Anticipatory grief of spousal and adult children caregivers of people with dementia
Open accessAbstract
BACKGROUND: Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies. METHODS: One hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling. The demographics, AG (measured by the Marwit-Meuser Caregiver Grief Inventory-short form), subjective caregiver burden, and well-being of the participants were assessed. A Functional Assessment Staging Test was used to grade the stages of dementia of the PWD. In this study, those in stages 4 and 5 were regarded as being at an earlier stage, and those in stages 6 and 7 at a later stage of dementia. The Mann-Whitney U-test and the Chi-square test were used to compare the variables between spousal and adult children caregivers, and the Kruskal-Wallis test was used to compare the outcomes among the sub-groups (spousal caregivers caring for relatives with earlier/later stage dementia; and adult children caregivers caring for relatives with earlier/later stage dementia). A post-hoc analysis was also conducted to identify differences between the sub-groups. Pearson's correlation was performed to investigate the bivariate relationships among AG, subjective caregiver burden, and well-being. RESULTS: The results showed that spousal caregivers caring for relatives in a later stage of dementia experienced the highest level of AG and subjective caregiving burden, as compared with spousal caregivers caring for relatives in an earlier stage of dementia and adult children caregivers. Well-being was significantly negatively correlated with AG and subjective caregiver burden, while AG was also significantly correlated with subjective caregiver burden. CONCLUSION: This study found that spousal caregivers of relatives in a later stage of dementia have significantly higher levels of AG, warranting special attention and extra support from palliative professionals.
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Grief in family caregivers is greatest when their relatives have moderate to severe stages of dementia, and grief can increase over time due to gradual deterioration of dementia and gradual loss of selfhood in people with dementia.
“Studies found grief in family caregivers was greatest when their relatives had moderate to severe stages of dementia, and that their grief can increase over time due to gradual deterioration of dementia and gradual loss of selfhood in PLWD (Chan et al., 2013; Cheung et al., 2018).”
From The feasibility and preliminary effects of a pilot randomized controlled trial: Videoconferencing acceptance and commitment therapy in distressed family caregivers of people with dementia. (2023) · cites this paper as Cheung et al., 2018
The Results and Discussion (page unavailable) report the highest anticipatory grief among spousal caregivers of people with later-stage dementia, not among family caregivers generally. The Background links gradual deterioration and relationship losses to grief, but the study does not establish that an individual caregiver’s grief increases over time or specifically attribute that increase to a loss of selfhood. (LLM, conf=0.86)
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“In addition to experiencing the anticipatory grief that occurs in caring for a loved one at the end of life (Cheung et al., 2018; Nielsen et al., 2017), caregivers in Nunavik often experience grief due to prior losses.”
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“These associations in the high severity group provide an important theoretical explanation for the experience of pre-onset grief and post-loss grief in dementia, both of which are most intense when the family member’s symptoms are severe (Cheung et al., 2018; Schulz et al., 2006).”
Furukawa, H., & Greiner, C. (2021) · International Journal of Nursing Sciences · doi:10.1016/j.ijnss.2021.03.007 · Cited by 4 · see citing works
“Research has primarily focused on the negative aspects of caregiving, such as unavoidable burdens [1e9], depression [3,8e10], anxiety [3,9], and anticipatory grief [6].”
BackgroundOh, K. M., Inoue, M., Koizumi, N., Beran, K., & Lee, J. (2023) · Journal of Applied Gerontology · doi:10.1177/07334648231210677 · Cited by 4 · see citing works
“…studies on the level of caregiver burden between spousal caregivers and adult child caregivers are mixed, as some studies have found a higher level of caregiver burden in spousal caregivers (Cheung et al., 2018; Liu, 2021), while others found the opposite (Reed et al., 2014; Rigby et al., 2019).”
ResultWhat is an older husband’s experience of caring for his wife who has dementia?
Nel, K., & Michèle Board (2019) · Nursing Older People · doi:10.7748/nop.2019.e1214 · Cited by 4 · see citing works
Malhotra, C., Chaudhry, I., Balasubramanian, I., & Teo, I. (2025) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2025.105909 · Cited by 3 · see citing works
Smith, M. L., Heeren, T., Ranker, L. R., & Fredman, L. (2021) · Aging & Mental Health · doi:10.1080/13607863.2021.1950611 · Cited by 3 · see citing works
“anticipatory grief (Cheung et al., 2018); feeling overwhelmed, trapped, and/or isolated (Ornstein et al.”
BackgroundLutz, R., Eibauer, C., & Frewer, A. (2022) · Ethik in der Medizin · doi:10.1007/s00481-022-00719-5 · Cited by 3 · see citing works
“Like relatives of people with dementia, they may, for example, experience anticipatory grief that, if unresolved, is associated with negative bereavement outcomes (Cheung et al. 2018).”
BackgroundSpouse and Child Caregivers’ Experiences of Lucid Episodes in Dementia: A Mixed Methods Approach
Kim, K., Bangerter, L. R., Liu, Y., Finnie, D. M., Lapid, M. I., Gaugler, J. E., & Griffin, J. M. (2025) · Innovation in Aging · doi:10.1093/geroni/igaf036 · Cited by 3 · see citing works
“With the gradual, yet enduring loss of cognitive function of the person with ADRD, spousal caregivers could report more burden and feelings of loss than child caregivers (Cheung et al., 2018; Pinquart & Sörensen, 2011).”
Spousal Dementia Grief: A Research Report from the Two-Track Model of Dementia Grief Project
Manevich, A., Rubin, S. S., Ben‐Hayun, R., Aharon‐Peretz, J., & Katz, M. (2021) · OBM Geriatrics · doi:10.21926/obm.geriatr.2101160 · Cited by 4 · see citing works
“These begin with the initial changes in cognitive functions of a dementia patient and increase with the progression of the disease [20-22].”
BackgroundNajafi, K., Farahani, A. S., Rassouli, M., Majd, H. A., Faramarzpour, M., & Ghasemi, M. (2025) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2025.11.049 · Cited by 2 · see citing works
Blomberg, O., Sami, A., Farrand, P. A., Sörensdotter, R., Svedin, F., von Essén, L., Åberg, A. C., & Woodford, J. (2026) · Aging & Mental Health · doi:10.1080/13607863.2025.2612173 · Cited by 2 · see citing works
“While previous research suggests anticipatory grief is especially pronounced among spousal/partner caregivers compared to adult–child caregivers (Cheung et al., 2018), our findings indicate daughter caregivers also experience anticipatory grief.”
Taneska, M. (2020) · Психологија наука и практика/Psychology science and practice · doi:10.37509/psyscip207-8093t · Cited by 3 · see citing works
A ‘personhood paradox’: Care partners’ experiences supporting people with dementia and incontinence
Burholt, V., Orton, Y., Awatere, S., & Daltrey, J. F. (2025) · Dementia · doi:10.1177/14713012251329545 · Cited by 1 · see citing works
“Anticipatory grief is associated with a series of cumulative losses throughout the dementia journey, such as a decline in intimacy and companionship, the erosion of personal freedom, reduced social or occupational opportunities, and shifts in role identity (Cheung et al., 2018).”
Unpaid dementia carers: a scoping review of the caregiving trajectory and changing short break needs
Caulfield, M., & Seddon, D. (2025) · Frontiers in Health Services · doi:10.3389/frhs.2025.1583975 · Cited by 1 · see citing works
Westrelin, N., Lelorain, S., Denève, C., & Zech, E. (2025) · Scandinavian Journal of Caring Sciences · doi:10.1111/scs.70146 · Cited by 1 · see citing works
Barnes, H., & Sarangi, A. (2026) · Home Health Care Management & Practice · doi:10.1177/10848223251406069 · Cited by 1 · see citing works
The Impact of Dementia Caregiving on the Health of the Spousal Caregiver
Raphael, D. D. L., Kasselman, L. J., Drewes, W., Wolff, I., Betlow, L., Leon, J. D., & Reiss, A. B. (2026) · Medicina · doi:10.3390/medicina62040796 · Cited by 2 · see citing works
Lapid, M. I., Bangerter, L. R., Kim, K., Lindroth, H., Liu, Y., Pagali, S. R., Aranibar, M. A. B., & Griffin, J. M. (2026) · International Psychogeriatrics · doi:10.1016/j.inpsyc.2026.100220 · Cited by 1 · see citing works
Roleston, C., West, K., & Shaw, R. L. (2019) · Bereavement Care · doi:10.1080/02682621.2019.1679481 · Cited by 1 · see citing works
Disenfranchised Widowhood: The Journey of Dementia Caregivers
Manevich, A. (2024) · IntechOpen eBooks · doi:10.5772/intechopen.114837 · Cited by 1 · see citing works
Understanding Experiences and Challenges of the ‘Ageing’ Informal Caregiver of Persons with Dementia
Parthasarathy, A. (2024) · Asian Perspectives on Public Health. · doi:10.1007/978-981-97-4449-7_9 · Cited by 1 · see citing works
James, C., Walshe, C., & Swarbrick, C. (2023) · medRxiv · doi:10.1101/2023.07.31.23293402 · Cited by 1 · see citing works
“As in other terminal conditions, evidence suggests that this experience, also referred to as anticipatory grief, is a pre-death response to the process of progressive decline in dementia (Pérez-González et al., 2021; Cheung et al., 2018; Blandin & Pepin, 2017; Meuser & Marwit, 2001).”
BackgroundMroz, E. L., Schwartz, A. E., Valeika, S., Oettingen, G., Marottoli, R. A., David, D., Hagaman, A. K., Fedus, D., & Monin, J. K. (2024) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.6092
“31,32 Anticipatory grief is associated with care partners' development of burden.”
BackgroundBrito, L., Bernardo, A., Leite, Â., & Pereira, M. (2024) · Omega · doi:10.1177/00302228241246417
“Different types of grief, such as anticipatory grief occurs before a loss and involves anticipating what will be lost; while complicated grief is prolonged and impairs the individual ’ s functioning (Cheung et al., 2018; Coelho et al., 2018; Dehpour & Koffman, 2022).”
Grief Recognition Within Dementia Health: A Global Perspective
Ione, A. (2024) · Springer eBooks · doi:10.1007/978-3-031-55440-7_3
Ione, A. (2024) · Springer eBooks · doi:10.1007/978-3-031-55440-7_1
Navigating Grief in Academia: Prioritizing Supports for Women Scholars through Informed Approaches
Aref, E., Idriss-Wheeler, D., & Hajjar, J. (2024) · 2024 ASEE Annual Conference & Exposition Proceedings · doi:10.18260/1-2--47794 · Cited by 2 · see citing works
Anthony, B. F., Walton, J., Brotherhood, E., Crutch, S. J., & Edwards, R. T. (2025) · INQUIRY The Journal of Health Care Organization Provision and Financing · doi:10.1177/00469580251332770
“28 The programme was specifically developed to support family or friend carers of a person with a rare dementia, to allow them to explore their feelings of pre-death grief and loss, share experiences with others, and consider future plans.”
Bermejo-Gómez, I., & Domingo, C. H. (2025) · Revista Española de Geriatría y Gerontología · doi:10.1016/j.regg.2025.101672
CARTAS TERAPÊUTICAS: INTERVENÇÃO DE ENFERMAGEM COM FAMÍLIAS DE PACIENTES EM CUIDADOS PALIATIVOS
Fernandes, M. A., Batista, P. S. D. S., Dias, T. K. C., Costa, B. H. S., de Andrade, F. F., de Oliveira, T. C., & da Costa, S. . G. (2025) · Revista Enfermagem Atual In Derme · doi:10.31011/reaid-2025-v.99-n.supl.1-art.2229
Wood, K., Suizzo, M., Monin, J. K., Crasta, D. J., & Lum, H. D. (2025) · Aging & Mental Health · doi:10.1080/13607863.2025.2508757
“…connection (Furlini, 2001), changes to identity due to role engulfment—when caregiving activities consume one’s identity and time (Eifert et al., 2015; Tuomola et al., 2016), role-reversal (Cheung et al., 2018), and relational identity (e.g. ‘Who am I now that my mother doesn’t recognize me?’”
CUIDADOS PALIATIVOS EM PACIENTES IDOSOS COM DIAGNÓSTICO DE DEMÊNCIA: UMA REVISÃO INTEGRATIVA
Barancelli, A. J., de Campos, V. G., Perizzolo, R., Scabeni, B. V., & Martinelli, V. P. (2025) · Revista Contemporânea · doi:10.56083/rcv5n11-042
Cheung, D. S. K., Ho, G. W. K., Chan, A. C. Y., Ho, K. H. M., Kwok, R. K. H., Law, Y. P. Y., & Bressington, D. T. (2022) · Figshare · doi:10.6084/m9.figshare.21185091
Self-citationPatient-reported outcome measures for anticipatory grief: a systematic review
Wang, S., Gu, W., Zhang, L., Liu, W., Tao, Z., Cheng, Y., Liu, W., Zhao, X., Tu, W., & Gao, X. (2026) · Frontiers in Psychology · doi:10.3389/fpsyg.2026.1709822
“Anticipatory grief (AG) is a prevalent yet often overlooked psychological response characterized by the experience of grief symptoms before the actual occurrence of loss (Cheung et al., 2018).”
Travis, E. L., Price, M. L., Slessor, M., Crewe, J., & Ashley, L. (2026) · JMIR Cancer · doi:10.2196/93688
Quartermaine, M., O'Connor, L., Burley, C., Moore, H., Amidzic, J., Sealey, C., & Breen, L. (2026) · Death Studies · doi:10.1080/07481187.2026.2676985
Family Structure and Location Shape End-of-Life Acute Care Use in Nursing Homes
Stephens, C. E., Block, L., Alexander, R., Chou, L., Tay, D. L., Utz, R., Towsley, G. L., Hollingshaus, M., & Iacob, E. (2026) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2026.106400
Sürer, H. K., Borazan, N. G., Zamantioglu, T., & Ulusal, F. (2026) · Qualitative Health Research · doi:10.1177/10497323261492138
- Authors
- Cheung, D. S. K., Ho, K. H. M., Cheung, T. F., Lam, S. C., & Tse, M. M. Y.
- Affiliations
- Hong Kong Polytechnic University (HK)
- Tung Wah College (HK)
- Corresponding author
- Cheung, Daphne Sze Ki
- Venue
- BMC Palliative Care
- Published
- 2018-11-20
- Volume
- 17
- Issue
- 1
- Pages
- 124-124
- ISSN
- 1472-684X (ISSN-L)
- PMC
- PMC6247750
- OpenAlex
- W2901233288
- Cited by
- 75
- References
- 49
- Citations by year
- 2026: 10 · 2025: 15 · 2024: 12 · 2023: 9 · 2022: 12 · 2021: 9 · 2020: 5 · 2019: 3
- FWCI
- 4.99
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Palliative Care (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Figshare (submittedVersion)
- PolyU Institutional Research Archive (Hong Kong Polytechnic University) (submittedVersion, cc-by)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Keywords
- anticipatory grief, dementia caregivers, spousal caregivers, adult children caregivers, caregiver well-being, dementia stages, community-dwelling people with dementia
- MeSH terms
- Adaptation, Psychological, Aged, Attitude to Death, Cross-Sectional Studies, Dementia, Female, Grief, Humans, Male, Middle Aged, Psychometrics, Caregivers, Spouses, Needs Assessment, Adult Children
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