Prior research has found that caregiving for a spouse with dementia takes a toll on marital satisfaction. In the present study, we extended this work by examining marital satisfaction and the use of emotional language and by including both AD and FTD patient-caregiver couples.
As hypothesized, we found that FTD couples had lower levels of marital satisfaction than AD and control couples. We believe this finding reflects the fact that the behavioral and emotional symptoms of FTD (e.g., apathy, disinhibition, lack of empathy) are particularly destructive for the marital bond. We had also hypothesized that dementia patients would report higher levels of marital satisfaction than caregiving spouses. We found no evidence of this for either patient group. If we assume that the caregiving spouse’s rating of marital satisfaction is accurate, then FTD patients may be more aware of relationship quality than they are in other interpersonal domains such as personality change48
and awareness of others’ emotions.24
We did not find evidence supporting the observation that AD patients minimize marital problems compared to their spouses.49,50
However, in the population we studied, marital satisfaction was relatively high in AD couples. Thus, there may not have been a great deal of dissatisfaction for AD patients to minimize.
As hypothesized, FTD caregivers used more negative emotional language than AD and control caregivers during a social interaction. Within dementia couples, caregivers – particularly FTD caregivers – used more negative words than their patient spouses, but no such differences were found for control couples. Importantly, these differences were found after controlling for dementia severity. Negative emotion has been strongly associated with poor marital outcomes in studies of non-patient couples at all ages.60,61
Thus, these findings involving negative emotional language provide a new window onto the difficulties that FTD causes for the marriage.
Our hypothesis that we would find a lack of positive emotional language in FTD couples was not supported. This may reflect the marital interaction task we used, which focused on an area of marital conflict and, thus, does not elicit a great deal of positive emotion.60
The question of whether there are deficits in positive emotional language in dementia couples could be profitably revisited in a future study using a discussion topic that is more conducive to the expression of positive emotion.
Taking the marital satisfaction and emotional language findings together, the lower marital satisfaction reported by both spouses and the greater use of negative emotional language by caregiving spouses in FTD couples underscores the profound impact that FTD has on the marriage. The discrepancy between marital satisfaction and emotional language in the FTD patients (i.e., they report lower marital satisfaction but do not use greater negative emotional language) points to one of the subtle challenges of dealing with FTD patients. In these patients, declines in cognitive, social, and emotional functioning may proceed at different rates,17,19,20,62,63
resulting in inconsistencies that are disturbing for their partners (e.g., accurate assessment of marital distress that is not reflected in the use of negative emotional language).
The burden associated with caring for a family member with AD has been extensively documented2,64,65
and clearly is extremely taxing for caregivers. However, our finding that AD couples reported similar levels of marital satisfaction and used similar amounts of negative emotional language to control couples suggests that AD may burden, but not erode, the marital relationship. This conclusion is further supported by the mean marital satisfaction scores in AD couples (adjusted mean = 117.92), which are in the range indicative of satisfied marriages, compared to those of FTD couples (adjusted mean = 88.22), which are in the range indicative of dissatisfied marriages.
Why might this be? We believe that when a loved one loses the ability to be empathic and to connect emotionally, as in FTD,18,24
caregivers are likely to become frustrated, hurt, and angry, and that relationship satisfaction will decline. In contrast, when a loved one starts to forget things and forget people and becomes increasingly confused, but still maintains the ability to be empathic and to connect emotionally, as in AD,66
caregivers are likely to experience sadness and grief, combined with more positive emotions such as affection, sympathy, and love. Consistent with this, despite caregiving stress and burden, AD caregivers have reported feeling as close, if not closer, to their patient spouses than before the illness.3,6
Limitations and Future Directions
As noted earlier, the present study expanded on the existing literature on dementia and marriage by measuring both marital satisfaction and the use of emotional language during marital interaction and by including two kinds of dementia. Because we examined relationship satisfaction and the use of emotional language at a particular moment in time, however, we were limited in our ability to characterize the longitudinal relationship and interactions between increasing dementia severity and changes in the marriage.67
Further, our dementia couples were recruited from a tertiary care specialty clinic; thus, we do not know if our results would generalize to dementia patients and caregivers in the population at large.68,69
Our findings of differences in marital satisfaction and negative emotional language in FTD and AD couples point to the importance of considering interventions that target the difficulties specific to each form of dementia. Dementia caregiver intervention research has made great strides in developing theoretical models, testing a range of therapeutic approaches, and demonstrating successful burden reduction in a number of domains.65
However, the bulk of this research has been focused exclusively on AD caregivers. Future work is needed that includes FTD patients and their caregivers and that takes into account the particular difficulties that FTD symptoms create for relationships.
This study underscores the profound challenges that FTD creates for couples, highlighting the lowered relationship satisfaction and increased negative emotional language associated with the disease. Caring for a loved one suffering from a neurodegenerative illness is difficult and painful regardless of the particular disease. Providing this care in FTD, when the patient begins to lose the capacity for emotional responsivity, empathy, self-awareness, and social appropriateness, may be particularly damaging to the marital bond.