Humanistic burden among caregivers of patients with Alzheimer’s disease or dementia in Japan: a large-scale cross-sectional survey

References

• Health (UK) NCC for M. DEMENTIA [Internet]. Dement. NICE-SCIE Guidel. Support. People Dement. Their Carers Health Soc. Care. British Psychological Society; 2007; [cited 2020 Dec 15]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK55480/.
   Google Scholar
• United Nations, Department of Economic and Social Affairs, Population Division. World population ageing, 2017 highlights. 2017.
   Google Scholar
• Montgomery W, Ueda K, Jorgensen M, et al. Epidemiology, associated burden, and current clinical practice for the diagnosis and management of Alzheimer’s disease in Japan. Clin Outcomes Res CEOR. 2018;10:13–28.
   PubMed Web of Science ®Google Scholar
• Alzheimer’s Association. Alzheimer’s disease facts and figures. Alzheimers Dement J Alzheimers Assoc. 2015;11:332–384.
   PubMed Web of Science ®Google Scholar
• Global data. Japan will have the fastest growing prevalent cases of Alzheimer’s [Internet]. Clin. Trials Arena. 2017; [cited 2020 Jul 16]. Available from: https://www.clinicaltrialsarena.com/comment/japan-will-fastest-growing-prevalent-cases-alzheimers/.
   Google Scholar
• Sado M, Ninomiya A, Shikimoto R, et al. The estimated cost of dementia in Japan, the most aged society in the world. Khan HTA, editor. PLoS One. 2018;13(11):e0206508.
   PubMed Web of Science ®Google Scholar
• Donaldson C, Burns A. Burden of Alzheimer’s disease: helping the patient and caregiver. J Geriatr Psychiatry Neurol. 1999;12(1):21–28.
   PubMed Web of Science ®Google Scholar
• Seidel D, Thyrian JR. Burden of caring for people with dementia – comparing family caregivers and professional caregivers. A descriptive study. J Multidiscip Healthc. 2019;12:655–663.
   PubMed Web of Science ®Google Scholar
• Koca E, Taşkapilioğlu Ö, Bakar M. Caregiver burden in different stages of Alzheimer’s Disease. Noro Psikiyatr Ars. 2017;54(1):82–86.
   PubMedGoogle Scholar
• Miyamoto Y, Tachimori H, Ito H. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs. 2010;31(4):246–253.
   PubMed Web of Science ®Google Scholar
• Montgomery W, Goren A, Kahle-Wrobleski K, et al. Alzheimer’s disease severity and its association with patient and caregiver quality of life in Japan: results of a community-based survey. BMC Geriatr. 2018;18(1):141.
   PubMed Web of Science ®Google Scholar
• Japan Health Policy NOW – The New Orange Plan [Internet]; [cited 2020. Jul 16]. Available from: http://japanhpn.org/en/1-2/.
   Google Scholar
• End-of-Life Care for People with Dementia [Internet]. Natl. Inst. Aging; [cited 2020 Sep 14]. Available from: https://www.nia.nih.gov/health/end-life-care-people-dementia.
   Google Scholar
• Papastavrou E, Charalambous A, Tsangari H, et al. The burdensome and depressive experience of caring: what cancer, schizophrenia, and Alzheimer’s Disease caregivers have in common. Cancer Nurs. 2012;35(3):187–194.
   PubMed Web of Science ®Google Scholar
• Haley WE, LaMonde LA, Han B, et al. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2000;15(4):1–18.
   Google Scholar
• Ohno S, Chen Y, Sakamaki H, et al. Humanistic and economic burden among caregivers of patients with cancer in Japan. J Med Econ. 2019;23(1):17–27.
   PubMed Web of Science ®Google Scholar
• Abdullah NN, Idris IB, Shamsuddin K, et al. Health-Related Quality of Life (HRQOL) of gastrointestinal cancer caregivers: the impact of caregiving. Asian Pac J Cancer Prev. 2019;20(4):1191–1197.
   PubMedGoogle Scholar
• Borges EL, Franceschini J, Costa LHD, et al. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol. 2017;43(1):18–23.
   PubMed Web of Science ®Google Scholar
• Cancer Incidence at All-Time High: 867,000 Cases Reported in 2014 [Internet]. nippon.com. 900; [cited 2020 Jul 27]. Available from: https://www.nippon.com/en/features/h00294/.
   Google Scholar
• Charlson ME, Pompei P, Ales KL, et al. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40(5):373–383.
   PubMedGoogle Scholar
• Charlson ME, Charlson RE, Peterson JC, et al. The Charlson comorbidity index is adapted to predict costs of chronic disease in primary care patients. J Clin Epidemiol. 2008;61(12):1234–1240.
   PubMed Web of Science ®Google Scholar
• Quan H, Li B, Couris CM, et al. Updating and validating the Charlson comorbidity index and score for risk adjustment in hospital discharge abstracts using data from 6 countries. Am J Epidemiol. 2011;173(6):676–682.
   PubMed Web of Science ®Google Scholar
• Brazier JE, Roberts J. The estimation of a preference-based measure of health from the SF-12. Med Care. 2004;42(9):851–859.
   PubMed Web of Science ®Google Scholar
• EuroQol Group. EuroQol – a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.
   PubMed Web of Science ®Google Scholar
• Reilly MC, Gooch KL, Wong RL, et al. Validity, reliability and responsiveness of the Work Productivity and Activity Impairment Questionnaire in ankylosing spondylitis. Rheumatol Oxf Engl. 2010;49(4):812–819.
   PubMed Web of Science ®Google Scholar
• Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613.
   PubMed Web of Science ®Google Scholar
• Spitzer RL, Kroenke K, Williams JBW, et al. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–1097.
   PubMed Web of Science ®Google Scholar
• Given CW, Given B, Stommel M, et al. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–283.
   PubMed Web of Science ®Google Scholar
• Persson C, Wennman-Larsen A, Sundin K, et al. Assessing informal caregivers’ experiences: a qualitative and psychometric evaluation of the Caregiver Reaction Assessment Scale. Eur J Cancer Care. 2008;17(2):189–199.
   PubMed Web of Science ®Google Scholar
• Malhotra R, Chan A, Malhotra C, et al. Validity and reliability of the Caregiver Reaction Assessment scale among primary informal caregivers for older persons in Singapore. Aging Ment Health. 2012;16(8):1004–1015.
   PubMed Web of Science ®Google Scholar
• Stephan A, Mayer H, Guiteras AR, et al. Validity, reliability, and feasibility of the German version of the Caregiver Reaction Assessment scale (G-CRA): a validation study. Int Psychogeriatr. 2013;25(10):1621–1628.
   PubMed Web of Science ®Google Scholar
• Misawa T, Miyashita M, Kawa M, et al. Validity and reliability of the Japanese version of the Caregiver Reaction Assessment Scale (CRA-J) for community-dwelling cancer patients. Am J Hosp Palliat Care. 2009;26(5):334–340.
   PubMed Web of Science ®Google Scholar
• IBM Corp. IBM SPSS Statistics for Windows, Version 25.0. Armonk (NY): IBM Corp; 2017.
   Google Scholar
• Garzón-Maldonado FJ, Gutiérrez-Bedmar M, García-Casares N, et al. Health-related quality of life in caregivers of patients with Alzheimer disease. Neurol Engl Ed. 2017;32(8):508–515.
   Google Scholar
• Weitzner MA, McMillan SC, Jacobsen PB. Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manage. 1999;17(6):418–428.
   PubMed Web of Science ®Google Scholar
• Fujihara S, Inoue A, Kubota K, et al. Caregiver burden and work productivity among Japanese working family caregivers of people with dementia. Intj Behav Med. 2019;26(2):125–135.
   PubMed Web of Science ®Google Scholar
• Sruamsiri R, Mori Y, Mahlich J. Productivity loss of caregivers of schizophrenia patients: a cross-sectional survey in Japan. J Ment Health. 2018;27(6):583–587.
   PubMed Web of Science ®Google Scholar
• Igarashi A, Fukuda A, Teng L, et al. Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. J Mark Access Health Policy. 2020;8(1):1720068.
   PubMedGoogle Scholar
• Goren A, Montgomery W, Kahle-Wrobleski K, et al. Impact of caring for persons with Alzheimer’s disease or dementia on caregivers’ health outcomes: findings from a community based survey in Japan. BMC Geriatr. 2016;16(1):122.
   PubMed Web of Science ®Google Scholar
• Chiao C-Y, Wu H-S, Hsiao C-Y. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62(3):340–350.
   PubMed Web of Science ®Google Scholar
• Candy B, Jones L, Drake R, et al. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011;(6):CD007617.
   Google Scholar
• Pot AM, Deeg DJH, Dyck RV. Psychological well-being of informal caregivers of elderly people with dementia: changes over time. Aging Ment Health. 1997;1(3):261–268.
   Web of Science ®Google Scholar
• Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family – caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7–17.
   PubMed Web of Science ®Google Scholar
• Haya MAN, Ichikawa S, Wakabayashi H, et al. Family caregivers’ perspectives for the effect of social support on their care burden and quality of life: a mixed-method study in Rural and Sub-Urban Central Japan. Tohoku J Exp Med. 2019;247(3):197–207.
   PubMed Web of Science ®Google Scholar
• Share of older people living with older caregivers hits record in Japan. Jpn Times Online [Internet]. 2020; [cited 2020 Jul 20]. Available from: https://www.japantimes.co.jp/news/2020/07/20/national/older-people-caregivers-record-japan/.
   Google Scholar
• Okonkwo O, Griffith HR, Belue K, et al. Medical decision-making capacity in patients with mild cognitive impairment. Neurology. 2007;69(15):1528–1535.
   PubMed Web of Science ®Google Scholar
• Hegde S, Ellajosyula R. Capacity issues and decision-making in dementia. Ann Indian Acad Neurol. 2016;19(Suppl 1):S34–S39.
   PubMedGoogle Scholar
• Alzheimer’s Society’s view on decision making [Internet]. Alzheimers Soc; [cited 2020 Jul 28]. Available from: https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/decision-making.
   Google Scholar
• Marson DC, Martin RC, Wadley V, et al. Clinical interview assessment of financial capacity in older adults with mild cognitive impairment and Alzheimer’s disease. J Am Geriatr Soc. 2009;57(5):806–814.
   PubMed Web of Science ®Google Scholar
• Dymek MP, Atchison P, Harrell L, et al. Competency to consent to medical treatment in cognitively impaired patients with Parkinson’s disease. Neurology. 2001;56(1):17–24.
   PubMed Web of Science ®Google Scholar
• Brooker D. Dementia care mapping: a review of the research literature. Gerontologist. 2005;45(Spec No 1):11–18.
   PubMed Web of Science ®Google Scholar
• Matsuda S, Yamamoto M. Long-term care insurance and integrated care for the aged in Japan. Int J Integr Care. 2001;1:e28.
   PubMedGoogle Scholar
• Hirakawa Y, Kuzuya M, Enoki H, et al. Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings. Arch Gerontol Geriatr. 2008;46(3):367–374.
   PubMed Web of Science ®Google Scholar
• Costa-Requena G, Val ME, Cristòfol R. Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliat Support Care. 2015;13(3):583–589.
   PubMed Web of Science ®Google Scholar
• Harding R, Gao W, Jackson D, et al. Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symptom Manage. 2015;50(4):445–452.
   PubMed Web of Science ®Google Scholar
• Ploeg J, Matthew-Maich N, Fraser K, et al. Managing multiple chronic conditions in the community: a Canadian qualitative study of the experiences of older adults, family caregivers and healthcare providers. BMC Geriatr. 2017;17(1):40.
   PubMed Web of Science ®Google Scholar
• Ploeg J, Northwood M, Duggleby W, et al. Caregivers of older adults with dementia and multiple chronic conditions: exploring their experiences with significant changes. Dementia. 2019. DOI:https://doi.org/10.1177/1471301219834423
   Google Scholar
• Schoenmakers B, Buntinx F, DeLepeleire J. Supporting the dementia family caregiver: the effect of home care intervention on general well-being. Aging Ment Health. 2010;14(1):44–56.
   PubMed Web of Science ®Google Scholar
• Chu H, Yang C-Y, Liao Y-H, et al. the effects of a support group on dementia caregivers’ burden and depression. J Aging Health. 2011;23(2):228–241.
   PubMed Web of Science ®Google Scholar
• Choo W-Y, Low W-Y, Karina R, et al. Social support and burden among caregivers of patients with dementia in Malaysia. Asia Pac J Public Health. 2003;15(1):23–29.
   PubMedGoogle Scholar