The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia

Abstract

Globally, systems have invested in a variety of dementia care programs in response to the aging population and those who have been diagnosed with dementia. This study is a qualitative secondary analysis of interview data from a larger study investigating stakeholder perceptions of programs that support caregivers and people living with an Alzheimer's Disease or Alzheimer's Disease-related dementia (AD/ADRD) in five North American jurisdictions. This study analyzed interviews with individuals living with an AD/ADRD and caregivers of individuals living with an AD/ADRD (n = 11). Thematic analysis was conducted to understand how the perception of dementia may have shaped their engagement and experience with healthcare systems. Our analysis resulted in three main themes of care users’ experience: (i) undesirable experience owing to the overarching negative shared understanding and stereotyping of dementia; (ii) dismissal throughout disease progression when seeking health and social care support; and (iii) dehumanization during care interactions. The findings carry critical social and clinical implications, for example, in informing person-centered approaches to care, and communication tools clinicians can use to enhance provider, patient, and caregiver well-being.