The ELCIDD Project: An Audit of End‐of‐Life Care in Persons with Intellectual Disabilities and Dementia

Abstract

With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition dementia presents opportunities for provision of pre‐planned end‐of‐life care. This audit focussed on the level of compliance with pre‐defined end‐of‐life care standards for a group of patients with intellectual disabilities and severe dementia. Compliance with pre‐defined end‐of‐life care standards was found to be highly variable. Areas of high compliance included all 32 patients having access to their primary care physician, 84% (n = 27) having regular review by their psychiatrist and 94% (n = 30) having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% (n = 8) of patients, with similarly few patients having agreement on the use of cardiopulmonary resuscitation (22%; n = 7) a plan for supporting their carers and/or family (13%; n = 4) or a documented preferred place of death (22%; n = 7). Possible reasons for variable compliance include limited awareness of end‐of‐life care standards among ID professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. There is a clear need for a more structured approach for the assessment and management of these patients, and recently published guidance may help support ID professionals in this regard.

Should inclusion have an expiry date? Older people's attitudes on intellectual disabilities

“…Longevity for people with intellectual disabilities has increased in recent decades (Merrick et al, 2014; Tromans et al, 2019). This rise is even more dramatic than among the general population (Bigby, 2010).…”