Unveiling Spousal Challenges and Expectations in Caring for Elderly Dementia Patients in Indonesia
DOI:
https://doi.org/10.33755/jkk.v11i1.791Keywords:
Caregiver burden, caregiver expectations, dementia, elderly care, Indonesia, spousal qualitative study, caregiving,Abstract
Aims: Dementia is a progressive, terminal condition causing cognitive decline and dependency on caregivers, often spouses. Spousal caregivers face unique challenges, including physical, emotional, social, and financial burdens. However, limited research in Indonesia has explored the lived experiences, challenges, and expectations of spousal caregivers for elderly dementia patients.
Objective: This study aims to uncover the challenges and expectations of spousal caregivers for elderly dementia patients in Bekasi, Indonesia, to inform tailored support interventions.
Methods: Using a qualitative descriptive phenomenology approach, in-depth semi-structured interviews were conducted with 10 spousal caregivers. Participants were selected purposively, meeting inclusion criteria such as caregiving duration of over six months. Data were analyzed systematically through thematic analysis, validated via peer review and participant feedback.
Results: Two main themes emerged: (1) Optimal conditions expected of a partner, including hopes for condition improvement and miraculous recovery; and (2) Improving self and family conditions, involving desires to maintain caregiving responsibilities, avoid burdening children, and foster harmonious household relationships. Participants emphasized the importance of societal and governmental support for dementia care.
Conclusion: Spousal caregivers in Indonesia face significant challenges yet maintain optimistic expectations for their partners and families. This highlights the need for community-based monitoring systems and tailored interventions to reduce caregiver burden and improve dementia care quality.
References
Sari CWM, Ningsih EF, Pratiwi SH. Description of dementia in the elderly status in the work area health center Ibrahim Adjie Bandung. Indonesian Contemporary Nursing Journal (ICON Journal). 2018;1–11.
Tate K, Guney S, Lai C, Van Son C, Kennedy M, Dahlke S. Gerontological nursing competencies: A scoping review. Nurse Educ Today. 2024;133:106034.
Pradana AA. Social capital as a determinant of health in older adults: A narrative review. KnE Life Sciences. 2022;1–11.
Pradana AA, Sahar J, Permatasari H. Dementia: How does spouse perceive it? Enferm Clin. 2021;31:S16–9.
Lethin C, Leino-Kilpi H, Bleijlevens MHC, Stephan A, Martin MS, Nilsson K, et al. Predicting caregiver burden in informal caregivers caring for persons with dementia living at home–A follow-up cohort study. Dementia. 2020;19(3):640–60.
Ta Park VM, Ly Q, von Oppenfeld J, Lee Y, Joo Y, Shin HW, et al. A scoping review of dementia caregiving for Korean Americans and recommendations for future research. Clin Gerontol. 2023;46(2):223–39.
Bressan V, Visintini C, Palese A. What do family caregivers of people with dementia need? A mixed‐method systematic review. Health Soc Care Community. 2020;28(6):1942–60.
Weidner WS, Barbarino P. P4‐443: the state of the art of dementia research: new frontiers. Alzheimer’s & Dementia. 2019;15:P1473–P1473.
Pertl MM, Sooknarine-Rajpatty A, Brennan S, Robertson IH, Lawlor BA. Caregiver choice and caregiver outcomes: A longitudinal study of Irish spousal dementia caregivers. Front Psychol. 2019;10:1801.
Colloby S, Whiting S, Warren A. Supporting the couple relationship following dementia diagnosis: A scoping review. Health Soc Care Community. 2022;30(6):e3643–55.
Miller CA. Nursing for wellness in older adults. Lippincott Williams & Wilkins; 2021.
Cheung DSK, Ho KHM, Cheung TF, Lam SC, Tse MMY. Anticipatory grief of spousal and adult children caregivers of people with dementia. BMC Palliat Care. 2018;17(1):1–10.
Jang HY, Yi M. Hermeneutic phenomenological study on caring experience of spouses of elderly people with dementia at home. J Korean Acad Nurs. 2017;47(3):367–79.
Allen AP, Curran EA, Duggan Á, Cryan JF, Chorcoráin AN, Dinan TG, et al. A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress. Neurosci Biobehav Rev. 2017;73:123–64.
Zarit SH. Interventions with frail elders and their families: Are they effective and why? In: Stress and coping in later-life families. Taylor & Francis; 2018. p. 241–65.
Juntunen K, Salminen A, Törmäkangas T, Tillman P, Leinonen K, Nikander R. Perceived burden among spouse, adult child, and parent caregivers. J Adv Nurs. 2018;74(10):2340–50.
Wang CL, Shyu YIL, Wang JY, Lu CH. Progressive compensatory symbiosis: spouse caregiver experiences of caring for persons with dementia in Taiwan. Aging Ment Health. 2017;21(3):241–52.
Bielsten T, Lasrado R, Keady J, Kullberg A, Hellström I. Living life and doing things together: collaborative research with couples where one partner has a diagnosis of dementia. Qual Health Res. 2018;28(11):1719–34.
Tuomola J, Soon J, Fisher P, Yap P. Lived experience of caregivers of persons with dementia and the impact on their sense of self: A qualitative study in Singapore. J Cross Cult Gerontol. 2016;31:157–72.
Rigby T, Johnson DK, Galvin JE. P3‐522: DIFFERENCES IN CAREGIVER GRIEF AND BURDEN AMONG DEMENTIA WITH LEWY BODIES, DEMENTIA OF THE ALZHEIMER’S TYPE, AND DEMENTIA ASSOCIATED WITH PARKINSON’S DISEASE. Alzheimer’s & Dementia. 2018;14 (7S_Part_25):P1322–3.
