Becoming strangers: the changing family caregiving relationship in Alzheimer's disease

Abstract

Alzheimer-type dementia (AD) is an insidious pervasive debilitating disorder that destroys the affected person's capacity for self-care. In this grounded theory study, we explored the reciprocal process of becoming strangers in which eastern Canadian family caregivers and care recipients with AD interact on a continuum from intimacy to alienation through dimensions of dawning, holding on and letting go. The findings illuminate the experiences of family members who struggle on a daily basis with their commitment to the person they knew and their increasing detachment from the stranger that person has become. With the increasing emphasis on home care, these findings offer insights for individual care and health policy development.

Tactful Monitoring: How Thai Caregivers Manage Their Relative with Schizophrenia at Home

“…Like other studies we found that family caregivers face caregiver burden, caregiver reactions, and caregiver strain (Brady & McCain, 2005;Given et al, 1992;Hunt, 2003;Jones, 1996;Maurin & Boyd, 1990). Wuest's work on caregivers of relatives with Alzheimer's Syndrome seems to have a bearing on this study in that the patients in the present study become strangers for a time, and as in Wuest's studies caregivers developed creative ways of caring for their relative, until they too followed a trajectory ending in a state of exhaustion (Wuest, 2001;Wuest, Ericson, & Stern, 1994. What this study has added to our knowledge is that in the Thai health and religious belief system, care for an ill relative is a given, and that with little professional education, caregivers have developed creative techniques of care.…”

Living with dementia: A systematic review of the influence of relationship factors

“…Four of these included the persons with dementia, either through a joint interview with the carer or through separate interviews. The participants with dementia described three stages: frustration and embarrassment before diagnosis; the diagnosis causing feelings of relief, shock, grief and a wish to withdraw; and a period of time post-diagnosis in which they felt more willing to work with their carers and to sustain the relationship (Blieszner & Shifflett, 1990;Hellstrom et al, 2007;Quayhagen & Quayhagen, 1996;Wuest, Ericson, & Stern, 1994). After the initial post-diagnosis phase, people with dementia and their carers described trying to 'hold on' (Wuest et al, 1994) and 'maintain involvement' (Hellstrom et al, 2007) with the carer increasingly taking over roles previously owned by the person with dementia.…”

“…The participants with dementia described three stages: frustration and embarrassment before diagnosis; the diagnosis causing feelings of relief, shock, grief and a wish to withdraw; and a period of time post-diagnosis in which they felt more willing to work with their carers and to sustain the relationship (Blieszner & Shifflett, 1990;Hellstrom et al, 2007;Quayhagen & Quayhagen, 1996;Wuest, Ericson, & Stern, 1994). After the initial post-diagnosis phase, people with dementia and their carers described trying to 'hold on' (Wuest et al, 1994) and 'maintain involvement' (Hellstrom et al, 2007) with the carer increasingly taking over roles previously owned by the person with dementia. Hirschfeld (1983) found that a continued sense of mutuality in the relationship was the most important factor in determining whether a person would continue to be cared for at home during the later stages of dementia or considered for institutionalisation by the family.…”

“…Wuest et al (1994) 15 carers 11 people with dementia Spouses, children and siblings Grounded-theory interviewing Three stages of relationship change: dawning, holding on and letting go.…”

Ethical implications of the perception and portrayal of dementia

“…Related, though more subtly portrayed perceptions also imply fundamental changes within the person, such as becoming 'a different person ' (Ngatcha-Ribert, 2004;Walters, Oyebode, & Riley, 2010) or 'a stranger' (Basting, 2009;Wuest, Ericson, & Stern, 1994;Walters et al, 2010), or 'losing their sense of self' (Sabat, 2008;McMillan, 2006). Seeing a person with dementia as having turned into a stranger carries implications for issues related to the provision of person-centred care.…”