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

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

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Aging and Advanced Dementia Matters: End-of-Life Care in Nursing Homes

Innovation in Aging ◽

10.1093/geroni/igaa057.1679 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 520-521

Author(s):

Ruth Lopez ◽

Ellen McCarthy ◽

Meghan Hendricksen ◽

Susan McLennon ◽

Anita Rogers ◽

...

Keyword(s):

Nursing Home ◽

End Of Life ◽

Racial Differences ◽

End Of Life Care ◽

Feeding Tube ◽

Nursing Home Care ◽

Life Care ◽

Advanced Dementia ◽

Southeastern Us ◽

Intensity Of Care

Abstract Over 5 million Americans have dementia, and the majority will die in nursing home (NHs). While comfort is the main goal of care for most NH residents with advanced dementia, they commonly receive burdensome and costly interventions such as hospital transfers and feeding tubes that are of little clinical benefit. Despite 20 years of research and numerous experts and associations advocating a palliative approach to care, quantitative studies continue to demonstrate striking and persistent regional, facility, and racial differences, including: greater intensity care among African American versus White residents; greater intensity of care in the Southeastern US; and wide variation in care among NHs in the same region of the country. The reasons for these differences are poorly understood. Assessment of Disparities and Variation for Alzheimer’s disease in Nursing home Care at End of life (ADVANCE) is a 3-year, NIA funded qualitative study of 16 NHs in 4 regions of the country which aims to explain regional and racial factors influencing feeding tube and hospital transfer rates. The purpose of this presentation is to present the methodology established in this study and to highlight factors challenging and enabling implementation of the study protocol. To date, data have been collected in 11 NHs, and include 135 staff interviews, 40 proxy interviews, and nearly 800 hours of observation. These findings demonstrate that although challenging, large qualitative research is possible and holds promise as an effective method to illuminate complex processes influencing end-of-life care for NH residents with advanced dementia.

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Antibiotic Use at the End-of-Life in Patients with Advanced Dementia: A Systematic Literature Review

Infection Control and Hospital Epidemiology ◽

10.1017/ice.2020.627 ◽

2020 ◽

Vol 41 (S1) ◽

pp. s120-s120

Author(s):

Alexandre Marra ◽

Mireia Puig-Asensio ◽

Eli Perencevich

Keyword(s):

Literature Review ◽

Cohort Studies ◽

End Of Life ◽

Systematic Literature Review ◽

End Of Life Care ◽

Final Analysis ◽

Antibiotic Use ◽

Life Care ◽

Advanced Dementia ◽

Days Of Therapy

Background: Improving the use of antibiotics across the care continuum will be necessary as we strive to protect our patients from antimicrobial resistance. One potential target for antimicrobial stewardship is during end-of-life care of patients with advanced dementia. We aimed to perform a systematic literature review measuring the burden of antibiotic use during end-of-life care in patients with dementia. Methods: We searched PubMed, CINAHL, and Embase through July 2019 for studies with the following inclusion criteria in the initial analysis: (1) end-of-life patients (ie, dementia, cancer, organ failure, frailty or multi-morbidity); (2) antibiotic use in the end-of-life care; with the final analysis restricted to (3) patients with advanced dementia. Only randomized controlled trials (RCTs) and cohort studies were included. Results: Of the 93 full-text articles, 17 studies (18.3%) met the selection criteria for further analysis. Most of the included studies were retrospective (n = 8) or prospective (n = 8) cohort studies. These studies in combination included 2,501 patients with advanced dementia. Also, 5 studies (698 patients, [27.9%]) were restricted to patients with Alzheimer’s disease. In 5 studies in which data were available, fewer than one-quarter of patients (19.9%, 498) with advanced dementia were referred to palliative care. In 12 studies >50% of patients received antibiotics during the end-of-life period. Also, 15 studies did not report the duration of antimicrobial therapy. Only 2 studies reported the antimicrobial consumption in days of therapy per 1,000 resident days. Only 6 studies studied whether the use of antibiotics was associated with beneficial outcomes (survival or comfort), and none of them evaluated potential adverse effects associated with antibiotic use. Conclusions: There are significant gaps in the literature surrounding antimicrobial use at the end of life in patients with advanced dementia. Future studies are needed to evaluate the benefits and harms of using antibiotics for patients during end-of-life care in this patient population.Acknowledgement. We thank Jennifer Deberg from Hardin Library for the Health Sciences, University of Iowa Libraries on the search methods.Disclosures: NoneFunding: None

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F10-C Launching Namaste Care in Canada: Evaluation of a Facility-Wide Education Program to Improve End-of-Life Care in Advanced Dementia

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2016.10.065 ◽

2016 ◽

Vol 52 (6) ◽

pp. e53 ◽

Cited By ~ 1

Author(s):

Sharon Kaasalainen ◽

Paulette Hunter ◽

Vanina Dal Bello Haas ◽

Lisa Dolovich ◽

Maureen Markle-Reid ◽

...

Keyword(s):

End Of Life ◽

Education Program ◽

End Of Life Care ◽

Life Care ◽

Advanced Dementia

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The Impact of Nursing Homes Staff Education on End-of-Life Care in Residents With Advanced Dementia: A Quality Improvement Study

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.10.268 ◽

2019 ◽

Vol 57 (1) ◽

pp. 93-99 ◽

Cited By ~ 6

Author(s):

Paola Di Giulio ◽

Silvia Finetti ◽

Fabrizio Giunco ◽

Ines Basso ◽

Debora Rosa ◽

...

Keyword(s):

Quality Improvement ◽

Nursing Homes ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Advanced Dementia ◽

Staff Education ◽

The Impact

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End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

Journal of Applied Research in Intellectual Disabilities ◽

10.1111/jar.12000 ◽

2012 ◽

Vol 25 (6) ◽

pp. 571-583 ◽

Cited By ~ 37

Author(s):

Michele Wiese ◽

Roger J. Stancliffe ◽

Susan Balandin ◽

Glennys Howarth ◽

Angela Dew

Keyword(s):

Intellectual Disability ◽

Older People ◽

End Of Life ◽

End Of Life Care ◽

Community Living ◽

Life Care

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Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

Journal of Research in Nursing ◽

10.1177/1744987118780919 ◽

2018 ◽

Vol 24 (6) ◽

pp. 366-382 ◽

Cited By ~ 5

Author(s):

Ruth Northway ◽

Stuart Todd ◽

Katherine Hunt ◽

Paula Hopes ◽

Rachel Morgan ◽

...

Keyword(s):

Intellectual Disability ◽

End Of Life ◽

Nursing Care ◽

End Of Life Care ◽

Life Care ◽

Care Providers ◽

Nursing Support ◽

Respiratory Problems ◽

The Uk ◽

The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

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