Dementia in those with Down syndrome now twice as likely

by Christina Finn from thejournal.ie:

THE PREVALENCE OF dementia among people with Down syndrome has almost doubled, according to a new study by Trinity College’s School of Nursing and Midwifery.
Dementia has increased from 15.8% to 29.9%, according to the second wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (TILDA).
This is a much higher level than those seen in the general population.

Intellectual disability 
Not only has the prevalence almost doubled, but the study, which is the first one in the world to include people with a intellectual disability (ID) into a long term ageing study, shows that the average age of the onset of dementia for people with Down syndrome is 55 years old, with some cases presenting in their 40s.
By comparison, the majority with dementia in the general population are over 65 years of age.
Osteoporosis has also doubled since the first wave of the report three years ago. It has doubled from 8.1% to 16.4% for those with an ID. The study showed that nearly 70% who took part in the health assessment study had poor bone health, which the report states indicates a high level of under diagnosing.
There was also a 50% increase in cataracts.
Other findings show that those with an ID are less like to suffer from other conditions.
Rates of hypertension were more than 50% lower in the ID group (17.5%) than those in the general population (37%).

UC San Diego Launches Unprecedented Down Syndrome Study

from UC San Diego:
To many, Down syndrome (DS) is a childhood condition. But improved health care means that individuals with DS now routinely reach age 50 or 60 years of age, sometimes beyond.  However, if they live long enough, people with Down syndrome are almost certain to develop Alzheimer’s disease (AD).
Risk estimates vary, but the National Down Syndrome Society says that nearly 25 percent of individuals with DS over the age of 35 show signs of Alzheimer’s-type dementia, a percentage that dramatically increases with age. Almost all develop dementia by the age of 60.
“The more we learn about Down syndrome and Alzheimer’s disease, the more we realize these conditions – one seen at birth, the other quite late in life – are two sides of the same coin,” said William C. Mobley, MD, PhD, professor and chair of the Department of Neurosciences at UC San Diego School of Medicine. “Autopsies of DS and AD brains reveal virtually identical pathologies – the same telltale amyloid plaques and neurofibrillary tangles.”
Under the auspices of the Alzheimer’s Disease Cooperative Study (ADCS), based at the University of California, San Diego School of Medicine, a new clinical study called the Down Syndrome Biomarker Initiative (DSBI) was launched in March 2013. According to the study’s director, Michael Rafii, MD, PhD – medical director of the ADCS – its aim is to discover indicators of Alzheimer’s and study progression of the disease, with the ultimate goal of better understanding brain aging and AD in adults with Down syndrome.
The three-year pilot study has enrolled 12 participants, aged 30 to 60 years of age. Study participants will be screened for various biomarkers of AD, using tests that include three types of brain scans, retinal amyloid imaging and blood tests, among others.
“Findings to date using MRI and amyloid PET scans indicate that individuals with Down syndrome show the same brain patterns as those in the general population with the earliest stages of the memory-robbing disease, called prodromal AD,” said Rafii.  He added that indications of increased brain amyloid deposition – the insoluble protein aggregates found in the brains of patients with AD that are thought to be an underlying cause of the disease – is similar in individuals with DS and those in the general population with AD.
People with amyloid deposition in the brain experience progressive cognitive deterioration. Brain atrophy – shrinking of the brain’s hippocampus – caused by the amyloid buildup, affects routine functional abilities, ultimately leading to complete physical disability.
“By understanding the progression of the disease in people with Down syndrome and those in the general population, we hope discoveries can be made in each group that can be shared between both populations,” said Rafii. 
The design of the DSBI pilot study is patterned after the Alzheimer’s Disease Neuroimaging Initiative (ADNI), which began in 2004 to establish neuroimaging and biomarker measures of AD.  ADNI tracked the changes taking place in the brains of 800 older people, either free of symptoms or diagnosed with late-stage mild cognitive disorder and early Alzheimer’s disease. 
“Our aim is for the Down Syndrome Biomarker Initiative to mirror ADNI’s successes,” Rafii said.  “ADNI has helped the international Alzheimer’s research community learn significant lessons about the pathology and biomarkers of AD, which in turn has driven new ways of looking at the disease and new studies that we hope will lead to viable treatments. We are confident we can do the same thing for Down syndrome.” 
The 12-subject pilot study at UC San Diego is funded by Janssen Research & Development, LLC.  The research is projected to expand into a five-year, 1,000-subject international study.

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Media Contact: Debra Kain, 619-543-6163, ddkain@ucsd.edu; Jeffree Itrich, ADCS, 858-246-1317, jitrich@ucsd.edu

Efficacy of selected treadmill training programme on oxidative stress in adolescents with Down syndrome

from the Eastern Mediterranean Health Journal and the World Health Organiziation:

ABSTRACT The aim of this study was to assess the efficacy of an electronic treadmill exercise training programme on malondialdehyde (MDA) as a marker for lipid peroxidation and the antioxidant enzyme glutathione peroxidase (GPx) in adolescents with Down syndrome. The study was carried out on 30 adolescent males with Down syndrome, ranging in age from 15 to 18 years, with 30 healthy subjects as a control group. Clinical examination, anthropometric measurements and determination of GPx activity and MDA before and after exercise were done. A treadmill training programme was performed for 12 weeks. Our data showed a significant increase in GPx activity and decrease in serum level of MDA in Down syndrome individuals after treadmill exercise for 3 months. Exercise promotion for adolescents with Down syndrome requires attention to motivators and facilitators of exercise adherence as it may limit risk of increased neurological consequences associated with oxidative stress and improve quality of life.

Adults with disabilities get inadequate health care, Canadian study finds

By Andrea Gordon from the Star:
Adults with autism, Down syndrome and other developmental disabilities face more physical and mental health problems but are less likely to get the care they need than other adults, a new Ontario study has found.

The research, released Tuesday, is the largest examination of its kind and paints a worrisome picture of how this “silent minority” — often unable to communicate their distress — is served by the health care system.

“It’s hard for them to make their needs known,” said Yona Lonsky, lead author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.

And, what’s more, the care these adults receive often does not meet health-care guidelines for this cohort, she added.

While a higher proportion of these adults live in poorer neighbourhoods and are diagnosed with chronic diseases, they face larger gaps in services.

They more often end up in emergency departments in crisis. But they are less likely to visit their family physicians for regular checkups or standard preventive care such as cancer screening.

Almost half are prescribed multiple drugs, most commonly for mental health and behavioural problems, the study found. Twenty-two per cent take five medications simultaneously, and some in potentially dangerous combinations.

And while a team approach is recommended to co-ordinate care between physicians, nurses, occupational therapists, psychologists, social workers and other care providers, only one in five adults with a developmental disability is being treated by this type of health team.

The study was conducted by the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH). A summary was released Tuesday and the full report will be available in December.

The findings didn’t come as a surprise to Roger Oxenham of Toronto, whose daughter Rachel, 26, has a developmental disability and bipolar disorder.

Rachel went through a crisis as she entered her 20s, a period when many young adults like her are most at risk of falling through the cracks as they “age out” of pediatric care and children’s services.

In one year, she ended up in emergency rooms around the city 18 times, arriving in distress and fearing she would harm herself. It wasn’t uncommon for Rachel to wait 12 to 14 hours, alone and upset, before being admitted to the psychiatric ward, where she would be medicated and released, only to start the cycle again.

While her own physician and emergency staff provided good care, says Oxenham, there was no communication between caregivers. The strategy seemed to be “patch her up and send her out until the next time.”

He says the system needs to connect hospitals, parents, family doctors and other therapists who work with patients and understand their complex needs.

That approach is critical, adds Lonsky, a scientist clinician with CAMH and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) program. She says initiatives are also needed to empower patients, parents and caregivers advocate for themselves.

The Atlas study is the first to track health needs and treatment for this often overlooked group — estimated at 66,000 adults under 65 in Ontario. Too often they become invisible after moving from the care of pediatricians and parents into adulthood, particularly the majority who live with mild disabilities. As a result their health problems and needs are overlooked.

Researchers had to mine data from social services to get an accurate picture of the numbers of adults with developmental disabilities and their health care needs.

Memory training study points to possible benefits for children with Down syndrome

A study, conducted by researchers at Down Syndrome Education International and published today in the American Journal on Intellectual and Developmental Disabilities, suggests that adaptive working memory training might offer sustained benefits for young people with Down syndrome.

People with Down syndrome tend to be more limited in their abilities to store and manipulate information over short periods of time (short term and working memory) than other people.

These memory systems impact many areas of learning, including the acquisition of vocabulary, grammar and reading skills. Improving short term and working memory function might therefore be expected to have important consequences for educational outcomes.

Studies published in recent years suggest that computerised adaptive working memory training may improve memory function for children with relatively limited working memory skills.

DSE therefore set out to explore if similar results might be achieved for children with Down syndrome by conducting a randomized controlled trial of Cogmed Working Memory Training with children with Down syndrome aged between 7 and 12 years.

The study was funded by The Baily Thomas Charitable Fund and Down Syndrome Education International, and the findings are published today in the American Journal on Intellectual and Developmental Disabilities.

We found that children who undertook 25 session of computerized memory training, on average, achieved important gains in visuospatial short term memory and visuospatial working memory, compared to children not undertaking training.

This study suggests that adaptive working memory training could be a practical and useful intervention for children with Down syndrome. However, further research is required to confirm this. Future research is needed to explore if memory training can deliver improvements in verbal as well as visuospatial memory, and (importantly) if these gains subsequently lead to improvements in language, literacy and wider academic skills.

• Read more about the trial...

Use this link for a free trial of the memory training software mentioned above from DSE and Pearson Education (click here)

Exercise has Cognitive Benefits for People with Down Syndrome

by Carola Finch from Examiner:
Researchers at the University of Arizona (ASU) are conducting research to determine whether assisted and intense exercise can improve the emotional, cognitive and motor functioning of adolescents with Down Syndrome (DS). The aunt of Marcus Santellan, a young man with DS, says that since he has participated in the exercise program, he is speaking in longer sentences and is more talkative in his home.
Marcus is one of eight participants who are working out on a bike three times a week at ASU’s campuses in Tempe and Downtown Phoenix. Eight participants have already been studied by researchers.
Katy Lichtsinn, an ASU kinesiology senior, cheers on and mentor Marcus. When she warned Marcus’s aunt that he may be tired after pedaling 110 rpm on the bike, Marcus responded: “I’m not tired but I can’t feel my legs.”
Down Syndrome is a chromosomal condition that affects approximately 400,000 children born in the U.S. DS children have physical characteristics and cognitive difficulties that limit their lifeskills. Only a few behavioral interventions have improved their ability to function.
Shannon D.R. Ringenbach, an associate professor of kinesiology in the School of Nutrition and Health Promotion, intends to show that Assisted Cycle Therapy can potentially help improve the lives of people with DS.
Two years ago, Ringenbach conducted a smaller pilot study that adolescents with DS improved their manual dexterity and increased the speed at which they processed information. Researchers did not achieve the same results after one voluntary exercise session because people with DS have less strength and tend to be sedentary.
A specialized stationary bicycle with a motor was used so that participants could exercise at a faster rate. Approximately 15 ASU undergraduates and one doctoral student closely monitored the participants and encouraged them. Participants were tested intermittently for depression, and on their manual dexterity, ability to function, and cognitive skills.
“It’s really remarkable that by doing this kind of exercise, they begin to think faster,” says Ringenbach. “We believe they develop new brain cells. We don’t know yet how long it will last. But it has the potential to dramatically change the quality of their lives. With early intervention in children with Down syndrome, it’s possible it could improve their IQ.”
The families of the participants say that the adolescents are enjoying the program, talking and interacting more with others, and have improved their mood. Ringbach hopes to extend her research by creating a motorized bike for smaller children

Participate in a study on delivery of Down syndrome diagnosis

To Whom it May Concern,

My name is Jane Goodwin and I am a student researcher at the University of Newcastle, Australia. Currently, I am working with Dr Linda Campbell (chief investigator) on an investigation into parents' and caregivers' experiences regarding the diagnosis of Down syndrome. Specifically, we are interested in the diagnosis experience, how the children were told, and coping methods used. We are also looking at caregivers' and parents' concerns around telling their children about the syndrome. This project has ethics approval from the University of Newcastle's Human Research Ethics Committee. Approval No. H-2012-0129.

To investigate this, a 20 – 30 minute questionnaire has been created which can be found at www.wix.com/c3094005/geneticdisorders. We hope that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.

Link to our study website (www.wix.com/c3094005/geneticdisorders). We are seeking people 18 and over who are either a parent or a caregiver of an individual with Down syndrome.

If you have any questions or concerns, please contact myself (c3094005@uon.edu.au) or Dr Linda Campbell (Linda.E.Campbell@newcastle.edu.au).


Thank you for considering this request,

Jane Goodwin and Linda Campbell

Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

from DSE:


A landmark research study has shown that a targeted teaching intervention accelerates progress in reading and language development for children with Down syndrome. The primary results of the study are now available online, ahead of publication in the Journal of Child Psychology and Psychiatry. The study was the first large controlled trial of an intervention designed for children with Down syndrome and was led by researchers at Down Syndrome Education International working with colleagues at the Centre for Reading and Language at the University of York. DSE will be publishing a handbook and other resources, and providing training and support services, to help teachers successfully implement the new reading and language intervention.

Dr Kelly Burgoyne, a Research Psychologist at Down Syndrome Education International who led the study commented, “We are very pleased with the results that clearly indicate the benefits offered by the intervention. We are also pleased with the feedback that we have received from teaching assistants and families about how helpful and enjoyable the intervention has been. We are already starting to pursue new avenues of research based on these results and considering how we will be able to continue to improve the program in the future.”


The first scientific paper from a landmark randomized controlled trial of a reading and language intervention for children with Down syndrome is now available online ahead of publication in the Journal of Child Psychology and Psychiatry. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.


for the full article:
Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome