Family Caregiver Burden of Elderly with Dementia : A Literature Review

Rakhel Maharani Putri Yusyah Biran(1*), Martyarini Budi Setyawati(2), Adiratna Sekar Siwi(3),

(2) Harapan Bangsa University
(3) Harapan Bangsa University
(*) Corresponding Author


Background: The majority of the elderly with dementia living in a community have received care from family caregivers with curious complexity of problems to be identified during the care at home. Objective: To identify the level of burden and characteristics that affect the burden on family caregivers who care for the elderly with dementia. Method: A literature reviewwith a search for relevant articles was published between 2015-2020 using the four databases PubMed, Google Scholar, DOAJ,and Oxford Academic Journals. The selection protocol used the PRISMA flow diagram by setting inclusion and exclusion criteria with the PEOS framework about family caregiver burden caring for elderly with dementia. Results: Nineteen articles that met the inclusion criteria and were identified in this literature review were found from Asia, Europe, the U.S  , and Brazil. Most family caregivers were identified as having a moderate level of caregiving burden that depends on various factors including characteristics of elderly with dementia, sociodemographic characteristics of caregivers, and characteristics of care itself. The presence of behavior problems, neuropsychiatric symptoms and dependence on daily care in elderly with dementia are the main characteristics that predict the burden. Conclusions: The existence of burden during care that tends to increase on family caregivers, makes it necessary to develop a good strategy to minimize the burden in the future by considering the involvement of health professionals in providing appropriate assistance and services.


Caregiver Burden, Family Caregiver, Dementia, Elderly Care

Full Text:



Abreu, W. et al. (2020) ‘A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia’, Dementia, 19(2), pp. 301–318. doi: 10.1177/1471301218773842.

Alzheimer’s Association, Centers for Disease Control and Prevention, E. C. for T. and T. A. (2020) ‘2020 Alzheimer’s disease facts and figures’, Alzheimer’s and Dementia, 16(3), pp. 391–460. doi: 10.1002/alz.12068.

Anand, K. S. et al. (2016) ‘Perceived caregiver stress in Alzheimer’s disease mild cognitive impairment: A case control study’, Annals of Indian Academy of Neurology, 19(1), pp. 58–62. doi: 10.4103/0972-2327.167695.

Besser, L. M. and Galvin, J. E. (2019) ‘Perceived burden among caregivers of patients with frontotemporal degeneration in the United States’, International Psychogeriatrics, 31(8), pp. 1191–1201. doi: 10.1017/S104161021800159X.

Bhatt, J. et al. (2019) World Alzheimer Report 2019 Attitudes to dementia.

Chan, S. W. C. (2011) ‘Family caregiving in dementia: The asian perspective of a global problem’, Dementia and Geriatric Cognitive Disorders, 30(6), pp. 469–478. doi: 10.1159/000322086.

Connors, M. H. et al. (2020) ‘Dementia and caregiver burden: A three-year longitudinal study’, International Journal of Geriatric Psychiatry, 35(2), pp. 250–258. doi: 10.1002/gps.5244.

Isroin, L. and Suandika, M. (2019) ‘Behavioral impact on kidney function among Indonesian migrant workers’, Kesmas, 14(1), pp. 1–8. doi: 10.21109/kesmas.v14i1.2720.

Jhang, K.-M. et al. (2021) ‘

Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario

’, Risk Management and Healthcare Policy, 14, pp. 1335–1351. doi: 10.2147/RMHP.S297204.

Kawano, Y. et al. (2020) ‘Patient affect and caregiver burden in dementia’, Psychogeriatrics, 20(2), pp. 189–195. doi: 10.1111/psyg.12487.

Kim, B., Noh, G. O. and Kim, K. (2021) ‘Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis’, BMC geriatrics, 21(1), p. 160. doi: 10.1186/s12877-021-02109-w.

Kowalska, J. et al. (2017) ‘An Assessment of the Burden on Polish Caregivers of Patients With Dementia: A Preliminary Study’, American Journal of Alzheimer’s Disease and other Dementias, 32(8), pp. 509–515. doi: 10.1177/1533317517734350.

Ku, L. J. E. et al. (2019) ‘Predictors of caregiver burden and care costs for older persons with dementia in Taiwan’, International Psychogeriatrics, 31(6), pp. 885–894. doi: 10.1017/S1041610218001382.

Leite, B. S. et al. (2017) ‘Vulnerability of caregivers of the elderly with dementia: a cross-sectional descriptive study’, Revista brasileira de enfermagem, 70(4), pp. 682–688. doi: 10.1590/0034-7167-2016-0579.

Lethin, C. et al. (2020) ‘Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study’, Dementia, 19(3), pp. 640–660. doi: 10.1177/1471301218782502.

Liew, T. M. et al. (2018) ‘Detecting pre-death grief in family caregivers of persons with dementia: Measurement equivalence of the Mandarin-Chinese version of Marwit-Meuser caregiver grief inventory’, BMC Geriatrics, 18(1). doi: 10.1186/s12877-018-0804-5.

Liew, T. M. et al. (2019) ‘Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis’, International Journal of Geriatric Psychiatry, 34(2), pp. 258–264. doi: 10.1002/gps.5014.

Lou, Q. et al. (2015) ‘Comprehensive analysis of patient and caregiver predictors for caregiver burden, anxiety and depression in Alzheimer’s disease’, Journal of Clinical Nursing, 24(17–18), pp. 2668–2678. doi: 10.1111/jocn.12870.

McAvay, G. J., Vander Wyk, B. and Allore, H. (2020) ‘Individual heterogeneity in the probability of hospitalization, skilled nursing facility admission and mortality’, The Journals of Gerontology: Series A. doi: 10.1093/gerona/glaa314.

Mougias, A. A. et al. (2015) ‘The burden of caring for patients with dementia and its predictors’, Psychiatrike = Psychiatriki, 26(1), pp. 28–37.

Ng, R. and Indran, N. (2021) ‘Societal perceptions of caregivers linked to culture across 20 countries: Evidence from a 10-billion-word database’, PLOS ONE. Edited by H. T. A. Khan, 16(7), p. e0251161. doi: 10.1371/JOURNAL.PONE.0251161.

Park, M., Sung, M., Kim, Sungjin Kyung, et al. (2015) ‘Multidimensional determinants of family caregiver burden in Alzheimer’s disease’, International Psychogeriatrics, 27(8), pp. 1355–1364. doi: 10.1017/S1041610215000460.

Prabasari, N. A. (2020) ‘PELATIHAN PERAWATAN DEMENSIA TERHADAP BEBAN CAREGIVER LANSIA DEMENSIA : Literature Review’, Jurnal Kesehatan Primer, 5(1), pp. 7–17. Available at: (Accessed: 27 July 2021).

Prince, M. et al. (2016) ‘World Alzheimer Report 2016 Improving healthcare for people living with dementia. Coverage, Quality and costs now and in the future’, Alzheimer’s Disease International (ADI), p. 140.

Raggi, A. et al. (2015) ‘The burden of distress and related coping processes in family caregivers of patients with Alzheimer’s disease living in the community’, Journal of the Neurological Sciences, 358(1–2), pp. 77–81. doi: 10.1016/j.jns.2015.08.024.

Ransmayr, G. et al. (2018) ‘Caregiving and caregiver burden in dementia home care: Results from the prospective dementia registry (PRODEM) of the Austrian Alzheimer Society’, Journal of Alzheimer’s Disease, 63(1), pp. 103–114. doi: 10.3233/JAD-170657.

Rezaei, H., Niksima, S. H. and Ghanei Gheshlagh, R. (2020) ‘Burden of Care in Caregivers of Iranian patients with chronic disorders: a systematic review and meta-analysis’, Health and Quality of Life Outcomes 2020 18:1, 18(1), pp. 1–11. doi: 10.1186/S12955-020-01503-Z.

Semple, L. (2015) Living with dementia : The burden of guilt. University of Warwick. Available at: (Accessed: 20 January 2021).

Svendsboe, E. et al. (2016) ‘Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease’, International Journal of Geriatric Psychiatry, 31(9), pp. 1075–1083. doi: 10.1002/gps.4433.

Taranrød, L. B. et al. (2020) ‘

Characteristics, Burden of Care and Quality of Life of Next of Kin of People with Dementia Attending Farm-Based Day Care in Norway: A Descriptive Cross-Sectional Study

’, Journal of Multidisciplinary Healthcare, 13, pp. 1363–1373. doi: 10.2147/JMDH.S268818.

Torrisi, M. et al. (2017) ‘Neuropsychiatric symptoms in dementia may predict caregiver burden: a Sicilian exploratory study’, Psychogeriatrics, 17(2), pp. 103–107. doi: 10.1111/psyg.12197.

Tzeng, N. S. et al. (2015) ‘Caregiver burden for patients with dementia with or without hiring foreign health aides: A cross-sectional study in a northern Taiwan memory clinic’, Journal of Medical Sciences (Taiwan), 35(6), pp. 239–247. doi: 10.4103/1011-4564.172999.

Vaingankar, J. A. et al. (2016) ‘Care participation and burden among informal caregivers of older adults with care needs and associations with dementia’, International Psychogeriatrics, 28(2), pp. 221–231. doi: 10.1017/S104161021500160X.

Win, K. K. et al. (2017a) ‘Burden among family caregivers of dementia in the oldest-old: An exploratory study’, Frontiers in Medicine, 4(NOV). doi: 10.3389/fmed.2017.00205.

World Health Organization and Alzheimer’s Disease International (2012) A public health priority.

Yu, H. et al. (2015) ‘Measuring the caregiver burden of caring for community-residing people with Alzheimer’s disease’, PLoS ONE, 10(7), p. e0132168. doi: 10.1371/journal.pone.0132168.

Zhang, M. et al. (2018) ‘Burden and Strain among Familial Caregivers of Patients with Dementia in China’, Issues in Mental Health Nursing, 39(5), pp. 427–432. doi: 10.1080/01612840.2017.1418034.

Zygouri, I. et al. (2021) ‘Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis’, BMC Health Services Research 2021 21:1, 21(1), pp. 1–15. doi: 10.1186/S12913-021-06736-2.

Article Metrics

Abstract view(s): 810 time(s)
PDF: 490 time(s)


  • There are currently no refbacks.