Assessing the Cultural Characteristics of Elders and Their Support Systems (ACCESS): Pilot Study

The recent advent of diagnosing Alzheimer’s in the earliest stages renders a growing population of individuals who are capable of expressing their experiences.  Yet much of the existing biomedical research, opinions, and attention remains situated within a discourse of loss, which assumes that everyday interaction is no longer of interest or relevant to those diagnosed and that providing care is primarily a burden.  Further, the research on informal care giving focuses almost exclusively on mediating the negative consequences of being a support person, the financial burdens, and long-term care placement decisions.  Despite the impressive surge to counter such depictions, this pejorative view exacerbates the divide between diagnosed individuals and their support persons.  The ACCESS (Assessing the Contextual Characteristics of Elders and their Support Systems) project is an exploratory study of the practices, perceptions, and health behaviors related to the experiences of living with Alzheimer’s and being a support person.  This qualitative project has three objectives:  1) to examine the potential differences in experiences of living with Alzheimer’s, 2) to explore any possible differences in perceptions of being a support person, and 3) to assess the relationships between race/ethnicity and health beliefs and/or behaviors.  A comparison of how diagnosed individuals and those who support them conceptualize Alzheimer’s, manage their situations, and envision the experiences of their counterparts will be undertaken.  Conceptualizing health not in terms of a dichotomy between “independence” and “dependence” but existing on a continuum from self-care to full assistance from others is proposed to highlight the crucial transitory period of “negotiated” care.  Identifying potential changes in health practices and behaviors that occur during this stage is vital to disseminating health consequences, both physical and psychological, that potentially result from these care transitions.  The proposed pilot study will allow subsequent research to track the multifaceted determinants of health longitudinally.