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Changes in behaviour indication of dementia in people with Down syndrome

24 November 2017

​​Behavioural changes in people with Down syndrome could be an early sign of dementia. These behavioural changes include symptoms of anxiety, apathy and depression. It is important to identify the warning signs of dementia in this group so that their care can be modified, and targeted treatment started to maintain their quality of life. These are the findings of research carried out by Alain Dekker of the UMCG. He was awarded a PhD with the predicate cum laude by the University of Groningen on 15 November.

Dementia is one of the main challenges facing contemporary care for people with intellectual disabilities. People with Down syndrome have an extremely high genetic risk of developing Alzheimer's disease: 50-80% of them will develop dementia. This heightened risk is because they produce excessive amounts of amyloid protein; amyloid accumulation is toxic and ultimately kill off nerve cells. Predicting the progress of dementia in this target group is particularly difficult. For his research, Alain Dekker and neurologist Peter De Deyn analysed changes in the behaviour of 281 people with Down syndrome. Research among the general population revealed that certain behavioural changes can be identified before dementia is diagnosed. This is the first large-scale study of such changes in behaviour among people with Down syndrome.

For his research, Dekker worked with several care organizations in the Netherlands and expertise centres in Belgium, England, France, Italy and Spain. He studied a total of 281 people with Down syndrome, with and without dementia, to check whether they were displaying Behavioural and Psychological Symptoms of Dementia (BPSD). They studied 12 behavioural sections: (1) anxiety & nervousness, (2) sleeping problems, (3) irritability, (4) stubbornness, (5) agitation & stereotypical behaviour, (6) aggression, (7) apathy & loss of spontaneity, (8) signs of depression, (9) delusions, (10) hallucinations, (11) unrestrained & sexual behaviour and (12) eating and drinking habits. He compared typical behaviour in the past with behaviour during the past six months, and calculated the change in frequency and gravity.

Dekker's research shows clear differences in changes in frequency and/or gravity for the themes of anxiety, sleeping problems, agitation, aggression, apathy, depression and eating & drinking habits. The number of people showing a rise was highest in the group of people with Down syndrome and dementia, and lowest in the group without dementia. A clear increase in anxiety, apathy and signs of depression was seen in a substantial proportion of the group with questionable dementia (a subgroup that is highly likely to develop dementia). According to Dekker, this seems to indicate that these are early warning signs of dementia.

He considers it vital to recognize signs of dementia in people with Down syndrome as early as possible. Dekker: 'It would then be easier to adjust their individual care and offer targeted treatment. This would improve or maintain their quality of life and reduce caregiver burden.' Dekker is arguing the case for more research monitoring people with Down syndrome over longer periods.​​