Research Article
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Caregiver Reactions: A Cross Sectional Study on Caregivers of People with Dementia

Year 2024, Volume: 17 Issue: 4, 493 - 509, 15.10.2024
https://doi.org/10.46483/jnef.1339096

Abstract

Background: It is necessary to know comprehensively the caregiving reactions of caregivers and the affecting factors in order to improve the caregiving process.

Objective: To determine the caregiving reactions of caregivers of people with dementia and the affecting factors.

Method: The study was conducted with descriptive cross-sectional design. The sample consisted of 113 caregivers. Data was collected between January 2020 and January 2021.The t-test, Pearson’s correlation analysis, and multiple linear regression analysis were used.

Results: The mean age of the caregivers was 54.95±11.242 and 77.9% of them were female. The mean scores of CRA subscales were 2.36±0.856 in the Financial Problems (7 variables in the models accounted for 34% of the variance-F = 5.326; R2 =.343; p = .000), 2.31 ± 0.886 in Lack of Family Support (3 variables accounted for 11% of the variance-F = 4.378; R2 = .108; p = .006), 2.75 ± 0.941 in Health Problems (10 variables accounted for 35% of the variance-F= 3.473; R2 = .349; p = .000), 3.33±0.955 in Disrupted Schedule (10 variables accounted for44% of the variance-F = 5.558; R2 = .443; p = .000), and 4.01 ± 0.595 in Caregiver’s Self- Esteem.

Conclusion: The results of study highlight the importance of promoting a more holistic perspective toward caregiving for healthcare professionals.

References

  • Akça Kalem, S., Hanagası, H., Cumming, J.L., Gürvit, H. (2005). Validation study of the Turkish translation of the Neuropsychiatric Inventory (NPI). In abstract book p.58, poster no
  • 47. Presented at the 21 st international conference of Alzheimer’s Disease international, İstanbul, Turkey, September 28-October 1.
  • Alvira, M.C., Risco. E., Cabrera. E., Farre, M., Hallberg, I.R., Bleijlevens, H.C., Meyer, G., Koskenniemi, J., Soto, M., Zabalegui, A. (2014). The association between positive–negative reactions of informal caregivers of pe-ople with dementia and health outcomes in eight European countries: a cross-sectional study. Journal of Ad-vanced Nursing, 71(6), 1417-1434.
  • Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures 2021. https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
  • Ashrafizadeh, H., Gheibizadeh, M., Rassouli, M., Hajibabaee, F., Rostami, S. (2021). Explain the experience of family caregivers regarding care of Alzheimer’s patients: a qualitative study. Frontiers in Psychology, 12.
  • Bahar, Z., Elçigil, A., Beşer, A., Küçükgüçlü. Ö., Akpınar, B. (2017). Reliability and validity of the Turkish ver-sion of the caregiver reaction assessment scale. Studies on Ethno-Medicine, 11(4), 341-349.
  • Charlson, M.E., Pompei, P., Ales, K.L., MacKenzie, C.R. (1987). A new method of classifying prognostic co-morbidity in longitudinal studies: development and validation. Journal of chronic diseases, 40(5), 373-383.
  • Chen, C., Thunell, J., Zissimopoulos, J. (2020). Changes in physical and mental health of Black, Hispanic, and White caregivers and non‐caregivers associated with onset of spousal dementia. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 6(1), e12082.
  • Cobb, S.C., Etkins, L., Nelson, M., Egleston, B., Sweeney, C.W. (2016). Caregiver reactions in oncology and other chronic illnesses. Oncol Nurs Forum, 43(3), 321–327.
  • Connors, M.H., Seeher, K., Teixeira‐Pinto, A., Woodward, M., Ames, D., Brodaty, H. (2020). Dementia and caregiver burden: a three‐year longitudinal study. International journal of geriatric psychiatry, 35(2), 250-258.
  • De Fazio, P., Ciambrone, P., Cerminara, G., Barbuto, E., Bruni, A., Gentile, P., Talarico, A., Lacava, R., Gareri, P., Segura-Garcia, C. (2015). Depressive symptoms in caregivers of patients with dementia: demographic vari-ables and burden. Clinical Interventions in Aging, 10: 1085.
  • Ehrlich, K., Boström, A.M., Mazaheri, M., Heikkilä, K., Emami, A. (2014). Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas. International Journal of Older People Nursing, 10(1), 27-37.
  • Feast, A., Moniz-Cook, E., Stoner, C., Charlesworth, G., Orrell, M. (2016). A systematic review of the relati-onship between behavioral and psychological symptoms (BPSD) and caregiver well-being. Int Psychogeriatr, 28:1761-1774.
  • Igarashia, A., Fukudaa, A., Tenghttps, L., Mab, F., Doreyb, J., Onishi, Y. (2020). Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. Journal Of Market Access & Health Policy, 8:(1).
  • İlik, F., Büyükgöl, H., Kayhan, F., Ertem, D.H., Ekiz, T. (2020). Effects of inappropriate sexual behaviors neu-ropsychiatric symptoms of patients with alzheimer disease and caregivers’ depression on caregiver burden. Journal of Geriatric Psychiatry and Neurology, 33(5), 243-249.
  • Jütten, L.H., Mark, R.H., Sitskoorn, M.M. (2020). Predicting selfesteem in informal caregivers of people with dementia: Modifiable and non-modifiable factors. Aging & Mental Health, 24(2), 221-226.
  • Keskinoglu, P., Ucku, R., Yener, G., Yaka, E., Kurt, P., Tunca, Z. (2009). Reliability and validity of revised Turkish version of Mini Mental State Examination (rMMSE‐T) in community‐dwelling educated and uneducated el-derly. International journal of geriatric psychiatry, 24(11), 1242-1250.
  • Liao, X., Huang, Y., Zhang, Z., Zhong, S., Xie, G., Wang, L., Xiao, H. (2020). Factors associated with health-related quality of life among family caregivers of people with Alzheimer’s disease. Psychogerıatrıcs, 20, 398–405.
  • Lindeza, P., Rodrigues, M., Costa, J., Guerreiro, M., Rosa, M.M. (2020). Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care 002242, doi:10.1136/bmjspcare-2020-002242.
  • Madruga, M., Gozalo, M., Prieto, J., Adsuar, J.C., Gusi, N. (2020). Psychological symptomatology in informal caregivers of persons with dementia: Influences on health- related quality of life. International journal of environmental research and public health, 17(3), 1078.
  • Martínez-Santos, A.E., de la Fuente, N.V., Facal, D., Vilanova-TrillO, L., Gandoy-Crego, M., Rodríguez-Gonzalez, R. (2021). Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective. Applied Nursing Research, 62, 151505.
  • Montgomery, W., Goren, A., Kahle-Wrobleski, K., Nakamura, T., Ueda, K. (2018). Alzheimer’s disease severity and its association with patient and caregiver quality of life in Japan: results of a community-based survey. BMC Geriatrics, 18:141.
  • Nguyen, K.H., Comans, T. (2021). Making the ınvisible companion of people with dementia visible in econo-mic studies: what can we learn from social science?. Healthcare, 9, 44.
  • Panyavin, I., Trujillo, M.A., Peralta, S.V., Stolfi, M.E., Morelli, E., Perrin, P.B., Lasa, J.P., Arango-Lasprilla, J.C. (2015). Examining the influence of family dynamics on quality of care by informal caregivers of patients with Alzheimer’s dementia in Argentina. American Journal of Alzheimer’s Disease & Other Dementias®, 30(6), 613-621.
  • Reed, C., Belger, M., Scott, A.J., Tockhorn-Heidenrech, A., Jones, R.W., Wimo, A., Dodel, R., Haro, J.M. (2019). Factors associated with long-term impact on informal caregivers during Alzheimer’s disease dementia prog-ression: 36 month results from GERAS, Int Psychogeriatr, 32, 267–277.
  • Rigby, T., Ashwill, R.T., Johnson, D.K., Galvin, J.E. (2019). Differences in the experience of caregiving between spouse and adult child caregivers in dementia with lewy bodies. Innovation in Aging, 3(3): 1-15.
  • Robinson, K.M., Adkisson, P., Weinrich, S. (2001). Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer’s disease. Journal of Advanced Nursing, 36(4), 573-582.
  • Schulz, R., Beach, S.R., Czaja, S.J., Martire, L.M., Monin, J.K. (2020). Family caregiving for older adults. An-nual Review of Psychology, 4(7), 635-59.
  • Sittironnarit, G., Emprasertsuk, W., Wannasewok, K. (2020). Quality of life and subjective burden of primary dementia caregivers in Bangkok, Thailand. Asian Journal of Psychiatry, 48, 101913.
  • Tan, G.T.H., Yuan, Q., Devi, F., Wang, P., Ng, L.L., Goveas, R., Chong, S.A., Subramaniam,
  • M. (2021). Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore. BMC Geriatr, 21(1), 1-11; doi: 10.1186/s12877-020-01951-8.
  • Tel, H., Güler, N., Tel, H. (2011). Yaşlıların evde günlük yaşam aktivitelerini sürdürme durumu ve yaşam kalite-leri. Hemşirelikte Araştırma Geliştirme Dergisi, 2: 59-67.
  • Tülek, Z., Baykal, D., Ertürk, S., Bilgiç, B., Hanagasi, H., Gurvit, I.H. (2020). Caregiver burden, quality of life and related factors in family caregivers of dementia patients in Turkey. Issues in mental health nursing, 41(8), 741-749.
  • Quinn, C., Toms, G., DclinPsy. (2019). Influence of positive aspects of dementia caregiving on caregivers’ well-being: A systematic review. The Gerontologist, 59(5), e584–e596.
  • Wang, J., Li, X., Liu, W., Yang, B., Zhao, Q., Lü, Y., & Xiao, M. (2022). The positive aspects of caregiving in de-mentia: A scoping review and bibliometric analysis. Frontiers in Public Health, 10,10,985391.
  • Wawrziczny, E., Duprez, C., Antoine, P. (2020). Predictors of caregiver distress among spouses, adult children living with the person with dementia, and adult children not living with the person with dementia. Psychoge-riatrics, 20(5), 594-601.
  • World Health Organization. (2022). Dementia. In WHO. https://www.who.int/news- room/fact-sheets/detail/dementia
  • Xiong, C., Biscardi, M., Astell, A., Nalder, E., Cameron, J.I., Mihailidis, A. Colantonio, A. (2020). Sex and gen-der differences in caregiving burden experienced by family caregivers of persons with dementia: A systema-tic review. PloS one, 15(4), e0231848.
  • Zhu, C.W., Scarmeas, N., Ornstein, K., Albert, M., Brandt, J., Blacker, D., Sano, M., Stern, Y. (2015). Health-care use and cost in dementia caregivers: longitudinal results from the predictors caregiver study. Alzhei-mer’s & Dementia, 11(4), 444-454.

Bakımveren Tepkileri: Demanslı Bireylerin Bakımverenleri Üzerine Kesitsel Bir Çalışma

Year 2024, Volume: 17 Issue: 4, 493 - 509, 15.10.2024
https://doi.org/10.46483/jnef.1339096

Abstract

Giriş: Bakım verme sürecini iyileştirmek için bakım verenlerin bakım verme tepkilerinin ve etkileyen faktörlerin kapsamlı bir şekilde bilinmesi gerekmektedir.

Amaç: Demanslı bireylere bakım verenlerin bakım verme tepkilerini ve etkileyen faktörleri belirlemektir.

Yöntem: Çalışma, tanımlayıcı kesitsel tasarımda yürütülmüştür. Örneklem 113 bakım verenden oluşmaktadır. Veriler Ocak 2020 ve Ocak 2021 tarihleri arasında toplanmıştır. t-testi, Pearson korelasyon analizi ve çoklu doğrusal regresyon analizi kullanılmıştır.

Bulgular: Bakım verenlerin yaş ortalaması 54.95 ± 11.242 ve %77.9’u kadındı. BTDÖ alt ölçeklerinin ortalama puanları Ekonomik Güçlükler 2.36 ± 0.856 (modellerdeki 7 değişken varyansın %34’ünü açıklamıştır-F = 5.326; R2 = ,343; p = .000), Aile Desteğinin Olmaması2.31 ± 0.886 (3 değişken varyansın %11’ini açıklamıştır-F = 4.378; R2 = .108; p = .006), Sağlık Üzerine Etkisi 2.75 ± 0.941 (10 değişken varyansın %35’ini açıklamıştır-F = 3.473; R2= .349; p = .000), Planların Bozulması 3.33 ± 0.955 (10 değişken varyansın %44’ünüaçıklamıştır-F = 5.558; R2= .443; p = .000) ve Benlik Saygısı 4.01 ± 0.595.

Sonuç: Çalışmanın sonuçları, sağlık profesyonelleri için bakım vermeye yönelik daha bütüncül bir bakış açısı geliştirmenin önemini vurgulamaktadır.

References

  • Akça Kalem, S., Hanagası, H., Cumming, J.L., Gürvit, H. (2005). Validation study of the Turkish translation of the Neuropsychiatric Inventory (NPI). In abstract book p.58, poster no
  • 47. Presented at the 21 st international conference of Alzheimer’s Disease international, İstanbul, Turkey, September 28-October 1.
  • Alvira, M.C., Risco. E., Cabrera. E., Farre, M., Hallberg, I.R., Bleijlevens, H.C., Meyer, G., Koskenniemi, J., Soto, M., Zabalegui, A. (2014). The association between positive–negative reactions of informal caregivers of pe-ople with dementia and health outcomes in eight European countries: a cross-sectional study. Journal of Ad-vanced Nursing, 71(6), 1417-1434.
  • Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures 2021. https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
  • Ashrafizadeh, H., Gheibizadeh, M., Rassouli, M., Hajibabaee, F., Rostami, S. (2021). Explain the experience of family caregivers regarding care of Alzheimer’s patients: a qualitative study. Frontiers in Psychology, 12.
  • Bahar, Z., Elçigil, A., Beşer, A., Küçükgüçlü. Ö., Akpınar, B. (2017). Reliability and validity of the Turkish ver-sion of the caregiver reaction assessment scale. Studies on Ethno-Medicine, 11(4), 341-349.
  • Charlson, M.E., Pompei, P., Ales, K.L., MacKenzie, C.R. (1987). A new method of classifying prognostic co-morbidity in longitudinal studies: development and validation. Journal of chronic diseases, 40(5), 373-383.
  • Chen, C., Thunell, J., Zissimopoulos, J. (2020). Changes in physical and mental health of Black, Hispanic, and White caregivers and non‐caregivers associated with onset of spousal dementia. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 6(1), e12082.
  • Cobb, S.C., Etkins, L., Nelson, M., Egleston, B., Sweeney, C.W. (2016). Caregiver reactions in oncology and other chronic illnesses. Oncol Nurs Forum, 43(3), 321–327.
  • Connors, M.H., Seeher, K., Teixeira‐Pinto, A., Woodward, M., Ames, D., Brodaty, H. (2020). Dementia and caregiver burden: a three‐year longitudinal study. International journal of geriatric psychiatry, 35(2), 250-258.
  • De Fazio, P., Ciambrone, P., Cerminara, G., Barbuto, E., Bruni, A., Gentile, P., Talarico, A., Lacava, R., Gareri, P., Segura-Garcia, C. (2015). Depressive symptoms in caregivers of patients with dementia: demographic vari-ables and burden. Clinical Interventions in Aging, 10: 1085.
  • Ehrlich, K., Boström, A.M., Mazaheri, M., Heikkilä, K., Emami, A. (2014). Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas. International Journal of Older People Nursing, 10(1), 27-37.
  • Feast, A., Moniz-Cook, E., Stoner, C., Charlesworth, G., Orrell, M. (2016). A systematic review of the relati-onship between behavioral and psychological symptoms (BPSD) and caregiver well-being. Int Psychogeriatr, 28:1761-1774.
  • Igarashia, A., Fukudaa, A., Tenghttps, L., Mab, F., Doreyb, J., Onishi, Y. (2020). Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. Journal Of Market Access & Health Policy, 8:(1).
  • İlik, F., Büyükgöl, H., Kayhan, F., Ertem, D.H., Ekiz, T. (2020). Effects of inappropriate sexual behaviors neu-ropsychiatric symptoms of patients with alzheimer disease and caregivers’ depression on caregiver burden. Journal of Geriatric Psychiatry and Neurology, 33(5), 243-249.
  • Jütten, L.H., Mark, R.H., Sitskoorn, M.M. (2020). Predicting selfesteem in informal caregivers of people with dementia: Modifiable and non-modifiable factors. Aging & Mental Health, 24(2), 221-226.
  • Keskinoglu, P., Ucku, R., Yener, G., Yaka, E., Kurt, P., Tunca, Z. (2009). Reliability and validity of revised Turkish version of Mini Mental State Examination (rMMSE‐T) in community‐dwelling educated and uneducated el-derly. International journal of geriatric psychiatry, 24(11), 1242-1250.
  • Liao, X., Huang, Y., Zhang, Z., Zhong, S., Xie, G., Wang, L., Xiao, H. (2020). Factors associated with health-related quality of life among family caregivers of people with Alzheimer’s disease. Psychogerıatrıcs, 20, 398–405.
  • Lindeza, P., Rodrigues, M., Costa, J., Guerreiro, M., Rosa, M.M. (2020). Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care 002242, doi:10.1136/bmjspcare-2020-002242.
  • Madruga, M., Gozalo, M., Prieto, J., Adsuar, J.C., Gusi, N. (2020). Psychological symptomatology in informal caregivers of persons with dementia: Influences on health- related quality of life. International journal of environmental research and public health, 17(3), 1078.
  • Martínez-Santos, A.E., de la Fuente, N.V., Facal, D., Vilanova-TrillO, L., Gandoy-Crego, M., Rodríguez-Gonzalez, R. (2021). Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective. Applied Nursing Research, 62, 151505.
  • Montgomery, W., Goren, A., Kahle-Wrobleski, K., Nakamura, T., Ueda, K. (2018). Alzheimer’s disease severity and its association with patient and caregiver quality of life in Japan: results of a community-based survey. BMC Geriatrics, 18:141.
  • Nguyen, K.H., Comans, T. (2021). Making the ınvisible companion of people with dementia visible in econo-mic studies: what can we learn from social science?. Healthcare, 9, 44.
  • Panyavin, I., Trujillo, M.A., Peralta, S.V., Stolfi, M.E., Morelli, E., Perrin, P.B., Lasa, J.P., Arango-Lasprilla, J.C. (2015). Examining the influence of family dynamics on quality of care by informal caregivers of patients with Alzheimer’s dementia in Argentina. American Journal of Alzheimer’s Disease & Other Dementias®, 30(6), 613-621.
  • Reed, C., Belger, M., Scott, A.J., Tockhorn-Heidenrech, A., Jones, R.W., Wimo, A., Dodel, R., Haro, J.M. (2019). Factors associated with long-term impact on informal caregivers during Alzheimer’s disease dementia prog-ression: 36 month results from GERAS, Int Psychogeriatr, 32, 267–277.
  • Rigby, T., Ashwill, R.T., Johnson, D.K., Galvin, J.E. (2019). Differences in the experience of caregiving between spouse and adult child caregivers in dementia with lewy bodies. Innovation in Aging, 3(3): 1-15.
  • Robinson, K.M., Adkisson, P., Weinrich, S. (2001). Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer’s disease. Journal of Advanced Nursing, 36(4), 573-582.
  • Schulz, R., Beach, S.R., Czaja, S.J., Martire, L.M., Monin, J.K. (2020). Family caregiving for older adults. An-nual Review of Psychology, 4(7), 635-59.
  • Sittironnarit, G., Emprasertsuk, W., Wannasewok, K. (2020). Quality of life and subjective burden of primary dementia caregivers in Bangkok, Thailand. Asian Journal of Psychiatry, 48, 101913.
  • Tan, G.T.H., Yuan, Q., Devi, F., Wang, P., Ng, L.L., Goveas, R., Chong, S.A., Subramaniam,
  • M. (2021). Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore. BMC Geriatr, 21(1), 1-11; doi: 10.1186/s12877-020-01951-8.
  • Tel, H., Güler, N., Tel, H. (2011). Yaşlıların evde günlük yaşam aktivitelerini sürdürme durumu ve yaşam kalite-leri. Hemşirelikte Araştırma Geliştirme Dergisi, 2: 59-67.
  • Tülek, Z., Baykal, D., Ertürk, S., Bilgiç, B., Hanagasi, H., Gurvit, I.H. (2020). Caregiver burden, quality of life and related factors in family caregivers of dementia patients in Turkey. Issues in mental health nursing, 41(8), 741-749.
  • Quinn, C., Toms, G., DclinPsy. (2019). Influence of positive aspects of dementia caregiving on caregivers’ well-being: A systematic review. The Gerontologist, 59(5), e584–e596.
  • Wang, J., Li, X., Liu, W., Yang, B., Zhao, Q., Lü, Y., & Xiao, M. (2022). The positive aspects of caregiving in de-mentia: A scoping review and bibliometric analysis. Frontiers in Public Health, 10,10,985391.
  • Wawrziczny, E., Duprez, C., Antoine, P. (2020). Predictors of caregiver distress among spouses, adult children living with the person with dementia, and adult children not living with the person with dementia. Psychoge-riatrics, 20(5), 594-601.
  • World Health Organization. (2022). Dementia. In WHO. https://www.who.int/news- room/fact-sheets/detail/dementia
  • Xiong, C., Biscardi, M., Astell, A., Nalder, E., Cameron, J.I., Mihailidis, A. Colantonio, A. (2020). Sex and gen-der differences in caregiving burden experienced by family caregivers of persons with dementia: A systema-tic review. PloS one, 15(4), e0231848.
  • Zhu, C.W., Scarmeas, N., Ornstein, K., Albert, M., Brandt, J., Blacker, D., Sano, M., Stern, Y. (2015). Health-care use and cost in dementia caregivers: longitudinal results from the predictors caregiver study. Alzhei-mer’s & Dementia, 11(4), 444-454.
There are 39 citations in total.

Details

Primary Language English
Subjects Nursing (Other)
Journal Section Research Articles
Authors

Ayşegül Sürgit

Burcu Akpınar Söylemez 0000-0002-9643-0325

Early Pub Date October 15, 2024
Publication Date October 15, 2024
Published in Issue Year 2024 Volume: 17 Issue: 4

Cite

APA Sürgit, A., & Akpınar Söylemez, B. (2024). Caregiver Reactions: A Cross Sectional Study on Caregivers of People with Dementia. Etkili Hemşirelik Dergisi, 17(4), 493-509. https://doi.org/10.46483/jnef.1339096

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