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- Caregiver Burden of Patients With Huntington’s Disease in South Korea
- Chan Young Lee, Chaewon Shin, Yun Su Hwang, Eungseok Oh, Manho Kim, Hyun Sook Kim, Sun Ju Chung, Young Hee Sung, Won Tae Yoon, Jin Whan Cho, Jae-Hyeok Lee, Han-Joon Kim, Hee Jin Chang, Beomseok Jeon, Kyung Ah Woo, Seong-Beom Koh, Kyum-Yil Kwon, Jangsup Moon, Young Eun Kim, Jee-Young Lee
- J Mov Disord. 2024;17(1):30-37. Published online September 11, 2023
- DOI: https://doi.org/10.14802/jmd.23134
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Abstract
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Supplementary Material - Objective
This is the first prospective cohort study of Huntington’s disease (HD) in Korea. This study aimed to investigate the caregiver burden in relation to the characteristics of patients and caregivers.
Methods
From August 2020 to February 2022, we enrolled patients with HD from 13 university hospitals in Korea. We used the 12-item Zarit Burden Interview (ZBI-12) to evaluate the caregiver burden. We evaluated the clinical associations of the ZBI-12 scores by linear regression analysis and investigated the differences between the low- and high-burden groups.
Results
Sixty-five patients with HD and 45 caregivers were enrolled in this cohort study. The average age at onset of motor symptoms was 49.3 ± 12.3 years, with an average cytosine-adenine-guanine (CAG)n of 42.9 ± 4.0 (38–65). The median ZBI-12 score among our caregivers was 17.6 ± 14.2. A higher caregiver burden was associated with a more severe Shoulson–Fahn stage (p = 0.038) of the patients. A higher ZBI-12 score was also associated with lower independence scale (B = -0.154, p = 0.006) and functional capacity (B = -1.082, p = 0.002) scores of patients. The caregiving duration was longer in the high- than in the low-burden group. Caregivers’ demographics, blood relation, and marital and social status did not affect the burden significantly.
Conclusion
HD patients’ neurological status exerts an enormous impact on the caregiver burden regardless of the demographic or social status of the caregiver. This study emphasizes the need to establish an optimal support system for families dealing with HD in Korea. A future longitudinal analysis could help us understand how disease progression aggravates the caregiver burden throughout the entire disease course. -
Citations
Citations to this article as recorded by
- A Practical Guide for Clinical Approach to Patients With Huntington’s Disease in Korea
Chaewon Shin, Ryul Kim, Dallah Yoo, Eungseok Oh, Jangsup Moon, Minkyeong Kim, Jee-Young Lee, Jong-Min Kim, Seong-Beom Koh, Manho Kim, Beomseok Jeon
Journal of Movement Disorders.2024; 17(2): 138. CrossRef - Attitude toward physical activity among Asian American family caregivers of persons living with dementia
JiWon Choi, Van Park, Andrew Jung, Janice Tsoh
Geriatric Nursing.2024;[Epub] CrossRef
- A Practical Guide for Clinical Approach to Patients With Huntington’s Disease in Korea
- Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden
- Yoon-Sang Oh, Ji E. Lee, Phil Hyu Lee, Joong-Seok Kim
- J Mov Disord. 2015;8(1):26-32. Published online January 31, 2015
- DOI: https://doi.org/10.14802/jmd.14019
- 21,877 View
- 122 Download
- 37 Web of Science
- 35 Crossref
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Abstract
PDF
- Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD). Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients.
Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI) to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden.
Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8%) and anxiety (70.8%), followed by depression (68.7%). More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden.
Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden. -
Citations
Citations to this article as recorded by- Caregiver Burden of Patients With Huntington’s Disease in South Korea
Chan Young Lee, Chaewon Shin, Yun Su Hwang, Eungseok Oh, Manho Kim, Hyun Sook Kim, Sun Ju Chung, Young Hee Sung, Won Tae Yoon, Jin Whan Cho, Jae-Hyeok Lee, Han-Joon Kim, Hee Jin Chang, Beomseok Jeon, Kyung Ah Woo, Seong-Beom Koh, Kyum-Yil Kwon, Jangsup Mo
Journal of Movement Disorders.2024; 17(1): 30. CrossRef - Risk factors and intervention of caregiver burden in Parkinson’s disease: a systematic review and meta-analysis
Yan Zhao, Wenxiang Wu, Jianjun Wu, Bin Shen, Yanpei Cao, Yafang Xu
Quality of Life Research.2024; 33(7): 1753. CrossRef - Impact of advanced Parkinson’s disease on caregivers: an international real-world study
Pablo Martinez-Martin, Matej Skorvanek, Tove Henriksen, Susanna Lindvall, Josefa Domingos, Ali Alobaidi, Prasanna L. Kandukuri, Vivek S. Chaudhari, Apeksha B. Patel, Juan Carlos Parra, James Pike, Angelo Antonini
Journal of Neurology.2023; 270(4): 2162. CrossRef - Motor Complications and Treatment in Advanced Parkinson's Disease #456
Caroline E. Olvera, Jori E. Fleisher, Neha M. Kramer
Journal of Palliative Medicine.2023; 26(5): 730. CrossRef - A single centre prospective study of three device-assisted therapies for Parkinson’s disease
Hugo Morales-Briceño, Ainhi D. Ha, Han-Lin Chiang, Yicheng Tai, Florence C. F. Chang, David S. Tsui, Jane Griffith, Donna Galea, Samuel D. Kim, Belinda Cruse, Neil Mahant, Victor S. C. Fung
npj Parkinson's Disease.2023;[Epub] CrossRef - Unawareness of Apathy in Parkinson’s Disease: The Role of Executive Dysfunction on Symptom Recognition
Gianpaolo Maggi, Carmine Vitale, Alessia Delle Curti, Marianna Amboni, Gabriella Santangelo
Brain Sciences.2023; 13(6): 964. CrossRef - Caregiver Burden in Late-Stage Parkinsonism and Its Associations
Stefania Kalampokini, Adrianus L. A. J. Hommel, Stefan Lorenzl, Joaquim J. Ferreira, Wassilios G. Meissner, Per Odin, Bastiaan R. Bloem, Richard Dodel, Anette-Eleonore Schrag
Journal of Geriatric Psychiatry and Neurology.2022; 35(1): 110. CrossRef - Psychometric Properties of Clinical Indicators for Identification and Management of Advanced Parkinson’s Disease: Real-World Evidence From G7 Countries
Angelo Antonini, Rajesh Pahwa, Per Odin, Tove Henriksen, Michael J. Soileau, Ramon Rodriguez-Cruz, Stuart H. Isaacson, Aristide Merola, Susanna Lindvall, Josefa Domingos, Ali Alobaidi, Yash J. Jalundhwala, Prasanna L. Kandukuri, Juan Carlos Parra, Pavnit
Neurology and Therapy.2022; 11(1): 303. CrossRef - Impact of Isolation During the COVID-19 Pandemic on the Patient Burden of Parkinson’s Disease: A PMD Alliance Survey
Neal Hermanowicz, Maria Cristina Ospina, Yasar Torres-Yaghi, Sherrie Gould, Kelly Papesh, Jason A Rivera, Susan Miller, Sarah Jones, Kelli Musick, Damian May
Neuropsychiatric Disease and Treatment.2022; Volume 18: 633. CrossRef - Exploring the experiences of living with Lewy body dementia: An integrative review
Allison Bentley, Tessa Morgan, Yakubu Salifu, Catherine Walshe
Journal of Advanced Nursing.2021; 77(12): 4632. CrossRef - Neuropsychiatric symptoms in Parkinson’s disease: association with caregiver distress and disease severity
Wan-Chen Tsai, Hui-Chen Lin, Chiung-Chih Chang, Wen-Neng Chang, Chih-Cheng Huang, Kuei-Yueh Cheng, Hung-Chen Wang, Wei-Che Lin, Sheng-Yuan Hsiao, Yun-Ru Lai, Cheng-Hsien Lu, Nai-Wen Tsai
International Psychogeriatrics.2020; 32(6): 733. CrossRef - Caregiver Burden, Quality of Life and Related Factors in Family Caregivers of Dementia Patients in Turkey
Zeliha Tulek, Dilek Baykal, Sumeyye Erturk, Basar Bilgic, Hasmet Hanagasi, I. Hakan Gurvit
Issues in Mental Health Nursing.2020; 41(8): 741. CrossRef - Identifying and responding to fatigue and apathy in Parkinson’s disease: a review of current practice
Claudia Lazcano-Ocampo, Yi Min Wan, Daniel J van Wamelen, Lucia Batzu, Iro Boura, Nataliya Titova, Valentina Leta, Mubasher Qamar, Pablo Martinez-Martin, K Ray Chaudhuri
Expert Review of Neurotherapeutics.2020; 20(5): 477. CrossRef - A systematic review of the association between individual behavioural and psychological symptoms in dementia and carer burden
Catriona George, Nuno Ferreira, Rosalind Evans, Victoria Honeyman
Working with Older People.2020; 24(3): 181. CrossRef Impact of Supporting People with Advanced Parkinson’s Disease on Carer’s Quality of Life and Burden
Nicola Modugno, Angelo Antonini, Alessandro Tessitore, Pietro Marano, Francesco Ernesto Pontieri, Nicola Tambasco, Margherita Canesi, Giovanni Fabbrini, Mariachiara Sensi, Rocco Quatrale, Paolo Solla, Giovanni Defazio, Gabriella Melzi, Giuliana Gualberti,
Neuropsychiatric Disease and Treatment.2020; Volume 16: 2899. CrossRef- A Comparative Study of the Behavioral Profile of the Behavioral Variant of Frontotemporal Dementia and Parkinson’s Disease Dementia
Dinesh Saini, Adreesh Mukherjee, Arijit Roy, Atanu Biswas
Dementia and Geriatric Cognitive Disorders Extra.2020; 10(3): 182. CrossRef - The long‐term direct and indirect economic burden among Parkinson's disease caregivers in the United States
Pablo Martinez‐Martin, Dendy Macaulay, Yash J. Jalundhwala, Fan Mu, Erika Ohashi, Thomas Marshall, Kavita Sail
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Toril Marie Terum, Ingelin Testad, Arvid Rongve, Dag Aarsland, Ellen Svendsboe, John Roger Andersen
International Journal of Geriatric Psychiatry.2019; 34(10): 1421. CrossRef - Trait Impulsivity Is Independent of Mild Cognitive Impairment in a Parkinson’s Disease Cohort
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Alessandro Tessitore, Pietro Marano, Nicola Modugno, Francesco E. Pontieri, Nicola Tambasco, Margherita Canesi, Anna Latorre, Leonardo Lopiano, Mariachiara Sensi, Rocco Quatrale, Paolo Solla, Giovanni Defazio, Gabriella Melzi, Anna Maria Costanzo, Giulian
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RA Lawson, AJ Yarnall, F Johnston, GW Duncan, TK Khoo, D Collerton, JP Taylor, DJ Burn
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QJM: An International Journal of Medicine.2017; 110(9): 565. CrossRef - Hallucinations in Healthy Older Adults: An Overview of the Literature and Perspectives for Future Research
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Frontiers in Psychology.2017;[Epub] CrossRef - Dementia Caregiver Burden: a Research Update and Critical Analysis
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Neurodegenerative Disease Management.2016; 6(6): 499. CrossRef
- Caregiver Burden of Patients With Huntington’s Disease in South Korea
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