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Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life

Sampson, EL; candy, B; Davis, S; Gola, AB; Harrington, J; King, M; Kupeli, N; ... Jones, C; + view all (2017) Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliative Medicine 10.1177/0269216317726443. Green open access

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Abstract

Background: Increasing numbers of people are dying with advanced dementia (AdvD). Comfort and quality of life are key goals of care. Aims: In people with AdvD to describe 1) physical and psychological symptoms, 2) health and social care service utilisation, 3) care at end of life. Design: Nine month prospective cohort study. Setting and participants: Greater London, England, people with AdvD (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Co-morbidity Index, pressure sore risk/severity (Waterlow scale/Stirling Scale), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire, Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death, comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement), and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia, and pneumonia were more frequent in those who died. 76% had “do not resuscitate” statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusions: People with AdvD lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life

Type: Article
Title: Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/0269216317726443
Publisher version: http://dx.doi.org/10.1177/0269216317726443
Language: English
Additional information: Copyright © 2017 by SAGE Publications This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: dementia, palliative care, behavioral symptoms, psychomotor agitation, pain, residential facilities, quality of health care, primary health care, resource allocation
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Pop Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Pop Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
UCL > Provost and Vice Provost Offices > UCL BEAMS
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Statistical Science
URI: https://discovery.ucl.ac.uk/id/eprint/1566784
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