Abstract
Objectives
To describe observations of suffering in patients with dementia from the diagnosis
of pneumonia until cure or death.
Design
Prospective observational study between January 2012 and May 2014.
Setting
Dutch nursing homes (32).
Participants
Nursing home patients with dementia and pneumonia (n = 193).
Measurements
Independent observers performed observations of patients with dementia scheduled 13
times within the 15 days following diagnosis of pneumonia; twice daily in the first
2 days– to observe discomfort (Discomfort Scale–Dementia of Alzheimer Type; range
0–27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14–42),
pain (Pain Assessment in Advanced Dementia; range 0–10), and dyspnea (Respiratory
Distress Observation Scale; range 0–16).
Results
Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2%
of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics,
opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after
diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation,
SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased
in the days preceding death. Observed pain and dyspnea followed a comparable pattern.
Discomfort patterns did not differ much between cases treated with and without antibiotics.
Conclusions
Pneumonia in patients with dementia involved elevated levels of suffering during 10 days
following diagnosis and in the days preceding death. Overall observed discomfort was
low compared with prior Dutch studies, and the number of treatments to relieve symptoms
was higher. Future studies should examine whether symptoms of pneumonia can be relieved
even more, and what treatments are the most effective.
Keywords
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Article info
Publication history
Published online: September 22, 2015
Footnotes
This study is supported by The Netherlands Organization for Scientific Research (NWO), the Hague; Innovational Research Incentives Scheme, a career award to JTS (Grant number Vidi 91711339).
The authors declare no conflicts of interest.
Identification
Copyright
© 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
