Home › Research › End-of-life care
Dying with dementia: symptoms, treatment, and quality of life in the last week of life
Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT.. Journal of pain and symptom management, 2013-07-31
Topic: Health services, long-term care and technology
Context Burdensome symptoms present frequently in dementia at the end of life, but we know little about the symptom control provided, such as type and dosage of medication. Objectives To investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia. Methods Within two weeks after death, physicians completed questionnaires about symptoms and treatment in the last week for 330 nursing home residents with dementia in the Dutch End of Life in Dementia study (2007-2011). We used linear regression to assess associations with QOL, measured by the Quality of Life in Late-Stage Dementia scale. Causes of death were abstracted from death certificates. Results Pain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%). Pain and shortness of breath were mostly treated with opioids and agitation mainly with anxiolytics. At the day of death, 77% received opioids, with a median of 90 mg/24 hours (oral equivalents), and 21% received palliative sedation. Pain and agitation were associated with a lower QOL. Death from respiratory infection was associated with the largest symptom burden. Conclusion Symptoms are common in dementia at the end of life, despite the large majority of residents receiving opioids. Dosages may be suboptimal with regard to weighing of effects and side effects. Future research may employ observation on a day-to-day basis to better assess effectiveness of symptom control and possible side effects.
Key findings
- Results Pain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%).
- Pain and agitation were associated with a lower QOL.
- Death from respiratory infection was associated with the largest symptom burden.
Study details
- Evidence strengthLow
How this study scored 36/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 21 of the 58 points we could judge it on, which is 36 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of pain and symptom management) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 1 / 5 | 2014 — within 20 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 23916680) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 21 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 21 of the 58 points we could judge it on is 36 out of 100. |
| Total | 36 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Free copy unknown: no free-copy check has an answer for this record yet. That does not mean it is paywalled.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Hendriks, S. A., Smalbrugge, M., Hertogh, C. M., & van der Steen, J. T. (2014). Dying with dementia: symptoms, treatment, and quality of life in the last week of life. Journal of pain and symptom management. https://doi.org/10.1016/j.jpainsymman.2013.05.015
Vancouver
Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT. Dying with dementia: symptoms, treatment, and quality of life in the last week of life. Journal of pain and symptom management. 2014. doi:10.1016/j.jpainsymman.2013.05.015. PMID: 23916680.
BibTeX
@article{hendriks2014-23916680,
author = {Hendriks, S. A. and Smalbrugge, M. and Hertogh, C. M. and van der Steen, J. T.},
title = {{Dying with dementia: symptoms, treatment, and quality of life in the last week of life}},
journal = {Journal of pain and symptom management},
year = {2014},
doi = {10.1016/j.jpainsymman.2013.05.015},
pmid = {23916680},
url = {https://doi.org/10.1016/j.jpainsymman.2013.05.015}
}
Related studies in End-of-life care
Also in End-of-life care
116 studies in the library are filed under End-of-life care with no topic tag they share with another; these are this study's neighbours in a fixed tour of them. The End-of-life care hub.