Polyhandicap and aging

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

“…Lastly, Rousseau et al ( 2019 ) evaluated ageing in 474 people with a profound intellectual disability and severe motor deficiency. Compared to younger individuals (18–34 years), older adults (50–68 years) presented more frequently behavioural problems like withdrawal, intermittent screaming, intermittent crying, agitation and self‐aggressivity.…”

“…The first limitation concerned the small number of people with severe/profound intellectual disabilities for who observable dementia symptoms were reported (ranging from n = 1 to 6 in each dementia study). Secondly, the aetiology of the intellectual disability was not specified in two dementia studies for a total of three persons (Day, 1985 ; Reid & Aungle, 1974 ) as well as for the 477 persons without Down syndrome in the ageing study of Haveman et al ( 1994 ) and 474 persons in the ageing study of Rousseau et al ( 2019 ). Thirdly, the exact (sub)type of dementia was not reported in five dementia studies (Burt et al, 1998 ; Day, 1985 ; Duggan et al, 1996 ; Margallo‐Lana et al, 2007 ; Reid & Aungle, 1974 ).…”

“…In fact, the eight dementia studies as well as the three ageing studies all reported on BPSD. Four studies found symptoms of apathetic behaviour including withdrawal and loss of interest in surroundings (Evenhuis, 1990 ; Määttä et al, 2006 ; Margallo‐Lana et al, 2007 ; Rousseau et al, 2019 ). These results are consistent with recent findings in a large study on dementia in people with Down syndrome, in which apathy was found one of the most commonly observed BPSD symptoms (Dekker et al, 2021 , 2018 ).…”

“… Note : ↓, decrease; ↑, increase; =, remained stable. References: 1, (Reid & Aungle, 1974 ); 2, (Day, 1985 ); 3, (Evenhuis, 1990 ); 4, (Duggan et al, 1996 ); 5, (Burt et al, 1998 ); 6, (Määttä et al, 2006 ); 7, (Margallo‐Lana et al, 2007 ); 8, (Sauna‐Aho et al, 2018 ); 9, (Haveman et al, 1994 ); 10, (Cherry et al, 1997 ); 11, (Rousseau et al, 2019 ). Abbreviations: DS, Down syndrome; non‐DS, without Down syndrome; PID, profound intellectual disabilities.…”

Upper Gastrointestinal Disorders in Adult Patients with Intellectual and Developmental Disabilities

“…A more recent 18-month crosssectional study conducted in 2019 among 474 patients with severe and complex disability found that the most common medical device used in aging patients with these illnesses was gastrostomy tubes. This study identified that 35.6% of patients aged 18-34, 21.2% of patients aged 35-49, and 21.2% of patients age 50-68 utilized gastrostomy devices, primarily prescribed as a means of reducing risk of aspiration pneumonia and alleviate symptoms of GERD [39]. Another study showed that serum levels of folate and vitamin B6 are significantly higher in patients with severe motor or IDD using enteral feeding when compared to oral feeds.…”