Having a Family Member with Alzheimer’s Disease: The Experiences of Family Caregivers
Angela Shanley Escleto | Reesha Jozelle Barluado | Jun Yang Badie
Discipline: others in psychology
Abstract:
The study explored the experiences of family caregivers having a family member with Alzheimer’s disease.
Specifically, it explored their roles and responses, challenges encountered, and their coping strategies. Through a
qualitative case study design, 3 family caregiver participants meeting the inclusion criteria were interviewed using a
researchers-made interview guide. Thematic analysis was employed to identify themes. The results showed that family
caregivers experienced adjustment in family roles, change in responsibility, natural assumption of role, natural
adaptation of roles, shared responsibilities, feeling a sense of gratitude, acceptance after denial, acceptance of caregiver
role, love, and caregiving. Challenges included impact on daily life, challenges in family coordination, emotional
struggles, financial strain, limited family support, and expectations, adjustments in daily routines and responsibilities,
and family conflicts and emotional stress. Coping strategies involved family support, family teamwork with open
communication, communication with other family members, financial management, acceptance of responsibility,
sharing duties, and learning new skills.
References:
- Alzheimer’s Association. (2020). 2020 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 16(3), 391–460. https://doi.org/10.1002/alz.12068
- Alzheimer’s Association. (2024). Alzheimer’s disease and dementia; Alzheimer’s Association. https://www.alz.org/ Alzheimer’s Disease: Family & Relationships. (2021, September 14). Brightfocus Foundation. https://www.brightfocus.org/resource/alzheimers- disease-family-relationship/
- Azam, S., Haque, Md. E., Balakrishnan, R., Kim, I.-S., & Choi, D.-K. (2021). The ageing brain: Molecular and cellular basis of neurodegeneration. Frontiers in Cell and Developmental Biology, 9. https://doi.org/10.3389/fcell.2021.683459
- Bowen, M. (2019, July 4). Family therapy in clinical practice - The Murray Bowen archives project. The Murray Bowen Archives Project. https://murraybowenarchives.org/books/family-therapy-in-clinical-practice/
- Brodaty, H. and Donkin, M. (2009) Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11, 217-228. - References - Scientific Research Publishing. (2009).
- CDC. (2024, October 7). Caregivers of a person with Alzheimer’s disease or a related dementia. Caregiving. https://www.cdc.gov/caregiving/about/?CDC_AAref_Val=https://www.cdc.gov/agin g/caregiving/alzheimer.htm
- Cohen, I. (2023, November 13). Understanding Bowen family systems theory | Psychology Today. https://www.psychologytoday.com/intl/blog/your-emotional- meter/202311/understanding-bowen-family-systems-theory
- Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches. SAGE Publications. ISBN: 9781506330204. https://us.sagepub.com/en- us/nam/qualitative-inquiry-and-research-design/book246896. (2018). Sciepub.com. https://www.sciepub.com/reference/432720
- De Guzman, A., B, & et al. (2018). Prevalence of dementia and associated risk factors: A population-based study in the Philippines. | Journal of Alzheimer’s Disease. J-Alz.com. https://www.j-alz.com/content/prevalence-dementia-and-associated-risk-factors- population-based-study-%C2%A0-philippines
- Dennis Bomansang Daliri, Gifty Apiung Aninanya, Timothy Tienbia Laari, Abagye, N., & Agani Afaya. (2024). Coping strategies used by informal family caregivers of individuals living with mental illness in the Upper East Region of Ghana: a qualitative study. BMJ Open, 14(7), e084791–e084791. https://doi.org/10.1136/bmjopen-2024-084791
- Flyvbjerg, B. (2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219–245. https://doi.org/10.1177/1077800405284363
- Isik, A. T., Soysal, P., Solmi, M., & Veronese, N. (2019). Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer’s disease: A narrative review. International Journal of Geriatric Psychiatry, 34(9). https://doi.org/10.1002/gps.4965
- Kerr, M. E., & Murray, B. (1988). Amily evaluation: An approach based on Bowen theory. New York: W.W. Norton and Company. The Murray Bowen Archives Project. https://murraybowenarchives.org/books/family-evaluation/
- Kramer, B. J. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 37(2), 218–232. https://doi.org/10.1093/geront/37.2.218
- Liu, S., Li, C., Shi, Z., Wang, X., Zhou, Y., Liu, S., Liu, J., Yu, T., & Ji, Y. (2017). Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer’s disease caregivers in China. Journal of Clinical Nursing, 26(9-10), 1291–1300. https://doi.org/10.1111/jocn.13601
- Manzini, C. S. S., & Vale, F. A. C. do. (2020). Emotional disorders evidenced by family caregivers of older people with Alzheimer’s disease. Dementia & Neuropsychologia, 14(1), 56–61. https://doi.org/10.1590/1980-57642020dn14-010009
- Mayo Clinic. (2023, August 30). Alzheimer’s disease. Mayo Clinic; Mayo Foundation for Medical Education and Research (MFMER). https://www.mayoclinic.org/diseases- conditions/alzheimers-disease/symptoms-causes/syc-20350447
- Pelham, V. (2023, June 14). How to help a loved one with alzheimer’s or dementia. Cedars-Sinai. https://www.cedars-sinai.org/blog/how-to-help-a-loved-one-with-alzheimers-or- dementia.html
- Phillips, R., Durkin, M., Engward, H., Cable, G., & Iancu, M. (2022). The impact of caring for family members with mental illnesses on the caregiver: a scoping review. Health Promotion International, 38(3). https://doi.org/10.1093/heapro/daac049
- Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250–267. https://doi.org/10.1037/0882-7974.18.2.250
- Pollard, R. (2022). Family systems theory | Definition, concepts & examples. Study.com. https://study.com/learn/lesson/family-systems-theory.html
- Ponsoda, J. M., & Diaz, A. (2024). Psychological distress in family caregivers of people with Alzheimer’s disease: Positive and negative aspects of caregiving. Deleted Journal, 0(0), 3145–3145. https://doi.org/10.36922/ghes.3145
- Psychology today. (2023). Psychology Today Canada: Health, help, happiness + find a therapist CA. Psychology Today. https://www.psychologytoday.com pubhtml5.com. (n.d.).
- Creswell and Poth, 2018, Qualitative Inquiry 4th. Pubhtml5. Retrieved July 5, 2024, from https://pubhtml5.com/enuk/cykh/Creswell_and_Poth%2C_2018%2C_Qualitative_I nquiry_4th/#google_vignette
- Quinn, C., Clare, L., & Woods, R. T. (2009). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review. International Psychogeriatrics, 22(01), 43. https://doi.org/10.1017/s1041610209990810
- Rodero, E., Mas, L., Larrea, O., Rodríguez-de-Dios, I., & Carme de-la-Mota. (2023). The relevance of communication between Alzheimer’s patients and their caregivers. Effective prosody strategies to improve communication. Health Communication, 1–14.
- Stake, R. E. (1995). The art of case study research. Sage Publications. https://www.academia.edu/121899831/Robert_E_Stake_The_Art_of_Case_study_Re search_Sage_Publications_1995_1_
- Sutter, M., Perrin, P. B., Chang, Y.-P., Hoyos, G. R., Buraye, J. A., & Arango-Lasprilla, J. C. (2013). Linking family dynamics and the mental health of Colombian dementia caregivers. American Journal of Alzheimer’s Disease & Other Dementiasr, 29(1), 67–75. https://doi.org/10.1177/1533317513505128
- Tandon, R., & Keshavan, M. S. (2019). Asian psychiatry and the Asian journal of psychiatry. Asian Journal of Psychiatry, 43, A1–A2. https://doi.org/10.1016/j.ajp.2019.07.032
- Team, B. E. (2017, September 17). What is the Bowen theory and how is it used in family therapy? | BetterHelp. Betterhelp.com; BetterHelp. https://www.betterhelp.com/advice/therapy/what-is-bowen-family-systems-theory
- The Bowen Center. (2021). Introduction to the eight concepts. The Bowen Center for the Study of the Family. https://www.thebowencenter.org/introduction-eight-concepts
- Unicity Healthcare. (2018, August 17). The effects Alzheimer’s disease has on family members and caregivers - Unicity Healthcare. Unicity Healthcare. https://unicityhealthcare.com/effects-
- Vu, M., Mangal, R., Stead, T., Lopez-Ortiz, C., & Ganti, L. (2022). Impact of Alzheimer’s disease on caregivers in the United States. Health Psychology Research, 10(3), 37454. https://doi.org/10.52965/001c.37454
- Walsh, F. (2015). Strengthening Family Resilience (3rd ed.). New York The Guilford Press. - References - Scientific Research Publishing. (2015). Scirp.org. https://www.scirp.org/reference/referencespapers?referenceid=1787091
- World Health Organization. (2022). https://www.alzint.org/what-we-do/partnerships/world- health-organization/
- Yin, R. K. (2018). Case study research and applications Design an.docx. (2023, January 5). SlideShare. https://www.slideshare.net/slideshow/yin-r-k-2018-case-study-research- and-applications-design-andocx/255153005.
- Zarit, S. H., & Femia, E. E. (2010). A future for family care and dementia intervention research? Challenges and strategies. Aging & Mental Health, 12(1), 5–13. https://doi.org/10.1080/13607860701616317