Family caregivers’ role implementation at different stages of dementia

Abstract

Purpose

The purpose of this study was to explore family caregivers’ role-implementation experiences at different stages of dementia.

Patients and methods

For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers’ dementia.

Results

Family caregivers’ caregiving activities were related to patients’ stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems.

Conclusion

This study’s results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia.

Keywords:

• behavioral problem
• illness trajectory
• role strain
• caregiving activity
• preparedness

Acknowledgments

We would like to thank the nurses and doctors in the neurological clinics of Chang Gung Memorial Hospital for referring participants in this study. We would also like to thank Professors Patricia G Archbold and Barbara J Stewart for their assistance in developing the instruments, designing the study, and providing insight during the research process. A special thanks to the people with dementia and their family caregivers for participating in this study. This study was supported by the National Science Council, Taiwan (NSC 93-2314-B-182-068 and NSC95-2420-H-182-002-KF); Chang Gung Medical Foundation (CMRPD1B0332); and Ministry of Education, Republic of China (Taiwan) (EMRPD1D0261).

Author contributions

Huei-Ling Huang was responsible for study concept and design, instrument development, data entry and analysis, interpretation of data, and preparation of the manuscript. Yea-Ing L Shyu was responsible for study concept and design, interpretation of data, and preparation of the manuscript. Min-Chi Chen was involved in analysis and interpretation of the data analysis and preparation of the manuscript. Chin-Chang Huang, Hung-Chou Kuo, Sien-Tsong Chen, and Wen-Chuin Hsu were involved in recruitment of subjects, data collection, and preparation of the manuscript.

Disclosure

The authors report no conflicts of interest in this work.

Supplementary materials

Table S1 Analysis of covariance of caregiving activities

Table S2 Analysis of covariance for caregivers’ role strain