'Keeping Things in Balance’: Family Experiences of Living with Alzheimer’s Disease. A Constructivist Grounded Theory Study

Resumo

Alzheimer’s disease (AD) is a chronic and incurable condition that results in progressive cognitive decline and increasing dependence for the affected individual. However, its impact is not limited to the individual but extends to the family who usually have a fundamental role in providing support. Traditionally research and policy on Alzheimer’s family care has been largely focused on dyadic relationships and the experience of burden and stress, providing little understanding of the complexity and reciprocity of the caring dynamic within the family unit as it unfolds over time. Adopting a family systems approach and a constructivist grounded theory methodology this study explored the experiences of living with AD for native Spanish families. Data were collected from a series of 26 interviews with seven family units living with early stage AD and three focus groups with 14 caregivers of people with mid-advanced AD. Data were analysed to capture the main processes involved and charted how these evolved over time. Three main temporal stages to the early AD experience were identified termed ‘what’s going on here’, ‘our life is changing’ and ‘keeping things together. These developed in an iterative rather than linear fashion. This model and the processes that shape the experience (‘noticing’, ‘watching’, redefining’ and ‘balancing’) reinforce the evolutionary and dynamic nature of living with early AD. The data strongly suggested that the nature and quality of existing family relationships and interactions are significant factors influencing the experience of AD for all members. The findings highlighted the impact that AD has on family dynamics and how these shape family responses to living with this condition. Some family dynamics were and remained close, others had always been and remained conflicting, some dynamics remained constant whilst others changed. A major finding of the study was the lack of professional support that all families experienced leaving them ‘feeling abandoned’. The study provides valuable new insights into the nature of family relationships when living with AD, the impact the condition has on family dynamics and the ways in which family works to keep things in balance in the face of uncertain and constantly evolving challenges. Implications for policy, practice, education and further research are considered.