3,863
Views
10
CrossRef citations to date
0
Altmetric
Health Policy

Burden of caring for Alzheimer’s disease or dementia patients in Japan, the US, and EU: results from the National Health and Wellness Survey: a cross-sectional survey

ORCID Icon, ORCID Icon, , ORCID Icon, & ORCID Icon
Pages 266-278 | Received 26 Nov 2020, Accepted 21 Jan 2021, Published online: 19 Feb 2021

References

  • Hodson R. Alzheimer’s disease. Nature. 2018;559(7715):S1.
  • Lane CA, Hardy J, Schott JM. Alzheimer’s disease. Eur J Neurol. 2018;25(1):59–70.
  • Wang H, Naghavi M, Allen C, et al. Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Lond Engl. 2016;388(10053):1459–1544.
  • Collaborators GBD 2016 Dementia. Global, regional, and national burden of Alzheimer’s disease and other dementias, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18:88.
  • Tipton PW, Graff-Radford NR. Prevention of late‐life dementia: what works and what does not. Pol Arch Intern Med. 2018;128(5):310–316.
  • 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.
  • Yiannopoulou KG, Papageorgiou SG. Current and future treatments in Alzheimer disease: an update. J Cent Nerv Syst Dis. 2020;12:1179573520907397.
  • Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423–428.
  • Fiest KM, Jetté N, Roberts JI, et al. The prevalence and incidence of dementia: a systematic review and meta-analysis. Can J Neurol Sci. 2016;43(S1):S3–S50.
  • End-of-Life Care for People with Dementia[Internet]. National Institute on Aging. [cited 2020 Sep 14]. Available from: https://www.nia.nih.gov/health/end-life-care-people-dementia
  • 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.
  • 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.
  • World Alzheimer Report 2015. The global impact of dementia. London: Alzheimer’s Disease International; 2015.
  • Burns A. The burden of Alzheimer’s disease. Int J Neuropsychopharm. 2000;3(7):S31–S38.
  • Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217–228.
  • 2018 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association; 2018. [Internet]. Available from: https://www.alz.org/media/HomeOffice/Facts%20and%20Figures/facts-and-figures.pdf
  • Lee M, Ryoo JH, Campbell C, et al. Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: an integrative review. J Clin Nurs. 2019;28(23–24):4177–4189.
  • Farina N, Page TE, Daley S, et al. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement. 2017;13(5):572–581.
  • Svendsboe E, Terum T, Testad I, et al. Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. Int J Geriatr Psychiatry. 2016;31(9):1075–1083.
  • 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.
  • 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.
  • World Health Organization and Alzheimer’s Disease International. Dementia: a public health priority[Internet]. Geneva: World Health Organization; 2012 [cited 2020 Sep 17]. p. 112. Available from: http://www.who.int/mental_health/publications/dementia_report_2012/en/
  • Japan Health Policy NOW – The New Orange Plan [Internet]. [cited 2020 Jul 16]. Available from: http://japanhpn.org/en/1-2/
  • Alzheimer’s Disease International. Action in Europe | Alzheimer’s Disease International [Internet]. [cited 2020 Sep 17]. Available from: https://www.alz.co.uk/plans/action-in-europe
  • National Plan to Address Alzheimer’s Disease [Internet]. Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services; 2015 [cited 2020 Sep 17]. Available from: https://aspe.hhs.gov/national-plan-address-alzheimers-disease
  • Nakanishi M, Nakashima T. Features of the Japanese national dementia strategy in comparison with international dementia policies: how should a national dementia policy interact with the public health- and social-care systems? Alzheimers Dement. 2014;10(4):468–476.e3.
  • Pavolini E, Ranci C. Reforms in long-term care policies in Europe: introduction. In: Ranci C, Pavolini E, editors. Reforms in long-term care policies in Europe: investigating institutional change and social impacts. New York (NY): Springer; 2013. p. 3–22.
  • National Plans to Address Alzheimer’s Disease [Internet]. ASPE; 2015 [cited 2021 Jan 4]. Available from: https://aspe.hhs.gov/national-plans-address-alzheimers-disease
  • Alzheimer’s Disease International. World Alzheimer Report 2019: Attitudes to dementia | Alzheimer’s Disease International; 2019 [Internet] [cited 2020 Sep 17]. Available from: https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf
  • Prince MJ, Bryce Renata, Ferri C. World Alzheimer Report 2011: the benefits of early diagnosis and intervention. Alzheimer’s Disease International (ADI); 2011 [Internet]. [cited 2020 Sep 17]; p. 72. Available from: https://www.alz.co.uk/research/world-report-2011
  • Prince MJ, Wimo A, Guerchet M, et al. World Economic Outlook Database, October 2019. [Internet]. Alzheimer’s Disease International (ADI), London; 2015 [cited 2020 Sep 17]. Available from: https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
  • 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.
  • 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.
  • 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.
  • Brazier JE, Roberts J. The estimation of a preference-based measure of health from the SF-12. Med Care. 2004;42(9):851–859.
  • Shah RM, Banahan BF, Holmes ER, et al. An evaluation of the psychometric properties of the sf-12v2 health survey among adults with hemophilia. Health Qual Life Outcomes. 2018;16(1):229.
  • Fukuhara S, Ware JE, Kosinski M, et al. Psychometric and clinical tests of validity of the Japanese SF-36 Health Survey. J Clin Epidemiol. 1998;51(11):1045–1053.
  • EuroQol Group. EuroQol - a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.
  • Feng Y-S, Kohlmann T, Janssen MF, et al. Psychometric properties of the EQ-5D-5L: a systematic review of the literature. Qual Life Res. 2020. DOI:https://doi.org/10.1007/s11136-020-02688-y
  • 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.
  • 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.
  • 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.
  • Kim YE, Lee B. The psychometric properties of the Patient Health Questionnaire-9 in a sample of Korean university students. Psychiatry Investig. 2019;16(12):904–910.
  • Johnson SU, Ulvenes PG, Øktedalen T, et al. Psychometric properties of the General Anxiety Disorder 7-Item (GAD-7) scale in a heterogeneous psychiatric sample. Front Psychol. 2019;10:1713.
  • IBM Corp. IBM SPSS statistics for Windows, Version 25.0. Armonk (NY): IBM Corp; 2017.
  • 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.
  • Ho JY, Hendi AS. Recent trends in life expectancy across high income countries: retrospective observational study. BMJ. 2018;362:k2562.
  • Share of older people living with older caregivers hits record in Japan. Japan Times Online; 2020 Jul 20 [Internet]. Available from: https://www.japantimes.co.jp/news/2020/07/20/national/older-people-caregivers-record-japan/
  • Abdollahpour I, Nedjat S, Salimi Y. Positive aspects of caregiving and caregiver burden: a study of caregivers of patients with dementia. J Geriatr Psychiatry Neurol. 2018;31(1):34–38.
  • Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriat Psychiatry. 2002;17(2):184–188.
  • Tanji H, Koyama S, Wada M, et al. Comparison of caregiver strain in Parkinson’s disease between Yamagata, Japan, and Maryland, The United States. Parkinsonism Relat Disord. 2013;19(6):628–633.
  • Wallhagen MI, Yamamoto-Mitani N. The meaning of family caregiving in Japan and the United States: a qualitative comparative study. J Transcult Nurs. 2006;17(1):65–73.
  • Dilworth-Anderson P, Williams IC, Gibson BE. Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980–2000). Gerontologist. 2002;42(2):237–272.
  • Adams B, Aranda MP, Kemp B, et al. Ethnic and gender differences in distress among Anglo American, African American, Japanese American, and Mexican American spousal caregivers of persons with dementia. J Clin Geropsychology. 2002;8(4):279–301.
  • McCormick WC, Ohata CY, Uomoto J, et al. Similarities and differences in attitudes toward long-term care between Japanese Americans and Caucasian Americans. J Am Geriatr Soc. 2002;50(6):1149–1155.
  • Mokuau N, Tomioka M. Caregiving and older Japanese adults: lessons learned from the periodical literature. J Gerontol Soc Work. 2010;53(2):117–136.
  • Kawaharada R, Sugimoto T, Matsuda N, et al. Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer’s disease: a retrospective cohort study. Geriatr Gerontol Int. 2019;19(12):1243–1247.
  • Kang HS, Myung W, Na DL, et al. Factors associated with caregiver burden in patients with Alzheimer’s disease. Psychiatry Investig. 2014;11(2):152–159.
  • Suzuki Y, Nagasawa A, Mochizuki H, et al. Effects on activities of daily living and instrumental activities of daily living independence in patients with Alzheimer’s disease when the main nursing caregiver consciously provides only minimal nursing care. J Phys Ther Sci. 2019;31(4):398–402.
  • Reed C, Belger M, Vellas B, et al. Identifying factors of activities of daily living important for cost and caregiver outcomes in Alzheimer’s disease. Int Psychogeriatr. 2016;28(2):247–259.
  • Marshall GA, Amariglio RE, Sperling RA, et al. Activities of daily living: where do they fit in the diagnosis of Alzheimer’s disease? Neurodegener Dis Manag. 2012;2(5):483–491.
  • Schulz R, Belle SH, Czaja SJ, et al. Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292(8):961–967.
  • 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.
  • Tamiya N, Noguchi H, Nishi A, et al. Population ageing and wellbeing: lessons from Japan’s long-term care insurance policy. Lancet. 2011;378(9797):1183–1192.
  • Alzheimer Europe. Our work - strategic plan (2016–2020) [Internet]; 2016 [cited 2020 Sep 18]. Available from: https://www.alzheimer-europe.org/Alzheimer-Europe/Our-work/Strategic-Plan-2016-2020
  • Tucker S, Sutcliffe C, Bowns I, et al. Improving the mix of institutional and community care for older people with dementia: an application of the balance of care approach in eight European countries. Aging Ment Health. 2016;20(12):1327–1338.
  • Improving health services for European citizens with dementia: development of best practice strategies for the transition from ambulatory to institutional long-term care facilities | RIGHTTIMEPLACECARE Project | FP7 | CORDIS | European Commission [Internet]. [cited 2020 Sep 21]. Available from: https://cordis.europa.eu/project/id/242153
  • Moise P, Schwarzinger M, Um M-Y, et al. Dementia care in 9 OECD countries: a comparative analysis [Internet]. Paris: Organisation for Economic Co-operation and Development; 2004. p. 109. [cited 2020 Sep 19]. Available from: https://www.oecd.org/els/health-systems/33661491.pdf
  • National Quality Forum. NQF: quality in home and community-based services to support community living: addressing gaps in performance measurement [Internet]; 2016 [cited 2020 Sep 21]. Available from: https://www.qualityforum.org/Publications/2016/09/Quality_in_Home_and_Community-Based_Services_to_Support_Community_Living__Addressing_Gaps_in_Performance_Measurement.aspx
  • Genworth. Genworth Cost of Care Survey. | Median cost data tables. Genworth.com [Internet]; 2019 [cited 2020 Sep 21]. Available from: https://pro.genworth.com/riiproweb/productinfo/pdf/282102.pdf
  • Wübker A, Zwakhalen SMG, Challis D, et al. Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries. Eur J Health Econ. 2015;16(7):689–707.
  • Black BS, Johnston D, Rabins PV, et al. Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. J Am Geriatr Soc. 2013;61(12):2087–2095.
  • Leggett A, Connell C, Dubin L, et al. Dementia care across a tertiary care health system: what exists now and what needs to change. J Am Med Dir Assoc. 2019;20(10):1307–1312.e1.
  • Lepore M, Ferrell A, Wiener JM. Living arrangements of people with Alzheimer’s disease and related dementias: implications for services and supports. U.S. Department of Health & Human Services; 2017. p. 23. Available from: https://aspe.hhs.gov/pdf-report/living-arrangements-people-alzheimers-disease-and-related-dementias-implications-services-and-supports
  • Cadigan RO, Grabowski DC, Givens JL, et al. The quality of advanced dementia care in the nursing home: the role of special care units. Med Care. 2012;50(10):856–862.
  • Japan Population 2020 (Demographics, Maps, Graphs) [Internet]. [cited 2020 Sep 21]. Available from: https://worldpopulationreview.com/countries/japan-population
  • Verbeek H, Meyer G, Challis D, et al. Inter-country exploration of factors associated with admission to long-term institutional dementia care: evidence from the RightTimePlaceCare study. J Adv Nurs. 2015;71(6):1338–1350.
  • Hikoyeda N, Miyawaki CE, Yeo G. Handbook of Geriatric Care Management. Burlington (MA): Jones & Bartlett Publishers; 2015. Chapter 6. Ethnic and cultural considerations in care management; p. 120–145.
  • Population Reference Bureau. Which country has the oldest population [Internet]; 2020 [cited 2020 Sep 21]. Available from: https://www.prb.org/countries-with-the-oldest-populations/