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Palliat Med. 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.

Author information

1
1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
2
2 Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, North Middlesex University Hospital, London, UK.
3
3 Division of Psychiatry, University College London, London, UK.
4
4 The Bamford Centre for Mental Health and Wellbeing, Ulster University, Coleraine, UK.
5
5 Department of Primary Care and Population Health, University College London, London, UK.
6
6 Department of Statistical Science, University College London, London, UK.

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

PMID:
28922625
PMCID:
PMC5987852
DOI:
10.1177/0269216317726443
[Indexed for MEDLINE]
Free PMC Article

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