How Different are Quality of Life Ratings for People with Dementia Reported by Their Family Caregivers from Those Reported by the Patients Themselves?

Article type: Research Article

Authors: Jacob, Louis^a | Han, Ji Won^b | Kim, Tae Hui^c | Park, Joon Hyuk^d | Lee, Seok Bum^e | Lee, Jung Jae^e | Ryu, Seung-Ho^f | Kim, Shin-Kyeom^g | Yoon, Jong Chul^h | Jhoo, Jin Hyeongⁱ | Kim, Jeong Lan^j | Kwak, Kyung Phil^k | Moon, Seok Woo^l | Kim, Bong Jo^m | Lee, Dong Youngⁿ | Kim, Ki Woong^{b; n; o; *}

Affiliations: [a] Department of Biology, École Normale Supérieure de Lyon, Lyon, France | [b] Department of Neuropsychiatry, Seoul National University Bundang Hospital, Bundang-gu, Seongnam-si, Gyeonggi-do, Korea | [c] Department of Psychiatry, Yonsei University Wonju Severance Christian Hospital, Wonju-si, Gangwon-do, Korea | [d] Department of Neuropsychiatry, Jeju National University Hospital, Jeju Self-Governing Province, Korea | [e] Department of Psychiatry, Dankook University Hospital, Cheonan-si, Chungcheongnam-do, Korea | [f] Department of Psychiatry, School of Medicine, Konkuk University, Konkuk University Medical Center, Gwangjin-gu, Seoul, Korea | [g] Department of Neuropsychiatry, Soonchunhyang University Bucheon Hospital, Wonmi-gu, Bucheon-si, Gyeonggi-do, Korea | [h] Department of Neuropsychiatry, Kyunggi Provincial Hospital for the Elderly, Giheung-gu, Yongin-si, Gyeonggi-do, Korea | [i] Department of Neuropsychiatry, Kangwon National University Hospital, Chuncheon-si, Gangwon-do, Korea | [j] Department of Psychiatry, Chungnam National University Hospital, Jung-gu, Daejeon, Korea | [k] Department of Psychiatry, Dongguk Medical Center, Seokjang-dong, Gyeongju-si, Gyeongsangbuk-do, Korea | [l] Department of Psychiatry, Konkuk University Chungju Hospital, Chungju-si, Chungcheongbuk-do, Korea | [m] Department of Psychiatry, Gyeongsang National University, School of Medicine, Jinju-si, Gyeongnam-do, Korea | [n] Department of Psychiatry, Seoul National University, College of Medicine, Jongno-gu, Seoul, Korea | [o] Department of Brain and Cognitive Science, Seoul National University College of Natural Sciences, Gwanak-gu, Seoul, Korea

Correspondence: [*] Correspondence to: Ki Woong Kim, MD, PhD, Department of Neuropsychiatry, National University Bundang Hospital, 166 Gumiro, Bundanggu, Seongnamsi, Gyeonggido, 463-707, Korea. Tel.: +82 31 787 7432; Fax: +82 31 787 4058; E-mail: [email protected].

Abstract: Background: Measurements of patient quality of life (QoL) play a major role in the management of dementia. Objective: We investigated the self-proxy discrepancy of QoL ratings in the elderly and the impact of dementia severity on the discrepancy. Methods: QoL of 718 patients with dementia and 651 non-demented elderly were rated by themselves and their caregivers (CG) using the Quality of Life-Alzheimer’s Disease (QoL-AD). The impact of the rater on the total and item scores of QoL-AD was analyzed using repeated measures ANOVA and differential response patterns between self and proxy were analyzed using differential item functioning (DIF) analysis. Results: Self-rated scores were higher than CG-rated scores in all diagnostic groups. The interaction between rater and diagnostic group was significant in total QoL-AD score and 5 item scores (‘memory’, ‘marriage’, ‘chores around the house’, ‘do things for fun’, and ‘life as a whole’). The strength of the DIF increased with advancing dementia in these items. Conclusion: Self-proxy rating discrepancy of QoL was influenced by the presence and severity of dementia only in five items.

Keywords: Caregiver, dementia, discrepancy, proxy, quality of life, self

DOI: 10.3233/JAD-160538

Journal: Journal of Alzheimer's Disease, vol. 55, no. 1, pp. 259-267, 2017