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

Year 2024, , 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, , 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

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

Etkili Hemşirelik Dergisi ULAKBİM Türk Tıp Dizini, Türk Medline, Türkiye Atıf Dizini, Şubat 2021 tarihinden beri EBSCO Host ve 26 Ekim 2021 tarihinden itibaren DOAJ ve 18 Ocak 2022 tarihinden beri Index Copernicus, 14 Kasım 2022 tarihinden beri SCOPUS tarafından indekslenmektedir.

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