Consensus statement of the International Summit on Intellectual Disability and Dementia related to end‐of‐life care in advanced dementia

McCallion, Philip; Hogan, Mary; Santos, Flávia Heloísa dos; McCarron, Mary; Stemp, Sandy; Keller, Seth M.; Fortea, Juan; Bishop, Kathleen M.; Watchman, Karen; Janicki, Matthew P.

doi:10.1111/jar.12349

Cited by 38 publications

(31 citation statements)

References 17 publications

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“…In addition, only 22% (7 of 32) of patients had a documented preferred place of death; interestingly, 57% (4 of 7) of these patients also had palliative care team involvement, despite only 22% (7 of 32) of the overall study population receiving such specialist input. This suggests that the palliative care team was more responsive to this aspect of care planning when compared to ID services, supporting recommendations for more integrated care between these disciplines (McCallion et al, 2017). Similarly, only 22% of patients had an agreement on the use of cardiopulmonary resuscitation (CPR), in keeping with the findings of Wagemans et al (2017), whom suggest uncertainties regarding DNAR decisions among ID physicians and a need for further training in this area.…”

Section: Discussionmentioning

confidence: 83%

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

Tromans

Andrews

Wani

et al. 2018

Policy Practice Intel Disabi

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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.

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Section: Discussionmentioning

confidence: 83%

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

Tromans

Andrews

Wani

et al. 2018

Policy Practice Intel Disabi

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“…Having discussions about advanced dementia care is not a simple undertaking, and it requires all staff/family supporting the person to be able to acknowledge and understand the person's level of understanding, their life history, their ability and involvement in life decisions prior to dementia and to agree on the stage of dementia arrived at (McCallion et al . ).…”

Section: Commentarymentioning

confidence: 97%

“…One attempt to operationalise identifying possible progression to an end‐of‐life state in advanced dementia can be found in McCallion et al . ().…”

Section: Introductionmentioning

confidence: 97%

Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

McCarron

McCallion

Coppus

et al. 2018

J intellect Disabil Res

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The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.

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“…(), McCallion et al. () and Wark, Hussain, Müller, Ryan, and Parmenter () documented a range of important problems with access to end‐of‐life health services.…”

Section: Policy Issuesmentioning

confidence: 99%

End of life and people with intellectual disability

Stancliffe

Wiese

Read

2017

Research Intellect Disabil

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Consensus statement of the International Summit on Intellectual Disability and Dementia related to end‐of‐life care in advanced dementia

Abstract: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Cited by 38 publications

References 17 publications

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

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

Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

End of life and people with intellectual disability

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