“Like Death is Near”: Expressions of Suicidal and Homicidal Ideation in the Blog Posts of Family Caregivers of People with Dementia

Abstract

Background: The challenges of providing care for someone with Alzheimer’s disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. Methods: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. Results: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. Conclusions: The results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.

A Netnographic Approach: Views on Assisted Dying for Individuals With Dementia

“…Laws in most jurisdictions, on the contrary, neither allow an assisted death for incompetent patients nor recognize an advance directive request for an assisted death. This situation has left people frustrated with some of the options they have at the most vulnerable stage of their life—one of which is to withhold life-prolonging treatments and/or nutrition/hydration (The et al, 2002), to access assisted dying prematurely while they are still competent and living a quality life (de Beaufort & van de Vathorst, 2016; Legemaate & Bolt, 2013), or, for some, to commit suicide to avoid dying with dementia (Anderson, Eppes, & O’Dwyer, 2019; O’Dwyer et al, 2016).…”

“…The implications of dementia for individuals, families, and caregivers have been increasingly investigated (Anderson, Eppes, & O’Dwyer, 2019; Oh et al, 2019; Prorok et al, 2013). Studies show that dementia affects not only a person’s abilities and quality of life, it also disrupts the well-being of caregivers, family, relatives, and friends who witness the gradual decline of their loved one (Frankish & Horton, 2017; Georges et al, 2008; Livingston et al, 2017; Oh et al, 2019).…”

“At the End We Feel Forgotten”: Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

“…No blogger requested not to participate, while two bloggers responded positively and were pleased to be included. For additional information about the methods to address ethical aspects see the publications by Anderson and colleagues (2017, 2019a, 2019b).…”

“…Caregivers are increasingly seeking health-related information, resources, and social support through various online, web-based formats including web logs or blogs (Anderson, Eppes, & O’Dwyer, 2019a; Heilferty, 2018; Kannaley, Mehta, Yelton, & Friedman, 2018). Blogs are online diaries or journals in which people share rich information about their experiences, feelings, and relationships, and offer advice to others (Anderson et al, 2019a; Heilferty, 2018). Many bloggers write for several years, resulting in narratives that offer a unique, longitudinal perspective.…”

“…As such, the content of illness blogs is determined solely by the narrator and focused on experiences of great personal significance or for making sense of their situation (O’Brien & Clark, 2012). To date, only a few publications have reported analyses of blogs from dementia caregivers (Anderson et al, 2019a; Anderson, Hundt, Dean, Keim-Malpass, & Lopez, 2017; Anderson, Hundt, Dean, & Rose, 2019b). However, these narratives provide a rich, unique source of data for understanding the caregiving experience.…”