Our findings add to the literature about the role of a common caregiver emotion, anticipatory grief, and its potential relevance to decision making for family caregivers of older adults with cognitive impairment. In our retrospective analysis of data from 73 relatively new caregivers of patients with MCI or dementia, we found that a majority of caregivers report that they assist the patient with medial decision making. In addition, higher levels of anticipatory grief were associated with a diminished ability to solve problems.
The anticipatory grief and problem solving skills in our sample were higher than in previously published samples. The mean AGS score in our sample of 73 caregivers was 70.1 compared to a previous study that reported a mean score of 61.2 in a sample of 87 family caregivers who had been providing care an average of 6 years since the patient’s dementia diagnosis (Marwit & Mauser, 2005
). This may reflect selection bias and/or sampling variability. Alternatively, it may be related to the patient’s disease stage. It is possible that higher level of anticipatory grief reflect a heightened grief reaction at the earliest stages of AD caregiving, when the family member begins to realize the mild cognitive deficits result in loss of functional independence. Alternatively, the higher anticipatory grief levels in the current study may be due to the caregiving situation and exposure to daily stressors; all of our family caregivers lived with the care recipient while only 31% of the adult-child caregivers and 73% of the spousal caregiver lived with the care recipient in the Marwit & Meuser study (because many of the care recipients lived in nursing homes, assisted living facilities, or other arrangements (Garand, L. et al. 2011
). Studies show that the place of residence significantly impacts anticipatory grief levels in family AD caregivers (Ott CH, et al 2007
). AD caregivers residing with the care recipient face increased exposure to the burdensome aspects of providing care and assistance to a family member with cognitive impairment.
Our sample’s total SPSI-R:S scores were all within what the scale creators call the “norm group average” to “above norm group average” range (D’Zurilla, Nezu, & Maydeu-Olivares, 2002
) and we found significant associations between caregivers’ anticipatory grief and their problem-solving abilities. Analyses of the five scales of the SPSI-R:S revealed that higher levels of anticipatory grief among caregivers are significantly associated with maladaptive problem solving (e.g., higher negative problem orientation scores) and lower anticipatory grief is significantly associated with better problem solving (e.g., lower positive problem orientation scores).
Nezu and colleagues (1998)
define positive problem orientation as an approach to solving problems with an optimistic affect and less of a tendency to avoid a problem or attempt to solve it impulsively. Included in this approach is the ability to accurately identify problems when they occur and to use emotions (i.e. anticipatory grief) and cognitions (i.e. negative thoughts) as cues that a problem exists. Conversely, negative problem orientation measures a dysfunctional emotional-cognitive set. Individuals with higher negative problem orientation scores tend to underestimate their ability to solve problems, experience more distress when confronted with a problem, and are more likely to perform problem solving ineffectively (D’Zurilla, 2002
). Our findings about the relationship between anticipatory grief and problem orientation is important given the frequency that caregivers are faced with problem solving, such as making medical decisions in the presence of strong and sometimes negative emotions. This is especially true among the caregivers in our study who reported making medial decisions for the patient. Among this group we found that higher anticipatory grief is significantly associated with negative problem orientation and which may indicate more distress among these caregivers when confronted with a problem (D’ Zurilla, 2002
Our findings about anticipatory grief and problem solving are in keeping with the results of other studies that have explored the connection between emotions and decision making (Bachara, 2004
; Caron, Griffith, & Arcand, 2005
; D’Zurilla, Nezu, & Maydeu-Olivares, 2002
). The importance of our findings is also based on both the extensive role that family caregivers play in medical decision making for older adults with mild cognitive impairment and their evolving role as a decision maker along the course of the disease when the patient’s impairment becomes more severe. As the patient’s impairment worsens so does the likelihood that caregivers will be called upon to assist in decision making for the patient (Hirschman, Kapo, & Karlawish, 2006
). Information about the role of emotion in problem solving, and in particular, medical decision making, can help guide the creation of decision making interventions that are focused on caregivers of older adults with cognitive impairment along the course of cognitive impairment. These findings suggest that family caregivers of persons with very mild cognitive deficits or a new AD diagnosis may benefit from interventions directly addressing their anticipatory grief in an effort to enhance their positive orientation to problem solving (the extent to which an individual appraises a problem as a challenge rather than a threat) and improve their decision making abilities. It is also possible that the addition of anticipatory grief to conceptual models of health care decision making will help investigators to clarify the manner by which family dementia caregivers’ make such decisions. For example, it would be interesting to determine if an intervention directed at reducing the caregiver’s level of anticipatory grief, early in the disease course and when the role of caregiving is new, positively impacts their decision making ability as their loved one’s cognitive abilities decline.
As indicated in a study by Baumgarten et al. (1992)
, caring for an adult with progressive cognitive impairment caused by dementia may be “one of the most demanding situations that can be encountered” because it includes physical, financial, emotional, and psychological demands (p. 61) and because its “unpredictability, long duration, and ambiguity” can lead to emotional and psychological stress (p. 61). Interventions aimed at reducing the burden and strain of caregivers provide evidence for programs that combine support, counseling and some education can reduce caregivers’ emotional burden and depression (Sorenson et al., 2002
; Hepburn et al., 2001
). Additionally, interventions focused on caregivers problem solving abilities have demonstrated that problem solving interventions are feasible and acceptable to caregivers and can increase caregivers’ problem solving confidence (Demiris et al., 2010
) and reduce their maladaptive and dysfunctional problem-solving styles (Elliot and Berry, 2009
). Given the range of physical and emotional demands involved in caring for patients with cognitive impairment, interventions that are designed to help caregivers solve problems, and participate in or make medical decisions will need to take emotional states into account. The identification of emotional states such as anticipatory grief could be addressed through support and counseling services and acknowledged in tools, such as decision aids, that are intended to aid medical decision making (O’Connor, 2009
Our analysis has several limitations that deserve mention. First, because our sample size was small, had relatively homogeneous sociodemographic characteristics, and because they were regionally recruited from an ADRC associated with a major academic center, our findings may not be generalizable to other groups of caregivers of patients with MCI or dementia. Second, our main outcome measure—problem solving abilities as measured by the SPSI-R:S—may not directly measure the cognitive processes associated with medical decision making. Third, the significant findings from our cross-sectional study do not support causation. While our results indicate significant differences among our variables of interest, further exploration is needed to determine what the score differences on the AGS and SPSI-R:S mean in a real-world clinical setting.
Our findings provide evidence that even relatively new caregivers for patients with MCI or dementia report medical decision making as one of their responsibilities and that anticipatory grief may be associated with the caregivers’ problem-solving abilities. Despite study limitations, the current study points to the importance of considering anticipatory grief in the context of health care decision-making among dementia family caregivers. Our findings suggest that family caregivers of persons with mild cognitive impairment or a new AD diagnosis may be in need of interventions directly addressing issues related to their anticipatory grief.
An understanding of the influence of anticipatory grief, on problem solving and decision making should help researchers, clinicians, and others develop interventions to address the presence of emotions to improve the caregivers’ ability to make medical decisions on behalf of patients with cognitive impairment.