Table of Contents
Advances in Geriatrics
Volume 2014 (2014), Article ID 346485, 10 pages
http://dx.doi.org/10.1155/2014/346485
Review Article

Outcome Measures for Dementia in the Advanced Stage and at the End of Life

1School of Aging Studies, University of South Florida, 4202 E. Fowler Avenue, Tampa, FL 33620, USA
2Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

Received 2 March 2014; Accepted 14 July 2014; Published 21 August 2014

Academic Editor: Stavros Baloyannis

Copyright © 2014 Ladislav Volicer and Jenny T. van der Steen. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. J. T. van der Steen, M. E. Ooms, D. R. Mehr, G. van der Wal, and M. W. Ribbe, “Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline,” Journal of the American Geriatrics Society, vol. 50, no. 3, pp. 439–448, 2002. View at Publisher · View at Google Scholar · View at Scopus
  2. J. T. van der Steen, R. L. Kruse, K. L. Szafara et al., “Benefits and pitfalls of pooling datasets from comparable observational studies: combining US and Dutch nursing home studies,” Palliative Medicine, vol. 22, no. 6, pp. 750–759, 2008. View at Publisher · View at Google Scholar · View at Scopus
  3. J. T. Van der Steen, P. Lane, N. W. Kowall, D. L. Knol, and L. Volicer, “Antibiotics and mortality in patients with lower respiratory infection and advanced dementia,” Journal of the American Medical Directors Association, vol. 13, no. 2, pp. 156–161, 2012. View at Publisher · View at Google Scholar · View at Scopus
  4. J. T. van der Steem, L. Volicer, D. L. Gerritsen, R. L. Kruse, M. W. Ribbe, and D. R. Mehr, “Defining Severe dementia with the Minimum Data Set,” International Journal of Geriatric Psychiatry, vol. 21, no. 11, pp. 1099–1106, 2006. View at Publisher · View at Google Scholar · View at Scopus
  5. F. Galindo-Garre, S. A. Hendriks, L. Volicer, M. Smalbrugge, C. M. Hertogh, and J. T. van der Steen, “The bedford Alzheimer nursing-severity scale to assess dementia severity in advanced dementia,” The American Journal of Alzheimer's Disease and Other Dementias, vol. 29, no. 1, pp. 84–89, 2013. View at Google Scholar
  6. M. C. van Soest-Poortvliet, J. T. van der Steen, S. Zimmerman et al., “Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care,” Journal of the American Medical Directors Association, vol. 14, no. 3, pp. 179–186, 2013. View at Publisher · View at Google Scholar · View at Scopus
  7. L. Volicer, J. T. van der Steen, and D. H. M. Frijters, “Modifiable factors related to abusive behaviors in nursing home residents with dementia,” Journal of the American Medical Directors Association, vol. 10, no. 9, pp. 617–622, 2009. View at Publisher · View at Google Scholar · View at Scopus
  8. J. T. van der Steen, L. Radbruch, C. M. Hertogh et al., “White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care,” Palliative Medicine, vol. 28, no. 3, pp. 197–209, 2014. View at Google Scholar
  9. J. C. Morris, Persistent Failure of “Disease-Modifying” Drugs to Benefit Alzheimer Disease: Now What?2013.
  10. C. W. Hartmann, A. L. Snow, R. S. Allen, P. A. Parmelee, J. A. Palmer, and D. Berlowitz, “A conceptual model for culture change evaluation in nursing homes,” Geriatric Nursing, vol. 34, pp. 388–394, 2013. View at Publisher · View at Google Scholar · View at Scopus
  11. S. A. Hendriks, M. Smalbrugge, C. M. P. M. Hertogh, and J. T. van der Steen, “Dying with dementia: symptoms, treatment, and quality of life in the last week of life,” Journal of Pain and Symptom Management, vol. 47, no. 4, pp. 710–720, 2014. View at Publisher · View at Google Scholar · View at Scopus
  12. J. T. van der Steen, “Dying with dementia: what we know after more than a decade of research,” Journal of Alzheimer's Disease, vol. 22, no. 1, pp. 37–55, 2010. View at Publisher · View at Google Scholar · View at Scopus
  13. A. L. Stewart, J. Teno, D. L. Patrick, and J. Lynn, “The concept of quality of life of dying persons in the context of health care,” Journal of Pain and Symptom Management, vol. 17, no. 2, pp. 93–108, 1999. View at Publisher · View at Google Scholar · View at Scopus
  14. M. F. Weiner, K. Martin-Cook, D. A. Vetlik, K. Saine, B. Foster, and C. S. Fontaine, “The quality of life in late-stage dementia (QUALID) scale,” Journal of American Medical Directors Association, vol. 1, pp. 114–116, 2000. View at Google Scholar
  15. J. Hoe, C. Katona, B. Roch, and G. Livingston, “Use of the QOL-AD for measuring quality of life in people with severe dementia—the LASER-AD study,” Age and Ageing, vol. 34, no. 2, pp. 130–135, 2005. View at Publisher · View at Google Scholar · View at Scopus
  16. M. Folstein, S. Folstein, and P. J. McHugh, “‘Mini-mental State,’ a practical method for grading the cognitive state of patients for clinicians,” Journal of Psychiatric Research, vol. 12, pp. 189–198, 1975. View at Google Scholar
  17. R. E. Ready, B. R. Ott, J. Grace, and I. Fernandez, “The Cornell-Brown Scale for quality of life in dementia,” Alzheimer Disease and Associated Disorders, vol. 16, no. 2, pp. 109–115, 2002. View at Publisher · View at Google Scholar · View at Scopus
  18. G. S. Alexopoulos, R. C. Abrams, R. C. Young, and C. A. Shamoian, “Cornell scale for depression in dementia,” Biological Psychiatry, vol. 23, no. 3, pp. 271–284, 1988. View at Publisher · View at Google Scholar · View at Scopus
  19. T. P. Ettema, R. Dröes, J. De Lange, G. J. Mellenbergh, and M. W. Ribbe, “QUALIDEM: development and evaluation of a dementia specific quality of life instrument,” International Journal of Geriatric Psychiatry, vol. 22, no. 6, pp. 549–556, 2007. View at Publisher · View at Google Scholar · View at Scopus
  20. G.-O. Josep, P.-P. Xènia, L.-P. Secundino et al., “Cross-cultural adaptation and psychometric validation of a Spanish version of the quality of life in late-stage dementia scale,” Quality of Life Research, vol. 19, no. 3, pp. 445–453, 2010. View at Publisher · View at Google Scholar · View at Scopus
  21. D. Schalkwijk, L. R. Verlare, M. T. Muller, D. L. Knol, and J. T. van der Steen, “Measuring quality of life in nursing home residents with severe dementia: psychometric properties of the QUALID scale,” Tijdschrift voor Gerontologie en Geriatrie, vol. 40, no. 5, pp. 184–192, 2009. View at Publisher · View at Google Scholar · View at Scopus
  22. H. Falk, L. Persson, and H. Wijk, “A psychometric evaluation of a Swedish version of the Quality of Life in Late-Stage Dementia (QUALID) scale,” International Psychogeriatrics, vol. 19, no. 6, pp. 1040–1050, 2007. View at Publisher · View at Google Scholar · View at Scopus
  23. K. Y. Kolcaba, “A taxonomic structure for the concept comfort,” Image, vol. 23, no. 4, pp. 237–240, 1991. View at Publisher · View at Google Scholar · View at Scopus
  24. A. C. Hurley, B. J. Volicer, P. A. Hanrahan, S. Houde, and L. Volicer, “Assessment of discomfort in advanced Alzheimer patients,” Research in Nursing & Health, vol. 15, no. 5, pp. 369–377, 1992. View at Publisher · View at Google Scholar · View at Scopus
  25. J. T. van der Steen, M. J. Gijsberts, D. L. Knol, L. Deliens, and M. T. Muller, “Ratings of symptoms and comfort in dementia patients at the end of life: Comparison of nurses and families,” Palliative Medicine, vol. 23, no. 4, pp. 317–324, 2009. View at Publisher · View at Google Scholar · View at Scopus
  26. L. I. Hoogendoorn, S. V. D. Kamp, C. A. Sheer Mahomed, H. J. Adèr, M. E. Ooms, and J. T. Van der Steen, “The role of the observer in the reliability of the Dutch Discomfort Scale—Dementia of Alzheimer Type (DS-DAT),” Tijdschrift voor Gerontologie en Geriatrie, vol. 32, no. 3, pp. 117–121, 2001 (Dutch). View at Google Scholar · View at Scopus
  27. C. J. Camp, “The Menorah Park Engagement Scale (MPES) was developed in conjunction with the development of Montessori-Based Dementia Programming—MBDP,” in Clinical Applied Gerontological Interventions in Long-Term Care, R. C. Intrieri and L. Hyer, Eds., pp. 295–314, Springer, New York, NY, USA, 2006. View at Google Scholar
  28. C. J. Camp, “Origins of montessori programming for dementia,” Non-Pharmacologic Therapies in Dementia, vol. 1, no. 2, pp. 163–174, 2010. View at Google Scholar
  29. L. L. Eldridge, D. Masterman, and B. J. Knowlton, “Intact implicit habit learning in Alzheimer's disease,” Behavioral Neuroscience, vol. 116, no. 4, pp. 722–726, 2002. View at Publisher · View at Google Scholar · View at Scopus
  30. J. Cohen-Mansfield, M. Dakheel-Ali, and M. S. Marx, “Engagement in persons with dementia: the concept and its measurement,” The American Journal of Geriatric Psychiatry, vol. 17, no. 4, pp. 299–307, 2009. View at Publisher · View at Google Scholar · View at Scopus
  31. B. A. Ferrell, B. R. Ferrell, and L. Rivera, “Pain in cognitively impaired nursing home patients,” Journal of Pain and Symptom Management, vol. 10, no. 8, pp. 591–598, 1995. View at Publisher · View at Google Scholar · View at Scopus
  32. L. Volicer, S. A. Berman, P. B. Cipolloni, and A. Mandell, “Persistent vegetative state in Alzheimer disease: does it exist?” Archives of Neurology, vol. 54, no. 11, pp. 1382–1384, 1997. View at Publisher · View at Google Scholar · View at Scopus
  33. L. J. Cole, M. Gavrilescu, L. A. Johnston, S. J. Gibson, M. J. Farrell, and G. F. Egan, “The impact of Alzheimer's disease on the functional connectivity between brain regions underlying pain perception,” European Journal of Pain, vol. 15, no. 6, pp. 568.e1–568.e11, 2011. View at Publisher · View at Google Scholar · View at Scopus
  34. F. Benedetti, C. Arduino, S. Vighetti, G. Asteggiano, L. Tarenzi, and I. Rainero, “Pain reactivity in Alzheimer patients with different degrees of cognitive impairment and brain electrical activity deterioration,” Pain, vol. 111, no. 1-2, pp. 22–29, 2004. View at Publisher · View at Google Scholar · View at Scopus
  35. M. Kunz, V. Mylius, S. Scharmann, K. Schepelman, and S. Lautenbacher, “Influence of dementia on multiple components of pain,” European Journal of Pain, vol. 13, no. 3, pp. 317–325, 2009. View at Publisher · View at Google Scholar · View at Scopus
  36. E. Carlino, F. Benedetti, I. Rainero et al., “Pain perception and tolerance in patients with frontotemporal dementia,” Pain, vol. 151, no. 3, pp. 783–789, 2010. View at Publisher · View at Google Scholar · View at Scopus
  37. A. L. Gilmore-Bykovskyi and B. J. Bowers, “Understanding nurses' decisions to treat pain in nursing home residents with dementia,” Research in Gerontological Nursing, vol. 6, no. 2, pp. 127–138, 2013. View at Publisher · View at Google Scholar · View at Scopus
  38. S. Pautex, A. Michon, M. Guedira et al., “Pain in severe dementia: self-assessment or observational scales?” Journal of the American Geriatrics Society, vol. 54, no. 7, pp. 1040–1045, 2006. View at Publisher · View at Google Scholar · View at Scopus
  39. S. M. G. Zwakhalen, R. T. C. M. Koopmans, P. J. E. M. Geels, M. P. F. Berger, and J. P. H. Hamers, “The prevalence of pain in nursing home residents with dementia measured using an observational pain scale,” European Journal of Pain, vol. 13, no. 1, pp. 89–93, 2009. View at Publisher · View at Google Scholar · View at Scopus
  40. A. Vandervoort, L. Van den Block, J. T. van der Steen et al., “Nursing home residents dying with dementia in flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying,” Journal of the American Medical Directors Association, vol. 14, no. 7, pp. 485–492, 2013. View at Publisher · View at Google Scholar · View at Scopus
  41. L. C. E. Pinzon, M. Claus, K. M. Perrar, K. I. Zepf, S. Letzel, and M. Weber, “Dying with dementia: symptom burden, quality of care, and place of death,” Deutsches Arzteblatt International, vol. 110, no. 12, pp. 195–202, 2013. View at Publisher · View at Google Scholar · View at Scopus
  42. K. Herr, K. Bjoro, and S. Decker, “Tools for assessment of pain in nonverbal older adults with dementia: a state-of-the-science review,” Journal of Pain and Symptom Management, vol. 31, no. 2, pp. 170–192, 2006. View at Publisher · View at Google Scholar · View at Scopus
  43. K. Herr, P. J. Coyne, M. McCaffery, R. Manworren, and S. Merkel, “Pain assessment in the patient unable to self-report: position statement with clinical practice recommendations,” Pain Management Nursing, vol. 12, no. 4, pp. 230–250, 2011. View at Publisher · View at Google Scholar · View at Scopus
  44. V. Warden, A. C. Hurley, and L. Volicer, “Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale,” Journal of the American Medical Directors Association, vol. 4, no. 1, pp. 9–15, 2003. View at Publisher · View at Google Scholar · View at Scopus
  45. S. C. van Nispen tot Pannerden, M. J. J. M. Candel, S. M. G. Zwakhalen, J. P. H. Hamers, L. M. G. Curfs, and M. P. F. Berger, “An item response theory-based assessment of the pain assessment checklist for Seniors with Limited Ability to Communicate (PACSLAC),” Journal of Pain, vol. 10, no. 8, pp. 844–853, 2009. View at Publisher · View at Google Scholar · View at Scopus
  46. J. Cohen-Mansfield, M. S. Marx, and A. S. Rosenthal, “A description of agitation in a nursing home,” Journals of Gerontology, vol. 44, no. 3, pp. M77–M84, 1989. View at Google Scholar · View at Scopus
  47. L. Volicer, “What is NPI item “agitation/Aggression” really measuring?” American Journal of Geriatric Psychiatry, vol. 19, no. 12, p. 1046, 2011. View at Publisher · View at Google Scholar · View at Scopus
  48. D. L. Gerritsen, W. P. Achterberg, N. Steverink, A. M. Pot, D. H. M. Frijters, and M. W. Ribbe, “The MDS Challenging Behavior Profile for long-term care,” Aging and Mental Health, vol. 12, no. 1, pp. 116–123, 2008. View at Publisher · View at Google Scholar · View at Scopus
  49. A. C. Hurley, L. Volicer, L. Camberg et al., “Measurement of observed agitation in patients with dementia of the Alzheimer type,” Journal of Mental Health and Aging, vol. 5, no. 2, pp. 117–132, 1999. View at Google Scholar · View at Scopus
  50. L. Sennott-Miller, C. Murdaugh, and A. S. Hinshaw, “Magnitude estimation: issues and practical applications,” Western Journal of Nursing Research, vol. 10, no. 4, pp. 414–424, 1988. View at Publisher · View at Google Scholar · View at Scopus
  51. L. Camberg, P. Woods, W. L. Ooi et al., “Evaluation of simulated presence: a personalized approach to enhance well-being in persons with Alzheimer's disease,” Journal of the American Geriatrics Society, vol. 47, no. 4, pp. 446–452, 1999. View at Google Scholar · View at Scopus
  52. E. Kong, “Agitation in dementia: concept clarification,” Journal of Advanced Nursing, vol. 52, no. 5, pp. 526–536, 2005. View at Publisher · View at Google Scholar · View at Scopus
  53. J. L. Cummings, M. Mega, K. Gray, S. Rosenberg-Thompson, D. A. Carusi, and J. Gornbein, “The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia,” Neurology, vol. 44, no. 12, pp. 2308–2314, 1994. View at Publisher · View at Google Scholar · View at Scopus
  54. B. Reisberg, J. Borenstein, S. P. Salob, S. H. Ferris, E. Franssen, and A. Georgotas, “Behavioral symptoms in Alzheimer's disease: phenomenology and treatment,” Journal of Clinical Psychiatry, vol. 48, supplement, pp. 9–15, 1987. View at Google Scholar · View at Scopus
  55. Y. Jeon, J. Sansoni, L. Low, L. Chenoweth, S. Zapart, and N. Marosszeky, “Recommended measures for the assessment of behavioral disturbances associated with dementia,” The American Journal of Geriatric Psychiatry, vol. 19, no. 5, pp. 403–415, 2011. View at Publisher · View at Google Scholar · View at Scopus
  56. S. Ishii, N. Weintraub, and J. R. Mervis, “Apathy: a Common Psychiatric Syndrome in the Elderly,” Journal of the American Medical Directors Association, vol. 10, no. 6, pp. 381–393, 2009. View at Publisher · View at Google Scholar · View at Scopus
  57. L. Volicer, D. H. M. Frijters, and J. T. van der Steen, “Apathy and weight loss in nursing home residents: longitudinal study,” Journal of the American Medical Directors Association, vol. 14, no. 6, pp. 417–420, 2013. View at Publisher · View at Google Scholar · View at Scopus
  58. R. Leontjevas, S. Teerenstra, M. Smalbrugge et al., “More insight into the concept of apathy: a multidisciplinary depression management program has different effects on depressive symptoms and apathy in nursing homes,” International Psychogeriatrics, vol. 25, pp. 1941–1952, 2013. View at Google Scholar
  59. N. Wongpakaran, R. van Reekum, T. Wongpakaran, and D. Clarke, “Selective serotonin reuptake inhibitor use associates with apathy among depressed elderly: a case-control study,” Annals of General Psychiatry, vol. 6, article 7, 2007. View at Publisher · View at Google Scholar · View at Scopus
  60. S. Ishii, J. E. Streim, and D. Saliba, “A conceptual framework for rejection of care behaviors: review of literature and analysis of role of dementia severity,” Journal of the American Medical Directors Association, vol. 13, no. 1, pp. 11–23, 2012. View at Publisher · View at Google Scholar · View at Scopus
  61. R. S. Marin, R. C. Biedrzycki, and S. Firinciogullari, “Reliability and validity of the apathy evaluation scale,” Psychiatry Research, vol. 38, no. 2, pp. 143–162, 1991. View at Publisher · View at Google Scholar · View at Scopus
  62. U. Lueken, U. Seidl, L. Valker, E. Schweiger, A. Kruse, and J. Schroeder, “Development of a short version of the apathy evaluation scale specifically adapted for demented nursing home residents,” The American Journal of Geriatric Psychiatry, vol. 15, no. 5, pp. 376–385, 2007. View at Publisher · View at Google Scholar · View at Scopus
  63. E. K. Mahoney, A. C. Hurley, L. Volicer et al., “Development and testing of the resistiveness to care scale,” Research in Nursing & Health, vol. 22, pp. 27–38, 1999. View at Google Scholar
  64. M. L. Campbell, “Psychometric testing of a respiratory distress observation scale,” Journal of Palliative Medicine, vol. 11, no. 1, pp. 44–50, 2008. View at Publisher · View at Google Scholar · View at Scopus
  65. S. L. Mitchell, J. M. Teno, D. K. Kiely et al., “The clinical course of advanced dementia,” The New England Journal of Medicine, vol. 361, no. 16, pp. 1529–1538, 2009. View at Publisher · View at Google Scholar · View at Scopus
  66. L. Volicer, A. C. Hurley, and Z. V. Blasi, “Characteristics of dementia end-of-life care across care settings,” American Journal of Hospice and Palliative Medicine, vol. 20, no. 3, pp. 191–200, 2003. View at Publisher · View at Google Scholar · View at Scopus
  67. M. C. van Soest-Poortvliet, J. T. van der Steen, S. Zimmerman et al., “Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia,” Quality of Life Research, vol. 21, no. 4, pp. 671–684, 2012. View at Publisher · View at Google Scholar · View at Scopus
  68. L. Volicer, A. C. Hurley, and Z. V. Blasi, “Scales for evaluation of end-of-life care in dementia,” Alzheimer Disease and Associated Disorders, vol. 15, no. 4, pp. 194–200, 2001. View at Publisher · View at Google Scholar · View at Scopus
  69. B. Z. Aminoff, E. Purits, S. Noy, and A. Adunsky, “Measuring the suffering of end-stage dementia: reliability and validity of the mini-suffering state examination,” Archives of Gerontology and Geriatrics, vol. 38, no. 2, pp. 123–130, 2004. View at Publisher · View at Google Scholar · View at Scopus
  70. S. J. Smith, “Providing palliative care for the terminal Alzheimer patient,” in Hospice Care for Patients with Advanced Progressive Dementia, L. Volicer and A. Hurley, Eds., pp. 247–256, Springer, New York, NY, USA, 1998. View at Google Scholar
  71. D. K. Kiely, L. Volicer, J. Teno, R. N. Jones, H. G. Prigerson, and S. L. Mitchell, “The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia,” Alzheimer Disease and Associated Disorders, vol. 20, no. 3, pp. 176–181, 2006. View at Publisher · View at Google Scholar · View at Scopus
  72. A. A. Skolnick, “Medicaring project to demonstrate, evaluate innovative end-of-life program for chronically III,” The Journal of the American Medical Association, vol. 279, no. 19, pp. 1511–1512, 1998. View at Publisher · View at Google Scholar · View at Scopus
  73. M. J. Barry, E. Walker-Corkery, Y. Chang, L. T. Tyll, D. C. Cherkin, and F. J. Fowler, “Measurement of overall and disease-specific health status: does the order of questionnaires make a difference?” Journal of Health Services Research and Policy, vol. 1, no. 1, pp. 20–27, 1996. View at Google Scholar · View at Scopus
  74. A. Jordan, C. Regnard, J. T. O'Brien, and J. C. Hughes, “Pain and distress in advanced dementia: choosing the right tools for the job,” Palliative Medicine, vol. 26, no. 7, pp. 873–878, 2012. View at Publisher · View at Google Scholar · View at Scopus
  75. M. L. De Roo, J. T. van der Steen, F. Galindo-Garre et al., “When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings,” Palliative Medicine, vol. 28, no. 3, pp. 210–219, 2014. View at Publisher · View at Google Scholar