Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Abstract

People with an intellectual disability have experienced increased life expectancy (Emerson, Glover, Hatton, & Wolstenholme, 2014), resulting in changing healthcare needs, including age-related mental health conditions, such as dementia (Whitehouse, Chamberlain, & Tunna, 2000). Dementia is an umbrella term used to describe a group of symptoms and includes a wide range of diseases and disorders of the brain. Although with differing fundamental causes, they all result in progressively deteriorating intellectual functioning and loss of daily skills (Prasher, 2005). Nevertheless, how the dementia is experienced is informed by a combination of neurological impairment, psychological factors such as health and individual psychology and socio-environmental factors (Kitwood, 1997). In almost all aspects, dementia presents in a similar fashion for people with an intellectual disability as for those without; however, two striking differences are that people with an intellectual disability, particularly people with Down syndrome, are at an increased risk of dementia, which is likely to have an earlier onset (Strydom,

Caregivers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis

“…Changes in personality, behaviour and loss of skills are early indications of possible cognitive decline in people with intellectual disability (Herron et al , 2020). However, behavioural changes or loss of skills can be viewed by carers as a natural decline, associated with a person’s intellectual disability (Herron and Priest, 2013; McLaughlin and Jones, 2011; Ryan, MacHale, and Hickey, 2018).…”

“…There is a dearth of evidence for the delivery of dementia education for caregivers in the intellectual disability field (Dodd, 2014). Some evidence suggests the importance of caregivers identifying the subtle signs of dementia to support early diagnosis (Carling-Jenkins et al , 2012; Herron and Priest, 2013; Herron et al , 2020; McLaughlin and Jones, 2011; Ryan et al , 2018). It is argued specialist services offer limited pre- and post-diagnostic support to caregivers (MacDonald and Summers, 2020).…”

“…The importance of older adult education is entrenched in clinical guidelines (National Institute for Health and Care Excellence, 2018a, 2018b). In spite of clinical recommendations, evidence suggests caregivers receive insufficient pre- and post-diagnostic age-related education (Herron and Priest, 2013; Herron et al , 2020). Similarly, several studies identify the limitation of dementia awareness education for caregivers to improve confidence in supporting older people with intellectual disability (Furniss et al , 2012; Iacono et al , 2014; Ryan et al , 2018; Webber et al , 2016).…”

Media Framing of Disability and Employment in Japan: Traditional and Progressive Approaches

“…Consequently, through this simultaneous process of collection, analysis and theoretical comparison (Glaser, 1978; Glaser & Strauss, 1967), I identified three themes about disabled people’s employment in Japan that particularize Clogston’s and Haller’s models for a contemporary Japanese context. Second, my analysis reflects the assumption in grounded theory research of the existence of ‘multiple truths or possible explanations of a phenomenon’ (Herron et al, 2020, p. 5). The coexistence of multiple ways to view a phenomenon is consistent with framing theory.…”

Experiences of people with intellectual disability and dementia: A systematic review

“…are seen to be part of the person's intellectual disability (Herron et al, 2020). This extends existing stigma associated with intellectual disability even prior to a diagnosis of dementia (Scior et al, 2020).…”