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A LONG-TERM study on adults with Down Syndrome in Ireland has found that people with this condition are at a much higher risk of developing dementia than the general population.
The study followed 77 women with Down Syndrome over the age of 35 for 20 years. In that time 97.4% of the women assessed had developed dementia. The prevalence rates of dementia in the general population over the age of 65 ranges between 5% and 7%.
The average age that the women were diagnosed with dementia was 55 years, which is almost four years later than the international average.
The report’s authors have urged the government to introduce measures to ensure that services and care for older people with Down Syndrome are reflective of the points highlighted in their research.
Much higher risk
The researchers calculated the risk of people with Down Syndrome developing dementia at different ages.
At age 50, there was a 23.4% risk. This rises to 45% by age 55, and then to 88% by the age of 65.
The researchers also said that the average length of survival for dementia sufferers with Down Syndrome was seven years, rather than three to five as previously thought.
“This new data has major implications from a care and resource perspective,” they said.
Furthermore, almost 80% of people with Down Syndrome and dementia will develop new onset epilepsy.
Policy changes
The fact that dementia diagnoses are made later in Ireland than the international average means that many are only diagnosed at a very advanced stage, according to lead study author Professor Mary McCarron.
Professor McCarron reiterated a number of measures that are needed to offer care and support for people with Down Syndrome and their families as they get older, having addressed TDs and Senators on the matter recently.
She urged introducing dementia assessments for people with Down Syndrome at a stage far earlier than is usual for the general population.
McCarron also called for the establishment of specialist memory clinics, with trained and experienced staff, to offer advice and support to patients and their families.
A greater number of experts trained to specifically work with this population, and enhanced education programmes for healthcare professionals in diagnosing early onset dementia would also be welcome.
McCarron said: “We now have the statistics for Ireland, and clearly radical changes need to be made in order to respond and address the needs of this often vulnerable group of people to help diagnose, support, treat and help prevent dementia.
We need to support people with Down syndrome and dementia to live in the home of their choice with their family or friends for as long as possible. Supports should include appropriate dementia specific respite services for family and/or peers in group homes.
This study from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing was published in the Journal of Intellectual Disability Research.
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Well this isn’t exactly new information. The link between Down Syndrome and dementia has been known for several years. There are international studies and treatments trialled. Ireland though has basically ignored all these studies and there is no strategy for aging adults with Down Syndrome. Adult provision is patchy to poor generally .
It is understandable that couples who have a foetus diagnosed with or likely to have Down’s Syndrome may wish to choose for an abortion in circumstances in which the future may be so bleak, especially if the Down’s Syndrome child outlives the parents.
On another aspect, it may be that Alzheimer’s disease might have some link with conditions which result in cognitive impairment and a lack of cognitive surplus. It may indicate potentially promising lines of potential clinical research.
@Tony Daly: child or adult with Down Syndrome. . The person always comes first .. but this is hardly news there has always been a link between the two .
@Tony Daly: not a bit understandable imo. Aborting on the basis of a possible bleak future, hmm let’s see, that’s adicts, mental unwell people, physically unwell people, people in poverty, people living in warn torn countries, people living through famines… I’d say those lives woukd be fairy bleak. The list goes on. Would that bleakness have a timescale or a limit? I mean does it depend how long it lasts or when it starts? I’d admit to having felt life was bleak at times! Does that count? Holy shit i made it in by the skin o’ my teeth! As for outliving the parents! What’s that all about? Based on your perspective of life i’d consider yours to be fairly bleak!!!
@Tony Daly: Not every adult goes on to develop dementia. There are adults in their 70s and 80s who still haven’t developed it. Secondly these elderly adults in question are of a different generation and will not have had th benefits of modern neduc advances. Nutritional advances and mental stimulation in schools and early intervention.
Secondly the mouse model which was developed for researching cognitive impairment in Down Syndrome had led to ground breaking reasearch pathways into dementia which will hav benefits for the general public. This has been ongoing for several years.
Also some dementia drugs have been given to young teenagers and children with downs in order to provide cognitive protection. Drugs like acreipt or older ones like Piracetam. There are other protocols involving Prozac. My son has been on a protocol with specific supplements that have the bio availability vastly improved. I have stopped short of drugs.
The benefits of all the interventions available have meant huge jumps in the ability health and life span of children with Down Syndrome. There is no need to abort as the future is not in the least bleak. It is actually very promising with adults leading full lives. Things like doing calculus and going on to third level are common place. Full time employment is common place and full and loving relationships are commonplace. My sons autism not his downs are his biggest issues.
Younger people with Down syndrome are better educated, more physically active and, in a lot if cases working etc. It will be interesting to see if this age group will develop dementia to the same extent as the older group. Anyone who has led a sedentary life, both mentally and physically, could be at a higher risk of developing dementia.
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