Keeping Things in Balance: Family Experiences of Living With Alzheimer's Disease

Historically, research, practice, and policy on Alzheimer's family care has been largely focused on dyadic relationships and the experience of burden and stress, often failing to capture the complex caring dynamics as they unfold over time. This study sought to develop a more nuanced understanding of how people with Alzheimer's disease (AD) and their families are affected by the disease and how they respond to the challenges AD poses.

Using constructivist grounded theory, the study explored the experiences of living with AD for native Spanish families residing in Navarra. Data were collected from a series of 26 interviews with seven family units living with early stage AD and further validated with three focus groups with 14 caregivers of people with mid/advanced AD. Data were analyzed to capture the main processes involved and charted how these evolved over time.

Keeping things in balance describes the way family works to preserve a balance between caring and their lives before the onset of AD. Three main temporal stages to the experience of early AD, along with their associated processes, were identified: (a) what's going on here and the processes of noticing, suspecting, and confirming; (b) our life is changing underpinned by the processes of watching and redefining; and (c) keeping things together and its associated balancing process. These reinforced the dynamic nature of living with AD over time.

This study was novel in its design as it included the person with AD as part of the functioning family unit. The temporal stages and the key social processes identified have the potential to inform the development of "stage-specific" interventions for the support of the whole family at various points in time.