Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Mar;32(3):668-681.
doi: 10.1177/0269216317726443. Epub 2017 Sep 18.

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

Elizabeth L Sampson  1   2 , Bridget Candy  1 , Sarah Davis  1 , Anna Buylova Gola  1 , Jane Harrington  1 , Michael King  3 , Nuriye Kupeli  1 , Gerry Leavey  4 , Kirsten Moore  1 , Irwin Nazareth  5 , Rumana Z Omar  6 , Victoria Vickerstaff  1   5 , Louise Jones  1
Affiliations

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

Elizabeth L Sampson et al. Palliat Med. 2018 Mar.

Abstract

Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.

Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia.

Design: 9-month prospective cohort study.

Setting and participants: Greater London, England, people with advanced dementia (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 Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), 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 and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and 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. In total, 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.

Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

Keywords: Dementia; behavioural symptoms; pain; palliative care; primary healthcare; psychomotor agitation; quality of healthcare; residential facilities; resource allocation.

PubMed Disclaimer

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Changes in symptoms over time in people with advanced dementia (n = 85).
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Knapp M, Privette A. Dementia UK. London: Alzheimer’s Society, 2007.
    1. Brayne C, Gao L, Dewey M, et al. Dementia before death in ageing societies – the promise of prevention and the reality. PLoS Med 2006; 3: e397. - PMC - PubMed
    1. Banerjee S, Owen J. Living well with dementia: a national dementia strategy. London: Department of Health, 2009.
    1. Sleeman KE, Ho YK, Verne J, et al. Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neurol 2014; 14: 59. - PMC - PubMed
    1. Weuve J, Hebert LE, Scherr PA, et al. Deaths in the United States among persons with Alzheimer’s disease. Alzheimers Dement 2014; 10: e40–e46. - PMC - PubMed

Publication types