Increasing life span and lack of medication for prevention or treatment of progressive dementias will significantly increase the number of individuals with advanced dementia worldwide. Providing optimal care for them will stretch health care resources and will require evaluation of different treatment strategies. This paper is presenting measures that may be used in this patient population. Evaluation of global goals of palliative care may include measuring quality of life by QUALID scale, comfort by DS-DAT scale, and engagement by MPES scale. Symptom control may be achieved by measuring pain by PAINAD or PACSLAC scales, by evaluating behavioral symptoms and their management (agitation by SOAPD scale, apathy by AES scale and rejection of care by RTC-DAT scale), and by monitoring patients for dyspnea using RDOS scale. Outcomes of palliative care at the end of life may be evaluated by EOLD-CAD scale and by determining family satisfaction with care (EOLD-SWC). Items included in these scales, psychometric properties, and research use of these scales are described. It is hoped that information in this paper will stimulate research interest in this important area. 1. Background The authors of this review both enjoy international collaboration and started working together almost 20 years ago when they discovered that they have a common concern for persons with advanced dementia. The collaboration started by sharing scales that can be used for research in population. Initially, U.S. discomfort and dementia staging scales were used in Dutch studies that investigated treatment of pneumonia [1–3]. The Dutch translation of these scales was evaluated and additional work assessed a cut off for severe dementia [4] and the staging of the items [5] and the Dutch investigators also evaluated a new U.S. set of scales for dementia at the end of life [6]. Recent work developed also from sharing newly collected [3] and existing data [7]—the Dutch author analyzing the U.S. data and vice versa. Where previous work focused on pneumonia, newer work was on modifiable factors that are increasing risk of behavioral symptoms of dementia [7]. The common theme in this research was concern for quality of life of person with advanced dementia that could be supported by palliative care, as summarized in recent work defining domains and recommendations for palliative in dementia [8]. The authors share a belief that barriers to performing high-quality research in this population can be overcome, and one important barrier was the lack of outcome measures with optimal psychometric properties
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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[19]
T. P. Ettema, R. Dr？es, 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.
[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.
[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.
[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.
[23]
K. Y. Kolcaba, “A taxonomic structure for the concept comfort,” Image, vol. 23, no. 4, pp. 237–240, 1991.
[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.
[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.
[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).
[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.
[28]
C. J. Camp, “Origins of montessori programming for dementia,” Non-Pharmacologic Therapies in Dementia, vol. 1, no. 2, pp. 163–174, 2010.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[47]
L. Volicer, “What is NPI item “agitation/Aggression” really measuring?” American Journal of Geriatric Psychiatry, vol. 19, no. 12, p. 1046, 2011.
[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.
[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.
[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.
[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.
[52]
E. Kong, “Agitation in dementia: concept clarification,” Journal of Advanced Nursing, vol. 52, no. 5, pp. 526–536, 2005.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[64]
M. L. Campbell, “Psychometric testing of a respiratory distress observation scale,” Journal of Palliative Medicine, vol. 11, no. 1, pp. 44–50, 2008.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
[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.
