The emotional experience of caregiving in dementia: Feelings of guilt and ambivalence underlying narratives of family caregivers

Abstract

Objective

The aim of this study was to explore narrative domains of family caregivers’ emotional experiences, beyond intentional and explicitly reported contents, and to examine their associations with subjects defining characteristics, such as gender, kinship, duration of caregiving, and burden levels.

Methods

The study participants were 17 Italian family caregivers (88.23% women) with a mean age of 59.14 years (SD = 7.76), who provided their loved ones affected by dementia with in-home care. Structured interviews and Caregiver Burden Inventory were administered according to a mixed method design. A computer-aided text analysis was used which allowed the detection of shared narrative domains (cluster analysis) and latent factors organizing the contraposition between them (multiple correspondence analysis).

Findings

Five narrative domains emerged which were respectively referred to as perceived formal support (14.38% of the overall textual corpus), devotion (33.56%), anger (13.70%), sense of loss (18.49%), and feeling of uncertainty (19.86%). Kinship, duration of caregiving, and burden levels were differently associated with such domains. Two latent factors dealing with feelings of guilt and ambivalence explained 62.92% of overall data variance.

Conclusion

Guilt feelings should be carefully taken into account in support intervention with caregivers, with specific regard to stress and anger management. As well, a greater focus on caregivers’ emotion regulation and on the promotion of their problem-solving skills is needed when faced with contrasting beliefs about care decisions or role conflicts.

Keywords

caregiving dementia emotion narrative burden

Dementia is a chronic syndrome characterized by impairment in cognitive functions (e.g., memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment), commonly accompanied by deterioration in emotional control and social behavior, that currently represents one of the major causes of disability and dependency among older people (World Health Organization, 2019). Indeed, around 50 million people are affected by dementia worldwide, with 10 million new cases every year and an estimated prevalence between 5% and 8% in the general population aged 60 years and over, and its total number is expected to increase up to 82 million in 2030 and 152 in 2050 (World Health Organization, 2019).

Dementia can be overwhelming, not only for the affected people but also for their families, because caring for an elderly relative with dementia is very common among family members (Bieber et al., 2019). Many pieces of research have highlighted that the experience of informal caregiving may be considered as an example of chronic stress (Losada et al., 2017), leading to negative consequences in terms of psychological challenges and physical symptoms (e.g., Dassel et al., 2017; Thompson & Roger, 2014). Several domains of caregiver’s life are indeed affected because facing the inevitable deterioration of a relative with dementia requires an ongoing process of acceptance and adjustment (Cross et al., 2018); as well, providing daily help is very time-demanding and creates conflicts due to multiple familial and work roles (De Cola et al., 2017). In this regard, a better understanding of caregivers’ experiences and needs is advocated to develop consistent interventions aimed at reducing their distress, as well as improving their coping skills and overall well-being (Cross et al., 2018; De Cola et al., 2017).

To this purpose, qualitative research is deemed of fundamental importance for the exploration of caregivers’ experiences, so to reveal their attitudes, beliefs, and sense-making processes (Cross et al., 2018; Kim et al., 2016; Prorok et al., 2013). A recent meta-synthesis of qualitative studies (Cross et al., 2018) allowed the identification of several themes, regarding caregivers’ dementia-related meanings, coping strategies, care challenges, relationships with care recipients, and perceptions of formal support services. However, very diverse perspectives on caregiving experience are highlighted because simultaneous negative and positive emotions are reported and conflicting attitudes or feelings emerge concerning caregiving (Losada et al., 2017). It should be noted that most of these studies adopt grounded theory, phenomenological approach, ethnography, content or thematic analysis as qualitative research methods (Prorok et al., 2013). Such methods generally aim at analyzing narrative manifest content to identify several descriptive themes, whose relationships are not always explained, thus failing to account for the complexity of caregiving experiences.

The present study aims at exploring family caregivers’ emotional experiences by using a theoretical framework looking at the underlying affective dimensions running through language, beyond intentional and explicitly reported contents. To this purpose, a quantitative–qualitative perspective is adopted through a computer-aided text analysis, where narrative patterns emerge naturally from empirical data and are then given interpretation, without resulting from categories previously established by the researcher or being affected by interpretation bias to a significant extent. Besides, a mixed method is used by integrating structured questionnaires and interviews, as well as quantitative and qualitative data, so to examine the potential associations between caregivers’ specific narrative domains and defining characteristics, such as gender, kinship, duration of caregiving, and burden levels. This is to provide new insights into the complexity of the affective experience of family caregivers to be integrated with the existing evidence in the literature.

Method

Participants and procedures

The study participants were 17 Italian family caregivers who provided their loved ones affected by dementia with in-home care. They were recruited through a snowball sampling procedure. Being a primary caregiver assisting a family member in most of basic activities of daily living, having an at least 1 year of caregiving, and availability to participate were used as inclusion criteria. The sample was purposive (Patton, 2002) and adequate in sample size for interview-based studies. Along with pragmatic reasons, the adequateness of the sample size was determined based on the following three criteria: the general guidelines for achieving information power in interview-based studies, the published literature in the area of the qualitative research about caregiving, and saturation of data for computer-aided text analysis. Regarding the first criterion, several authors have suggested that a provisional number of 10/12 participants could be considered as sufficient to get enough insights or themes in the process of drawing conclusions (Corbin & Strauss, 2008; Malterud et al., 2016; Vasileiou et al., 2018). Concerning the previous literature, a review by Cross et al. (2018) of 14 qualitative studies about the caregiving experience showed that the number of participants varied from 8 to 46, with a mean value of 17. Then, considering saturation as the degree of variation (rather than quantity) in the data (Morse, 1995), the type-token ratio (TTR; the ratio of different words or types to total words or tokens in the text) was used as a measure of lexical richness and variability. This post hoc criterion was applied over the course of data collection, as to ensure a TTR less than 20% in the overall textual corpus, allowing a statistical approach to data (Bolasco, 1999; Caputo & Rastelli, 2014).

Overall, most of the study participants were women (88.23%) with a mean age of 59.14 years (SD = 7.76) and 12 of them were employed. Concerning kinship, 13 were adult children, whereas four were spouse caregivers, with a caregiving experience of 5.24 years on average (SD = 3.36). Regarding assisted persons with dementia, most of them were women (70.59%), on average aged 81.41 years (SD = 6.48). The time since dementia diagnosis varied from 2 to 15 years with the average being 5 years.

Specifically, participants were asked to fill in a sociodemographic datasheet. Then, individual structured interviews were administered and audio-recorded to examine their deep feelings about the caregiving experience with their loved ones. The interviews were administered by a nurse, who received specific research training on how to conduct open-ended interviews focusing on the respondents’ symbolization processes. Then, the interviews were verbatim transcribed by hand from the audio by a nurse and the transcriptions were checked against the original recordings for accuracy by another nurse. All the interviews (each lasting 20 minutes on average) were conducted in a reserved and confidential environment, at a time and place convenient to participants. After the interview, the Caregiver Burden Inventory (CBI) was administered, which evaluates the burden-related impact on different aspects of a caregiver’s life. All participants gave their written informed consent before their inclusion in the study. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation and with the Helsinki Declaration of 1975 and further revisions.

Materials

Structured interviews

The interview consisted of seven open-ended questions overall aimed at facilitating associative processes about the issue, consistent with the thematic areas synthesizing the psychosocial impact of caregiving in dementia as found in qualitative research (Cross et al., 2018; Prorok et al., 2013). The questions, their wordings, and their order of administration were determined in advance. The questions respectively referred to the following: personal meanings associated with dementia (1), changes in the relationship with the loved one after the diagnosis of dementia (2), decision to take on the role of primary caregiver (3), self-perception to deal with the challenges of caregiving (4), experiences of formal support services (5), impact of caregiving on one’s quality of life (6), and coping strategies and advice for other family caregivers (7).

CBI

CBI (Novak & Guest, 1989, adapted into Italian by Marvardi et al., 2005) is a 24-item questionnaire examining caregivers’ burden through a 5-point Likert agreement scale (from 0 = “Not at all” to 4 = “Very much”). Various areas of well-being are considered, which may be affected by the relative’s dementia to a different extent, as follows: restriction of personal time; sense of failure regarding hopes and expectations; physical stress and somatic disorders; role-related conflicts concerning job or family; and embarrassment or feeling of shame caused by the patient. In the present study, the total score of CBI showed excellent internal consistency, with a Cronbach’s alpha of .91.

Data analysis

Computer-aided thematic analysis was performed on the collected and verbatim transcribed interviews, adopting Emotional Text Analysis (Carli & Paniccia, 2002; Carli et al., 2016) as research framework to explore the study participants’ subjective experience, in line with previous research in healthcare settings (Caputo, 2015; Caputo et al., 2016; Langher et al., 2019). The analysis of interview data was conducted by two researchers (one nurse and one psychologist, as to get triangulation of different professional perspectives) who interpreted the outputs obtained from the computer-aided text analysis together, solving discrepancies by consensus.

Emotional text analysis allows the detection of few and significant domains, from the semantic variability and polysemy of the text rather than from categories previously established by the researcher. Polysemy refers to the potentially infinite number of emotional meanings of a word, apart from its language context and the cognitive sense conveyed by the source culture, consistently with a “double reference” principle (Fornari, 1979), assuming both a lexical cognitive and a symbolic affective function of the language. Based on Matte Blanco’s bi-logic theory of mind (1975), the co-occurrence of the most polysemic words within the same text segments consents to grasp the unconscious and symmetrical logic of speech from the syntagmatic relations between parts of language, through deconstructing the typical structuring or ordered constituent parts of language, expressing instead a rational, intentional, and asymmetrical processing (Carli & Paniccia, 2002).

To this purpose, some statistical multidimensional techniques are carried out through using the T-Lab software (specifically, “thematic analysis of elementary contexts” procedure) (Lancia, 2004), which performs both cluster analysis (CA) and multiple correspondence analysis (MCA) from a digital “presence–absence” matrix with elementary context units (i.e., text segments) in rows and lexical units (i.e., words) in columns, respectively. Specifically, CA allows the detection of some groupings of words co-occurring in the same text segments with the highest probability (evaluated through chi-square test), whereas MCA enables the exploration of the relationship between such groupings in a multidimensional space (evaluated through the absolute contributions of clusters to the formation of each factor) (Lancia, 2004). Groupings of words (clusters) thus represent narrative domains shared by participants, and Cartesian axes (factors) are intended as latent dimensions organizing the contraposition between them. Moreover, we can explore the relationship between textual data and some illustrative variables (i.e., subjects defining characteristics as categorical variables) referring to caregivers, such as gender (male/female), kinship (spouse or adult child), short/long duration of caregiving (<5 years or 5 years and higher, based on the median value) and low/high level of caregiver’s burden (based on the median value of the CBI total score).

The interpretative process of each cluster and factor (labeled by the researcher) relies on giving meaning to the co-occurrence of words of each semantic domain and analyzing their contraposition, based on the use of models of affective symbolization (Carli & Paniccia, 2002)—such as the emotional dichotomies of inclusion/exclusion, power/dependence, and trust/mistrust—integrating constructivism and object relations theory in line with an evidential and conjectural paradigm (Caputo, 2013a, 2013b, 2019). An in-depth qualitative analysis of the text segments of the interviews may be further useful to get triangulation and semantic validity of data through cross verification.

The relationship between the different clusters and illustrative variables is calculated by the chi-square test (χ²) (df = 1; p < .05). The associations between clusters and factors are indicated by the test value (Lebart et al., 1995), a measure with a threshold value (2) corresponding to the statistical significance more commonly used (p = .05) and a sign (−/+) which indicates the specific factorial poles.

Findings

The overall textual corpus consisted of 8895 occurrences and 1567 distinct words, thus showing a TTR (equal to 17.6%) below the threshold of 20%, which ensures enough lexical variability across the collected textual data to proceed with a statistical analysis. CA has detected five clusters, of which the percentage of elementary context units, indicating their relevance in the overall textual corpus, and some of the most characteristic words and examples of text segments are reported in Table 1

Table 1.

Associations between clusters and factors (test value).

	Factor 1	Factor 2
	Guilt	Ambivalence
Cluster 1: perceived formal support	5.38	.38
Cluster 2: devotion	13.36	−4.24
Cluster 3: anger	−13.61	4.40
Cluster 4: sense of loss	−.43	14.34
Cluster 5: feeling of uncertainty	−8.76	−13.10

The test value has a threshold value (2), corresponding to the statistical significance at p. < .05, and a sign (−/+) indicating the specific factorial pole (negative/positive) associated with each cluster.

. Multiple correspondence analysis identified two latent factors, explaining a satisfactory data variance (R² = 62.92%), which organize the main semantic oppositions in the textual corpus, from the different positions of clusters in the space (Table 2).

Table 2.

Clusters of dense words.

Cluster 1: perceived formal support (14.38%)		Cluster 2: devotion (33.56%)		Cluster 3: anger (13.70%)		Cluster 4: sense of loss (18.49%)		Cluster 5: feeling of uncertainty (19.86%)
Word	χ ²	Word	χ ²	Word	χ ²	Word	χ ²	Word	χ ²
Law 104/92	18.10	Care	10.38	Patience	32.62	To become	22.36	Facility	25.24
To care for	18.05	Activity	10.25	Understanding	25.91	Dementia	18.69	Adequate	16.59
Repercussion	12.27	Family	9.89	Advice	16.22	To communicate	17.45	Hospitalization	11.76
Professional	11.06	Limitation	8.14	To try	14.21	Sadness	12.99	Emotional	11.76
Visit	10.92	Quality of life	8.14	To ask for	13.07	Lack	7.29	Necessary	11.76
Diaper	8.75	Time	6.39	Love	9.43	To depend	5.92	Decision	10.35
Home care service	7.90	To abandon	5.01	To get angry	9.39	To be able	5.57	Training	7.85
Health service	5.72	Day care center	5.01	To help	9.37	Need	5.13	Conflict	7.85
Health	5.72	To look after	4.73	Correct	4.58	Strong	4.66	To assist	6.91
Attendance allowance	4.24	To manage	4.24	To realize	4.06	Loss	4.28	Nursing home	3.90

Examples of elementary context units
Professionals suggested me to apply for attendance allowance; as well, my children exercised their rights according to the Law 104/92	The main consequence of caregiving was less time to devote to my current family, whereas my quality of life was not affected at all	The advice I can give is to have patience, to understand that the person is ill and that whatever s/he does is not on purpose or with malice, therefore you cannot get angry	The person with dementia becomes dependent on others, s/he loses all points of reference and does not remember who s/he is anymore	I doubt that she would have been better in a nursing home or in any other facility; perhaps she receives few stimuli at home
We generally use home care service for obtaining diapers and we turn to health professionals for specialist visits	Managing care imposed constraints and limitations on me, my family life has suffered the most, but I would never have abandoned my mother	If you complain about the situation it means that you are not doing it correctly; you have to do it with love and patience and learn to have flexibility and understanding	Dementia causes sadness because of what has been lost; after diagnosis our relationship has changed a lot since we can no longer communicate	My sister opted for home care; if I could decide independently, I would have chosen hospitalization in an adequate nursing home
About my work, I benefitted from the Law 104/92 and I didn’t have strong repercussions	Looking after my family member did not weigh me at all; I never brought my father even to a daycare center, I prefer to keep him under my eyes	It is important to ask for help from family members and institutions, sometimes you get angry, but it is only with the calm that the situation can be brought forward	Even if she doesn’t realize it, she needs more and more help; before she was strong, a point of reference for me and now she is no longer	The situation is sometimes unmanageable and I don’t feel adequate, because I do not have the necessary training; it is important to avoid useless conflicts

The threshold value of chi-square test (χ²) for each lemma is 3.84 (df = 1; p = .05). Textual data were translated into English only for the purposes of the article.

Clusters

Cluster 1: Perceived formal support

This cluster is not associated with any of the illustrative variables considered. It deals with the sources of formal support that are available to persons with dementia and their families at the public health level. It refers to instrumental and concrete forms of help from local health centers, such as diaper provision and home care services for basic daily life activities. Besides, some legal measures are reported, such as the leave from work (granted by the Law n. 104/92 to employees who assist a family member with a disability), as well as attendance allowance (monthly economic benefit for people who are unable to care for themselves and require continuous care), which may make in-home care by family members more sustainable.

Cluster 2: Devotion

This cluster is significantly associated with the texts by caregivers with a lower level of burden, χ² (1, N = 67) = 6.98, p < .01.

It deals with a total engagement in care activity, whose burden seems to be completely denied. The decision to assist the loved ones relies on a strong sense of devotion and moral responsibility, which prevents the individual from considering other potential alternatives. Relying on formal care services is seen as a form of abandonment and is thus deemed unacceptable. The limitations and constraints associated with caregiving are not perceived as affecting one’s quality of life at all. Instead, there are some concerns about taking time away from one’s current family to comply with the caregiving requirements, which further confirms a sense of family duty.

Cluster 3: Anger

This cluster is significantly associated with the texts by spouse caregivers, χ² (1, N = 28) = 9.97, p < .01, and those with a higher level of burden, χ² (1, N = 79) = 4.07, p < .05. It deals with the need for acquiring greater capacities to handle potentially stressful situations when caring for persons with dementia, with specific regard to anger management. Indeed, caregivers may get impatient, annoyed, frustrated, and resentful because of their challenging role. Patience, understanding, and love are thus advocated as counteracting angry feelings, as well as the importance of awareness about acknowledging one’s limits and asking for help from family, friends, and/or professionals.

Cluster 4: Sense of loss

This cluster is not associated with any of the illustrative variables considered. It describes a process of personification of dementia that seems to take the place of the ill person, leading to a sense of loss. On the one hand, because of progressive cognitive impairment, the loved ones are perceived as changing their behaviors, failing to recognize their relatives and losing their identity. This sense of strangeness may trigger an increasing lack of contact and communication. On the other hand, they become completely dependent on others as needy children, thus ceasing to be a reference point for caregivers, with role reversal being associated with feelings of sadness and hopelessness.

Cluster 5: Feeling of uncertainty

This cluster is significantly associated with the texts by long-duration (equal or higher than 5 years) caregivers, χ² (1, N = 67) = 5.61, p < .05, and by those with a higher level of burden, χ² (1, N = 79) = 6.90, p < .01.

This cluster evokes a general feeling of uncertainty about one’s full competence and adequateness as a caregiver due to the lack of preparedness. Family and situational constraints are reported that, to some extent, led the participants to take on the role of primary caregiver independently on their true will. Training of informal caregivers is advocated as helping to face conflicts and unmanageable situations; as well, hospitalization in a nursing home represents a potential alternative that could provide the person with dementia with a more valid professional assistance in serious cases.

Latent factors

Guilt (F1)

The first factor (32.84% of total variance) mainly differentiates clusters 1 (perceived formal support) and 2 (devotion) from clusters 3 (anger) and 5 (uncertainty). It refers to guilt feelings of having done wrong or failed in an obligation as a family caregiver. On the one hand, there is a strong sense of moral responsibility and devotion to in-home care, which is triggered by family ties and is also legitimized by healthcare policies and legal measures at a social level. On the other hand, there is a general sense of inadequateness and perceived defectiveness about correctly managing stress or negative emotions and providing effective assistance.

Ambivalence (F2)

The second factor (30.08% of total variance) mainly differentiates clusters 3 (anger) and 4 (sense of loss) from clusters 2 (devotion) and 5 (uncertainty). It refers to ambivalence experienced toward caregiving, in terms of simultaneous positive and negative emotions. On the one hand, there are conflicting feelings concerning the relationship with the care recipient, which is characterized by annoyance, anger, and resentment and, at the same time, by a sense of loss, sadness, and desire for greater closeness. On the other hand, there are contradictory attitudes toward the decision to care for loved ones, with a resilient devotion and reluctance to use formal services alternating to a sense of uncertainty about one’s role and perceived inadequateness of in-home care.

Discussion

The analysis shows five common narrative domains, overall conceived along two latent dimensions, which characterize family caregivers’ emotional experiences. The most salient domain refers to devotion (33.56%), as found in recent meta-synthesis of qualitative research (Cross et al., 2018), dealing with a sense of moral commitment to fulfilling the caregiving role based on family obligations (Forbes et al., 2008) and normative beliefs about intergenerational solidarity (Losada et al., 2017). This domain also expresses a reluctance to use formal service, consistent with previous findings suggesting the unwillingness of informal caregivers to disclose family problems and resort to external support services, due to pride and the wish to manage care independently (Bieber et al., 2019; Phillipson et al., 2013). In this regard, it is interesting to note that such a theme is mostly associated with low-burdened participants as if they denied that caregiving-related problems were too difficult to handle without help (Losada et al., 2017; Phillipson & Jones, 2012).

This notwithstanding, uncertainty about the efficiency of the caregiving role also emerges as a frequently reported theme (19.86%), especially by those with a higher level of total burden and longer experience of caregiving. This could depend on the worsening of caregivers’ quality of life over time (O’rourke et al., 2003) because long-term caregiving is associated with experiencing greater coping difficulties due to the deteriorating faculties of the person with dementia (Shim et al., 2013). Indeed, continuous care may lead caregivers to feel overwhelmed and increasingly distressed at not having time for themselves and other family or social roles (Cross et al., 2018). Besides, in this domain, there is a greater proneness to express the need for support as a caregiver and to use formal services addressed to loved ones. This appears in line with the literature showing that the estimation of a reduced personal competence and a greater recognition of dementia-related problems may promote help-seeking in informal caregivers (Bieber et al., 2019; Brown & Chen, 2008).

Along with uncertainty feelings, a profound sense of loss (18.49%) is highlighted in the analyzed narratives. Emotions of hopelessness, sadness, isolation, and depressive symptoms are, indeed, frequently reported in qualitative studies about caregiving experience (Bieber et al., 2019; Cross et al., 2018). Sense of loss is an integral part of the caregiving experience (Holley & Mast, 2009) because, despite being physically present, a loved one with dementia is perceived as psychologically absent; accordingly, the past close relationship with the care recipient tends to cease, thus requiring a grieving process (Boss, 2011). Therefore, caregivers are likely to experience an increasing emotional distance from their care recipients and a difficulty to accept role reversal, in terms of changes in the balance of the previous relationship with their loved one (Cross et al., 2018).

Perceived formal support (14.38%) is another research finding, in line with previous studies suggesting material and financial help or additional home care that is made available by healthcare and family policies as recurrent issues in family caregivers’ narratives (Cross et al., 2018; Prorok et al., 2013). However, it should be acknowledged that such a theme is not found to be associated with caregiver burden in the current study. In this respect, the literature in the field highlights that the relationship between caregiver distress and received instrumental help is not clear (Jarrott et al., 2005) and that instrumental support by other carers can be unbeneficial to primary caregivers to some extent (Lou et al., 2015). Several hypotheses can thus be made about this. First, measures reconciling work and care, as well as economic resources and additional support by local health services, may strengthen the relevance of in-home care, thus normalizing informal caregiving as a culturally valued expectation (Wenger et al., 2002). Besides, receiving instrumental support by external agencies might imply that the primary caregivers fail to fully fulfill their responsibilities (Lou et al., 2015; Miller & Guo, 2000) because providing personal care to ill family members is regarded as a role for close kin, especially in the Italian culture (De Cola et al., 2017).

Then, the last detected theme refers to anger (13.70%) as a common effect of caregiving in line with previous studies (De Cola et al., 2017; Rudd et al., 1999). Indeed, family caregivers tend to report challenges in balancing their mixed feelings of love, anger, and irritation, with negative consequences on their quality of life (Cross et al., 2018), as confirmed by the association found in the present study between such an issue and a higher level of caregiver burden. Besides, the difficulty to manage anger is mainly reported by spouse caregivers compared to children, consistently with other pieces of research showing that spousal caregivers are the most susceptible to such problems (Ott et al., 2007; Rudd et al., 1999). Several reasons can be advocated to explain this difference. As a marital relationship is characterized by intimate closeness and high proximity, negative and violent behaviors caused by dementia-related impairments may occur to a greater extent (Rudd et al., 1999). Besides, because spousal caregivers are at high risk for health problems due to advancing age, having to care for the partner rather than themselves may enhance burden and consequent hostile feelings (Ott et al., 2007). Then, they have to face the reality that even though they are married, they will be living like a single person, with the end of mutual support triggering resentment (Meuser & Marwit, 2001).

Furthermore, the two detected latent factors consent to explain the interrelations among the analyzed domains, providing potentially interesting insights about the emotional patterns of family caregivers.

The first factor deals with a sense of guilt resulting from angry feelings toward loved ones (Rudd et al., 1999) and defectiveness in accomplishing caregiving responsibilities competently, that are not easily disclosed by informal caregivers due to social stigmatization (Cross et al., 2018; Hsiao et al., 2006). At the same time, feelings of guilt are demonstrated to be associated with the reduced use of formal services because of the difficulty to accept professional support, with a consequent increase of caregiver burden (Bieber et al., 2019; Phillipson & Jones, 2011). From such a perspective, given the cultural value of family obligations in the Italian context, guilt feelings should be carefully taken into account in support intervention with caregivers (De Cola et al., 2017), with specific regard to stress and anger management. Indeed, continuing to care for the loved one may not always be the best solution, when caregivers show poor coping strategies and greater preparedness is required to offer adequate dementia care, especially in more serious cases.

The second factor refers to ambivalent feelings experienced toward caregiving, in line with recent research (Losada et al., 2017; Pillemer et al., 2007), such as the willingness to take care of the family member with dementia but also to have freedom from demands and time for leisure activities. Ambivalence is found to correlate with caregiving stressors, in particular frequency and distress associated with disruptive behaviors in care relationships; as well, it significantly contributes to the explanation of both depressive and anxious symptoms in caregivers (Losada et al., 2017). This is particularly relevant if considering the stronger difficulty to manage contradictory feelings that may result in emotion suppression and increased distress (Iecovich, 2014). Therefore, some clinical implications can be derived in terms of a greater focus on caregivers’ emotion regulation and on the promotion of their problem-solving skills when faced with contrasting beliefs about care decisions or role conflicts.

Some limitations need to be acknowledged regarding the present study, such as the limited generalizability, given the exploratory qualitative research design and the low sample size, and the lack of secondary subgroup analyses by family caregivers’ sociodemographics that could provide further information. Narrative content about caregiver emotional experience could be characterized by higher thematic variability compared to what found in our study. As well, some specific differences could exist based on specific variables referring to care recipients. Notwithstanding these limitations, this study may contribute to qualitative research about family caregiving experience and provide some interesting recommendations for both psychological interventions supporting informal caregivers of people living with dementia and information and education campaigns aimed at raising awareness and decreasing stigmatizing attitudes possibly preventing the access and use of formal services.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Andrea Caputo

Andrea Caputo, PsyD in Health Psychology, PhD in Dynamic and Clinical Psychology, is currently an Adjunct Professor in Clinical Psychology at the Faculty of Pharmacy and Medicine and research fellow at the Department of Dynamic and Clinical Psychology at Sapienza University of Rome, Italy. His research interests have mainly been focusing on clinical and health psychology.

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