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Chapter 5 - Quality of Life of Persons with Dementia

Different Disciplinary Perspectives

Published online by Cambridge University Press:  26 May 2022

Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
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Summary

To evaluate psychological and psychosocial interventions or to decide whether it is cost-effective to reimburse specific therapies or medicines, one needs a measure of the quality of life of the persons with dementia. A large battery of specific dementia scales is available that can be used to evaluate psychological and psychosocial interventions, while cost-effectiveness is usually analysed with generic QALY-type health measures. The choice between these various measures cannot be made only on statistical or technical grounds because it has crucial ethical implications. Different measures of QoL reflect different fundamental perspectives on what makes a good life.

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Dementia and Society , pp. 81 - 104
Publisher: Cambridge University Press
Print publication year: 2022

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References

Parfit, D. Reasons and Persons. Oxford, Clarendon, 1984.Google Scholar
Decancq, K, Fleurbaey, M, Schokkaert, E. Inequality, income and well-being. In Atkinson, A, Bourguignon, F, eds. Handbook of Income Distribution, Vol. 2A. New York, Elsevier, 2015; 67140.Google Scholar
Hurka, T. Objective goods. In Adler, M, Fleurbaey, M, eds. Oxford Handbook of Well-Being and Public Policy. Oxford, Oxford University Press, 2016; 379402.Google Scholar
Sen, A. On Ethics and Economics. Oxford, Oxford University Press, 1987.Google Scholar
Robeyns, I. Wellbeing, Freedom and Social Justice. Cambridge, Open Book, 2017.Google Scholar
Nussbaum, M. Women and Human Development: The Capabilities Approach. Cambridge, Cambridge University Press, 2000.CrossRefGoogle Scholar
Hausman, D. Valuing Health: Well-Being, Freedom, and Suffering. Oxford, Oxford University Press, 2015.Google Scholar
Huber, M, Knottnerus, JA, Green, L, Van der Horst, H, Jadad, A, et al. How should we define health? British Medical Journal 2011; 343: d4163.CrossRefGoogle ScholarPubMed
Dröes, RM, INTERDEM Social Health Taskforce. Social health and dementia: A European consensus on the operationalization of the concept and directions for research and practice. Aging and Mental Health 2017; 21: 417.CrossRefGoogle ScholarPubMed
Thorgrimson, L, Selwood, A, Spector, A, Royan, L, Madariaga Lopez, M, et al. Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer’s Disease (QOL-AD). Alzheimer’s Disease & Associated Disorders 2003; 17, 201–8.Google Scholar
Logsdon, RG, Gibbons, LE, McCurry, SM, Teri, L. Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine 2002 May–Jun; 64(3): 510–19.CrossRefGoogle ScholarPubMed
Moniz-Cook, E, Vernooij-Dassen, M, Woods, R, Verhey, F, Chattat, R, et al. For the Interdem group A European Consensus on outcome measures for psychosocial intervention research in dementia care. Aging & Mental Health 2008; 12(1): 1429.CrossRefGoogle Scholar
Sheehan, B. Assessment scales in dementia. Therapeutic Advances in Neurological Disorders 2005; 5(6): 349–58.Google Scholar
Bowling, A, Rowe, G, Adams, S, Sands, P, Samsi, K, et al. Quality of life in dementia: A systematically conducted narrative review of dementia-specific measurement scales. Aging & Mental Health 2015; 19(1): 1331.CrossRefGoogle ScholarPubMed
Nehen, H-G, Hermann, DM. Supporting dementia patients and their caregivers in daily life challenges: Review of physical, cognitive and psychosocial intervention studies. European Journal of Neurology 2015; 22(2): 246–e20.CrossRefGoogle ScholarPubMed
Dichter, MN, Schwab, CG, Meyer, G, Bartholomeyczik, S, Halek, M. Linguistic validation and reliability properties are weak investigated of most dementia-specific quality of life measurements: A systematic review. Journal of Clinical Epidemiology 2016 Feb; 70: 233–45.CrossRefGoogle ScholarPubMed
Missotten, P, Dupuis, G, Adam, S. Dementia-specific quality of life instruments: A conceptual analysis. International Psychogeriatrics 2016; 28(8): 1245–62.CrossRefGoogle ScholarPubMed
Hoe, J, Hancock, G, Livingston, G, Woods, B, Challis, D, Orrell, M. Changes in the quality of life of people with dementia living in care homes. Alzheimer Disease and Associated Disorders 2009; 23(3): 285–90.CrossRefGoogle ScholarPubMed
Vogel, A, Bhattacharya, S, Waldorff, FB, Waldemar, G. Proxy-rated quality of life in Alzheimer’s disease: a three-year longitudinal study. International Psychogeriatrics 2012 Jan; 24(1): 82–9.CrossRefGoogle ScholarPubMed
Orrell, M, Aguirre, E, Spector, A, Hoare, Z, Woods, RT, et al. Maintenance cognitive stimulation therapy for dementia: Single-blind, multicentre, pragmatic randomised controlled trial. British Journal of Psychiatry 2014 Jun; 204(6): 454–61.CrossRefGoogle ScholarPubMed
Bosboom, PR, Almeida, OP. Do changes in specific cognitive functions predict changes in health-related quality of life in people with Alzheimer’s disease? International Journal of Geriatric Psychiatry 2014 Jul; 29(7): 694703.CrossRefGoogle ScholarPubMed
Edelman, P, Fulton, BR, Kuhn, D, Chang, CH. A comparison of three methods of measuring dementia-specific quality of life: Perspectives of residents, staff, and observers. Gerontologist 2005; 45 Spec No. 1 (1):27e36.CrossRefGoogle ScholarPubMed
Brod, M, Stewart, AL, Sands, L, Walton, P. Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). Gerontologist 1999 Feb; 39(1): 2535.CrossRefGoogle Scholar
Moyle, W, Gracia, N, Murfield, JE, Griffiths, SG, Venturato, L. Assessing quality of life of older people with dementia in long-term care: A comparison of two self-report measures. Journal of Clinical Nursing 2012 ; 21(11–12): 1632–40.Google ScholarPubMed
Wolak-Thierry, A, Novella, JL, Barbe, C, Morrone, I, Mahmoudi, R, Jolly, D. Comparison of QOL-AD and DQoL in elderly with Alzheimer’s disease. Aging and Mental Health 2015; 19(3): 274–8.CrossRefGoogle ScholarPubMed
Graff, MJ, Vernooij-Dassen, MJ, Thijssen, M, Dekker, J, Hoefnagels, WH, Olderikkert, MG. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. Journals of Gerontology, Series A: Biological Sciences and Medical Sciences 2007; 62(9): 1002–9.CrossRefGoogle ScholarPubMed
Te Boekhorst, S, Depla, MF, De Lange, J, Pot, AM, Eefsting, JA. The effects of group living homes on older people with dementia: A comparison with traditional nursing home care. International Journal of Geriatric Psychiatry 2009 Sep; 24(9): 970–8.CrossRefGoogle ScholarPubMed
Brooker, D, Evans, SC, Evans, SB, Bray, J, Saibene, FL, et al. Evaluation of the implementation of the Meeting Centres Support Program in Italy, Poland, and the UK: Exploration of the effects on people with dementia. International Journal of Geriatric Psychiatry 2018 Jul; 33(7): 883–92.CrossRefGoogle ScholarPubMed
Trigg, R, Skevington, SM, Jones, RW. 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 2007; 47: 789–97.CrossRefGoogle Scholar
Trigg, R, Jones, RW, Skevington, SM. Can people with mild to moderate dementia provide reliable answers about their quality of life? Age & Ageing 2007; 36: 663–9.CrossRefGoogle ScholarPubMed
Trigg, R, Watts, S, Jones, R, Tod, A. Predictors of quality of life ratings from persons with dementia: The role of insight. International Journal of Geriatric Psychiatry 2011 Jan; 26(1): 8391.CrossRefGoogle ScholarPubMed
Trigg, R, Jones, R, Lacey, L, Niecko, T. Relationship between patient self-assessed and proxy-assessed quality of life (QoL) and patient dependence on others as illness progresses in Alzheimer’s disease: Results from the Dependence in Alzheimer’s Disease in England (DADE) study. Alzheimer’s and Dementia 2012; 8(4): Suppl., P250P251.CrossRefGoogle Scholar
Trigg, R, Jones, RW, Knapp, M, King, D, Lacey, LA, DADE-2 Investigator Groups. The relationship between changes in quality of life outcomes and progression of Alzheimer’s disease: Results from the dependence in AD in England 2 longitudinal study. International Journal of Geriatric Psychiatry 2015; 30(4): 400–8.CrossRefGoogle ScholarPubMed
Smith, SC, Lamping, DL, Banerjee, S, Harwood, RH, Foley, B, et al. Measurement of health-related quality of life for people with dementia: Development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment 2005; 9(193): IIIIV.CrossRefGoogle Scholar
Smith, SC, Murray, J, Banerjee, S, Foley, B, Cook, JC, Lamping, DL, et al. What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers. International Journal of Geriatric Psychiatry 2005; 20: 889–95.CrossRefGoogle ScholarPubMed
Banerjee, S, Smith, SC, Lamping, DL, et al. Quality of life in dementia: More than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery and Psychiatry 2006; 77: 146–8.CrossRefGoogle ScholarPubMed
Voigt-Radloff, S, Leonhart, R, Schützwohl, M, Jurjanz, L, Reuster, T, et al. Dementia quality of life instrument: Construct and concurrent validity in patients with mild to moderate dementia. European Journal of Neurology 2012; 19(3): 376–84.CrossRefGoogle ScholarPubMed
Mulhern, B, Rowen, D, Brazier, J, Smith, S, Romeo, R, et al. Development of DEMQOL-U and DEMQOL-PROXY-U: Generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technology Assessment 2013; 17: 5.CrossRefGoogle ScholarPubMed
McGee, HM, O’Boyle, CA, Hickey, A et al. Assessing the quality of life of the individual: The SEIQoL with a healthy and a gastroenterology unit population. Psychological Medicine 1991; 21: 749–59.CrossRefGoogle Scholar
Coen, R, O’Mahony, D, O’Boyle, C, et al. Measuring the quality of life of dementia patients using the Schedule for the Evaluation of Individual Quality of Life. Irish Journal of Psychology 1993; 14: 154–63.CrossRefGoogle Scholar
Schölzel-Dorenbos, CJ [Measurement of quality of life in patients with dementia of Alzheimer type and their caregivers: Schedule for the Evaluation of Individual Quality of Life (SEIQoL)]. Tijdschrift voor Gerontologie en Geriatrie 2000 Feb; 31(1): 23–6.Google Scholar
Hickey, AM, Bury, G, O’Boyle, CA, Bradley, F, O’Kelly, FD, Shannon, W. A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. British Medical Journal 1996 Jul 6; 313(7048): 2933.CrossRefGoogle Scholar
Schölzel-Dorenbos, CJM, Ettema, TP, Boelens-Van der Knoop, ECC, Bos, J, Gerritsen, DL, Hoogeveen, F, et al. Evaluating the outcome of psychosocial and pharmacological interventions on quality of life of people with dementia: When to use what QoL instrument? International Journal of Geriatric Psychiatry 2007 ; 22: 511–19.Google Scholar
Weiner, MF, Martin-Cook, K, Svetlik, DA, Saine, K, Foster, B, Fontain, CS. The quality of life in late-stage dementia (QUALID) scale. Journal of the American Medical Directors’ Association 2000; 1: 114–16.Google ScholarPubMed
Schalkwijk, D, Verlare, LR, Muller, MT, Knol, DL, Van der Steen, JT. [Measuring quality of life in nursing home residents with severe dementia: Psychometric properties of the QUALID scale] [Article in Dutch]. Tijdschrift voor Gerontologie en Geriatrie 2009 Oct; 40(5): 184–92.Google Scholar
Perales, J, Cosco, TD, Stephan, B, Haro, JM, Brayne, C. Health-related quality-of-life instruments for Alzheimer’s disease and mixed dementia. International Psychogeriatrics 2013 ; 25(5): 691706.CrossRefGoogle ScholarPubMed
Ettema, TP, Dröes, RM, De Lange, J, Ooms, ME, Mellenbergh, GJ, Ribbe, MW. The QUALIDEM: Development and evaluation of a dementia specific quality of life instrument. Part I: scalability, reliability and internal structure. International Journal of Geriatric Psychiatry 2007; 22(6): 549–56.Google Scholar
Ettema, TP, Dröes, RM, De Lange, J, Ooms, ME, Mellenbergh, GJ, Ribbe, MW. The QUALIDEM: Development and evaluation of a dementia specific Quality of Life instrument. Part II: Validation. International Journal of Geriatric Psychiatry 2007; 22(5): 424–30.Google Scholar
Gräske, J, Verbeek, H, Gellert, P, Fischer, T, Kuhlmey, A, Wolf-Ostermann, K. How to measure quality of life in shared-housing arrangements? A comparison of dementia-specific instruments. Quality of Life Research 2014; 23(2): 549–59.CrossRefGoogle ScholarPubMed
Dichter, MN, Dortmann, O, Halek, M, Meyer, G, Holle, D, et al. Scalability and internal consistency of the German version of the dementia-specific quality of life instrument QUALIDEM in nursing homes: A secondary data analysis. Health and Quality of Life Outcomes 2013 Jun; 5(11): 91.CrossRefGoogle Scholar
Van de Ven-Vakhteeva, J, Bor, H, Wetzels, RB, Koopmans, RT, Zuidema, SU. The impact of antipsychotics and neuropsychiatric symptoms on the quality of life of people with dementia living in nursing homes. International Journal of Geriatric Psychiatry 2013 May; 28(5): 530–8.CrossRefGoogle ScholarPubMed
Oudman, E, Veurink, B. Quality of life in nursing home residents with advanced dementia: A 2-year follow-up. Psychogeriatrics 2014 Dec; 14(4): 235–40.CrossRefGoogle ScholarPubMed
Aspden, T, Bradshaw, SA, Playford, ED, Riazi, A. Quality-of-life measures for use within care homes: A systematic review of their measurement properties. Age and Ageing 2014; 43(5): 596603.CrossRefGoogle ScholarPubMed
Dichter, MN, Schwab, CG, Meyer, G, Bartholomeyczik, S, Dortmann, O, Halek, M. Measuring the quality of life in mild to very severe dementia: Testing the inter-rater and intra-rater reliability of the German version of the QUALIDEM. International Psychogeriatrics 2014; 26(5): 825–36.CrossRefGoogle ScholarPubMed
Bouman, AIE, Ettema, TP, Wetzels, RB, Van Beek, APA, De Lange, J, Dröes, RM. Evaluation of QUALIDEM: A dementia‐specific quality of life instrument for persons with dementia in residential settings. Scalability and reliability of subscales in four Dutch field surveys. International Journal of Geriatric Psychiatry 2011; 26(7): 711–22.CrossRefGoogle ScholarPubMed
Hurley, AC, Volicer, B, Hanrahan, PA, Houde, S, Volicer, L. Assessment of discomfort in advanced Alzheimer patients. Research in Nursing & Health 1992; 15, 369–77.CrossRefGoogle ScholarPubMed
Volicer, L, Hurley, A, Canberg, L. A model of psychological well-being in advanced dementia. Journal of Mental Health & Aging 1999 ; 5: 8394.Google Scholar
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. Scandinavian Journal of Infectious Diseases 2009; 41(2): 143–51.CrossRefGoogle ScholarPubMed
Van der Steen, JT, Di Giulio, P, Giunco, F, Monti, M, Gentile, S, et al. End of Life Observatory. Prospective Study on Dementia Patients Care (EoLO-PSODEC) Research Group. Pneumonia in nursing home patients with advanced dementia: Decisions, intravenous rehydration therapy, and discomfort. American Journal of Hospice and Palliative Care 2018 Mar; 35(3): 423–30.CrossRefGoogle Scholar
Klapwijk, MS, Caljouw, MA, Van Soest-Poortvliet, MC, Van der Steen, JT, Achterberg, WP. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatrics 2014 Sep 2; 14: 99.CrossRefGoogle Scholar
Martyr, A, Nelis, S, Quinn, C, Wu, Y, Lamont, R, et al. Living well with dementia: A systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia. Psychological Medicine 2018; 48(13): 2130–9.CrossRefGoogle ScholarPubMed
Edwards, HB, Ijaz, S, Whiting, PF, et al. Quality of family relationships and outcomes of dementia: A systematic review, BMJ Open 2018; 8: e015538. doi: 10.1136/bmjopen-2016-015538CrossRefGoogle ScholarPubMed
Sikkes Sietske, AM, Tang, Y, Jutten, RJ, Wesselman, L, Turkstra, LS, et al. Toward a theory‐based specification of non‐pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations. Alzheimer’s & Dementia (2020). https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.12188Google Scholar
Kim, SK, Park, M. Effectiveness of person-centered care on people with dementia: A systematic review and meta-analysis. Clinical Interventions in Aging 2017; 12: 381–97. doi: 10.2147/CIA.S117637CrossRefGoogle ScholarPubMed
Poon, E. A systematic review and meta-analysis of dyadic psychological interventions for BPSD, quality of life and/or caregiver burden in dementia or MCI. Clinical Gerontologist 2019. doi: 10.1080/07317115.2019.1694117CrossRefGoogle Scholar
Dröes, RM, Breebaart, E, Van Tilburg, W, Mellenbergh, GJ. The effect of integrated family support versus day care only on behavior and mood of patients with dementia. International Psychogeriatrics 2000; 12(1): 99116.CrossRefGoogle ScholarPubMed
Dröes, RM, Meiland, FJM, Schmitz, M, Van Tilburg, W. Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: Results from a multi-centre implementation study. International Journal of Geriatric Psychiatry 2004; 19: 673–84.CrossRefGoogle ScholarPubMed
Ojagbemi, A, Owolabi, M. Do occupational therapy interventions improve quality of life in persons with dementia? A meta‐analysis with implications for future directions. Psychogeriatrics 2017; 17: 133–41.CrossRefGoogle ScholarPubMed
Bennett, S, Laver, K, Voigt-Radloff, S, et al. Occupational therapy for people with dementia and their family carers provided at home: A systematic review and meta-analysis. BMJ Open 2019; 9: e026308. doi: 10.1136/bmjopen-2018-026308CrossRefGoogle ScholarPubMed
Lobbia, A, Carbone, E, Faggia, S, et al. The efficacy of cognitive stimulation therapy (CST) for people with mild‐to‐moderate dementia: A review. European Psychologist 2019; 24(3): 257–77.CrossRefGoogle Scholar
Woods, B, Aguirre, E, Spector, AE, Orrell, M. Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews 2012, Issue 2. Art. No.: CD005562. doi: 10.1002/14651858.CD005562.pub2CrossRefGoogle Scholar
Ojagbemi, A, Akin-Ojagbemi, N. Exercise and quality of life in dementia: A systematic review and meta-analysis of randomized controlled trials. Journal of Applied Gerontology 2019 ; 38(1): 2748.CrossRefGoogle ScholarPubMed
Redulla, R. Reminiscence therapy for dementia. Issues in Mental Health Nursing 2019. doi: 10.1080/01612840.2019.1654572CrossRefGoogle Scholar
Dröes, RM, Boelens-Van der Knoop, ECC, Bos, J, Meihuizen, L, Ettema, TP, et al. 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: The International Journal of Social Research and Practice 2006; 5(4): 533–58.CrossRefGoogle Scholar
Cookson, R, Griffin, S, Norheim, OF, Culyer, AJ, eds. Distributional Cost-Effectiveness Analysis: Quantifying Health Equity Impacts and Trade-offs. Oxford, Oxford University Press, 2020.CrossRefGoogle Scholar
Feeny, D, Furlong, W, Torrance, G, et al. Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Medical Care 2002; 40: 113–28.CrossRefGoogle ScholarPubMed
Ratcliffe, J, Flint, T, Easton, T, et al. An empirical comparison of the EQ-5D-5 L, DEMQOL-U and DEMQOL-Proxy-U in a post-hospitalisation population of frail older people living in residential aged care. Applied Health Economics and Health Policy 2017; 15: 399412.CrossRefGoogle Scholar
Drummond, M, Sculpher, M, Torrance, G, O’Brien, B, Stoddart, G. Methods for the Economic Evaluation of Health Care Programmes. 3rd ed. Oxford, Oxford University Press, 2005.Google Scholar
Dolan, P, Gudex, C, Kind, P, et al. A social tariff for EuroQoL: Results from a UK population survey. Discussion Paper 138. University of York. 1995.Google Scholar
Schokkaert, E. How to introduce more (or better) ethical arguments in HTA? International Journal of Technology Assessment in Health Care 2015; 31: 111–12.CrossRefGoogle ScholarPubMed
Appleby, J, Devlin, N, Parkin, D. NICE’s cost effectiveness threshold. British Medical Journal 2007; 335(7616): 358–9.CrossRefGoogle ScholarPubMed
Claxton, K, Martin, S, Soares, M. Methods for the estimation of the National Institute for Health and Care Excellence cost-effectiveness threshold. Health Technology Assessment 2015; 19: 1503, vvi.CrossRefGoogle ScholarPubMed
Knapp, M, King, D, Romeo, R, et al. Cost-effectiveness of donepezil and memantine in moderate to severe Alzheimer’s disease (the DOMINO-AD trial). International Journal of Geriatric Psychiatry 2017; 32(12): 1205–16.CrossRefGoogle Scholar
Howard, R, McShane, R, Lindesay, J, et al. Donepezil and memantine in moderate to severe Alzheimer’s disease: The DOMINO trial. New England Journal of Medicine 2012; 366: 893903.CrossRefGoogle Scholar
Howard, R, McShane, R, Lindesay, J, Ritchie, C, Baldwin, A, et al. Nursing home placement in the donepezil and memantine in moderate to severe Alzheimer’s disease (DOMINO-AD) trial: Secondary and post-hoc analyses. Lancet Neurology 2015; 14(12): 1171–81.CrossRefGoogle ScholarPubMed
NICE. Dementia: Assessment, Management and Support for People Living with Dementia and Their Carers. London, NICE, 2018.Google Scholar
Livingston, G, Manela, M, O’Keeffe, A et al. Clinical effectiveness of START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on cost of care for people with dementia: Six year follow-up of a randomised controlled trial. British Journal of Psychiatry 2019; 216(1): 3542.CrossRefGoogle Scholar
Knapp, M, King, D, Romeo, R, et al. The START study (STrAtegies for RelaTives). Cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of family carers of people with dementia: A pragmatic randomised controlled trial. British Medical Journal; 2013; 347: f6342.CrossRefGoogle ScholarPubMed
Banerjee, S, Hellier, J, Dewey, M, et al. Sertraline or mirtazapine for depression in dementia (HTA-SADD): A randomised, multicentre, double-blind, placebo-controlled trial. The Lancet 2011; 378(9789): 403–11.CrossRefGoogle ScholarPubMed
Folstein, MF, Folstein, SE, McHugh, PR. Mini-mental state: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 1975; 12: 189–98.Google ScholarPubMed
Farina, N, King, D, Burgon, C. Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: Analyses of cross-sectional data from the MODEM study. BMC Geriatrics 2020; 20: 232.CrossRefGoogle ScholarPubMed
Helgesson, G, Erntsson, O, Aström, M, Burström, K. Whom should we ask? A systematic literature review of the arguments regarding the most accurate source of information for valuation of health states. Quality of Life Research 2020; 29: 1465–82.CrossRefGoogle Scholar
Karimi, M, Brazier, J, Basarir, H. The capability approach: A critical review of its application in health economics. Value in Health 2016; 19: 795–9.CrossRefGoogle ScholarPubMed
Grewal, I, Lewis, J, Flynn, T, Brown, J, Bond, J, Coast, J. Developing attributes for a generic quality of life measure for older people: Preferences or capabilities? Social Science and Medicine 2006; 62: 18911901.CrossRefGoogle ScholarPubMed
Coast, J, Flynn, T, Natarajan, L, Sproston, K, Lewis, J, et al. Valuing the ICECAP capability index for older people. Social Science and Medicine 2008; 67: 874–82.CrossRefGoogle ScholarPubMed
Makai, P, Beckebans, F, Van Exel, J, Brouwer, W. Quality of life of nursing home residents with dementia: Validation of the German version of the ICECAP-O. PLOS One 2014; 9: e92016.CrossRefGoogle ScholarPubMed
Netten, A, Burge, P, Malley, J, et al. Outcomes of social care for adults: Developing a preference-weighted measure. Health Technology Assessment 2012; 16: 16.CrossRefGoogle ScholarPubMed
Rand, S, Malley, J, Netten, A, Forder, J. Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Quality of Life Research 2015; 24: 2601–14.CrossRefGoogle Scholar
Decancq, K, Michiels, A. Measuring successful aging with respect for preferences of older persons. Journal of Gerontology: Social Sciences 2019; 74: 364–73.Google ScholarPubMed
Hendriks, I, Demetrio, R, Meiland, FJM, Chattat, R, Szcześniak, D, Rymaszewska, J, et al. Value of personalized dementia-specific quality of life scales: An explorative study in 3 European countries. American Journal of Alzheimer’s Disease and Other Dementias 2021 Jan–Dec; 36: 15333175211033721. doi: 10.1177/15333175211033721. PMID: 34424058CrossRefGoogle ScholarPubMed
Decancq, K, Neumann, D. Does the choice of well-being measure matter empirically? An illustration with German data. In Adler, M, Fleurbaey, M, eds. Oxford Handbook of Well-Being and Public Policy. Oxford, Oxford University Press, 2016; 553–87.Google Scholar

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