Modeling a Dynamic Decision Process: Supporting the Decisions of Caregivers of Family Members with Dementia

Abstract

One contributor to caregiving burden is the stress of making decisions. Family caregivers need support to consider and implement decisions. Support is likely to result in informed decisions and decreased guilt. The purpose of the study described in this article was to understand the decision processes of family caregivers of people with dementia using a multiple case study approach that would result in a model of their decision processes, with emphasis on support needs. The proposed model, based on control theory, charts the caregiving experiences over time and documents decisions made to maintain tolerable situations. This model is the first step toward developing interventions to provide the support needed to take on the role of decision maker, plan for the future, and make informed decisions.

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 ...…”

“…Collaborating with staff helped carers with the process of deciding when to place their relative into a care home (Heinrich et al, 2003) and where carers felt involved in decision-making, this was facilitated by a trusted healthcare professional who consulted them and advocated effectively (Walker and Dewar, 2001). Torke et al (2013) asked a focus group of USA carers about decision-making around cancer screening for people with dementia.…”

Social Representations of Barriers to Care Early in the Careers of Caregivers of Persons With Alzheimer's Disease

“…These include social attitudes, beliefs, values, norms of obligation, and traditions, although Lack of information on disease (Boise et al 1999;Clark, Chaston, and Grant 2003;Kuhn and Mendes de Leon 2001), lack of knowledge (Mahoney et al 2005) Family conflict, longdistance caregiving (Morgan 2002), stigmatization (MacRae 1999; Mahoney et al 2005; Morgan et al 2002), reduction of social interaction within the network and deficiency in comparative judgment (Clare 2002) Normal aging, overwhelmed by the situation (Boise et al 1999), normalization or minimization (Clare 2002;Morgan 2002), situational reasons, denial (Clare 2002;Coudin 2004), symptoms attributed to other illness, fear of the unknown (Clark et al 2003). Representations of dementia held within the general social and cultural environment (Clare 2002) Lack of availability (Beisecker et al 1996;Brodaty and HadziPavlovic 1990), lack of access to trained physician (Connell and Gallant 1996), inconvenient service hours (Neufeld et al 2002), failure to recognize Alzheimer's disease (Mahoney et al 2005), service not coping with specific stage (Goldsilver and Gruneir 2001) Initial contact with services made with difficulty (Clark et al 2003), lack of competence, care recipient reluctance (Brodaty et al 2005), conflict or lack of trust with professionals (Beisecker et al 1996;Pedlar and Biegel 1999), social stigma ) Perception that the ill relative is not ready (Goldsilver and Gruneir 2001), guilt Wackerbarth 1999) Family obligations and responsibilities (King et al 1995;Nick and Douglas 1991), social role expectations …”

The social construction of risk by community psychiatric nurses and family carers for people with dementia

“…The second approach has examined the experience of carers over time. These studies have identi ed various stages associated with the process of giving care to a close relative who has dementia (Wuest et al, 1994;Wackerbarth, 1999). However, all these approaches are problematic because they fail to take account of the social and discursive construction of caregiving (see Adams, 1998).…”