Development of a brief scale to measure discrete positive emotions in dementia family caregiving: the positive emotions in caregiving scale (PEC-S)

Dementia caregiving has been conceptualized as a chronic stress situation, and research studies have widely analyzed its negative consequences on family caregivers’ psychological and physical health (Schulz et al., 2020). There is robust evidence showing higher levels of burden and depressive and anxiety symptoms in caregivers when family dementia caregivers are compared to the non-caregiving population (Schulz et al., 2020).

However, not all correlates or consequences of dementia caregiving are negative. Although the proportion of studies analyzing positive aspects of caregiving is small compared to those focused on negative consequences, evidence suggests that caregivers also report positive experiences from caregiving, such as personal growth, feeling they were making a difference, or doing their duty (Quinn et al., 2022).

Among the positive emotional experiences for caregivers most studied, the sense of gain or finding benefits and meaning have a prominent role (Autio & Rissanen, 2018). Caregivers’ gains are subjective feelings of satisfaction with the caregiver role and rewarding appraisals of caregiving (Lawton et al., 1991; Parveen & Morrison, 2012), related to experiences of personal development and growth (Kramer, 1997), reciprocity (e.g., Murray et al., 1999), integrity, generativity and others (Fabà et al., 2017). Meanwhile, finding meaning or purpose in caregiving (Farran et al., 1997) is related to feelings of fulfillment and self-actualization. It has been found to be positively related to the quality of the relationship between the caregiver and the person with dementia (PwD) (Archbold et al., 1990; Hellstrom et al., 2007) and inversely with depression and strain (Farran et al., 1999).

Positive aspects of caregiving have been found to be inversely related to caregivers’ distress (e.g., depression; Cohen et al., 2002), as well as to problem behaviors in the PwD, which may hinder caregivers’ ability to perceive and acknowledge the positive sides of their role (Lou et al., 2015). Also, positive aspects of caregiving seem to be positively correlated with the quality of the relationship with the PwD, social support (Liu et al., 2023; Pendergrass et al., 2019), leisure (Mausbach et al., 2011), and self-efficacy (Semiatin & O’Connor, 2012).

Although these studies analyze positive experiences, very few studies have focused on discrete positive emotions experienced by caregivers in their everyday caring experience and in the frame of their relationship with the PwD, such as love, tenderness, or calmness, which are frequently present. In fact, in two comprehensive reviews of the research literature on positive aspects of dementia caregiving experience, the word emotions appears only once, and only to help explain the benefit of finding meaning in stressful situations (Carbonneau et al., 2010; Doris et al., 2018). Even when some works (e.g., Mausbach et al., 2011; Robertson et al., 2007) analyzed the experience of positive affect in dementia caregivers in their everyday life using lists of mood adjectives such as the Positive and Negative Affect Schedule (PANAS; Watson et al., 1988), the specific emotions experienced by caregivers in the context of their everyday relationship with the PwD and their role as caregivers have scarcely been addressed. An exception in this regard is caregivers’ feeling of gratitude, which has been found to be inversely associated with stress, anxiety and depressive symptoms, and positively with adaptive coping styles such as acceptance and seeking social support (Lau & Cheng, 2017; Nah et al., 2022). Also, some researchers have studied the experience of love by dementia caregivers, finding that this emotion is associated with a more positive appraisal of caregiving and less burden and greater compassionate love expressed by the person with dementia (Monin et al., 2015), as well as with less negative affect and higher positive affect and overall well-being (Braithwaite, 1996).

Barring these exceptions, there has been a certain neglect in the study of specific positive emotions experienced in the context of the caregiver’s relationship with the PwD. In fact, the most relevant instruments developed to assess positive experiences, such as the Positive Aspects of Caregiving scale (Tarlow et al., 2004), the Caregiving Satisfaction Scale (Lawton et al., 1989), the Scale for Positive Aspects of Caregiving Experience (SPACE; Kate et al., 2012) or Gains Associated with Caregiving scale (GAC; Fabà et al., 2017) do not include these discrete positive emotions (Wolff et al., 2021). However, the analysis of discrete positive emotions may shed light on our understanding of resilient coping by dementia caregivers and may be key to identifying effective coping strategies that could be taught or potentiated in this population through psychological interventions.

According to the Broaden-and-Build Theory (Fredrickson, 2001), positive emotions such as contentment, love, and gratitude help people to broaden their awareness and behavioral repertoire, facilitating exploratory thoughts and actions that, eventually, help build useful skills and psychological resources. Focusing on dementia caregiving, two main reasons support the relevance of positive emotions. The first is their potential as buffering factors in the stress and coping process, with evidence suggesting that they may help resilient individuals in their ability to recover effectively from daily stress (Ong et al., 2006). Some studies provide evidence supporting this buffering role in the general population and, specifically, in dementia caregivers (Autio & Rissanen, 2018; McLennon et al., 2011). The second reason is the physiological effect of positive emotions. Some evidence has supported their “undoing effect” in the general population, whereby positive emotions have direct beneficial physiological consequences, such as the reduction of cardiovascular reactivity associated with negative emotion and speeding of cardiovascular recovery from stress that ultimately leads to better cardiovascular health (Fredrickson & Levenson, 1998).

Also, the analysis of discrete positive emotions may help us gain insight into emotional complexity in caregivers. In fact, in a recent article on emerging trends in caregiving research, Wolff et al. (2021) highlight that there is a “growing awareness of the emotional complexity in dementia caregiving, and that negative and positive emotions are not mutually exclusive” (p. 1766). These authors identify as an emerging topic the analysis of “How do daily experiences of positive and negative emotions independently and simultaneously impact mental and physical well-being for persons living with dementia and their care partners?” (p. 1765). Supporting the relevance of this topic, Doris et al., (2018) highlight that the positive aspects of caregiving and the negative ones (e.g., burden) are not “bipolar ends on a continuum” but different dimensions that coexist, and express the need to pay more attention to the positive experiences in order to be able to have a more complete understanding of the adaptation process of family caregivers in dealing with PwD (p. 2). This study concludes that positive aspects of dementia caregiving can be conceptualized as a multi-dimensional construct covering four key domains: a sense of personal accomplishment, fulfilment and gratification, feelings of mutuality in a dyadic relationship, an increase of family cohesion and functionality, and a sense of personal growth and purpose in life.

Despite the potentially relevant role of discrete positive emotions in dementia caregiving, to our knowledge, there is no available instrument to measure them. Hence, having available an assessment instrument to measure positive emotions may be helpful for understanding the complex experiential experiences of caregivers. Considering all this, a practical and brief instrument, easy to use in research and clinical contexts, to measure specific positive emotions in dementia caregivers would allow us to advance in the understanding of the role of these relevant experiences in caregivers’ well-being, besides being a useful instrument for clinical practitioners working with dementia caregivers.

This work presents the development and analysis of the psychometric properties of the Positive Emotions in Caregiving Scale (PEC-S), as well as data on its associations with the following relevant variables in the stress and coping process of dementia caregiving: stressors, namely behavioral and psychological symptoms of dementia (BPSD), functional status of the PwD, caregivers’ distress (anxiety and depression symptoms, and guilt feelings), and coping resources: frequency of leisure activities, and social support. The hypotheses of the study were: 1) the PEC-S will show appropriate reliability (internal consistency); and 2) it will show an adequate construct validity, reflected in significant negative associations with stressors (BPSD frequency and reaction) and distress (depression, anxiety and guilt), and positive correlations with coping resources (leisure activities and social support).

Although previous studies have analyzed positive aspects of caregiving, no brief measure of discrete positive emotions experienced in the context of caregivers’ relationship with the PwD and their caregiving role was available for research and intervention purposes in this population. This study aimed to develop and test the psychometric properties of a brief scale (PEC-S) to measure discrete positive emotions towards the person with dementia and the caregiving experience. The brief nature of the scale (6 items) is particularly relevant for this population as it is widely known that they have significant time limitations to participate in research and intervention activities.

The results of this study support the PEC-S as a reliable and valid instrument for making a brief assessment of discrete positive emotions experienced by family caregivers of PwD in the context of their relationship with the cared-for person. It presents a one-factor structure and appropriate internal consistency, with the expected findings in terms of the hypothesized construct validity, namely negative associations with BPSD, depressive and anxiety symptoms and guilt feelings, and positive associations with social support and leisure.

In line with previous findings addressed in the Introduction, the results of this study support that positive emotions are present in caregivers’ experience, as reflected in the mean scores of some of the assessed emotions (love, gratitude, and satisfaction with caring). An important finding of this study is that the frequency of specific positive emotions differs as a function of gender and kinship. In particular, gratitude and calmness are higher in male caregivers, supporting gender differences in the everyday emotional experience of caregiving. These differences may likely be related to traditional gender roles, with women traditionally holding the main caring role in families. In this sense, and taking into account that 97.8% of male caregivers were caring for women (only two out of the 33 son caregivers of the sample were caring for their father), the higher gratitude reported by them may be the result of their experience of having received love and care from these women throughout their life. Regarding higher calmness in male caregivers, this result may be related to men being more likely than women to accept and use formal care resources, as well as help from other family members, with this likely buffering the stress associated with care (Thorsen & Johannessen, 2023).

Results also support the construct validity of the PEC-S scale, as significant associations with central variables in the caregiving stress process have been identified. Specifically, and consistently with previous studies (e.g., Lou et al., 2015), the total score in positive emotions is inversely related to both the frequency and distress associated with behavioral and psychological problems (BPSD) of the PwD and his/her functional capacity. It seems logical that a higher frequency of problem behaviors in the PwD may interfere and hamper caregivers’ experience of positive emotions towards the PwD, as the presence of BPSD has been systematically found to be related to caregivers’ burden and depression (see systematic review by Ornstein & Gaugler, 2012).

The negative association of positive emotions with functional capacity is not so intuitively explainable, as previous studies found evidence supporting a positive association between the PwD’s level of dependence and their caregiver’s distress (Berger et al., 2005; Garre-Olmo et al., 2016; Razani et al., 2007). To explain this result, it may be argued that some positive emotions assessed by the PEC-S (e.g., love or tenderness) may be more likely to be experienced by the caregivers when the PwD is more dependent, a scenario that may also facilitate the experience of compassion and, more particularly, the compassion component involving motivation/disposition for helping the person in need (Gallego-Alberto et al., 2022). The first stages of dementia, in which the PwD’s needs for assistance are not so many nor so explicit, may set a scenario in which positive emotions may not be triggered so often as other negative feelings such as anxiety, worry, or fear. However, this hypothesis should be explored by studies using experimental or longitudinal methods that allow to capture the evolution of the experience of caregiving as time unfolds (Ornstein & Gaugler, 2012).

Our results reveal a significant inverse association between caregivers’ positive emotions and anxiety, depressive symptoms and guilt feelings. These associations reinforce the construct validity of the scale, as they provide indirect support to the hypothesis that positive emotions may act as buffers of the experience of stress and other negative emotional states in dementia caregivers, as has been found previously (Autio & Rissanen, 2018; McLennon et al., 2011). Future longitudinal or experimental studies should test the moderation hypothesis in order to provide clear support to the potential buffering role of positive affect in the caregiving stress process. Also supporting the construct validity of the scale are the positive associations between the PEC-S score and frequency of leisure and perception of social support, two of the main resource variables that have been analyzed in the caregiving research literature. While some of the observed associations between positive emotional experiences and other relevant variables in caregiving have been found in previous studies (e.g., with depression, in Cohen et al., 2002; with leisure, in Mausbach et al., 2011), the present study increases knowledge in this area by identifying the association of positive emotions with variables not previously analyzed in relation to them, such as social support and guilt. Furthermore, the scale includes discrete positive emotions experienced within the caregiver’s relationship with the PwD that have not been previously assessed in the literature, as previous scales have primarily focused on positive caregiving experiences but not on emotions (e.g., Fabà et al., 2017; Kate et al., 2012; Lawton et al., 1989; Tarlow et al., 2004). These results underscore the emotional complexity of dementia caregiving, indicating that both positive and negative emotions constitute meaningful aspects of the caregiving experience (Wolff et al., 2021).

The results of this study present some relevant clinical implications. Despite their relevant role, supported by the results, positive emotions are not usually included in the clinical assessment protocols with dementia caregivers, and their consideration as variables to be measured and addressed by interventions with them are very rare. The assessment of caregivers’ discrete positive emotions in everyday dementia care is needed in order to correct the negative bias frequently present in the consideration and assistance for these persons, which seems to be excessively focused on the negative consequences of caregiving, both emotional (depressive and anxious symptoms) and physical (e.g., health problems). The PEC-S may be a helpful instrument in research focused on the experiences of emotional complexity and emotional ambivalence, which have been proposed as relevant challenges in this field of dementia caregiving (Wolff et al., 2021). This study provides empirical support for the use of PEC-S as a brief, easy-to-use scale that may be a helpful tool in detecting profiles of caregivers more prone to resilience, who may have more effective coping repertoires to face caregiving demands in more adaptive ways that facilitate their experience of positive emotions. The identification of resilient versus vulnerable profiles of caregivers may be an effective strategy for the development of tailored interventions, adapted to the specific needs of each caregiver, thus contributing to improve the still moderate efficacy/effectiveness of current psychological interventions with dementia caregivers (Cheng et al., 2020). In this regard, the PEC-S may be particularly useful in the development and assessment of strengths-based interventions, for example, those proposed by Positive Psychology and Contextual approaches such as Acceptance and Commitment Therapy.

Some limitations of the study should however be acknowledged. First, the PEC-S is a very brief instrument, including only six positive emotions. Other positive emotions potentially relevant (e.g., joy) and also experienced by caregivers in their interaction with the PwD have not been considered. The lack of another instrument measuring positive emotional experiences in the assessment protocol is another shortcoming of the study, as its inclusion would have allowed us to analyze the PEC-S’s convergent validity. The cross-sectional nature precludes the analysis of test–retest reliability and consideration of causal relationships, and future longitudinal or experimental studies should be conducted to explore the mechanisms that explain the significant associations found for the experience of positive emotions, as well as their potential moderating (buffering role) in the caregiving stress process. With regard to the low RMSEA value when assessing the factor structure of the scale, although the confidence intervals contained the optimal values, some authors have argued that RMSEA values tend to show poor fit in models with fewer than 10 items/variables with large factor loadings and/or when sample size is under 200 participants, both conditions met in our data, and this may have led to our findings showing worse values (Kenny et al., 2015; Shi et al., 2019). Finally, the sample of the study was composed entirely of European white caregivers with Spanish nationality, so it is not possible to generalize these results to caregivers from other cultural contexts or different ethnicities. Future studies should analyze the PEC-S’s properties and correlates in either larger and more culturally diverse samples or in a cross-cultural way. In spite of the mentioned limitations, a strength of the study is that it supports the reliability and validity of the PEC-S as a brief, reliable and valid measure of positive emotions in dementia caregivers. Thus, a new valid and brief measure is available for professionals and researchers to assess positive emotions in caregiving, facilitating the consideration of this important variable for the understanding of each caregiver’s unique experience, as well as for the development of sound and effective interventions to help them cope more adaptively with care.