Authors: Anne‐Sophie Rebillat, Anne Hiance‐Delahaye
Published: 2020-12-07
DOI: 10.1002/alz.045938
Source: Full article
AbstractBackgroundCaring for people with dementia is highly challenging, and family carers are recognised as being at increased risk of physical and mental ill health. (Pinquart & Sorensen, 2007). People with Down syndrome (DS) face an extremely high risk to develop dementia due to Alzheimer’s disease (AD) (Ballard C et al., 2016). Risk for AD increased from 23% in those aged 50 years to 80% in those aged 65 years and above (McCarron et al, 2017). The management of these patients is particularly complex given the pre‐existing intellectual disability, behaviour and co‐morbidities (Esbensen AJ et al, 2018). Behavioural and psychological symptoms were found to be a major cause for referral (Adams et al, 2008) and caregivers reported difficulty to understand behavioural changes (Iacono T et al., 2014). Caregivers were showed to have misconceptions about AD development in DS and underutilize available resources (Ilacqua et al, 2019) but there is no data concerning family carers in particular.MethodThe aim of this study is to describe family carers of people with DS and AD followed at Lejeune Institute in Paris. Data were collected retrospectively and included family carers of patients with DS and suffering from AD followed at Lejeune Institute in Paris (France) from November 2016 to December 2019.ResultAbout 600 patients with DS and aged at least 35 years have had geriatric assessments in our clinic. Around a third have developed AD. A large part of them lived in institutions but with the support of family carers who face the challenge of pathological aging.ConclusionIt is crucial to take interest in these family caregivers because of the complexity and the burden of diagnosis of AD in DS, which institutional care does not necessarily reduce.