Dealing with the diagnosis of Parkinson's disease and its implications for couple functioning in the early stage: An interpretative phenomenological analysis.

BACKGROUND: For couples facing Parkinson's disease, marital relationships are significantly impacted, even at the early stages of the disease. However, very few studies have explicitly explored the functioning of the couple and how both partners deal with Parkinson's disease. The aim of this study was to explore the experiences and strategies of couples facing Parkinson's disease in the early stage using dyadic interpretative phenomenological analysis. METHODS: Fifteen couples agreed to participate in the study. Semistructured interviews were conducted with each partner separately regarding his or her individual experience with Parkinson's disease, the couple's history, the impact of the diagnosis on the functioning of the couple, and his or her projections for the future. RESULTS: Three higher-order themes emerged from the analyses. The first theme, "Being tested by the diagnosis", highlights 4 dyadic configurations according to the individual's and the couple's capacity for adjustment following the diagnosis: "noncongruent", "collapsed", "relieved" and "avoidant". The second theme, "Talking about everything except the disease", underlines that communication about the disease is often avoided both within the couple and with relatives to protect the persons with Parkinson's disease or respect their wishes. The third theme, "Supporting each other", describes the different levels of harmony between the two partners in the management of daily life and symptoms and their relational impacts. CONCLUSION: These results allow us to better understand the experiences of both partners and to highlight the importance of promoting better acceptance of the diagnosis by persons with Parkinson's disease to allow better communication between partners and with relatives. Such support prevents disease-specific distress and facilitates better adjustment in the later stages of the disease.

The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis.

BACKGROUND: Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers. OBJECTIVE: The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home. METHOD: Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer's disease. Interviews were analysed using Interpretative Phenomenological Analysis. RESULTS: Three axes emerged from the analyses: [1] the before conditions the after: the quality of the previous relationship with the parent with Alzheimer's disease is a determining factor and allows the identification of three profiles of daughter caregivers: 'the grateful', 'the resentful' and 'the ambivalent', [2] when the relationship protects against the sense of burden: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer's disease, and [3] alone or almost: the support network is desired when it is absent but kept at arm's length when it is present. DISCUSSION: The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.

Considering management behaviours to identify vulnerable caregivers of persons with dementia.

BACKGROUND: Persons with dementia gradually disengage from daily activities, and therefore require increasing daily support. Caregivers face a dilemma as to whether they should encourage the persons with dementia in terms of initiative and autonomy, or supervise and take charge of tasks, which may cause distress for both parties. This study seeks to better understand how caregivers manage the disengagement of the persons with dementia and the repercussions on their caregiving experience. METHODS: A total of 217 caregivers participated. Their management behaviours and the characteristics of their caregiving experiences were assessed with questionnaires. A cluster analysis was first performed to identify possible profiles of management behaviours and comparison, which were then compared to identify the caregiving experience associated with each profile. RESULTS: The first cluster (25.8% of the sample) corresponds to caregivers with high negative control behaviour scores and high positive stimulation behaviour scores; the second cluster (43.8% of the sample) corresponds to caregivers with low positive stimulation behaviour scores and high negative control behaviour scores; and the third cluster (30.4% of the sample) corresponds to caregivers with low negative control behaviour scores and high positive stimulation behaviour scores. Caregivers in Clusters 2 and 3 differ in terms of anxiety, depression, burden, gratification, health and financial problems. Cluster 1 is an intermediate profile with similar characteristics to Cluster 3. CONCLUSIONS: Our results support the idea of considering management behaviours to identify vulnerable caregivers and highlight the deleterious role of negative control behaviours, especially when they are not offset by positive protective stimulation behaviours.

Heterogeneity of emotion regulation strategies in patients with alcohol use disorder during the first year of abstinence: a clustering analysis.

AIMS: Studies examining the use of specific emotion regulation (ER) strategies in patients with severe alcohol use disorder (AUD) are mainly focused on intergroup comparisons to the detriment of intragroup variability. Yet, these patients are in fact characterized by emotional deficits of varying severity, and we seek to identify different patterns of ER strategies in people with AUD during their first year of abstinence. METHODS: Based on the ER strategies used by a large sample of patients with AUD, we applied cluster analysis to identify the existence of subgroups using distinct patterns of adaptive and nonadaptive strategies. To characterize these groups, we compared their clinical characteristics and then their emotional regulation strategies to those of control consumers. RESULTS: A first cluster, representing 61% of the sample, is constituted by individuals with high adaptive strategy scores and high nonadaptive strategy scores; a second cluster, representing 39% of the sample, corresponds to individuals with low adaptive strategy scores and high nonadaptive strategy scores. The individuals in these two clusters differed in terms of anxiety level and abstinence time. Compared with control consumers, the use of nonadaptive ER strategies remained lower for the two clusters, while the use of adaptative strategies differed. CONCLUSIONS: Our results support the idea of considering the heterogeneity of emotional capacities in individuals with AUD during the first year of abstinence. The identification of these profiles suggests either the existence of different adaptive ER capacities at baseline or a specific recovery of adaptive strategies over this period.

Couples facing the "honeymoon period" of Parkinson's disease: A qualitative study of dyadic functioning.

INTRODUCTION: The public health issue of the Parkinson's disease (PD) has led to a great deal of research that has highlighted the individual challenges faced by the person with the Parkinson's disease (PwPD) and the caregiving spouse. Few studies, however, have sought to understand the functioning of couples facing PD, by differentiating each stage, each of which has its own issues. In particular, the "honeymoon period", characterized by a symptomatic respite allowed by the effectiveness of treatments for motor symptoms, has been poorly documented, especially at the dyadic level. DESIGN AND METHOD: This qualitative study, based on Interpretative Phenomenological Analysis, aimed to understand the experience of couples and their functioning at this stage. Fifteen couples participated in separate semi-structured interviews for each partner. The analyses highlighted four dyadic dynamics, which call into question the relevance of the term "honeymoon" to describe the experience of couples. RESULTS: While some couples appear to adjust by means of flexible functioning and a positive reinterpretation of this experience, other dyads oscillate between rigid hyperprotection in the face of perceived distress or a vicious circle of control/avoidance and, in some cases, gradually slipping towards the erosion of the relationship. DISCUSSION: These results show that the relational difficulties suffered by partners at this stage should be taken into account as soon as possible after the diagnosis. Strengthening the communication and the togetherness between partners, as well as working on dyadic emotional regulation, are particularly relevant options for these couples.

The use of psychological network analysis in informal dementia care: an empirical illustration.

Objective: Theoretical models in informal dementia care have been developed to understand how risk and protective factors interact to cause caregiver's distress. The development of psychological network analysis provides a rich complement to our current models, as explores how different variables (or nodes) are associated using graph theories. Methods: The present study explored the use of network analysis using data from 125 informal caregivers of their partner with dementia (PwD). The included variables were recipient's dependency, self-efficacy, conflict within the family, dyadic adjustment, and caregiver's distress. Results: The analysis suggests a complex network of interacting variables. The core variable was not the caregiver's distress but rather their dyadic adjustment with their PwD. Variables were associated with caregiver distress through a large array of direct and indirect pathways and were associated with each other in the form of an asymmetric spider's web.Conclusion: The results show the complex interplay of variables in a psychological network. The central role of distress suggests a complex and dynamic role, notably through a bidirectional influence with quality of interactions. In the same way, quality of interactions appeared as one of the strongest nodes, its connectivity suggesting a crucial role to consider in our models and interventions.

Hypnosis Intervention for Couples Confronted with Alzheimer's Disease: Promising Results of a First Exploratory Study.

BACKGROUND: Dementia has a negative impact on the quality of life of the person with dementia and their spouse caregivers, as well as on the couple's relationship, which can lead to high levels of distress for both partners. Hypnosis has been shown to be effective in managing distress and increasing the quality of the relationship. OBJECTIVE: The aim was to develop a standardized hypnosis intervention for couples confronted with Alzheimer's disease and evaluate its feasibility, acceptability, and helpfulness in managing the distress of both partners and increasing the quality of the relationship. METHODS: In a single-arm study, sixteen couples received the 8-week intervention. Qualitative and quantitative assessments were conducted pre- and post-intervention as well as three months after. RESULTS: 88.9% of couples (n = 16) of the final sample (n = 18) completed the intervention. Despite the negative representations of hypnosis, several factors led couples to accept to participate in this study: positive expectations, professional endorsement, medical application, non-drug approach, home-based, free, flexible, and couple-based intervention. The results showed a significant decrease in distress for both partners. These effects were maintained three months after the intervention. Couples felt more relaxed, had fewer negative emotions, accepted difficulties more easily, were more patient, and reported better communication and more affection in the relationship. CONCLUSION: Overall, this pilot study shows the feasibility and acceptability of hypnosis with couples confronted with Alzheimer's disease. Although measures of the preliminary pre- and post-intervention effects are encouraging, confirmatory testing with a randomized controlled trial is needed.

Development and Validation of a Scale to Assess Caregiver Management Behaviors in Response to the Decreased Engagement of People with Dementia in Daily Activities.

Objective: To explore types of caregivers' management approaches, to develop a scale to assess caregivers' management behaviors and their relationship implications and to examine the scale's psychometric qualities.Method: First, based on a qualitative study, developing the corpus of items to align as closely as possible to caregivers' experience using their own words; second, exploring the structure of the scale and reducing the number of items; and third, studying the validity of the scale.Results: After assessing the validity requirements of the original corpus of items, an exploratory factor analysis of the first version of the scale with 62 items permitted the identification of three dimensions of caregiver management: "Negative control", "Positive stimulation" and "Overwhelming feeling". Because of its redundancy with respect to existing scales, the last dimension was removed. In the last step, a confirmatory factor analysis showed that a 13-item two-order factor model was in an acceptable model.Conclusion: The 13-item scale can be used to identify caregivers facing difficulty adapting their support as a baseline for following caregivers over time or evaluating the effectiveness of an intervention.Clinical implications: This scale can rapidly evaluate caregivers' management behaviors and their relational consequences and monitor outcomes of support interventions.

Modeling the Distress of Adult-Child Caregivers of People with Dementia: The Mediating Role of Self-Efficacy.

BACKGROUND: The increased tasks and responsibilities involved in supporting a parent with dementia (PWD) can induce distress in adult-child caregivers. Previous studies have shown that distress can be influenced by PWD and caregiver determinants, but few studies have considered the associations between these variables. OBJECTIVE: This study tested a complex model of adult-child caregiver distress in which PWD and caregiver determinants and their associations are considered. METHODS: 159 adult-child caregivers participated in this online study. PWD and caregiver determinants were assessed using questionnaires and their associations were investigated using the partial least squares path method. RESULTS: The model showed a significant partial mediation through self-efficacy (confidence in one's ability to organize and manage caregiving situations) between poor self-rated health and distress. Self-efficacy was a significant mediator of the relationship between informal social support and distress, and between preparedness and distress. The direct path between parental overprotection and distress was significant. The association between care and distress was significantly stronger for adult-child caregivers not living with their PWD. CONCLUSION: The model revealed the important mediating role of self-efficacy. Clinical interventions should improve the preparedness of adult-child caregivers and the quality of social support. The positive perception of their self-rated health may thus be promoted.

Characterizing the determinants of sexual dissatisfaction among heterosexuals: The specific role of dyadic coping.

Sexual satisfaction is the most frequently studied sexual component of human sexuality related to its link with relationship satisfaction and stability (S. Sprecher & R. M. Cate, 2004. The handbook of sexuality in close relationships, pp. 235-256. Mahwah, NJ: Taylor & Francis). Previous studies have shown that sexual satisfaction is affected by personal, interpersonal, social and cultural variables, but few studies have considered the associations between these variables. The aim of this study was to evaluate a complex model of sexual satisfaction considering these various levels of variables and their associations. The study was conducted online and comprised 457 individuals in the final sample. The French version of the index of sexual satisfaction evaluated the level of sexual dissatisfaction. Personal, interpersonal, social and cultural variables were assessed with questionnaires and their associations were investigated with the partial least squares-path method. The association between dyadic coping (positive and negative) and sexual dissatisfaction was mediated by relationship satisfaction. The model also showed three sequential mediations through dyadic coping and relationship satisfaction: first between intra-individual vulnerability and sexual dissatisfaction, second between intra-individual resources and sexual dissatisfaction, and third between conjugal characteristics and sexual dissatisfaction. The simple and sequential mediations were stronger for positive dyadic coping. The relationship between intra-individual resources and positive dyadic coping was significantly stronger in women, while the relationship between conjugal characteristics and positive dyadic coping was stronger in men. Dyadic coping plays a key role in sexual dissatisfaction. Clinical interventions should reinforce positive self-image (particularly in women), support emotional and physical vulnerabilities, and promote more supportive dyadic coping (particularly in men in a long-term relationship).

Use of hypnosis in the field of dementia: A scoping review.

BACKGROUND: Dementia has negative implications for the quality of life of person and lead to situations of distress. Hypnosis is effective in several health domains but its use in people with dementia is debated. OBJECTIVE: The aim was to scope the research activity on the use of hypnosis with persons with dementia to manage their distress, symptoms or daily life. METHOD: We used five international databases: PubMed/Medline, the Cochrane Library, ScienceDirect, PsycINFO, and Google Scholar. RESULTS: Only seven articles were listed and three articles described the same longitudinal pilot study. Hypnosis was used either in one or several sessions, alone or as an adjunct and reinforced with daily self-hypnosis with or without audio tapes in people with dementia. The results show that they experienced moderate-to-high hypnotizability, but some adaptations were needed given their attention disabilities. They showed benefit on symptoms.  Nevertheless, some methodological weaknesses such as small heterogeneous samples, the use of non-validated tools for hypnotizability or outcomes, or the insufficient definition of the content of sessions limit the scope of the results. CONCLUSION: Hypnosis seems feasible and acceptable for people with dementia and could provide interesting clinical benefits, but a randomized controlled trial with a large homogeneous sample would be highly informative.

Relapsing-remitting multiple sclerosis: an interpretative phenomenological analysis of dyadic dynamics.

BACKGROUND: Multiple sclerosis, a chronic degenerative disease, impacts persons with the disease and their caregivers, usually the spouse. Few studies have considered the dyadic adjustment to the disease, and even fewer have considered the type of multiple sclerosis. This study aimed to explore the experiences and strategies of couples in which one spouse had relapsing-remitting multiple sclerosis using dyadic interpretative phenomenological analysis. METHODS: Six couples agreed to participate in the study. Semi-structured interviews were conducted with both spouses together to observe their interactions. RESULTS: Three higher-order themes emerged from the analyses. First, "each is stuck in its own bubble" represents a situation in which each spouse fights on his or her own side to avoid the disease or to avoid the suffering associated with it. Second, "the breakdown of communication" highlights disconnected emotional communication that protects each person but weakens the couple. Third, "the alienated couple" indicates that the two spouses are both emotionally distant and physically united, which prevents them from talking about difficult things. CONCLUSION: These results demonstrate the importance of supporting the couple before avoidance strategies for fighting the disease are put in place and become entrenched. Implications for rehabilitation The persons with relapsing-remitting multiple sclerosis and their partner struggle with the disease in their own anti-depressive bubble using avoidance individual strategies, and leading to a breakdown in the emotional communication between the two partners. Individual intervention centered on acceptance would allow each of the partners to experience psychological events and to limit strategies of avoidance. Dyadic support would allow the two partners to maintain emotional communication to preserve their relationship. These two complementary interventions could be provided as early as possible for the couples before the avoidance strategies and the distance between the two partners become entrenched.

Relationship Dynamics of Couples Facing Advanced-Stage Parkinson's Disease: A Dyadic Interpretative Phenomenological Analysis.

BACKGROUND/OBJECTIVE: Several studies have examined the impact of Parkinson's disease (PD) on the quality of couples' relationships. To date, few studies have explored how couples experience their relationship dynamic by taking into account the disease stage. The objectives of this study were to understand the experience of each partner and to study the mechanisms that underlie their couple organization in the advanced stage of PD. METHODS: Semistructured individual interviews conducted with fifteen patients and their partners were the subject of a dyadic interpretative phenomenological analysis. RESULTS: Three themes were identified from the analysis: the first, "A Closeness That Separates," allows the identification of different patterns of interactions that lead to emotional distancing between the partners; the second, "The Adversity Is Not Unbearable, But Going It Alone Would Be," emphasizes the importance of how the assisting partner provides support; and the third, "Be Prepared for Anything and Facing an Uncertain Future," reveals the extent and modes of the dyadic regulation of the emotions linked to what the future may hold. CONCLUSION: Psychological support is important to help couples express both their feelings and their respective needs in the evolving context of PD.

Predictors of caregiver distress among spouses, adult children living with the person with dementia, and adult children not living with the person with dementia.

AIM: The caregiving situation differs according to the type of relationship between the patient caregiver, and among dementia caregivers, living with the person with dementia can contribute to caregiver distress. This study aimed to identify the predictors of caregiver distress based on caregiver profile: spouse, adult child living with the person with dementia, and adult child not living with the person with dementia. METHOD: In total, 213 caregivers participated in this study. Their responses to questionnaires helped identify the positive and negative implications of the caregiving situation and the level of caregiver distress. The analyses consisted of univariate and multiple linear regression models using a forward method. RESULTS: Based on the standardized beta scores, the variables that are the most significant in predicting spouse caregiver distress are the impact on health and impact on schedule. The variable that is the most significant in predicting the distress of adult child caregivers living with the person with dementia is the impact on health. The variables that are the most significant in predicting the distress of adult child caregivers not living with the person with dementia are the impact on health, impact on schedule, and impact on finances. CONCLUSION: The results make it possible to consider different approaches to providing support, including evaluating the health of all caregivers, giving guidance on accepting help and focusing caregivers' actions on their values for spouse caregivers, providing family mediation for adult child caregivers living with the person with dementia, and offering information and assistance on the available aids for adult child caregivers not living with the person with dementia.

An acceptance, role transition, and couple dynamics-based program for caregivers: A qualitative study of the experience of spouses of persons with young-onset dementia.

OBJECTIVE: In this study, we assessed a support program based on acceptance, role transition, and couple dynamics for spouses of people with young-onset dementia. The qualitative feedback from the caregivers' experience is analyzed. The goal was to explore how this home-based support program is perceived and to appraise the impact of the different approaches that were offered. DESIGN: A thematic analysis was conducted on the answers to the end-of-session questionnaires and the follow-up semistructured interviews. RESULTS: Five themes emerged from the analyses. They highlighted caregivers' ability to overcome their emotional struggle as well as the control of their loved one's behaviors. The results also showed the possibility for caregivers to access new ways to support their loved ones and to maintain the quality of their relationship. CONCLUSION: These findings represent preliminary evidence of this program's efficacy for caregivers.

A Customized Intervention for Dementia Caregivers: A Quasi-Experimental Design.

Objective: The aim of this study is to test the effects of a customized intervention on distress among caregivers of persons with dementia (PWD) using a quasi-experimental design. Method: Fifty-one spouse caregivers in the experimental group and 51 in the control group participated in the study. The effects of the intervention were examined by comparing caregivers' responses with questionnaires at pre-intervention baseline (T0) and immediately after intervention (T1). Differences were quantified using repeated-measures ANOVA. Results: The analyses indicated a stabilizing effect of the intervention on caregivers' perceptions of PWD's daily functioning, self-esteem related to caregiving, quality of family support, and feeling of distress. Linear increases were observed regarding sense of preparedness and impact on daily routine, while no differences (interaction and linear effects) were observed for degree of self-efficacy, depression, impact on finances, or self-rated health. Conclusion: These findings show a preliminary efficacy of the intervention proposed in this study to prevent the exacerbation of caregivers' distress.

Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

OBJECTIVES: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. METHOD: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. RESULTS: The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. CONCLUSION: The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

Do spouse caregivers of young and older persons with dementia have different needs? A comparative study.

AIM: The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups. METHOD: Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ2 test. RESULTS: The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004). CONCLUSION: To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset.

Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study.

OBJECTIVES: To explore spouse caregivers' means of coping with the disease and compare them based on the age of onset of the disease in order to adapt support programs. METHODS: Interviews were conducted with 38 spouse caregivers of persons with late-onset dementia (PLOD) and 40 spouse caregivers of persons with early onset dementia (PEOD). The first step in the analysis was qualitative, using QSR N'Vivo 10 to identify the coping strategies. The second step was quantitative, comparing the coping strategies based on the age of onset of the disease with a χ2 test. RESULTS: An inventory of 26 strategies used by all caregivers was established and consolidated into two groups: acceptance strategies and avoidance strategies. The statistical results show that some strategies were used by the two groups of caregivers. However, when differences emerged, the "Planning" strategy was used by spouse caregivers of PEOD, whereas the "Re-arranging", "Humor" and "Getting away from the entourage" strategies were used by spouse caregivers of PLOD. CONCLUSION: It would be interesting to develop a support program with a common framework and specific modules depending on the age of onset of the disease. Common modules would permit developing and strengthening acceptance strategies. Specific modules for caregivers of PEOD would guide them in the acquisition of more adaptability and flexibility in the assistance provided to the PWD, which can sometimes be too rigid and controlled. Specific modules for caregivers of PLOD would help them to develop the ability to request help and identify the intervention limits of the entourage.