Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

Abstract

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer’s disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers’ perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.

The enduring self: personhood, autonomy and compassion in the context of community-based dementia daycare centers

“…Since our study was among staff at daycare centers, our findings about personhood and autonomy may be somewhat different than that reported in nursing home settings (e.g. [39,40]). …”

Family dynamics in face of Alzheimer's in one of its members

“…Moreover, the other family members may lack in interest for care, aggravating the physical and psychological burden of the primary caregiver. This situation may lead to clinical pictures of depression, anxiety, fear, frustration, stress and consequently the use of various drugs, particularly psychotropic (10) . The burden and the difficulty of accepting the disease can take on characteristics of the anticipatory grieving process experienced by the family, starting in the diagnostic stage of AD and in the losses of concrete aspects such as health, memory and removal from the usual routine, along with subjective aspects, such as the loss of autonomy, the anxiety and anguish (11) .…”

“…This worsening was reported by relatives as a process marked by pain, discomfort and suffering. It also caused the emergence of a sense of guilt on the family member, as well as remorse and the feeling of helplessness for not being able to prevent the episode or reduce the patient's suffering (10) . The perception of the physical presence of the family member with AD, but his/her psychological or emotional absence leads the person to not present the characteristics that once made him/her recognize him/herself as the one he/she used to be -the same happening with the role and function in the family (9) .…”

Skeuomorphic Reassurance: Personhood and Dementia

“…A common misconception of dementia -that as the mental processes gradually collapse an individual's 'personhood' also vanishes -has long been challenged in the medical literature (Jenkins & Price, 1996;Tapen et al 1999;Kontos 2005;O'Connor et al 2007;Fazio et al 2009;Palmer, 2013;Hunter et al, 2013;Kaufmann & Engel, 2014;). Others challenge the stigma against older people even more broadly, at the same time welcoming the deconstruction of 'senility', in the 70s and 80s, as a treatable disease (Alzheimer's as the most common among many) and yet pointing out how the public information campaigns concerning Alzheimer's have heightened, not lessened, the stigma, through generating even more fear than the less-well defined condition of senility ever did (Ballenger 2006).…”

“…There are numerous examples in the literature of unsafe, dehumanizing and disrespectful behaviour toward people with dementia (PwD), which deny personhood (Bernoth et al 2014;Palmer 2013). For instance, Palmer (2013, p. 226):…”