Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

Abstract

The extent to which people with intellectual disabilities have access to good quality end-of-life care is recognized as an important public health imperative given their increasing longevity and an allied growing incidence of life-limiting illnesses such as cancer and dementia

Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK

“…Those who died were predominantly in their 50 s or 60 s, mean age was 61.6 years. This largely reflects the age of the living population in which the deaths occurred and is more fully discussed elsewhere Todd et al 2020.…”

“…Care and support staff acted as respondents. The methodology and sample characteristics are described more fully elsewhere, (Todd, S. et al 2020 ,Hunt,K. et al 2019 ().…”

“…Nor did we study the deaths of adults who had lived in intellectual disability‐specific supported living or residential care settings, but who died after they had been moved to other settings, perhaps as a result of ageing or ill health. The absence of many of the oldest people from the study population is discussed elsewhere (Todd et al 2020) and reflects placement policies. Our findings therefore cannot be generalized to all adults with intellectual disabilities.…”

What Constitutes Good Quality End‐of‐Life Care? Perspectives of People With Intellectual Disabilities and Their Families

“…The delayed diagnosis may be caused by diagnostic overshadowing, multimorbidity, communication difficulties, and cognitive disability (Tuffrey-Wijne, Bernal, Hubert, Butler, & Hollins, 2009). Furthermore, Todd et al (2020) reported that the vast majority of deaths within the intellectual disability population are sudden and unexpected. As a result, the time between diagnosis of chronic illness and time of death is often very short; consequently, people with intellectual disabilities and their families cannot produce a care plan and this is challenging for professionals in terms of providing appropriate care at the end of life.…”

Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long‐term, generic care settings in the UK

“…For the most part, the growing research interest in the provision and outcomes of EoLC for adults with intellectual disabilities has focused on care settings specifically for people with intellectual disabilities, see, for example (Gray & Kim, 2017; Grindrod & Rumbold, 2017; Hunt et al, 2019; Lord et al, 2017; McCarron et al, 2010, 2011; McKenzie et al, 2017; Northway et al, 2018; Todd et al, 2013, 2020; Tuffrey‐Wijne et al, 2017, 2020; Tuffrey‐Wijne & Rose, 2017; Wark et al, 2017; Wiese et al, 2012, 2013). However, intellectual disability settings, even allowing for the high risk of premature mortality in people intellectual disabilities, may not have to deal with large numbers of deaths of adults with intellectual disabilities in any 1 year (Heslop et al, 2014; Todd et al, 2019, 2020). The risk of dying increases with age, so that, although people with intellectual disabilities are more likely to die prematurely than their fellow citizens, death rates in intellectual disability services reflect the predominantly middle‐aged population living there.…”