A Proactive Psychological Strategy for Determining the Presence of Dementia in Adults with Down Syndrome: Preliminary Description of Service Use and Evaluation

Abstract

The authors describe and assess the experience of providing proactive screening for dementia in older adults with intellectual disabilities (ID) through a dedicated clinical psychology service within the National Health Service in England. Subjects were the first 18 participants who were referred to the clinical service or were identified as showing early signs of probable dementia in a proactive screening strategy. The screening process involved combining neuropsychological, behavioral, and health data with information from a clinical assessment of the presenting problem in a case series approach. The process of psychological assessment and formulation is illustrated together with an outline of the psychological interventions employed for early-, mid-, and late-stage dementia. An appraisal of the service strategy showed that a dedicated psychology service for dementia assessment can be effective when offering a defined and workable psychological response to the increasing presentation of dementia-associated behaviors among people with ID. Ancillary services included supporting carers in contributing to the assessment and intervention process so as to ensure appropriately responsive and respectful care management for the person with ID and dementia. The authors recommend that a multimodal stage model of intervention founded on direct performance and informant-based assessments (within a framework of differential diagnosis) be employed in supporting people with ID and dementia.

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

“…This evaluation raises issues about the availability of appropriate accommodation and support for people with learning disabilities and dementia and concerns about the use of nonspecialist provision, both nonlearning disability and nondementia specialist provision. Coherent strategies and adequate resources are important to ensure that people are not moved inappropriately to nursing homes for older people (Wilkinson, Kerr, Colm Cunningham, & Rae, ), and although not widely available, there is some evidence that specialist services developed for people with learning disabilities with dementia appear to work well (Kalsy et al., ).…”

“…Good practice guidelines emphasise the need for early screening and detection and recommend that all services for people with Down's syndrome have robust baseline assessments of individuals' cognitive, adaptive and social functioning before 30 years of age (British Psychological Society, ; Turk, Dodd, & Christmas, ). Proactive screening strategies incorporating assessments of physical, medical, psychological, cognitive and behavioural function are needed to discount conditions other than dementia, for early identification of need and appropriate intervention (Kalsy et al., ). The British Psychological Society () recommends that diagnosis involves a multidisciplinary process and every learning disability service have a register of all adults with Down's syndrome.…”

Impact of Dementia Upon Residential Care for Individuals With Down Syndrome

“…Questionnaires were sent out to 28 paraprofessional paid carers working within residential group homes providing 24‐h daily care for adults with moderate intellectual disabilities. The study presented here formed part of a wider investigation of dementia in older adults with Down syndrome (Kalsy et al., 2005). All targeted carers were key workers/main carers of an individual with Down syndrome or Down syndrome and acquired cognitive decline suggestive of dementia, and carers were asked to respond only for this specified client.…”

Adaptation of Flemish Services to Accommodate and Support the Aging of People With Intellectual Disabilities

“…A final important finding is that only 45% of the facilities systematically screen for dementia. Many authors promote the need to provide proactive baseline screening strategies that involve physical, medical, and psychological appraisal and note that these should be combined with periodic assessments of cognitive and behavioral functions (Kalsy et al., 2005; Shultz et al., 2004). Early baseline assessments are useful to judge consequential changes and thus enable the early identification of physical and mental health needs and the timely planning of clinical interventions.…”