased risk of dementia should no longer be a surprise, and it is no longer good enough for health professionals and care systems to continue to act surprised; the evidence is clear.
In the past we did what we did with what we knew; now that we know better we need to try to do better.
I welcome that the National Dementia Strategy has specifically identified people with Down syndrome as a priority population for improvements in services.
But, if the strategy is to be meaningful, changes both in ID services and in general health service responses to people with Down syndrome and dementia need to happen now.
Receive treatment
This must not be about a return to institutions; people with Down syndrome live in the community, access their local GP and public health nurse, and receive treatment at hospitals just like everyone else.
Unfortunately, not all physicians, nurses and hospitals understand that people with Down syndrome are their patients too.
This means they must take the responsibility to gain the education and training to offer people with Down syndrome the highest level of care.
There is help available including intellectual disability services with experience willing to help and collaborate, evidence-based strategies developed in Ireland and elsewhere, and university-based education and training.
It is impressive today to see young people with Down syndrome attending mainstream classes in local schools, and as adults holding jobs, attending university, living in their own flats and houses, supporting their families as well as being supported by them, and participating in sports.
More recently, examples of people with Down syndrome who are actors, models and leading advocates for all persons with intellectual challenges remind us all that the more restricted lives people with Down syndrome led in the past were more about everyone else’s failure to see their potential and unwillingness to provide supportive resources than about their lack of potential for such lives.
Now that that this group are living longer and fuller lives, they must not age in poor health, and these achievements and this progress must not be lost.
We all need to commit to working together to ensure that we have the knowledge and skills to support persons across the continuum of dementia including at end of life.
If not me, if not you, then who will accept this critical challenge?
Prof Mary McCarron is dean of the faculty of health sciences at Trinity College Dublin and principal investigator of the Intellectual Disability Supplement to TILDA, the Irish Longitudinal Study on Ageing.