Health Survey Findings

Key points from our recent survey on health awareness for teens and adults. 

A sincere thank you to everyone who completed the recent survey. We had 325 responses in total: 258 responses to the parent/carer survey, and 67 responses from people with Down syndrome. This represents a 27% response rate, which gives us good information to work with going forward.   

We received responses from all counties except Longford and Monaghan, and across a wide age range of people. The majority of responses (89%) were from or about people with Down syndrome aged 13-45 (age range: 2-62). Although this was only emailed to people in the target age range (teens and adults), reminders on social media led to responses from parents of a few younger members (3%). 

Some of the key results are summarised below. 

Health awareness and routine checks: 

Blood tests 

People are aware of the need for regular blood tests, with over 80% of people getting checked at least every second year. Several people highlighted the need for accommodations to support people who are afraid of needles/doctors/healthcare environments, given the importance of regular checks.  

Hearing 

The information on hearing checks was concerning. More than half (53%) of respondents do not get routine hearing checks. This rises to 69% in people aged 30 or older.  This needs to be addressed, particularly given the research highlighting links between hearing loss and dementia. Some people cited barriers in accessing hearing tests which we will raise with the HSE, however, this seems not to be part of routine healthcare for the majority of people.  

Vision 

The information on vision was more positive, with 74% of people having an eye check at least every second year, although this still leaves one person in 4 who do not get their eyes regularly checked.  

GP 

Given the increased incidence of many health conditions in people with Down syndrome, we had hoped to see people going to their GP to discuss general health and wellbeing annually, maybe at the time of their annual blood test. However only 31% do this annually or more frequently. 67% of respondents reported attending the GP only when sick (or never).  

Vaccinations 

Most people have been offered flu and Covid vaccinations (84% and 81% respectively), however only 25% of people have been offered the pneumonia vaccine. The pneumococcal vaccine helps protect against pneumonia and is recommended for people at higher risk. Everyone with Down syndrome is eligible for a free vaccination, which is usually two doses a few years apart for younger people, or a single dose for people over 65. Ask your GP or practice nurse for details. 

Hospital based consultant visits

40% of people see an audiologist, 34% a cardiologist, 30% an ophthalmologist, 30% an ENT specialist, 17% a psychiatrist, 14% an endocrinologist, 13% a specialist in respiratory medicine and sleep, 10% a dermatologist, 9% a rheumatologist, 7% a gastroenterologist, and 5% a neurologist. In many cases these are the same individuals, with many seeing 2-5 different specialists. 

Regression/loss of skills 

17% of people reported that their person with Down syndrome had experienced a sudden loss of skills which they could previously manage, with some mentioning medical or environmental factors which appeared to cause or trigger this regression.  Some comments were encouraging, describing skills returning as medical issues resolved or medication was prescribed. Others were unresolved, and looking for further investigation, diagnosis, support and treatment pathways. 

Staying healthy: 

When asked their thoughts about supporting people with Down syndrome to stay healthy, healthy eating, weight management (37%) and exercise (32%) were most commonly mentioned. Concerns were raised about accessibility of healthcare, and that the responsibility for routine checks falls on parents and carers, who are themselves getting older. Many families are looking for Down syndrome specific clinics and/or an annual health check-up to ensure that all routine checks are carried out.  

Healthy food, exercise and the desire to stay fit and healthy were also the main themes in the surveys completed by people with Down syndrome. 

Getting older: 

When asked their thoughts about getting older, people with Down syndrome were mostly positive (56%). Other responses indicated worry or concern (17%), not really thinking about the future (12%), or don’t know (14%). 

This positivity is a stark contrast to the responses from parents/carers where 70% of responses to this question indicated fear of the future, and only 11% were positive. The biggest single concern, expressed by 40% of respondents, was about what might happen when they are no longer around, or no longer able to provide care, support and advocacy. The need for someone to take notice, especially if the person is non-verbal, and the worry about isolation were mentioned. The impact of medical conditions, and particularly the risk of Alzheimer’s was a major concern (19%). 

What next? 

Thanks again to everyone who completed the survey. We will use this information to plan an adult focused conference this autumn, 7th November 2026.