Symptoms of dementia among adults with Down's syndrome: a qualitative study.
Add frontal-lobe red flags—slowing, lost words, withdrawal, balance and sleep issues—to every Down-syndrome dementia checklist.
01Research in Context
What this study did
Researchers talked to carers of adults with Down syndrome.
They asked what changes the carers saw before dementia was diagnosed.
The study used long interviews, not tests or numbers.
What they found
Carers noticed two groups of warning signs.
The first group was the usual memory slips and confusion.
The second group showed up earlier: slow movements, lost words, pulling away from friends, poor balance, and broken sleep.
How this fits with other research
Whitehouse et al. (2014) later tracked the same population for 14 years.
They showed dementia often starts around age 55 and confirmed the Dementia Questionnaire for Mentally Retarded Persons (DMR) picks up decline first.
Their numbers back up the early frontal-lobe signs carers named in Fyfe et al. (2007).
Hagopian et al. (1999) found women with Down syndrome who enter menopause sooner also get dementia sooner.
That hormone link does not clash with the symptom list; it simply adds another risk flag to watch.
Why it matters
Add the early items—slowing, language loss, social withdrawal, balance and sleep problems—to your dementia screener right away.
Spotting these signs sooner means quicker referrals, better planning, and earlier support for both the adult and the care team.
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02At a glance
03Original abstract
BACKGROUND: Dementia is common among adults with Down's syndrome (DS); yet the diagnosis of dementia, particularly in its early stage, can be difficult in this population. One possible reason for this may be the different clinical manifestation of dementia among people with intellectual disabilities. AIMS: The aim of this study was to map out the carers' perspective of symptoms of dementia among adults with DS in order to inform the development of an informant-rated screening questionnaire. METHOD: Unconstrained information from carers of people with DS and dementia regarding the symptoms, particularly the early symptoms of dementia, was gathered using a qualitative methodology. Carers of 24 adults with DS and dementia were interviewed. The interviews were recorded and fully transcribed. The transcripts were then analysed using qualitative software. RESULTS: There appeared to be many similarities in the clinical presentation of dementia in adults with DS and the non-intellectually disabled general population. Like in the non-intellectually disabled general population, forgetfulness especially, impairment of recent memory combined with a relatively intact distant memory and confusion were common, and presented early in dementia among adults with DS. However, many 'frontal lobe'-related symptoms that are usually manifested later in the process of dementia among the general population were common at an early stage of dementia among adults with DS. A general slowness including slowness in activities and speech, other language problems, loss of interest in activities, social withdrawal, balance problems, sleep problems, loss of pre-existing skills along with the emergence of emotional and behaviour problems were common among adults with DS in our study. CONCLUSIONS: This study highlights the similarities in the clinical presentation of dementia among the general population and people with DS with a particular emphasis on the earlier appearance of symptoms associated with the frontal lobe dysfunction among adults with DS.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2007.00956.x