Living and loving: adaptive experiences of caregiving to a spouse with Alzheimer's disease in Shanghai, China

This qualitative study is an attempt to explore the adaptive experiences of elderly Chinese caregivers who have to take care of their spousal partners who are suffering from Alzheimer’s disease (AD). As the illness is known to be chronic and degenerative in nature, caregivers are thus faced with many stressful situations and adjustments are necessary. The purpose of this study is to examine how these caregivers in AD situations are interpreting the factors that might have influenced their adjustments. The sample consists of 26 participants aged 60 and above that have been a primary caregiver for not less than a year. Three in-depth interviews were conducted with each participant during the study period, which lasted for about two years. Findings show that most of them had to adjust to stressful situations in various aspects of life. They also developed many strategies for life adaption, which can be summarized in the following six adjustment themes. First, after hearing the AD diagnosis, they initially experienced a series of shocks and false hopes, and subsequent adjustments include eliminating uncertainty, establishing reasonable expectations toward both the disease and treatment, learning to take on the caregiver role, and finally, separating the disease from their partner’s personality. Second, these elderly caregivers gradually learned to attain inner peace through converting to various religions, searching for meanings within their stressful situations, and reconstructing rational explanations for their negative emotions. Third, in the area of spousal interaction, adaptive strategies included staying connected with their sick partners, reinforcing their caregiving motivations, completing the “familiar-strange-familiar” cycle, and re-establishing daily routines. Fourth, in situations involving other family members, such as adult children, the adjustment strategies included sharing economic burdens, re-allocating housework chores, delegating care responsibilities, and emotionally supporting one another. Fifth, in terms of social network, the main support that caregivers received usually came from informal sources; formal support is extremely limited. Findings further show a connection between the input and output of social support and personal capacity. Sixth, elderly spousal caregivers often possessed the ability to re-position and re-construct their self-confidence while adjusting to their new life rhythm. They were also able to achieve a balance between their private lives and their care responsibilities, which helps to maintain their well-being and neutralize their distresses. In summary, participants of the study often utilized more than one strategy in adjusting to their situations. The six aspects of adjustments are thus put together in this study as an integrated model of life adaptation and survival tactics adopted by elderly Chinese AD spousal caregivers. Also, whether these caregivers are successful in adapting depends on their abilities to accept changes in themselves and their environment, and achieve a compromise between the two. Based on the above findings, a culturally sensitive perspective is thus put forward to enhance the understanding of studied phenomenon within the contemporary Chinese context. Recommendations are also made regarding the needed policy changes and the revisions of social work practices in support of the elderly suffering from AD and their caregiving spouses.published_or_final_versionSocial Work and Social AdministrationDoctoralDoctor of Philosoph