The role of prospective screening in the diagnosis of dementia in people with Down's syndrome

Abstract

Purpose -People with Down's syndrome are at increased risk of developing early onset Alzheimer's disease. It has been recommended that all adults with Down's syndrome receive baseline neuropsychological testing for dementia. In certain areas prospective screening of people with Down's syndrome takes place to ensure the early diagnosis of the condition. However, little has been published on the value of this type of screening. The purpose of this paper is to report on a prospective screening programme and asks whether the programme is effective in identifying dementia-related changes in people with Down's syndrome and whether the current screening intervals are appropriate. Design/methodology/approach -All adults with Down's syndrome in Plymouth (UK) are identified and offered a comprehensive test battery at baseline at the age of 20 and then have testing biennially from 40 to 50 and annually after 50. All individuals diagnosed with dementia between 2001 and 2013 were identified and their case notes examined. The symptoms at the time of diagnosis were identified and whether these symptoms had been identified through the screening programme or by other routes were recorded. Prevalence data and age at diagnosis were also recorded. Findings -In total, 26 people were diagnosed with dementia during the study period. Of these, the diagnosis of dementia followed concerns being identified during the routine screening programme in 54 per cent of cases. In the younger age group (age 40-49) 63 per cent of people were identified through the screening programme. At the time of diagnosis a mean of 5.5 areas of concern were in evidence. Research limitations/implications -Limited by small sample size, however service development not original research. Implications for the use of prospective dementia screening in people with Down's syndrome. Practical implications -Implications for how services choose to run their Down's syndrome and dementia screening programmes, including the frequency of screening. Originality/value -The paper adds to a growing evidence base around the value of prospective dementia screening in people with Down's syndrome. It is also one of a few studies exploring the frequency of screening. Additionally, it adds further data about prevalence of dementia in people with Down's syndrome.

Improving services for people with learning disabilities and dementia: Findings from a service evaluation exploring the perspectives of health and social care professionals

“…These tend to focus on the practicalities of establishing services and screening strategies (e.g., screening frequency, whether assessments are completed directly with people with learning disabilities or informants). They also discuss issues arising as screening and support are introduced; for example, the importance of a multidisciplinary approach, services working together, caregiver training and awareness‐raising and person‐centred, flexible assessments, the role of screening in identifying additional health and social care needs and increasing screening uptake (Cairns, Lamb, & Smith, ; Hobson et al., ; Jervis & Prinsloo, ; Kalsy et al., ; Starkey, Bevins, & Bonell, ).…”

A comparison of dementia assessment services for people with intellectual disabilities

“…The population estimate approach can be complemented by reviewing the notes of all individuals diagnosed with dementia to determine the proportion where concerns were first raised during routine screening. This would allow services to identify whether dementia was being picked up during routine screening or from other sources (Starkey et al, 2014 for an example). Other evaluation methods include asking professionals involved in the assessment process (Chapman et al, 2017) and service users about their experiences.…”

“…Only one study has evaluated the value of frequent reassessment (Starkey et al, 2014). The authors found that many of the people in the 40-49 age group with a diagnosis of dementia had concerns raised during routine screenings, which were conducted once every two years.…”

“…Services' approach to assessment can be framed as a trade-off between frequency and depth of assessment. For example, some services have opted for thorough assessment at both baseline and reassessment (Jervis and Prinsloo, 2008), others have opted for less thorough baseline assessment, followed by more thorough assessment if the baseline indicates possible dementia (Hobson et al, 2012) and others have chosen a balance between depth and frequency (Cairns et al, 2011;Starkey et al, 2014). A limited number of studies from Scotland have begun to compare service provision (McKenzie et al, 2019(McKenzie et al, , 2020.…”