The Gerontologist, Vol 39, Issue 1 25-35, Copyright © 1999 by The Gerontological Society of America

ARTICLES

Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL)

M Brod, AL Stewart, L Sands and P Walton
Center for Clinical and Aging Services Research, Goldman Institute on Aging, San Francisco, CA 94118, USA. [email protected]

Direct assessment of quality of life (QoL) of persons with dementia has largely been ignored due to logistical, conceptual and practical issues. This article presents a disease-specific conceptual framework of QoL for dementia. Based on this conceptualization, a 29-item instrument designed to assess QoL by direct interview with dementia patients was developed and tested on 99 participants. The data show that the instrument is reliable and shows evidence of validity. Nearly all participants (96%) were able to respond to questions appropriately. Thus, persons with mild to moderate dementia can be considered good informants of their own subjective states, paving the way to consider patient responses rather than proxy measures as the gold standard for assessing QoL for persons with dementia.

This article has been cited by other articles:

				P. Housen, G. R. Shannon, B. Simon, M. O. Edelen, M. P. Cadogan, L. Sohn, M. Jones, J. L. Buchanan, and D. Saliba What the Resident Meant to Say: Use of Cognitive Interviewing Techniques to Develop Questionnaires for Nursing Home Residents Gerontologist, April 1, 2008; 48(2): 158 - 169. [Abstract] [Full Text] [PDF]

				R. J. F. Melis, M. I. J. van Eijken, S. Teerenstra, T. van Achterberg, S. G. Parker, G. F. Borm, E. H. van de Lisdonk, M. Wensing, and M. G. M. O. Rikkert Multidimensional Geriatric Assessment: Back to the Future A Randomized Study of a Multidisciplinary Program to Intervene on Geriatric Syndromes in Vulnerable Older People Who Live at Home (Dutch EASYcare Study) J. Gerontol. A Biol. Sci. Med. Sci., March 1, 2008; 63(3): 283 - 290. [Abstract] [Full Text] [PDF]

				R. E. Ready and B. R. Ott Integrating Patient and Informant Reports on the Cornell-Brown Quality-of-Life Scale American Journal of Alzheimer's Disease and Other Dementias, January 1, 2008; 22(6): 528 - 534. [Abstract] [PDF]

				R. Trigg, S. M. Skevington, and R. W. Jones How Can We Best Assess the Quality of Life of People With Dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) Gerontologist, December 1, 2007; 47(6): 789 - 797. [Abstract] [Full Text] [PDF]

				R. Trigg, R. W. Jones, and S. M. Skevington Can people with mild to moderate dementia provide reliable answers about their quality of life? Age Ageing, November 1, 2007; 36(6): 663 - 669. [Abstract] [Full Text] [PDF]

				M. J. L. Graff, M. J. M. Vernooij-Dassen, M. Thijssen, J. Dekker, W. H. L. Hoefnagels, and M. G. M. OldeRikkert Effects of Community Occupational Therapy on Quality of Life, Mood, and Health Status in Dementia Patients and Their Caregivers: A Randomized Controlled Trial J. Gerontol. A Biol. Sci. Med. Sci., September 1, 2007; 62(9): 1002 - 1009. [Abstract] [Full Text] [PDF]

				D. L. Gerritsen, T. P. Ettema, E. Boelens, J. Bos, F. Hoogeveen, J. de Lange, L. Meihuizen, C. J. M. Scholzel-Dorenbos, and R.-M. Droes Quality of Life in Dementia: Do Professional Caregivers Focus on the Significant Domains? American Journal of Alzheimer's Disease and Other Dementias, July 1, 2007; 22(3): 176 - 183. [Abstract] [PDF]

				C. Owsley, G. McGwin, K. Scilley, G. C. Meek, A. Dyer, and D. Seker The Visual Status of Older Persons Residing in Nursing Homes Arch Ophthalmol, July 1, 2007; 125(7): 925 - 930. [Abstract] [Full Text] [PDF]

				D. O'Connor, A. Phinney, A. Smith, J. Small, B. Purves, J. Perry, E. Drance, M. Donnelly, H. Chaudhury, and L. Beattie Personhood in dementia care: Developing a research agenda for broadening the vision Dementia, February 1, 2007; 6(1): 121 - 142. [Abstract] [PDF]

				R. Schulz, R. S. Hebert, M. A. Dew, S. L. Brown, M. F. Scheier, S. R. Beach, S. J. Czaja, L. M. Martire, D. Coon, K. M. Langa, et al. Patient Suffering and Caregiver Compassion: New Opportunities for Research, Practice, and Policy Gerontologist, February 1, 2007; 47(1): 4 - 13. [Abstract] [Full Text] [PDF]

				B. Resnick, A. L. Gruber-Baldini, I. Pretzer-Aboff, E. Galik, V. C. Buie, K. Russ, and S. Zimmerman Reliability and Validity of the Evaluation to Sign Consent Measure Gerontologist, February 1, 2007; 47(1): 69 - 77. [Abstract] [Full Text] [PDF]

				J. Tyrrell, N. Genin, and M. Myslinski Freedom of choice and decision-making in health and social care: Views of older patients with early-stage dementia and their carers Dementia, November 1, 2006; 5(4): 479 - 502. [Abstract] [PDF]

				M. J.L. Graff, M. J.M. Vernooij-Dassen, J. Zajec, M. G.M. Olde-Rikkert, W. H.L. Hoefnagels, and J. Dekker How can occupational therapy improve the daily performance and communication of an older patient with dementia and his primary caregiver?: A case study Dementia, November 1, 2006; 5(4): 503 - 532. [Abstract] [PDF]

				R.-M. Droes, E. C.C. Boelens-Van Der Knoop, J. Bos, L. Meihuizen, T. P. Ettema, D. L. Gerritsen, F. Hoogeveen, J. De Lange, and C. J.M. SchoLzel-Dorenbos Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature Dementia, November 1, 2006; 5(4): 533 - 558. [Abstract] [PDF]

				R. E. Ready, B. R. Ott, and J. Grace Insight and cognitive impairment: effects on quality-of-life reports from mild cognitive impairment and Alzheimer's disease patients. American Journal of Alzheimer's Disease and Other Dementias, August 1, 2006; 21(4): 242 - 248. [Abstract] [PDF]

				J. HOE, G. HANCOCK, G. LIVINGSTON, and M. ORRELL Quality of life of people with dementia in residential care homes The British Journal of Psychiatry, May 1, 2006; 188(5): 460 - 464. [Abstract] [Full Text] [PDF]

				S Banerjee, S C Smith, D L Lamping, R H Harwood, B Foley, P Smith, J Murray, M Prince, E Levin, A Mann, et al. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia J. Neurol. Neurosurg. Psychiatry, February 1, 2006; 77(2): 146 - 148. [Abstract] [Full Text] [PDF]

				S. E. Fisher, L. D. Burgio, B. E. Thorn, and J. M. Hardin Obtaining self-report data from cognitively impaired elders: methodological issues and clinical implications for nursing home pain assessment. Gerontologist, February 1, 2006; 46(1): 81 - 88. [Abstract] [Full Text] [PDF]

				S. C. Burgener, P. Twigg, and A. Popovich Measuring psychological well-being in cognitively impaired persons Dementia, November 1, 2005; 4(4): 463 - 485. [Abstract] [PDF]

				R. L. Kane, R. A. Kane, B. Bershadsky, H. Degenholtz, K. Kling, A. Totten, and K. Jung Proxy Sources for Information on Nursing Home Residents' Quality of Life J. Gerontol. B. Psychol. Sci. Soc. Sci., November 1, 2005; 60(6): S318 - S325. [Abstract] [Full Text] [PDF]

				Q. M. Samus, A. Rosenblatt, C. Steele, A. Baker, M. Harper, J. Brandt, L. Mayer, P. V. Rabins, and C. G. Lyketsos The Association of Neuropsychiatric Symptoms and Environment With Quality of Life in Assisted Living Residents With Dementia Gerontologist, October 1, 2005; 45(suppl_1): 19 - 26. [Abstract] [Full Text] [PDF]

				P. Edelman, B. R. Fulton, D. Kuhn, and C.-H. Chang A Comparison of Three Methods of Measuring Dementia-Specific Quality of Life: Perspectives of Residents, Staff, and Observers Gerontologist, October 1, 2005; 45(suppl_1): 27 - 36. [Abstract] [Full Text] [PDF]

				P. D. Sloane, S. Zimmerman, C. S. Williams, P. S. Reed, K. S. Gill, and J. S. Preisser Evaluating the Quality of Life of Long-Term Care Residents With Dementia Gerontologist, October 1, 2005; 45(suppl_1): 37 - 49. [Abstract] [Full Text] [PDF]

				S. Zimmerman, P. D. Sloane, C. S. Williams, P. S. Reed, J. S. Preisser, J. K. Eckert, M. Boustani, and D. Dobbs Dementia Care and Quality of Life in Assisted Living and Nursing Homes Gerontologist, October 1, 2005; 45(suppl_1): 133 - 146. [Abstract] [Full Text] [PDF]

				R. Overshott and A. Burns Cholinesterase inhibitors: in search of cholinergic deficits Advan. Psychiatr. Treat., September 1, 2005; 11(5): 321 - 324. [Full Text] [PDF]

				I.-S. Shin, M. Carter, D. Masterman, L. Fairbanks, and J. L. Cummings Neuropsychiatric Symptoms and Quality of Life in Alzheimer Disease Am J Geriatr Psychiatry, June 1, 2005; 13(6): 469 - 474. [Abstract] [Full Text] [PDF]

				B. D. James, S. X. Xie, and J. H.T. Karlawish How Do Patients With Alzheimer Disease Rate Their Overall Quality of Life? Am J Geriatr Psychiatry, June 1, 2005; 13(6): 484 - 490. [Abstract] [Full Text] [PDF]

				C. J. Whitlatch, L. F. Feinberg, and S. Tucke Accuracy and consistency of responses from persons with cognitive impairment Dementia, June 1, 2005; 4(2): 171 - 183. [Abstract] [PDF]

				D. Scott and M. Donnelly The early identification of cognitive impairment: A stakeholder evaluation of a 'Dementia Awareness Service'in Belfast Dementia, June 1, 2005; 4(2): 207 - 232. [Abstract] [PDF]

				J. E. Gaugler, R. L. Kane, R. A. Kane, T. Clay, and R. C. Newcomer The Effects of Duration of Caregiving on Institutionalization Gerontologist, February 1, 2005; 45(1): 78 - 89. [Abstract] [Full Text] [PDF]

				I. Hagen, T. Holthe, J. Gilliard, P. Topo, S. Cahill, E. Begley, K. Jones, P. Duff, J. Macijauskiene, A. Budraitiene, et al. Development of a Protocol for the Assessment of Assistive Aids for People with Dementia Dementia, October 1, 2004; 3(3): 281 - 296. [Abstract] [PDF]

				S. Cahill, E. Begley, P. Topo, K. Saarikalle, J. Macijauskiene, A. Budraitiene, I. Hagen, T. Holthe, and K. Jones 'I Know Where this is Going and I Know it won't Go Back': Hearing the Individual's Voice in Dementia Quality of Life Assessments Dementia, October 1, 2004; 3(3): 313 - 330. [Abstract] [PDF]

				L. P. Sands, P. Ferreira, A. L. Stewart, M. Brod, and K. Yaffe What Explains Differences Between Dementia Patients' and Their Caregivers' Ratings of Patients' Quality of Life? Am J Geriatr Psychiatry, June 1, 2004; 12(3): 272 - 280. [Abstract] [Full Text] [PDF]

				S. H. Zarit, E. E. Femia, J. Watson, L. Rice-Oeschger, and B. Kakos Memory Club: A Group Intervention for People With Early-Stage Dementia and Their Care Partners Gerontologist, April 1, 2004; 44(2): 262 - 269. [Abstract] [Full Text] [PDF]

				T. Katsuno Personal Spirituality of Persons with Early-Stage Dementia: Is it Related to Perceived Quality of Life? Dementia, October 1, 2003; 2(3): 315 - 335. [Abstract] [PDF]

				K. C. Hendry and D. H. Douglas Promoting Quality of Life for Clients Diagnosed with Dementia Journal of the American Psychiatric Nurses Association, June 1, 2003; 9(3): 96 - 102. [Abstract] [PDF]

				S. S. Travis, M. A. Bernard, W. J. McAuley, M. Thornton, and T. Kole Development of the Family Caregiver Medication Administration Hassles Scale Gerontologist, June 1, 2003; 43(3): 360 - 368. [Abstract] [Full Text] [PDF]

				R. A. Kane Definition, Measurement, and Correlates of Quality of Life in Nursing Homes: Toward a Reasonable Practice, Research, and Policy Agenda Gerontologist, April 1, 2003; 43(90002): 28 - 36. [Abstract] [Full Text] [PDF]

				R. A. Kane, K. C. Kling, B. Bershadsky, R. L. Kane, K. Giles, H. B. Degenholtz, J. Liu, and L. J. Cutler Quality of Life Measures for Nursing Home Residents J. Gerontol. A Biol. Sci. Med. Sci., March 1, 2003; 58(3): M240 - 248. [Abstract] [Full Text] [PDF]

				D. Kuhn, R. E. Kasayka, and C. Lechner Behavioral observations and quality of life among persons with dementia in 10 assisted living facilities American Journal of Alzheimer's Disease and Other Dementias, September 1, 2002; 17(5): 291 - 298. [Abstract] [PDF]

				M. D. Sullivan The Illusion of Patient Choice in End-of-Life Decisions Am J Geriatr Psychiatry, August 1, 2002; 10(4): 365 - 372. [Abstract] [Full Text] [PDF]

				M. Nolan, T. Ryan, P. Enderby, and D. Reid Towards a More Inclusive Vision of Dementia Care Practice and Research Dementia, June 1, 2002; 1(2): 193 - 211. [Abstract] [PDF]

				R. G. Logsdon, L. E. Gibbons, S. M. McCurry, and L. Teri Assessing Quality of Life in Older Adults With Cognitive Impairment Psychosom Med, May 1, 2002; 64(3): 510 - 519. [Abstract] [Full Text] [PDF]

				L. F. Feinberg and C. J. Whitlatch Are Persons With Cognitive Impairment Able to State Consistent Choices? Gerontologist, June 1, 2001; 41(3): 374 - 382. [Abstract] [Full Text] [PDF]