Abstract
Background: Eighty-three percent of persons with Alzheimer's disease and related dementias (Pw-ADRD) rely on informal caregivers—mainly family and friends—for at-home care. In 2023, over 11 million dementia caregivers provided an estimated 18.4 billion hours of unpaid care, valued at $346.6 billion [1]. Although there is a wealth of literature on the roles of dementia informal caregivers, there is little data on their ability to manage the behavioral symptoms experienced by approximately 90% of Pw-ADRD [1], as well as the resources they utilize for support [2]. These symptoms have been positively correlated with functional and cognitive impairment leading to earlier placement in nursing homes, increased use of emergency services, increased caregiver burden [3]. Studies have shown that non-pharmacological interventions can prevent and manage those symptoms [3-4]. However, significant disparities persist in the quality and accessibility of support to caregivers for at-home care due to the social determinants of health, such as income, education, and healthcare access, which have a significant impact on the quality of care that the caregivers provide and increase their burden [5].
Purpose: To explore the experiences of informal caregivers in relation to sources of knowledge and initiated strategies for managing the behavioral symptoms of dementia.
Method: This was a qualitative phenomenological study. In-depth interviews with 15 consented dementia informal caregivers, The collected data was analyzed using thematical analysis.
Findings: Three key themes were revealed: (1) Managing behavior symtoms challenges, (2) Credibility of online information, and (3) Lack of real-time, personalized support and guidance. Additionally, the findings showed that training programs and support group meetings often require caregivers to memorize and retain information, which can be overwhelming.
Implications: The findings highlight the importance of empowering informal caregivers by providing them 24/7 access to personalized, evidence-based interventions for managing behavioral symptoms. Nursing professionals can play crucial role in offering tailored, easily accessible, round-the-clock information resources and guidance. By addressing the social determinants of health, registered nurses can advocate for improved care systems for underserved populations, ultimately empowering caregivers and enhancing the quality of care for Pw-ADRD.
Notes
References:
1. Alzheimer's Association. (2024). 2024 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
2.Gaugler, E, J. (2022). Unpaid Dementia Caregiving: A Policy and Public Health Imperative, Public Policy & Aging Report, 32(2), 51–57, https://doi.org/10.1093/ppar/prac002
3. Li, Y. Q., Yin, Z. H., Zhang, X. Y., Chen, Z. H., Xia, M. Z., Ji, L. X., & Liang, F. R. (2022). Non-pharmacological interventions for behavioral and psychological symptoms of dementia: A systematic review and network meta-analysis protocol. Frontiers in psychiatry, 13, 1039752. https://doi.org/10.3389/fpsyt.2022.1039752
4. Yin, Z., Li, Y., Bao, Q., Zhang, X., Xia, M., Zhong, W., Wu, K., Yao, J., Chen, Z., Sun, M., Zhao, L., & Liang, F. (2024). Comparative efficacy of multiple non-pharmacological interventions for behavioural and psychological symptoms of dementia: A network meta-analysis of randomised controlled trials. International journal of mental health nursing, 33(3), 487–504. https://doi.org/10.1111/inm.13254
5. Leung, D. K. Y., Wong, K. K. Y., Spector, A., & Wong, G. H. Y. (2021). Exploring dementia family carers' self-initiated strategies in managing behavioural and psychological symptoms in dementia: a qualitative study. BMJ open, 11(8), e048761. https://doi.org/10.1136/bmjopen-2021-048761
Sigma Membership
Alpha Epsilon
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Phenomenology
Research Approach
Qualitative Research
Keywords:
Health Equity or Social Determinants of Health, Public and Community Health, Stress and Coping, Alzheimer's Disease, Dementia, Caregivers
Recommended Citation
Adewuyi, Modupe; Zhang, Xinyue; and Iwuagwu, Lota, "Managing Dementia Behavioral Symptoms: Informal Caregivers’ Experience and Needs" (2025). International Nursing Research Congress (INRC). 175.
https://www.sigmarepository.org/inrc/2025/presentations_2025/175
Conference Name
36th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Seattle, Washington, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Managing Dementia Behavioral Symptoms: Informal Caregivers’ Experience and Needs
Seattle, Washington, USA
Background: Eighty-three percent of persons with Alzheimer's disease and related dementias (Pw-ADRD) rely on informal caregivers—mainly family and friends—for at-home care. In 2023, over 11 million dementia caregivers provided an estimated 18.4 billion hours of unpaid care, valued at $346.6 billion [1]. Although there is a wealth of literature on the roles of dementia informal caregivers, there is little data on their ability to manage the behavioral symptoms experienced by approximately 90% of Pw-ADRD [1], as well as the resources they utilize for support [2]. These symptoms have been positively correlated with functional and cognitive impairment leading to earlier placement in nursing homes, increased use of emergency services, increased caregiver burden [3]. Studies have shown that non-pharmacological interventions can prevent and manage those symptoms [3-4]. However, significant disparities persist in the quality and accessibility of support to caregivers for at-home care due to the social determinants of health, such as income, education, and healthcare access, which have a significant impact on the quality of care that the caregivers provide and increase their burden [5].
Purpose: To explore the experiences of informal caregivers in relation to sources of knowledge and initiated strategies for managing the behavioral symptoms of dementia.
Method: This was a qualitative phenomenological study. In-depth interviews with 15 consented dementia informal caregivers, The collected data was analyzed using thematical analysis.
Findings: Three key themes were revealed: (1) Managing behavior symtoms challenges, (2) Credibility of online information, and (3) Lack of real-time, personalized support and guidance. Additionally, the findings showed that training programs and support group meetings often require caregivers to memorize and retain information, which can be overwhelming.
Implications: The findings highlight the importance of empowering informal caregivers by providing them 24/7 access to personalized, evidence-based interventions for managing behavioral symptoms. Nursing professionals can play crucial role in offering tailored, easily accessible, round-the-clock information resources and guidance. By addressing the social determinants of health, registered nurses can advocate for improved care systems for underserved populations, ultimately empowering caregivers and enhancing the quality of care for Pw-ADRD.
Description
This qualitative phenomenological study explored informal caregivers' experiences in managing dementia behavioral symptoms. In-depth interviews with 15 caregivers were conducted, and the data were analyzed thematically. Three key themes emerged: (1) challenges in managing behavioral symptoms, (2) the credibility of online information, and (3) a lack of real-time, personalized support. There is a need for personalized, evidence-based interventions 24/7 support for informal dementia caregivers.