Caregivers' understanding of dementia predicts patients' comfort at death: A prospective observational study

BMC Medicine

Volumn 11, Issue 1, 2013, Pages

  van der Steen, Jenny T ^a   Onwuteaka Philipsen, Bregje D ^a   Knol, Dirk L ^a   Ribbe, Miel W ^a   Deliens, Luc ^a,b  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

Author keywords

Dementia; End of life; Palliative care

Indexed keywords

AGED; ARTICLE; CAREGIVER; COUNSELING; DEMENTIA; DISEASE SEVERITY; DOCTOR PATIENT RELATION; DYING; END OF LIFE IN DEMENTIA COMFORT ASSESSMENT IN DYING; FAMILY; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; NETHERLANDS; NURSING HOME PATIENT; OBSERVATIONAL STUDY; PALLIATIVE THERAPY; PATIENT COMFORT; PHYSICIAN; PREDICTION; PREDICTIVE VALUE; PROGNOSIS;

AGED; AGED, 80 AND OVER; CAREGIVERS; DEMENTIA; FAMILY NURSING; FEMALE; HUMANS; MALE; MIDDLE AGED; NETHERLANDS; PALLIATIVE CARE; PROSPECTIVE STUDIES; SURVIVAL ANALYSIS;

EID: 84875927582     PISSN: None     EISSN: 17417015     Source Type: Journal    
DOI: 10.1186/1741-7015-11-105     Document Type: Article

References (36)

1. World Health Organization Dementia: A Public Health Priority 2012, Geneva, Switzerland: WHO, World Health Organization.
2. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003, 326:30-34. 10.1136/bmj.326.7379.30, 1124913, 12516617.
3. Bern-Klug M. Calling the question of "possible dying" among nursing home residents: triggers, barriers, and facilitators. J Soc Work End Life Palliat Care 2006, 2:61-85. 10.1300/J457v02n03_06, 17387095.
4. Gessert CE, Forbes S, Bern-Klug M. Planning end-of-life care for patients with dementia: roles of families and health professionals. Omega (Westport) 2000, 42:273-291.
5. Caron C, Griffith J, Arcand M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long-term- care settings. J Appl Gerontol 2005, 24:231-247.
6. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB. The clinical course of advanced dementia. N Engl J Med 2009, 361:1529-1538. 10.1056/NEJMoa0902234, 2778850, 19828530.
7. Veerbeek L, Van Zuylen L, Swart SJ, Jongeneel G, van der Maas PJ, van der Heide A. Does recognition of the dying phase have an effect on the use of medical interventions?. J Palliat Care 2008, 24:94-99.
8. Lokker ME, van Zuylen L, Veerbeek L, van der Rijt CC, van der Heide A. Awareness of dying: it needs words. Support Care Cancer 2012, 20:1227-1233. 10.1007/s00520-011-1208-7, 3342506, 21688164.
9. Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark JB, De Simone G, Lundquist G, Voltz R, Ellershaw JE, Heide AV. Issues and needs in end-of-life decision making: an international modified Delphi study. Palliat Med 2012, 26:947-953. 10.1177/0269216311423794, 21969309.
10. Sachs GA. Dying from dementia. N Engl J Med 2009, 361:1595-1596. 10.1056/NEJMe0905988, 19828537.
11. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 2010, 22:37-55.
12. Hughes JC. Promoting palliative care in dementia. Lancet Neurol 2010, 9:25-27. 10.1016/S1474-4422(09)70328-X, 20083030.
13. Caron C, Arcand M, Griffith J. Creating a partnership with families in decision making for end-of-life care in Alzheimer disease: the perspective of family caregivers. Dementia 2005, 4:113-136.
14. van der Steen JT, Ribbe MW, Deliens L, Gutschow G, Onwuteaka-Philipsen BD. Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study. Alzheimer Dis Assoc Disord 2013, In press.
15. Staatsblad 2009 no 131. Besluit zorgplanbespreking AWBZ-zorg [Exceptional Medical Expenses Act, AWBZ] 2012, https://zoek.officielebekendmakingen.nl/stb-2009-131.html, Staatsblad 2009.
16. van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Klapwijk MS, Bezemer M, Achterberg WP, Knol DL, Ribbe MW, de Vet HC. 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 2012, 21:671-684. 10.1007/s11136-011-9978-4, 3323818, 21814875.
17. Cohen LW, van der Steen JT, Reed D, Hodgkinson JC, van Soest-Poortvliet MC, Sloane PD, Zimmerman S. Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands. J Am Geriatr Soc 2012, 60:316-322. 10.1111/j.1532-5415.2011.03816.x, 22288500.
18. van der Steen JT, Meuleman-Peperkamp I, Ribbe MW. Trends in treatment of pneumonia among Dutch nursing home patients with dementia. J Palliat Med 2009, 12:789-795. 10.1089/jpm.2009.0049, 19622013.
19. van der Steen JT, Pasman HR, Ribbe MW, Van Der Wal G, Onwuteaka-Philipsen BD. Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis 2009, 41:143-151. 10.1080/00365540802616726, 19065450.
20. Volicer L, Hurley AC, Blasi ZV. Scales for evaluation of End-of-Life Care in Dementia. Alzheimer Dis Assoc Disord 2001, 15:194-200. 10.1097/00002093-200110000-00005, 11723370.
21. van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Munn J, Achterberg WP, Ribbe MW, de Vet HC. 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 2011, 42:852-863. 10.1016/j.jpainsymman.2011.02.018, 21620642.
22. Volicer L, Hurley AC, Lathi DC, Kowall NW. Measurement of severity in advanced Alzheimer's disease. J Gerontol 1994, 49:M223-M226. 10.1093/geronj/49.5.M223, 8056941.
23. Bellelli G, Frisoni GB, Bianchetti A, Trabucchi M. The Bedford Alzheimer Nursing Severity scale for the severely demented: validation study. Alzheimer Dis Assoc Disord 1997, 11:71-77.
24. Morris JN, Fries BE, Mehr DR, Hawes C, Phillips C, Mor V, Lipsitz LA. MDS Cognitive Performance Scale. J Gerontol 1994, 49:M174-M182. 10.1093/geronj/49.4.M174, 8014392.
25. Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry 1982, 139:1136-1139.
26. van der Steen JT, Gijsberts MJ, Knol DL, Deliens L, Muller MT. Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families. Palliat Med 2009, 23:317-324. 10.1177/0269216309103124, 19346275.
27. Kraemer HC, Kiernan M, Essex M, Kupfer DJ. How and why criteria defining moderators and mediators differ between the Baron & Kenny and MacArthur approaches. Health Psychol 2008, 27(2 Suppl):S101-S108. 3376898, 18377151.
28. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977, 33:159-174. 10.2307/2529310, 843571.
29. van der Steen JT, Volicer L, Gerritsen DL, Kruse RL, Ribbe MW, Mehr DR. Defining severe dementia with the Minimum Data Set. Int J Geriatr Psychiatry 2006, 21:1099-1106. 10.1002/gps.1618, 16955417.
30. van der Steen JT, Heymans MW, Steyerberg EW, Kruse RL, Mehr DR. The difficulty of predicting mortality in nursing home residents. Eur Geriatr Med 2011, 2:79-81.
31. Fauth E, Hess K, Piercy K, Norton M, Corcoran C, Rabins P, Lyketsos C, Tschanz J. Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being. Aging Ment Health 2012, 16:699-711. 10.1080/13607863.2012.678482, 3430821, 22548375.
32. Perren S, Schmid R, Herrmann S, Wettstein A. The impact of attachment on dementia-related problem behavior and spousal caregivers' well-being. Attach Hum Dev 2007, 9:163-178. 10.1080/14616730701349630, 17508315.
33. Bern-Klug M, Gessert CE, Crenner CW, Buenaver M, Skirchak D. Getting everyone on the same page": nursing home physicians' perspectives on end-of-life care. J Palliat Med 2004, 7:533-544. 10.1089/jpm.2004.7.533, 15353097.
34. Helton MR, van der Steen JT, Daaleman TP, Gamble GR, Ribbe MW. A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Ann Fam Med 2006, 4:221-227. 10.1370/afm.536, 1479435, 16735523.
35. van der Steen JT, Kruse RL, Ooms ME, Ribbe MW, van der Wal G, Heintz LL, Mehr DR. Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart. J Am Geriatr Soc 2004, 52:691-699. 10.1111/j.1532-5415.2004.52204.x, 15086647.
36. Volandes AE, Paasche-Orlow MK, Barry MJ, Gillick MR, Minaker KL, Chang Y, Cook EF, Abbo ED, El-Jawahri A, Mitchell SL. Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ 2009, 338:b2159. 10.1136/bmj.b2159, 2688013, 19477893.