Quality of life and caregiver burden of Alzheimer's Disease among community dwelling patients in Europe: Variation by disease severity and progression
Open accessAbstract
BACKGROUND: Alzheimer's disease (AD) is a significant burden on patients and caregivers. How this burden increases as disease progresses has not been well researched. OBJECTIVE: To assess the association of caregiver burden and quality of life with Alzheimer's disease severity and disease progression in community-dwelling patients in Germany, Spain, and the UK. METHODS: This was a prospective observational longitudinal study of mild-to-moderate AD patients (assessed by Mini-Mental State Examination, MMSE), and their caregivers. The humanistic burden was assessed using these instruments: [Rapid Assessment of Physical Activity (RAPA), EuroQoL-5-Dimension Level (EQ-5D-5L)] and caregiver-reported [Dependence Scale (DS), EQ-5D-5L, Zarit Burden Interview (ZBI)]. Caregiver-reported healthcare resource use was assessed using the Resource Use in Dementia (RUD) and ad-hoc questions. RESULTS: Of 616 patients recruited, 338 and 99 were followed-up at 12 and 18 months, respectively. The caregiver-reported EQ-5D-5L scores of patients' health-related quality of life (HRQoL) showed a negative trend over time (baseline: 0.76; 18 months: 0.67) while patient-reported HRQoL remained at 0.85. DS scores tended to worsen. Disease progression was an independent predictor of HRQoL and increased dependence.Mean ZBI score increased over time reflecting an increase in caregiver burden; MMSE being an independent predictor for caregiver burden. Patient resource utilization and caregiver time for caregiving tended to increase over time. CONCLUSION: We found significant association between disease progression and caregiver and patient burden. Independently, both disease-specific outcomes and disease burden measures increased over time, but as disease progresses, we also found incremental burden associated with it.
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The progression of dementia is often associated with a significant increase in caregiver subjective burden.
“The progression of dementia is often associated with a significant increase in caregiver subjective burden (Froelich et al., 2021)”
From The role of experiential avoidance and cognitive fusion in the development of anxiety symptoms among family carers of people with dementia (2024) · cites this paper as Froelich et al., 2021
The Abstract (Conclusion and Results) reports a significant association between Alzheimer’s disease progression and caregiver burden, and says mean caregiver-reported burden scores increased over time. The Discussion likewise describes a gradual increase. The study concerns community-dwelling patients with Alzheimer’s disease in three European countries, so it does not establish the claim for dementia generally. (LLM, conf=0.82)
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Cites
EuroQol: a new facility for the measurement of health-related quality of life
(1990) · Health Policy · doi:10.1016/0168-8510(90)90421-9 · Cited by 15,736 · see citing works
Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)
Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., Bonsel, G., & Badia, X. (2011) · Quality of Life Research · doi:10.1007/s11136-011-9903-x · Cited by 9,795 · cited 1× · see citing works
“A high attrition rate is typical for longitudinal observational AD studies [32].”
BackgroundRelatives of the Impaired Elderly: Correlates of Feelings of Burden
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980) · The Gerontologist · doi:10.1093/geront/20.6.649 · Cited by 5,810 · see citing works
Forecasting the global burden of Alzheimer's disease
Brookmeyer, R., Johnson, E., Ziegler‐Graham, K., & Arrighi, H. M. (2007) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2007.04.381 · Cited by 3,370 · see citing works
Nichols, E., Szoeke, C. E. I., Vollset, S. E., Abbasi, N., Abd-Allah, F., Abdela, J., Aichour, M. T. E., Akinyemi, R. O., Alahdab, F., Asgedom, S. W., et al. (2019) · The Lancet Neurology · doi:10.1016/s1474-4422(18)30403-4 · Cited by 2,412 · see citing works
Defeating Alzheimer's disease and other dementias: a priority for European science and society
Winblad, B., Amouyel, P., Andrieu, S., Ballard, C., Brayne, C., Brodaty, H., Cedazo-Minguez, A., Dubois, B., Edvardsson, D., Feldman, H., et al. (2016) · The Lancet Neurology · doi:10.1016/s1474-4422(16)00062-4 · Cited by 1,676 · see citing works
Sex differences in Alzheimer disease — the gateway to precision medicine
for the Women’s Brain Project and the Alzheimer Precision Medicine Initiative, Ferretti, M. T., Iulita, M. F., Cavedo, E., Chiesa, P. A., Schumacher Dimech, A., Santuccione Chadha, A., Baracchi, F., Girouard, H., Misoch, S., et al. (2018) · Nature Reviews Neurology · doi:10.1038/s41582-018-0032-9 · Cited by 1,009 · see citing works
The question of familial meningiomas and schwannomas:
King, A. A., & Gutmann, D. H. (2000) · Neurology · doi:10.1212/wnl.54.1.4 · Cited by 814 · see citing works
The Rapid Assessment of Physical Activity (RAPA) among older adults.
Topolski, T. D., LoGerfo, J. P., Patrick, D. L., Williams, B., Walwick, J., & Patrick, M. B. (2006) · Europe PMC (PubMed Central) · Cited by 661 · see citing works
Epidemiology and risk factors of dementia
van der Flier, W. M. (2005) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.2005.082867 · Cited by 550 · see citing works
Prevalencia e incidencia de la enfermedad de Alzheimer en Europa: metaanálisis
Niu, H., Álvarez‐Álvarez, I., Guillén‐Grima, F., & Aguinaga-Ontoso, I. (2016) · Neurología · doi:10.1016/j.nrl.2016.02.016 · Cited by 466 · see citing works
Application of Resource Utilization in Dementia (RUD) instrument in a global setting
Wimo, A. B., Gustavsson, A., Jönsson, L., Winblad, B. G., Hsu, M., & Gannon, B. (2012) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2012.06.008 · Cited by 179 · see citing works
Springate, B. A., & Tremont, G. N. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.09.006 · Cited by 176 · see citing works
EQ-5D as a Quality of Life Measure in People with Dementia and Their Carers: Evidence and Key Issues
Hounsome, N., Orrell, M. W., & Edwards, R. T. (2011) · Value in Health · doi:10.1016/j.jval.2010.08.002 · Cited by 171 · see citing works
Assessing Patient Dependence in Alzheimer's Disease
Stern, Y., Albert, S. M., Sano, M. C., Richards, M., Miller, L., Folstein, M. F., Albert, M., Bylsma, F., & Lafleche, G. (1994) · Journal of Gerontology · doi:10.1093/geronj/49.5.m216 · Cited by 163 · see citing works
Patient- and Proxy-Reported Utility in Alzheimer Disease Using the EuroQoL
Jönsson, L., Andreasen, N., Kilander, L., Soininen, H. S., Waldemar, G., Nygaard, H. A., Winblad, B. G., Eriksdotter, M., Hallikainen, M., & Wimo, A. B. (2006) · Alzheimer Disease & Associated Disorders · doi:10.1097/01.wad.0000201851.52707.c9 · Cited by 161 · see citing works
Wimo, A., Jönsson, L., & Zbrozek, A. (2010) · The journal of nutrition health & aging · doi:10.1007/s12603-010-0316-2 · Cited by 155 · see citing works
Bacigalupo, I., Mayer, F., Lacorte, E., Pucchio, A. D., Marzolini, F., Canevelli, M., Fiandra, T. D., & Vanacore, N. (2018) · Journal of Alzheimer s Disease · doi:10.3233/jad-180416 · Cited by 141 · see citing works
Predictors of costs of care in Alzheimer's disease: A multinational sample of 1222 patients
Gustavsson, A., Brinck, P., Bergvall, N., Kolasa, K., Wimo, A. B., Winblad, B. G., & Jönsson, L. (2011) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2010.09.001 · Cited by 140 · see citing works
Orgeta, V., Edwards, R. T., Hounsome, B., Orrell, M. W., & Woods, B. T. (2014) · Quality of Life Research · doi:10.1007/s11136-014-0770-0 · Cited by 100 · see citing works
Gustavsson, A., Jönsson, L., Rapp, T., Reynish, E. L., Ousset, P., Andrieu, S., Cantet, C., Winblad, B. G., Vellas, B. J., & Wimo, A. B. (2010) · The journal of nutrition health & aging · doi:10.1007/s12603-010-0311-7 · Cited by 98 · see citing works
Barber, R., Gholkar, A. R., Scheltens, P., Ballard, C. G., McKeith, I. G., & O'Brien, J. T. (2000) · International Journal of Geriatric Psychiatry · doi:10.1002/1099-1166(200010)15:10 · Cited by 87 · see citing works
Insight, cognition and quality of life in Alzheimer's disease
Hurt, C. S., Banerjee, S., Tunnard, C., Whitehead, D. L., Tsolaki, M., Mecocci, P., Kłoszewska, I., Soininen, H. S., Vellas, B. J., & Lovestone, S. (2009) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.2009.184598 · Cited by 86 · see citing works
Naglie, G., Hogan, D. B., Krahn, M. D., Black, S. E., Beattie, B. L., Patterson, C., MacKnight, C., Freedman, M., BORRIE, M. J., Byszewski, A. M., et al. (2010) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e3182006a7f · Cited by 65 · see citing works
Henneges, C., Reed, C. C., Chen, Y.-F., Dell’Agnello, G., & Lebrec, J. (2016) · Journal of Alzheimer s Disease · doi:10.3233/jad-150852 · Cited by 59 · see citing works
Jones, R. W., Lebrec, J., Kahle‐Wrobleski, K., Dell’Agnello, G., Bruno, G., Vellas, B. J., Argimón, J. M., Dodel, R. C., Haro, J. M., Wimo, A. B., et al. (2017) · Dementia and Geriatric Cognitive Disorders Extra · doi:10.1159/000461577 · Cited by 51 · see citing works
Watts, A. S., Mortby, M. E., & Burns, J. M. (2018) · PLoS ONE · doi:10.1371/journal.pone.0208581 · Cited by 41 · see citing works
Lillo‐Crespo, M., Riquelme, J., MacRae, R., Abreu, W., Hanson, E. J., Holmerová, I., Cabañero‐Martínez, M. J., Ferrer‐Cascales, R., & Tolson, D. (2018) · Global Health Action · doi:10.1080/16549716.2018.1478686 · Cited by 26 · see citing works
Informal and formal care among persons with dementia immediately before nursing home admission
Ydstebø, A. E., Benth, J. Š., Bergh, S., Selbæk, G., & Vossius, C. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01703-8 · Cited by 23 · see citing works
What do we know from clinical trials on exercise and Alzheimer's disease?
Shen, Y., & Li, R. (2016) · Journal of sport and health science/Journal of Sport and Health Science · doi:10.1016/j.jshs.2016.10.002 · Cited by 22 · see citing works
Assessing the Progression of Alzheimer’s Disease in Real-World Settings in Three European Countries
Lladó, A., Froelich, L., Khandker, R. K., Roset, M., Black, C. M., Lara, N., Chekani, F., & Ambegaonkar, B. M. (2021) · Journal of Alzheimer s Disease · doi:10.3233/jad-201172 · Cited by 15 · see citing works
Self-citationChristensen (1997) · doi:10.1002/(sici)1099-1166(199703)12:3
Flagged first, then by citations
Research works printed but not linked: 1
- [2]Lobo A, Launer L, Fratiglioni L, Andersen K, Di Carlo A, Breteler M, Copeland J, Dartigues J, Jagger C, Martinez-Lage J, Soininen H, Hofman A (2000) Prevalence of dementia and major subtypes in Europe: A collaborative study of population-based cohorts. Neurologic Diseases in the Elderly Research Group. Neurology 54, S4– 9. 10854354
Cited by
Sorted by citations
Wang, L., Zhou, Y., Fang, X., & Qu, G. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.1004552 · Cited by 78 · see citing works
Monfared, A. A. T., Khachatryan, A., Hummel, N., Kopiec, A., Martinez, M., Zhang, R. J., & Zhang, Q. (2024) · Journal of Alzheimer s Disease · doi:10.3233/jad-231259 · Cited by 32 · see citing works
Campbell, J., Lavoie, L., Farraia, M., Huelin, R., Zhang, Q., & Monfared, A. A. T. (2024) · Neurology and Therapy · doi:10.1007/s40120-024-00676-9 · Cited by 30 · see citing works
A Literature Review on the Burden of Alzheimer’s Disease on Care Partners
Frederiksen, K. S., Lanctôt, K. L., Weidner, W. S., Hahn‐Pedersen, J. H., & Mattke, S. (2023) · Journal of Alzheimer s Disease · doi:10.3233/jad-230487 · Cited by 29 · see citing works
Shin, J. H., & Kim, J. H. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph192316252 · Cited by 22 · see citing works
The impact of real-world evidence in implementing and optimizing Alzheimer’s disease care
Hampel, H. J., Li, G., Mielke, M. M., Galvin, J. E., Kivipelto, M., Santarnecchi, E., Babiloni, C., Devanarayan, V., Tkatch, R., Hu, Y. P., et al. (2025) · Med · doi:10.1016/j.medj.2025.100695 · Cited by 20 · see citing works
Hoel, V., Ambugo, E. A., & Wolf‐Ostermann, K. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph191710956 · Cited by 20 · see citing works
Chandler, J., Ye, W., Mi, X., Doty, E. G., & Johnston, J. A. (2024) · Journal of Alzheimer s Disease · doi:10.3233/jad-231166 · Cited by 14 · see citing works
Burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt
Ibrahim, A. M., Ibrahim, M. M., & Zaghamir, D. E. F. (2023) · Palliative & Supportive Care · doi:10.1017/s1478951523000573 · Cited by 11 · see citing works
Kocabaş, D., Karaçar, Y., & Barcın, N. E. (2025) · Nursing Open · doi:10.1002/nop2.70288 · Cited by 10 · see citing works
Sorrentino, M., Mercogliano, M., Fiorilla, C., Stilo, I., Esposito, F., Moccia, M., Lavorgna, L., Affinito, G., Salvatore, E., Sormani, M. P., et al. (2025) · Frontiers in Public Health · doi:10.3389/fpubh.2025.1605993 · Cited by 10 · see citing works
Monfared, A. A. T., Hummel, N., Chandak, A. N., Khachatryan, A., & Zhang, Q. (2023) · Journal of Managed Care & Specialty Pharmacy · doi:10.18553/jmcp.2023.23013 · Cited by 8 · see citing works
Van Hout, E., Contreras, M. L., Mioshi, E., & Kishita, N. (2023) · Journal of Applied Gerontology · doi:10.1177/07334648231156858 · Cited by 7 · see citing works
Toleuov, E., Inoue, K., Akkuzinova, K., Moldagaliyev, T., Seksenbayev, N., Jamedinova, U., Takeshita, H., Fujita, Y., Ospanova, N., & Dyussupov, A. (2025) · Healthcare · doi:10.3390/healthcare13202633 · Cited by 7 · see citing works
Guizzaro, L., Bałkowiec-Iskra, E., Haberkamp, M., Mol, P. G. M., Moreau, A., Mueller-Berghaus, J., Philadelphy, D., Balabanov, P. P., Garcia, J., Thirstrup, S., et al. (2026) · The Lancet Regional Health - Europe · doi:10.1016/j.lanepe.2026.101644 · Cited by 6 · see citing works
Liu, C., Zheng, H., Li, B., He, S., Hu, R., Li, F., Zheng, Y., Lou, W., & Jiang, B. (2024) · International Journal of Nursing Sciences · doi:10.1016/j.ijnss.2024.08.005 · Cited by 5 · see citing works
de Oliveira, M. P. B., Serrão, P. R. M. D. S., Aily, J. B., dos Santos, J. G., Pereira, N. D., & de Andrade, L. P. (2022) · Health & Social Care in the Community · doi:10.1111/hsc.13745 · Cited by 5 · see citing works
Van Hout, E., Contreras, M., Mioshi, E., & Kishita, N. (2024) · Journal of Behavioral and Cognitive Therapy · doi:10.1016/j.jbct.2023.12.001 · Cited by 4 · see citing works
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Lin, C. C., Marques, I. V. P., Dantas, A. C. A., Lyra, C. R., da Silva, E. Q., Júnior, J. R. A. D. N., & de Oliveira, D. V. (2024) · Saúde e Pesquisa · doi:10.17765/2176-9206.2024v17n1.e12296 · Cited by 4 · see citing works
Prieto-Botella, D., Fernández-Pires, P., Peral‐Gómez, P., Espinosa-Sempere, C., Pastor‐Zaplana, J. Á., González-Román, L., Garrido-Pedrosa, J., Zango-Martín, I., Wagman, P., & Pérez, A. S. (2024) · BMC Geriatrics · doi:10.1186/s12877-024-05518-9 · Cited by 4 · see citing works
Factors Associated with the Quality of Life in Family Caregivers of People with Dementia in Taiwan
Yeh, T.-Y., Su, J., & Chang, C.-C. (2022) · Taiwanese Journal of Psychiatry · doi:10.4103/tpsy.tpsy_29_22 · Cited by 3 · see citing works
When support matters: quality of life in alzheimer’s family caregivers
Aras, A., Torun, N., Koşan, Z., & Ceylan, M. (2026) · Archives of Public Health · doi:10.1186/s13690-026-01876-5 · Cited by 2 · see citing works
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Rutenkröger, M. (2025) · Nursing Philosophy · doi:10.1111/nup.70016 · Cited by 2 · see citing works
The Unseen Burden: A Qualitative Investigation of Polish LGBTQ+ Caregivers’ Experiences
Leszko, M. (2025) · Journal of Clinical Medicine · doi:10.3390/jcm14061959 · Cited by 2 · see citing works
Clement‐Carbonell, V., Alcocer‐Bruno, C., & Ruiz‐Robledillo, N. (2025) · Healthcare · doi:10.3390/healthcare14010057 · Cited by 1 · see citing works
Death Anxiety Among Peer Caregivers of Older Persons in Two US Prisons
Prost, S. G., Stewart, W., Novisky, M. A., & Parkkila, M.-L. D. (2025) · Social Sciences · doi:10.3390/socsci14030126 · Cited by 1 · see citing works
Огоренко, В., & Seslavska, E. (2025) · Ukrains kyi Visnyk Psykhonevrolohii · doi:10.36927/2079-0325-v33-is1-2025-7
Leszko, M. (2025) · Emerald Group Publishing Limited eBooks · doi:10.1108/s1530-353520250000033007
Benjamin, K. A., Robibaro, F., Kim, J., Spence, N. D., & Ruggiero, E. D. (2026) · Canadian Journal of Public Health · doi:10.17269/s41997-026-01212-y
Molina, A., Ansai, J. H., Bueno, D. M., Tsen, C., Gerassi, R. C., Silva, M. J. G., Gomes, G. A. D. O., & de Andrade, L. P. (2026) · Journal of Aging and Physical Activity · doi:10.1123/japa.2024-0304
Liu, Z., Xu, G., Ding, R., Ma, C., Huang, Y., Li, L., Zhang, T., Yan, J., Yu, Y., Xu, X., et al. (2026) · The Journal of Prevention of Alzheimer s Disease · doi:10.1016/j.tjpad.2026.100659
Wójcik-Pędziwiatr, M., Tomaszewska, A., Dębska, G., & Rudzińska, M. (2026) · Research Square · doi:10.21203/rs.3.rs-10705206/v1
Kim, M., Hwang, T. Y., Lim, J., Kim, J., Ko, M. M., & Jang, S. (2026) · Research Square · doi:10.21203/rs.3.rs-10880289/v1
Memantine in Korean Alzheimer’s disease: A prospective real-world REMIND study
Na, S., Kim, H. S., Kim, G. H., Kwon, O. D., Shim, Y. S., Lee, C.-N., Rhee, H. Y., 최호진, Hong, Y. J., Lee, J., et al. (2026) · International Psychogeriatrics · doi:10.1016/j.inpsyc.2026.100298
Wu, W., Liu, H., Liang, Y., Li, H., Zhang, J., Sun, Z., Song, Y., Fei, M., Wu, H., Jiang, M., et al. (2026) · Alzheimer s & Dementia · doi:10.1002/alz.71894
- Authors
- Froelich, L., Lladó, A., Khandker, R. K., Pedrós, M., Black, C. M., Sánchez Díaz, E. J., Chekani, F., & Ambegaonkar, B.
- Affiliations
- Central Institute of Mental Health (DE)
- Hospital Clínic de Barcelona (ES)
- Merck & Co., Inc., Rahway, NJ, USA (United States) (US)
- IQVIA, Real World Solutions, Barcelona, Spain
- Corresponding author
- Chekani, Farid
- Venue
- Journal of Alzheimer s Disease Reports
- Publisher
- SAGE Publications
- Published
- 2021-03-11
- Volume
- 5
- Issue
- 1
- Pages
- 791-804
- ISSN
- 2542-4823 (ISSN-L)
- PMC
- PMC8609484
- OpenAlex
- W3206702933
- Cited by
- 34
- References
- 33
- Citations by year
- 2026: 8 · 2025: 10 · 2024: 6 · 2023: 5 · 2022: 5
- FWCI
- 2.87
- Type
- journal article
- Language
- en
- Open access
- diamond
- doi.org
- Licence
- Locations
- Journal of Alzheimer s Disease Reports (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- Alzheimer's disease, caregiver burden, quality of life, disease progression, disease severity, community-dwelling patients, health care utilization, caregiver time, dependency, Zarit Burden Interview, EQ-5D-5L, Mini-Mental State Examination, patient-reported outcomes
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