Deciding on Institutionalization for a Relative with Dementia: The Most Difficult Decision for Caregivers

Abstract

The decision to move a family member with dementia to a nursing home is a difficult experience for caregivers. Complex psychosocial factors are involved and knowledge of predictive factors alone is insufficient. Using grounded theory, this study explores the decision-making process with regards to institutionalization, from the perspective of family caregivers. Fourteen people who moved a relative to long-term care in the preceding 6 months were interviewed. Data analysis using comparative analysis and line-by-line dimensional analysis was used to develop a theoretical model of the decision-making process. Three factors within the model were central to the process: (a) caregivers' perceptions of their ability to provide care, (b) caregivers' evaluations of their relatives' ability to make care decisions, and (c) the evolving influence of contextual factors and interactions with healthcare professionals. The contribution of these findings to new conceptualizations of institutionalization is discussed.

How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings

“…This way of involvement was recognized in altogether eight articles (Adams, 2006;Caron et al, 2006;Ducharme et al, 2012;McDonald, 2010;Smebye et al, 2012;Tyrrell et al, 2006;Wolfs et al, 2012;Elliot, 2009). These studies provide illustrations of decisions made in agreement by family caregivers and people with dementia, such as people with dementia being " …'open' to the idea of being placed, having realized that his/her living environment was no longer adequate" (e.g.…”

A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia

“…Carers report a shift in the dynamic to a "mother/child" type relationship and Table 4. Summary of triggers, barriers, and facilitators to decision-making (Butcher et al, 2001;Ducharme et al, 2012) Desire to honor person with dementia's wishes (Elliott et al, 2009) Family and professionals perspectives (Livingston et al, 2010;Ducharme et al, 2012) Carer unable to cope and care/ deterioration in carer health (Cohen et al, 1993;Caron et al, 2006;Ducharme et al, 2012) Emotional impact (anguish, burden guilt) (Butcher et al, 2001;Livingston et al, 2010) Support from others once decision made (Butcher et al, 2001) Change in living environment (Caron et al, 2006) Resistance from person with dementia (Livingston et al, 2010;Chrisp et al, 2012;Wolfs et al, 2012;Chrisp et al, 2013) Relationship to person with dementia (Wackerbarth, 1999) Person with dementia's ability to make decisions (Caron et al, 2006) Barriers to accessing services/lack of support/information (Wackerbarth, 1999;Butcher et al, 2001;Livingston et al, 2010) Adapting caring role following a decision (Kwon and Tae, 2012) Cultural treachery and distress (Chang and Schneider, 2010;Chang et al, 2011;Kwon and Tae, 2012) Collaborating with healthcare professionals (Walker and Dewar, 2001;Heinrich et al, 2003;Torke et al, 2013) Role change to "mother/child" (Cairns, 2012) Mild to moderate dementia severity (Smebye et al, 2012) Knowing when the "right" take to ...…”

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

“…1,2 Informal caregivers may experience adverse effects when confronted with treatment decisions for others. 3 Feelings of guilt, doubt, sadness, failure and betrayal (of marital commitment) are reported by informal caregivers of people with dementia in circumstances of decision making, such as the need for institutional long-term care.…”

“…Since informal caregivers have an important voice in the process of admitting their relative with dementia to institutional long-term care, 1,11 they are a valuable source of information regarding reasons for institutionalization.…”