Abstract
Background
In all, 39 % of people living in Swiss nursing homes suffer from dementia. Detailed data about type and course of symptoms displayed by these patients in their terminal phase are lacking.
Methods
This descriptive, retrospective study analysed 65 nursing documents from deceased people with dementia in four nursing homes in the canton of Zurich, Switzerland.
Results
Difficulties with mobility (81 %), pain (71 %) and sleep disturbance (63 %) were the most frequent of the 10 identified symptoms. Towards the end of life, difficulties with mobility, sleep disturbance, agitation and other neuropsychiatric symptoms, such as episodes of depression, decreased (decrescent pattern), while pain, feeding problems, breathing abnormalities, apathy and anxiety increased (crescent pattern). Courses of pain were documented in 17 % of the nursing records. In addition, 76 % of the residents had been visited on a daily basis by next of kin in their last 7 days, compared with only one third of residents previously. Furthermore, daily communication between healthcare professionals and next of kin tripled during this period.
Conclusion
The documented prevalence of a high and increasing level of pain towards the end of life, combined with the lack of documented courses of pain, shows potential for improvement in pain relief and pain identification for patients with dementia in their terminal phase. The increasing number of visits by next of kin and the increasingly intensive contact between healthcare professionals and next of kin in the last 7 days are a strong indicator that the end of life can be predicted relatively well by the involved participants and appropriate reactions follow.
Zusammenfassung
Hintergrund
In Schweizer Pflegeheimen leben etwa 39 % demenzerkrankte Personen. Es fehlen konkrete Daten über Symptome und Symptomverläufe dieser Personen in der Terminalphase.
Methode
Mit einem deskriptiv-retrospektiven Design wurden im Rahmen der Pallhome-Studie 65 Pflegedokumente von verstorbenen demenzerkrankten Personen aus 4 Heimen im Kanton Zürich, Schweiz analysiert.
Ergebnisse
Mobilitätsschwierigkeiten (81 %), Schmerzen (71 %) und Schlafstörungen (63 %) waren die häufigsten der insgesamt 10 identifizierten Symptome. Zum Lebensende hin nahmen Mobilitätsschwierigkeiten, Schlafstörungen, Agitation und andere Verhaltensauffälligkeiten sowie depressive Episoden ab (Decrescendomuster), während Schmerzen, Ernährungsschwierigkeiten, Atemauffälligkeiten, Apathie sowie Angst häufiger wurden (Crescendomuster). Schmerzverläufe waren bei 17 % der Personen in den Pflegeakten dokumentiert. In den letzten 7 Lebenstagen waren 76 % der untersuchten Verstorbenen von ihren Angehörigen täglich besucht worden, was vorher in weniger als einem Drittel der Fall war. Der tägliche Austausch zwischen Pflegepersonen und Angehörigen verdreifachte sich.
Schlussfolgerungen
Die dokumentierte hohe und gegen das Lebensende hin noch ansteigende Schmerzprävalenz im Zusammenhang mit dem Fehlen von dokumentierten Schmerzverläufen zeigt ein mögliches Verbesserungspotenzial im Bereich der systematischen Schmerzerkennung und -bekämpfung bei demenzerkrankten Personen am Lebensende. Die steigende Zahl an Besuchen und der zunehmend intensive Kontakt zwischen Pflege und Angehörigen in den letzten 7 Lebenstagen sind ein starker Hinweis, dass das Lebensende von allen Beteiligten gut prognostiziert werden kann und entsprechende Reaktionen erfolgen.
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Notes
The term nursing home in this study encompasses both nursing homes and old people’s homes.
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External funding
Swiss Alzheimer’s Association, Trust Fund of the Zurich School for Nurse Education.
Acknowledgements
We would like to thank the four practice partners, the Swiss Alzheimer’s Association and the Trust Fund of the Zurich School for Nurse Education for their support and assistance with this study. We would also like to thank MSc students Nina Braun, Ursula Heinrich and Ramona Odermatt for their contributions to the study.
Compliance with ethical guidelines
Conflict of interest. A. Koppiz, G. Bosshard, D. Händler Schuster, H. Hediger and L. Imhof state that there are no conflicts of interest. All studies on humans described in the present manuscript were carried out with the approval of the responsible ethics committee and in accordance with national law and the Helsinki Declaration of 1975 (in its current, revised form). Informed consent was obtained from all patients included in studies.
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Koppitz, A., Bosshard, G., Schuster, D. et al. Type and course of symptoms demonstrated in the terminal and dying phases by people with dementia in nursing homes. Z Gerontol Geriat 48, 176–183 (2015). https://doi.org/10.1007/s00391-014-0668-z
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DOI: https://doi.org/10.1007/s00391-014-0668-z