Abstract:

 

     Mild Cognitive Impairment (MCI) is a syndrome defined as a cognitive decline that is more severe than can be explained by an individual’s age and education, but that does not notably intervene with that individual’s activities of daily living. One study in the United States found that MCI caregivers have experienced distress in association with caregiver burden. The prevalence of MCI for people age 65 and older ranges from 3% to 19%. As the number of older people increases in our society, so will the number of persons with MCI and their family caregivers. Understanding the process of family caregiving provides a knowledge base for the health professionals when developing effective interventions. However, little is known about the phenomenon of family caregiving to patients with MCI in Taiwan. In particular, the phenomenon of the longitudinal changes in family caregiving for these patients has never been described, nor have the related interventions been developed. In our prior preliminary cross-sectional study (N = 10) (Kuo & Shyu, 2010), we found that the process most used by family caregivers to adjust to conflicts and changes in their relationship with their elderly family member with mild cognitive impairment was ‘ambivalent normalization.’ Family caregivers who had developed this process were more likely to adopt multiple effective behavioral approaches to avoid conflict in their daily life and to begin outlining future caregiving tasks. However, how the concepts changed as the illness progress and the family caregiving evolved have not been explored. The concepts that emerged in our preliminary study need to be further verified and refined in the longitudinally collected data. Most importantly, how the patterns changed and manifested as the illness progress, and whether these patterns varied along with different illness trajectories and what are the appropriate interventions will need to be further discovered. Therefore, the purpose of the proposed study is to develop a theoretical model and a model-based intervention program for family caregivers of patients with MCI in Taiwan, and pilot test it in a clinical trial.

     This is a three-year research project. During the first two years, this study will use the grounded theory method to develop a theoretical model of the family caregiving process for patients with MCI. Face-to-face interviews together with participant observations will be used to collect the data. All the interviews will be audio-taped and then transcribed verbatim. Ten to fifteen family caregivers of patients who have a confirmed diagnosis of MCI will be recruited from the neurological and psychiatric clinics in a medical center. These family caregivers will be interviewed every 6 months for 2 years in order to explore any changes in the MCI phenomena. The actual sampling strategies and number of interviews will be decided based on the theory that will have emerged and the saturation of the concepts. A constant comparative strategy will be used to analyze the data. Audit trails, peer debriefing, triangulation, prolonged engagement, thick data with theoretical sampling, and member checks will help to increase the overall trustworthiness of the study. In the third year, we will develop an intervention program based on the developed model and conduct a small scale pilot randomized control trial (total N = 30; 15 in each group) to pilot test the intervention program, in order to provide a reference for further formal clinical trial. This study will be able to develop a culturally relevant theoretical model and intervention program for family caregivers of older patients with MCI during the illness trajectory. As such it will be able to provide guidelines for clinical practices in Taiwan.