A person‐centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia—A participatory action study

Abstract

The World Health Organization estimates that 200 million people worldwide have an intellectual disability. Of this number, approximately 250,000 families in the United States, 60,000 in the UK and 45,000 in Canada are affected by Down syndrome (World Health Organisation, 2018). As recently as the 1980s, life expectancy remained below 20 years for people with Down syndrome; this is now over 60 years in developed countries (Ng, Flygare Wallén, & Ahlström, 2017). This has resulted in awareness that dementia disproportionality affects people with Down syndrome at an earlier age, average fifty-five, and is associated with mortality in 70% of adults (Hithersay et al., 2019). People with intellectual disabilities other than Down syndrome are also more likely to develop dementia earlier, on average approximately 10 years prior to that experienced by the population without an intellectual disability (British Psychological Society, 2015). Such demographics demonstrate the global importance of identifying appropriate support for people ageing with intellectual disability.

“It’s not the same without you:” Exploring the experience and perception of transition for people with intellectual disabilities and dementia

“…An example was illustrated in the women's shared comfort when discussing deceased family members. This finding is similar to other research that has highlighted the importance of maintaining friendships after a dementia diagnosis for people with intellectual disabilities (Watchman, Mattheys, McKernon, et al, 2020). These relationships may be particularly important for people with dementia as one‐on‐one interaction has been found to promote engagement and satisfaction with interactions (Ericsson et al, 2011).…”

“…The looming threat of transition and how it impacted daily behaviour of participants aligns with previous literature. Watchman, Mattheys, McKernon, et al (2020) found that adults with intellectual disabilities without dementia shared concerns of their peers with dementia “disappearing with no explanation” (p.10), often to more restrictive residential settings. Even though participants in this study were not formally aware of their dementia diagnosis, they demonstrated an awareness that they were being actively surveilled by staff.…”

Psychosocial interventions for older people with intellectual disabilities and the role of support staff: A systematic review

“…The participant showed progress and reductions in challenging behaviour. Finally, two studies examined the implementation of multiple psychosocial interventions with people (including two older participants) with mild intellectual disabilities and psychotic disorders (Raftery et al, 2017 ) and 14 older people with intellectual disabilities and dementia (Watchman et al, 2020 ). These personalised approaches (e.g., social skills intervention, reminiscence, photo‐voice technology) apparently directed particular attention to the participants' psychosocial needs, psychological functioning, daily living skills and overall QoL.…”

“…One study (Raftery et al, 2017 ) reported reductions in psychopathology (e.g., anxiety) and an increase in psychological functioning and QoL. Another study (Watchman et al, 2020 ) suggested that individualised psychosocial interventions could have the potential to reduce distress or agitation in older participants.…”

“…Distinctions can nevertheless be made with regard to the intensity of their role and the skills that were required before the intervention could be applied (e.g., staff training). One distinct category consists of the nine studies that involved training staff members before they carried out the intervention (Bai et al, 2014 ; Bucholz et al, 2008 ; Cooper & Browder, 2001 ; Darling & Circo, 2015 ; Fox et al, 2009 ; Hoffman et al, 2019 ; Kruithof et al, 2018 ; Lifshitz & Klein, 2013; Martens et al, 2017 ; Samuel et al, 2008 ; Schaap et al, 2019 ; Taber‐Doughty et al, 2010 ; Vlaskamp & Van der Putten, 2009 ; Wagemaker et al, 2017 ; Watchman et al, 2020 ). For example, in a personalised day programme for adults with intellectual disabilities and autism (Fox et al, 2009 ), support staff were involved in both the selection of participants and the implementation of the programme.…”