{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T02:33:17Z","timestamp":1785378797932,"version":"3.55.0"},"reference-count":34,"publisher":"SAGE Publications","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAD"],"published-print":{"date-parts":[[2020,9,15]]},"abstract":"<jats:p>Background: Treatment decisions based on guidelines rather than patients\u2019 preferences determine adherence to and compliance with treatment, which, in turn, could improve health-related outcomes. Objectives: To summarize the stated treatment and care preferences of people with dementia (PwD). Methods: A systematic review was conducted to assess the stated preferences of PwD. The inclusion criterion was the use of quantitative methods to elicit stated preferences, enabling a ranking of preferences. Results: Eleven studies revealed preferences for diagnostics, treatment decisions, patient-related outcomes, care services, end-of-life care, leisure activities, and digital life story work. PwDs prefer accurate, pain-free, and comfortable diagnostic procedures without radioactive markers as well as being accompanied by a caregiver. PwD\u2019s quality of life (QoL), self-efficacy, and depression were equally most important for PwD and caregivers. However, PwD memory was only important for caregivers but not for PwD, and caregiver QoL was moderately important for PwD but least important for caregivers. Additionally, comfort and family involvement were most important for patients\u2019 end-of-life care, whereas caregivers most preferred good communication and pain management. Also, preferences depend on the living situation: Patients living not alone prefer a regular care provider most, whereas those living alone only want to live nearby the caregiver. Preferences for leisure activities did not differ between past and present ratings, indicating that PwD prefer activities that have always been carried out. Conclusion: Only a few studies have applied quantitative methods to elicit the preferences of PwD. More research is needed to capture the stated preferences for the treatment, care, and support of PwD to improve health-related outcomes and the allocation of healthcare resources.<\/jats:p>","DOI":"10.3233\/jad-191299","type":"journal-article","created":{"date-parts":[[2020,7,28]],"date-time":"2020-07-28T15:34:08Z","timestamp":1595950448000},"page":"885-901","source":"Crossref","is-referenced-by-count":22,"title":["Preferences of Cognitively Impaired Patients and Patients Living with Dementia: A Systematic Review of Quantitative Patient Preference Studies"],"prefix":"10.1177","volume":"77","author":[{"given":"Simon","family":"Lepper","sequence":"first","affiliation":[{"name":"German Center for Neurodegenerative Diseases (DZNE), site Rostock\/Greifswald, Greifswald, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anika","family":"R\u00e4dke","sequence":"additional","affiliation":[{"name":"German Center for Neurodegenerative Diseases (DZNE), site Rostock\/Greifswald, Greifswald, Germany"},{"name":"Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald (UMG), Greifswald, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Wehrmann","sequence":"additional","affiliation":[{"name":"German Center for Neurodegenerative Diseases (DZNE), site Rostock\/Greifswald, Greifswald, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernhard","family":"Michalowsky","sequence":"additional","affiliation":[{"name":"German Center for Neurodegenerative Diseases (DZNE), site Rostock\/Greifswald, Greifswald, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wolfgang","family":"Hoffmann","sequence":"additional","affiliation":[{"name":"German Center for Neurodegenerative Diseases (DZNE), site Rostock\/Greifswald, Greifswald, Germany"},{"name":"Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald (UMG), Greifswald, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"key":"10.3233\/JAD-191299_ref6","doi-asserted-by":"crossref","first-page":"h3029","DOI":"10.1136\/bmj.h3029","article-title":"Dementia: timely diagnosis and early intervention","volume":"350","author":"Robinson","year":"2015","journal-title":"BMJ"},{"key":"10.3233\/JAD-191299_ref7","unstructured":"(2018) Pflegestatistik Pflege im Rahmen der Pflegeversicherung Deutschlandergebnisse 2017. Statistisches Bundesamt."},{"key":"10.3233\/JAD-191299_ref8","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1177\/0269216312464094","article-title":"Preferences for end-of-life care: a nominal group study of people with dementia and their family carers","volume":"27","author":"Dening","year":"2013","journal-title":"Palliat Med"},{"key":"10.3233\/JAD-191299_ref9","doi-asserted-by":"crossref","first-page":"47","DOI":"10.3233\/JAD-150600","article-title":"Economic analysis of formal care, informal care, and productivity losses in primary care patients who screened positive for dementia in Germany","volume":"50","author":"Michalowsky","year":"2016","journal-title":"J Alzheimers Dis"},{"key":"10.3233\/JAD-191299_ref10","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1097\/JNN.0b013e3181ce5c45","article-title":"Deciding to institutionalize: why do family members cease caregiving at home?","volume":"42","author":"McLennon","year":"2010","journal-title":"J Neurosci Nurs"},{"key":"10.3233\/JAD-191299_ref11","doi-asserted-by":"crossref","first-page":"372","DOI":"10.1093\/aje\/kwy234","article-title":"Life expectancy with and without dementia: a population-based study of dementia burden and preventive potential","volume":"188","author":"Wolters","year":"2019","journal-title":"Am J Epidemiol"},{"key":"10.3233\/JAD-191299_ref12","doi-asserted-by":"crossref","first-page":"491","DOI":"10.1007\/s11910-014-0491-3","article-title":"Disruption of resting functional connectivity in Alzheimer\u2019s patients and at-risk subjects","volume":"14","author":"Krajcovicova","year":"2014","journal-title":"Curr Neurol Neurosci Rep"},{"key":"10.3233\/JAD-191299_ref13","doi-asserted-by":"crossref","first-page":"158","DOI":"10.1016\/j.jagp.2016.05.001","article-title":"A multimodal structural and functional neuroimaging study of amnestic mild cognitive impairment","volume":"25","author":"Bharath","year":"2017","journal-title":"Am J Geriatr Psychiatry"},{"key":"10.3233\/JAD-191299_ref14","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1007\/s11682-013-9278-4","article-title":"Imaging markers of structural and functional brain changes that precede cognitive symptoms in risk for Alzheimer\u2019s disease","volume":"8","author":"Burggren","year":"2014","journal-title":"Brain Imaging Behav"},{"key":"10.3233\/JAD-191299_ref16","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1007\/BF03262495","article-title":"Using the analytic hierarchy process to elicit patient preferences: prioritizing multiple outcome measures of antidepressant drug treatment","volume":"5","author":"Hummel","year":"2012","journal-title":"Patient"},{"key":"10.3233\/JAD-191299_ref17","doi-asserted-by":"crossref","first-page":"503","DOI":"10.2165\/00019053-199507060-00005","article-title":"Multi-attribute preference functions. Health Utilities Index","volume":"7","author":"Torrance","year":"1995","journal-title":"Pharmacoeconomics"},{"key":"10.3233\/JAD-191299_ref18","doi-asserted-by":"crossref","first-page":"1530","DOI":"10.1136\/bmj.320.7248.1530","article-title":"Using conjoint analysis to elicit preferences for health care","volume":"320","author":"Ryan","year":"2000","journal-title":"BMJ"},{"key":"10.3233\/JAD-191299_ref19","doi-asserted-by":"crossref","first-page":"877","DOI":"10.1007\/s40273-013-0089-7","article-title":"Patient preferences for the treatment of type 2 diabetes: a scoping review","volume":"31","author":"Joy","year":"2013","journal-title":"Pharmacoeconomics"},{"key":"10.3233\/JAD-191299_ref20","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1017\/S1041610215001039","article-title":"Is there a preference for PET or SPECT brain imaging in diagnosing dementia? The views of people with dementia, carers, and healthy controls","volume":"28","author":"Bamford","year":"2016","journal-title":"Int Psychogeriatr"},{"key":"10.3233\/JAD-191299_ref21","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1016\/j.jval.2015.10.011","article-title":"Do you want to hear the bad news? The value of diagnostic tests for Alzheimer\u2019s disease","volume":"19","author":"M\u00fchlbacher","year":"2016","journal-title":"Value Health"},{"key":"10.3233\/JAD-191299_ref22","doi-asserted-by":"crossref","first-page":"1377","DOI":"10.1017\/S1041610217000485","article-title":"Pharmacological and non-pharmacological treatment preferences of healthcare professionals and proxies for challenging behaviors in patients with dementia","volume":"29","author":"Janus","year":"2017","journal-title":"Int Psychogeriatr"},{"key":"10.3233\/JAD-191299_ref23","doi-asserted-by":"crossref","first-page":"2036","DOI":"10.1177\/1471301217740716","article-title":"Activity preferences of persons with dementia: an examination of reports by formal and informal caregivers","volume":"18","author":"Cohen-Mansfield","year":"2019","journal-title":"Dementia (London)"},{"key":"10.3233\/JAD-191299_ref24","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1080\/13607863.2018.1525606","article-title":"People with dementia and caregiver preferences for digital life story work service interventions. A discrete choice experiment and digital survey","volume":"24","author":"O\u2019Philbin","year":"2018","journal-title":"Aging Ment Health"},{"key":"10.3233\/JAD-191299_ref25","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1007\/s40120-016-0049-1","article-title":"Priority of treatment outcomes for caregivers and patients with mild cognitive impairment: preliminary analyses","volume":"5","author":"Barrios","year":"2016","journal-title":"Neurol Ther"},{"key":"10.3233\/JAD-191299_ref26","doi-asserted-by":"crossref","first-page":"1459","DOI":"10.3233\/JAD-171161","article-title":"A survey of patient and partner outcome and treatment preferences in mild cognitive impairment","volume":"63","author":"Smith","year":"2018","journal-title":"J Alzheimers Dis"},{"key":"10.3233\/JAD-191299_ref27","doi-asserted-by":"crossref","first-page":"1317","DOI":"10.1016\/j.socscimed.2009.12.027","article-title":"Preferences for long-term care services: willingness to pay estimates derived from a discrete choice experiment","volume":"70","author":"Nieboer","year":"2010","journal-title":"Soc Sci Med"},{"key":"10.3233\/JAD-191299_ref28","doi-asserted-by":"crossref","first-page":"1941","DOI":"10.1111\/1475-6773.12306","article-title":"What influences patients\u2019 decisions when choosing a health care provider? Measuring preferences of patients with knee arthrosis, chronic depression, or Alzheimer\u2019s disease, using discrete choice experiments","volume":"50","author":"Groenewoud","year":"2015","journal-title":"Health Serv Res"},{"key":"10.3233\/JAD-191299_ref29","doi-asserted-by":"crossref","first-page":"26","DOI":"10.7748\/nop.2017.e862","article-title":"Preferences of residents with dementia for end of life care","volume":"29","author":"Mulqueen","year":"2017","journal-title":"Nurs Older People"},{"key":"10.3233\/JAD-191299_ref30","doi-asserted-by":"crossref","first-page":"1236","DOI":"10.1111\/j.1468-1331.2010.03040.x","article-title":"EFNS guidelines for the diagnosis and management of Alzheimer\u2019s disease","volume":"17","author":"Hort","year":"2010","journal-title":"Eur J Neurol"},{"key":"10.3233\/JAD-191299_ref31","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1016\/j.jval.2012.08.2223","article-title":"Constructing experimental designs for discrete-choice experiments: report of the ISPOR conjoint analysis experimental design good research practices task force","volume":"16","author":"Johnson","year":"2013","journal-title":"Value Health"},{"key":"10.3233\/JAD-191299_ref32","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1111\/j.1365-2648.2006.03897.x","article-title":"Life story work in health and social care: systematic literature review","volume":"55","author":"McKeown","year":"2006","journal-title":"J Adv Nurs"},{"key":"10.3233\/JAD-191299_ref34","first-page":"CD008345","article-title":"Case management approaches to home support for people with dementia","volume":"1","author":"Reilly","year":"2015","journal-title":"Cochrane Database Syst Rev"},{"key":"10.3233\/JAD-191299_ref35","doi-asserted-by":"crossref","first-page":"996","DOI":"10.1001\/jamapsychiatry.2017.2124","article-title":"Effectiveness and safety of dementia care management in primary care: a randomized clinical trial","volume":"74","author":"Thyrian","year":"2017","journal-title":"JAMA Psychiatry"},{"key":"10.3233\/JAD-191299_ref36","doi-asserted-by":"crossref","first-page":"1296","DOI":"10.1016\/j.jalz.2019.05.008","article-title":"Cost-effectiveness of a collaborative dementia care management-Results of a cluster-randomized controlled trial","volume":"15","author":"Michalowsky","year":"2019","journal-title":"Alzheimers Dement"},{"key":"10.3233\/JAD-191299_ref37","doi-asserted-by":"crossref","first-page":"577","DOI":"10.1111\/j.1532-5415.2004.52165.x","article-title":"Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors Study","volume":"52","author":"Straton","year":"2004","journal-title":"J Am Geriatr Soc"},{"key":"10.3233\/JAD-191299_ref38","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1186\/s12874-017-0448-8","article-title":"Methods to perform systematic reviews of patient preferences: a literature survey","volume":"17","author":"Yu","year":"2017","journal-title":"BMC Med Res Methodol"},{"key":"10.3233\/JAD-191299_ref40","first-page":"26","article-title":"Decision-making incapacity at the end of life: conceptual and ethical challenges","volume":"6","author":"Trachsel","year":"2013","journal-title":"Bioethica Forum"},{"key":"10.3233\/JAD-191299_ref41","unstructured":"Orme BK (2006) Getting started with conjoint analysis: strategies for product design and pricing research. Research Publishers, LLC."},{"key":"10.3233\/JAD-191299_ref42","doi-asserted-by":"crossref","first-page":"403","DOI":"10.1016\/j.jval.2010.11.013","article-title":"Conjoint analysis applications in health\u2014a checklist: a report of the ISPOR good research practices for conjoint analysis task force","volume":"14","author":"Bridges","year":"2011","journal-title":"Value Health"}],"container-title":["Journal of Alzheimer's Disease"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JAD-191299","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T10:08:38Z","timestamp":1777370918000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JAD-191299"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9,15]]},"references-count":34,"journal-issue":{"issue":"2"},"URL":"https:\/\/doi.org\/10.3233\/jad-191299","relation":{},"ISSN":["1387-2877","1875-8908"],"issn-type":[{"value":"1387-2877","type":"print"},{"value":"1875-8908","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,9,15]]}}}