Type and course of symptoms demonstrated in the terminal and dying phases by people with dementia in nursing homes

Symptome und Symptomverläufe bei Menschen mit Demenz in der Terminal- und Sterbephase in Pflegeheimen

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.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Notes

  1. 1.

    The term nursing home in this study encompasses both nursing homes and old people’s homes.

References

  1. 1.

    Schweizer Alzheimervereinigung (2009) 102’000 Menschen mit Demenz in der Schweiz. http://www.alzheimerurischwyz.ch/udoc/74.pdf. Accessed 06 Jun 2014

  2. 2.

    Bundesamt für Statistik (2010) Gesundheitszustand von betagten Personen in Institutionen 2008/09. http://www.bfs.admin.ch/bfs/portal/de/index/themen/14/02/01/key/07/03.html. Accessed 06 Jun 2014

  3. 3.

    Houttekier D, Cohen J, Bilsen J et al (2010) Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc 58:751–756

    Article  PubMed  Google Scholar 

  4. 4.

    Mitchell SL, Teno J, Miller SC, Mor V (2005) A national study of the location of death for older persons with dementia. J Am Geriatr Soc 53:299–305

    Article  PubMed  Google Scholar 

  5. 5.

    Bundesamt für Statistik (2013) Todesursachenstatistik—Sterblichkeit und deren Hauptursachen in der Schweiz. http://www.bfs.admin.ch/bfs/portal/de/index/news/publikationen.html?publicationID=5176. Accessed 06 Jun 2014

  6. 6.

    Bundesamt für Statistik (2006) Szenarien zur Bevölkerungsentwicklung der Schweiz: 2005–2050. http://www.bfs.admin.ch/bfs/portal/de/index/themen/01/22/publ.html?publicationID=2411. Accessed 06 Jun 2014

  7. 7.

    Aminoff BZ, Adunsky A (2004) Dying dementia patients: too much suffering, too little palliation. Am J Alzheimers Dis Other Demen 19:243–247

    Article  PubMed  Google Scholar 

  8. 8.

    Aminoff BZ, Adunsky A (2006) Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing 35:597–601

    Article  PubMed  Google Scholar 

  9. 9.

    Steen JT van der (2010) Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 22:37–55

    PubMed  Google Scholar 

  10. 10.

    Schweizerische Gesellschaft für Palliative Medizin Pflege und Begleitung (2012) Kompetenzen für Spezialisten in Palliative Care. http://www.palliative.ch/fileadmin/user_upload/palliative/fachwelt/E_Standards/Kompetenzkatalog_DE.pdf. Accessed 06 Jun 2014

  11. 11.

    Polit DF, Beck CT (2012) Nursing research: generating and assessing evidence for nursing practice. Wolters Kluwer Health/Lippincott Williams & Wilkins, Philadelphia, pp 276–277

  12. 12.

    Kiely DK, Shaffer ML, Mitchell SL (2012) Scales for the evaluation of end-of-life care in advanced dementia: sensitivity to change. Alzheimer Dis Assoc Disord 26:358–363

    Article  PubMed Central  PubMed  Google Scholar 

  13. 13.

    Volicer L, Hurley AC, Blasi ZV (2001) Scales for evaluation of end-of-life care in dementia. Alzheimer Dis Assoc Disord 15:194–200

    Article  CAS  PubMed  Google Scholar 

  14. 14.

    Dodd M, Janson S, Facione N et al (2001) Advancing the science of symptom management. J Adv Nurs 33:668–676

    Article  CAS  PubMed  Google Scholar 

  15. 15.

    Doenges ME, Frances MM, Alice M (2013) Pflegediagnosen und Pflegemassnahmen. Huber, Bern

  16. 16.

    Treusch Y, Jerosch D, Majic T et al (2010) How can we provide better services for demented nursing home residents suffering from apathy? Psychiatr Prax 37:84–88

    Article  PubMed  Google Scholar 

  17. 17.

    Cummings JL (2009) Neuropsychiatric Inventory—Nursing Home Version (NPI-NH). Comprehensive assessment of psychopathology in patients with dementia residing in nursing homes. http://www.livinglongerlivingbetter.gov.au/internet/living/publishing.nsf/Content/1CC5715F37B20521CA257B9C001B2D13/$File/NPI-NH%20assessment%20tool.pdf. Accessed 06 Jun 2014

  18. 18.

    Testad I, Aasland AM, Aarsland D (2007) Prevalence and correlates of disruptive behavior in patients in Norwegian nursing homes. Int J Geriatr Psychiatry 22:916–921

    Article  CAS  PubMed  Google Scholar 

  19. 19.

    Deutsche Gesellschaft für Psychiatrie Psychotherapie und Nervenheilkunde, Deutsche Gesellschaft für Neurologie (2009) S3-Leitlinie Demenzen. http://www.google.ch/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&sqi=2&ved=0CCgQFjAA&url=http%3A%2F%2Fwww.dgn.org%2Fimages%2Fstories%2Fdgn%2Fpdf%2Fs3_leitlinie_demenzen.pdf&ei=BIQTU5HlNYeS7AaU-oDQCw&usg=AFQjCNGIgIGTl7BdQuILcSNdzwhWwB7h2w&bvm=bv.61965928,bs.1,d.bGE. Accessed 20. June 2012

  20. 20.

    Sass H, Wittchen H-U, Zaudig M et al (1998) Diagnostisches und statistisches Manual psychischer Störungen, DSM-IV: übersetzt nach der vierten Auflage des Diagnostic and statistical manual of mental disorders der American Psychiatric Association. Hogrefe, Göttingen

  21. 21.

    Thalmann A, Morfeld M, Benthien A (2012) Anxiety and depression in the elderly: results of a regional examination. Gesundheitswesen 74:29–33

    Article  CAS  PubMed  Google Scholar 

  22. 22.

    Bortz J (2005) Statistik für Human- und Sozialwissenschaftler. Springer, Heidelberg

  23. 23.

    Bausewein C (2005) Symptome in der Terminalphase. Onkologe 11:420–426

    Article  Google Scholar 

  24. 24.

    Jaarsma T, Beattie JM, Ryder M et al (2009) Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 11:433–443

    Article  PubMed  Google Scholar 

  25. 25.

    Marchetti P, Voltz R, Rubio C et al (2013) Provision of palliative care and pain management services for oncology patients. J Natl Compr Canc Netw 11:17–27

    Google Scholar 

  26. 26.

    Mitchell SL, Teno J, Kiely D et al (2009) The clinical course of advanced dementia. N Engl J Med 361:1529–1538

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  27. 27.

    Oechsle K, Goerth K, Bokemeyer C et al (2013) Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians. Support Care Cancer 21:1955–1962

    Article  PubMed  Google Scholar 

  28. 28.

    Pinnock H, Kendall M, Murray SA et al (2011) Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ Support Palliat Care 1:174–183

    Article  PubMed  Google Scholar 

  29. 29.

    Steen JT van der, Ribbe MW (2007) Dying with dementia: what do we know about it? Tijdschr Gerontol Geriatr 38:288–297

    Article  PubMed  Google Scholar 

  30. 30.

    Vandervoort A, Van den Block L, Steen JT van der et al (2013) Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 14:485–492

    Article  PubMed  Google Scholar 

  31. 31.

    Lunney JR, Lynn JR, Foley DJ et al (2003) Patterns of functional decline at the end of life. JAMA 289:2387–2392

    Article  PubMed  Google Scholar 

  32. 32.

    Cornegé-Blokland E, Kleijer BC, Hertogh C et al (2012) Reasons to prescribe antipsychotics for the behavioral symptoms of dementia: a survey in Dutch nursing homes among physicians, nurses, and family caregivers. J Am Med Dir Assoc 13:80.e81–80.e86

    Article  PubMed  Google Scholar 

  33. 33.

    Lussier D, Bruneau M-A, Villalpando JM (2011) Management of end-stage dementia. Prim Care 38:247–264

    Article  PubMed  Google Scholar 

  34. 34.

    Volicer L, Seltzer B, Rheaume Y et al (1989) Eating difficulties in patients with probable dementia of the Alzheimer type. J Geriatr Psychiatry Neurol 2:188–195

    Article  CAS  PubMed  Google Scholar 

  35. 35.

    Leonard M, Raju B, Conroy M et al (2008) Reversibility of delirium in terminally ill patients and predictors of mortality. Palliat Med 22:848–854

    Article  CAS  PubMed  Google Scholar 

  36. 36.

    Fick DM, Hodo DM, Lawrence F et al (2007) Recognizing delirium superimposed on dementia: assessing nurses’ knowledge using case vignettes. J Gerontol Nurs 33:40–47

    PubMed Central  PubMed  Google Scholar 

  37. 37.

    Herr K, Bjoro K, Decker S (2006) Tools for assessment of pain in nonverbal older adults with sementia: a state-of-the-science review. J Pain Symptom Manage 31:170–192

    Article  PubMed  Google Scholar 

  38. 38.

    Smith M (2005) Pain assessment in nonverbal older adults with advanced dementia. Perspect Psychiatr Care 41:99–113

    Article  PubMed  Google Scholar 

  39. 39.

    World Health Organization (2011) Palliative care for older people: better practices. http://www.euro.who.int/en/what-we-publish/abstracts/palliative-care-for-older-people-better-practices. Accessed 06 Jun 2014

  40. 40.

    Lunney M (2010) Use of critical thinking in the diagnostic process. Int J Nurs Terminol Classif 21:82–88

    Article  PubMed  Google Scholar 

  41. 41.

    Jarvis C (2008) Physical examination and health assessment. Saunders/Elsevier, St. Louis

  42. 42.

    Wilkinson JM (2011) Nursing process and critical thinking. Pearson, New York

  43. 43.

    Donald F, Martin-Misener R, Carter N et al (2013) A systematic review of the effectiveness of advanced practice nurses in long-term care. J Adv Nurs 69:2148–2161

    Article  PubMed  Google Scholar 

  44. 44.

    Sorenson HM (2013) Improving end-of-life care for patients with chronic obstructive pulmonary disease. Ther Adv Respir Dis 7:320–326

    Article  PubMed  Google Scholar 

  45. 45.

    Kiely DK, Volicer L, Teno J et al (2006) The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Dis Assoc Disord 20:176–181

    Article  PubMed Central  PubMed  Google Scholar 

  46. 46.

    Soest-Poortvliet MC van, Steen JT van der, Zimmerman S et al (2012) Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Qual Life Res 21:671–684

    Article  PubMed Central  PubMed  Google Scholar 

  47. 47.

    Soest-Poortvliet MC van, Steen JT van der, Zimmerman S et al (2011) Measuring the quality of dying and quality of care when dying in long-term care settings: a qualitative content analysis of available instruments. J Pain Symptom Manage 42:852–863

    Article  PubMed  Google Scholar 

  48. 48.

    Chen J, Lamberg JL, Chen Y et al (2006) Occurrence and treatment of suspected pneumonia in long-term care residents dying with advanced dementia. J Am Geriatr Soc 54:290–295

    Article  PubMed  Google Scholar 

  49. 49.

    Givens JL, Selby K, Goldfeld KS et al (2012) Hospital transfers of nursing home residents with advanced dementia. J Am Geriatr Soc 60:905–909

    Article  PubMed Central  PubMed  Google Scholar 

  50. 50.

    Steen JT van der, Pasman HRW, Ribbe MW et al (2009) Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis 41:143–151

    Article  Google Scholar 

  51. 51.

    Singh H, Giardina T, Meyer A et al (2013) Types and origins of diagnostic errors in primary care settings. JAMA 173:418–425

    Google Scholar 

Download references

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.

Author information

Affiliations

Authors

Corresponding author

Correspondence to A. Koppitz.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

Keywords

  • Dementia
  • Nursing home
  • Symptoms
  • Palliative care
  • Terminal phase

Schlüsselwörter

  • Demenz
  • Pflegeheim
  • Symptome
  • Palliative Care
  • Terminalphase