Guilt experienced by caregivers to individuals with dementia: A concept analysis

Abstract

Aim:To create a comprehensive understanding and definition of guilt in caregivers of individuals with dementia. Through this concept analysis, we hope to empower nurses to more accurately identify guilt in caregivers and tailor interventions to specifically reduce these symptoms of guilt.Background: Individuals with dementia are often cared for by relatives, friends and neighbours. Many caregivers express feelings of guilt, increasing the risk of depression and psychological burden. In turn, this impacts their availability to render care.Design: Concept analysis according to Walker and Avant (Strategies for theory construction in nursing. Boston, MA: Prentice Hall; 2011). Method:A literature search was completed utilising the following databases Cumulative Index to Nursing and Allied Health, PubMed, PsycINFO and Google Scholar for the years 2003-2017. Common definitions and lay usage were also considered. Results: The identified critical attributes of guilt experienced by caregivers to individuals with dementia include the following: (a) The expectation of a moral responsibility to care for the individual with dementia; (b) a negative, subjective appraisal of one's own caregiving performance, including neglecting other roles and responsibilities and self-neglect; and (c) a sense of transgression or violation of a moral standard as a caregiver to the individual with dementia. These defining attributes were then applied in three cases: model, borderline and contrary. Pertinent antecedents and consequences to the concept of guilt in caregivers to individuals with dementia were identified.Discussion: As a result of the guilt, the caregiver may experience poor mental and physical health, symptoms of anxiety and depression, and a greater sense of caregiver burden. Conclusion:A new, comprehensive conceptual definition of guilt in caregivers to individuals with dementia is described. Implications for practice: A conceptual definition of guilt in caregivers of individualswith dementia allows nurses to assess and identify caregivers at risk for, or currently experiencing, guilt and help direct caregivers to appropriate interventions and supportive services. K E Y W O R D Scaregivers, concept analysis, dementia, guilt, nursing

Supporting dementia family carers in balancing compassion for others with compassion for self.

“…The grief that family carers experience is often accompanied by the feeling that they have lost some of their own sense of self and identity, which is often defined and recognized through one’s role as a spouse, son, or daughter in the family matrix (Lynch, 2018; Lynch et al, 2018; Monin et al, 2015; Todres & Galvin, 2006). When the weight of distress becomes too great, the carer may begin to harbor resentment (Prunty & Foli, 2019). Feeling “trapped” in the caregiving role can evoke a deep sense of frustration, and the desire to distance oneself can exacerbate one’s guilt (Leszko et al, 2020; Martin et al, 2006).…”

Accessing community dementia care services in Ireland: Emotional barriers for caregivers

“…Caregiver guilt is well documented (Feast et al, 2017;Prunty & Foli, 2019), while the exploration of the influence of guilt on CBS use is limited. In those interviewed, an uneven distribution of care was common, with most of the responsibility falling to a single person who often had a close relationship with the person with dementia (parent, spouse, close friend).…”

Exploring the fruitful darkness of liminality: informal caring for elderly family members and the impact on the self

“…There are also respite facilities provided by local authorities (Leonard, R., Horsfall, D., Noonan, K., and Rosenberg, J. 2017), however, there is significant guilt in informal carers' ability to care (Prunty and Foli, (2019) difficulty in accessing these facilities (Phillipson, et al, 2019). However, with both formal and informal care provision there is a view that for end of life care, remaining in the home is the best option for the cared for (Horsfall et al, 2017).…”

“…Sometimes I just want to run away. There were feelings of frustration and the sensation of being trapped by their caring role, a role from which there was no escape as she could not wish for the inevitable to happen sooner, again reflecting the guilt of the informal carer (Prunty, et al, 2019).…”