Socioemotional selectivity and psychological health in amyotrophic lateral sclerosis patients and caregivers: a longitudinal,dyadic analysis

Abstract

Objective: Socioemotional selectivity theory predicts that as the end of life approaches, goals and resources that provide immediate, hedonic reward become more important than those that provide delayed rewards. This study tested whether these goal domains differentially affected psychological health in the context of marital dyads in which one partner had been diagnosed with amyotrophic lateral sclerosis (ALS), a life-limiting disease.

Design: ALS patients (N?=?102) being treated in three multidisciplinary clinics and their spouses (N?=?100) reported their loneliness, financial worry and psychological health every 3 months for up to 18 months.

Main Outcome Measure: Psychological health composite.

Results: In multilevel dyadic models, patients and spouses had similar levels of financial worry and loneliness. Both patients and spouses had worse psychological health with higher loneliness, but only spouses had worse psychological health with higher financial worry. Significant interactions with age and disease severity indicated that older spouses were more affected by loneliness than were younger spouses, and patients with less severe disease were more affected by financial worry than patients with more severe disease.

Conclusion: The results provide good support for socioemotional selectivity theory’s implications for psychological health in a strong test of the theory.     

Expressive disclosure to improve well-being in patients with amyotrophic lateral sclerosis: A randomised,controlled trial

Amyotrophic lateral sclerosis (ALS) is a terminal neurological disease associated with progressive paralysis, loss of communicative ability and functional decline. Expressive disclosure may help people with ALS, particularly those who are emotionally or socially inhibited, meet psychological challenges associated with the disease. People with ALS (N?=?48) were randomised to expressive disclosure about their disease or no disclosure. Psychological well-being (affect, depression and quality of life) was assessed pre-intervention and also three and six months later. Results of multi-level models indicated that the group that disclosed thoughts and feelings about ALS had higher well-being than the control group at three months post-intervention, but not six months. Ambivalence over emotional expression (AEE) moderated three-month post-intervention well-being. Those low in AEE had higher well-being than those high in AEE regardless of condition. Those high in AEE, who disclosed, had increased well-being from pre-intervention, whereas controls had decreased well-being from pre-intervention. Expressive disclosure may be helpful for people with ALS, but only those who have difficulty expressing emotions. In addition, the intervention had only temporary effects; the dynamic challenges of ALS progression may mean that the effect of processing thoughts and feelings about the disease in one stage may not generalise to later stages.     

Mindfulness,physical impairment and psychological well-being in people with amyotrophic lateral sclerosis

Objective: Mindfulness is the process of actively making new distinctions, rather than relying on habitual or automatic categorisations from the past. Mindfulness has been positively associated with physical well-being, better recovery rates from disease or infections, pain reduction and overall quality of life (QOL). Amyotrophic lateral sclerosis (ALS) is a rare, progressive and fatal neurodegenerative disease, clinically characterised by progressively increasing weakness leading to death, usually within five years. There is presently no cure for ALS, and it is considered one of the most genetically and biologically driven illnesses. Thus far, the aims of psychological studies on ALS have focused on understanding patient – and, to a lesser extent, caregiver – QOL and psychological well-being. No previous study has investigated the influence of psychological factors on ALS.

Methods: A sample of 197 subjects with ALS were recruited and assessed online twice, with a duration of four months between the two assessments. Assessments included measurements of trait mindfulness, physical impairment, QOL, anxiety and depression. The influence of mindfulness as predictor of changes in physical impairments was evaluated with a mixed-effects model.

Results: Mindfulness positively influenced the change of physical symptoms. Subjects with higher mindfulness experienced a slower progression of the disease after four months. Moreover, mindfulness at first assessment predicted higher QOL and psychological well-being.

Conclusions: The available data indicate that a psychological construct – mindfulness – can attenuate the progress of a disease that is believed to be almost solely biologically driven. The potential implications of these results extend well beyond ALS.     

Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.     

Quality of life of patients with amyotrophic lateral sclerosis

The aim of this study is to evaluate the correlation between different measures of quality of life (QoL), functional status and mood status in patients with amyotrophic lateral sclerosis (ALS). A sample of 40 patients with ALS was recruited and scales for the evaluation of health-related QoL (SF36), patient-centered QoL (SEIQoL), functional status (ALSFRS) and depression (ZDS) have been administered to them. All the correlations (Pearson's r) between the scores have been considered and the t-test was performed in order to compare male with female patients. No correlation emerged between the different measures of QoL and functional status, apart from the scores of the Physical Functioning subscale of the SF36 which resulted positively correlated (p?相似文献   

Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review

Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers. This review summarizes studies that have investigated quality of life, depression, anxiety, pain, spiritual and existential issues, hope, and hopelessness in the ALS field, with attention to both patients and their caregivers. Psychological support and the possible role of psychologists in the ALS field are also discussed.     

Executive dysfunction affects word list recall performance: Evidence from amyotrophic lateral sclerosis and other neurodegenerative diseases

The Rey Auditory Verbal Learning Test (RAVLT) is widely used in clinical practice to evaluate verbal episodic memory. While there is evidence that RAVLT performance can be influenced by executive dysfunction, the way executive disorders affect the serial position curve (SPC) has not been yet explored. To this aim, we analysed immediate and delayed recall performances of 13 non‐demented amyotrophic lateral sclerosis (ALS) patients with a specific mild executive dysfunction (ALSci) and compared their performances to those of 48 healthy controls (HC) and 13 cognitively normal patients with ALS. Moreover, to control for the impact of a severe dysexecutive syndrome and a genuine episodic memory deficit on the SPC, we enrolled 15 patients with a diagnosis of behavioural variant of frontotemporal dementia (bvFTD) and 18 patients with probable Alzheimer's disease (AD). Results documented that, compared to cognitively normal subjects, ALSci patients had a selective mid‐list impairment for immediate recall scores. The bvFTD group obtained low performances with a selectively increased forgetting rate for terminal items, whereas the AD group showed a disproportionately large memory loss on the primary and middle part of the SPC for immediate recall scores and were severely impaired in the delayed recall trial. These results suggested that subtle executive dysfunctions might influence the recall of mid‐list items, possibly reflecting deficiency in control strategies at retrieval of word lists, whereas severer dysexecutive syndrome might also affect the recall of terminal items possibly due to attention deficit or retroactive interference.     

Five-factor personality traits and subjective health among caregivers: the role of caregiver strain and self-efficacy

This study examined the association among caregivers' five-factor personality traits and subjective health with particular emphasis on the role of two theoretically implicated mediators: multi-domain self-efficacy and caregiver strain. The sample comprised 536 informal caregivers (mean age = 62.9 years, SD = 19.9, 72% female, 98% White) of community-dwelling older adults with multiple functional impairments. Both physical health and mental health were negatively associated with neuroticism and positively associated with extraversion and conscientiousness. Agreeableness and openness were associated with better subjective mental health and physical health, respectively. Multiple mediation analyses indicated that self-efficacy mediated all observed associations between personality and subjective health, whereas caregiver strain selectively mediated the associations of neuroticism and agreeableness with mental health.     

Effect of respite care on dementia and nondementia patients and their caregivers

The impact of a respite program on the cognitive and physical functioning of dementia and nondementia patients, and on the burden perceived by their caregivers, was assessed in a pretest-posttest design. A total of 55 caregivers were interviewed twice, 5 weeks apart. In the respite group, the caregiver's patient experienced a 2-week respite stay in a nursing home during the 5-week interval, whereas in the waiting-list comparison group, the patient experienced ongoing in-home care during the interval. We hypothesized that patient diagnosis (dementia vs. nondementia) would interact with respite exposure, with nondementia patients showing more improvement from respite than dementia patients. Regardless of diagnosis, however, positive effects from respite exposure were found for caregiver reports of the patient's memory and behavior.     

Why patients should give thanks for their disease: traditional Christianity on the joy of suffering.

Patristic teaching about sin and disease allows supplementing well-acknowledged conditions for a Christian medicine with further personal challenges, widely disregarded in Western Christianities. A proper appreciation of man's vocation toward (not just achieving forgiveness but) deification reveals the need to cooperate with the Holy Spirit's offer of grace toward restoring man's pre-fallen nature. Ascetical exercises designed at re-establishing the spirit's mastery over the soul distance persons from (even supposedly harmless) passion. They thus inspire the struggle towards emulating Christ's (self-crucifying) kenotic love, and to accept even secularly "undeserved" suffering as spiritually deserved in view of his (forever) lacking fervor in that struggle. Only in the spirit of that love can the evil Adam's sin brought into this world work its therapeutic impact, the eschatological purpose of which explains God's lovingly permitting that evil. This therapeutic impact is physically manifested already in this life through the transforming energies granted the saints of the church.     

Factor structure of patient and caregiver ratings on the dementia quality of life instrument

Preliminary evidence suggests that quality of life reports from patients diagnosed with mild cognitive impairment (MCI) and mild Alzheimer's disease (AD) are as reliable and valid as data provided by caregivers. To date, no studies compared the factor structure of data provided by caregivers and patients. Factor analyses are important to conduct because they are an indicator of validity. This study compared the factor structure of patient and caregiver reports on the Dementia Quality of Life scale (DQoL). Participants (N=67) were patients diagnosed with amnestic MCI or mild AD and their caregivers. Principal axis factor analyses were run separately on patient and caregiver report data. The three-factor solutions for patient and caregiver data were nearly identical. Three factors corresponding to positive affect, negative affect, and aesthetics emerged reliably from analyses. Thus, data from patients demonstrated a factor structure that was highly consistent with caregiver report data and conformed to meaningful psychological constructs.     

Positive and negative affect and well-being in cardiac patients and their spouses: the mediating role of illness representations

Objective: The aim of this study was to examine whether illness representations of control and consequences mediate the relation of cardiac patients’ affect to well-being. A further aim was to examine this indirect relationship at a dyadic level (i.e. patient and spouse). Design and main outcome measures: One hundred and four patients with a cardiovascular disease and their spouses participated in the study. Positive and negative affect was assessed at baseline; illness representations were assessed 2 months later, and physical and psychological well-being 4 months later. Results: Illness representations generally mediated the impact of patients’ and spouses’ affect on well-being, while several actor and partner effects were found. However, it was only positive affect that was indirectly related to well-being, while the representations of personal and treatment control chiefly acted as mediators. The effects were stronger for patients than spouses, as well as for physical well-being. Conclusion: The results underline the strong connection between illness-related self-regulation and the overall person/environment interaction as depicted by affect. They also indicate the need to integrate theories on adaptation to illness, with models describing adaptation of couples to stressful conditions, and specific theories about the role of emotion in adaptation to illness.     

Influence of perceived social support and functioning on the quality of life of patients with schizophrenia and their caregivers

Perception of social support and functioning of patients with schizophrenia and their primary caregivers and its relationship to quality of life are described. Forty-five patients and their 45 relatives, treated at the Mental Health Services in Arica, Chile, participated. Both patients and caregivers in the study have a poor perception of social support with regard to extra-family people, as well as a low social integration. However, patients showed adequate capacity to function within their immediate family. Unlike what was found in developed countries, these patients showed moderate levels of quality of life, with a strong relationship with perceptions of the social support they receive from family and significant others and the ability to establish and maintain social contacts. Quality of life of primary caregivers is linked to patients' ability to establish and maintain social contacts within the family group, as in other social instances, such as keeping a job. The results of the study suggest the need to consider the design and application of programs of support for these patients and their caregivers, with the central aim of the social functioning of the above-mentioned patients and their familiar and community integration.     

Psychological support needs of patients with head and neck cancer and their caregivers: A qualitative study

Objective: The aim of this study was to explore the psychological support needs of patients with head and neck cancer (HNC) and their caregivers. The appropriate timing, length, format and content of sessions were also investigated.

Design: Eighty-three patients with HNC and 73 of their caregivers completed questionnaires at diagnosis. Follow-up questionnaires were mailed to patients six months later.

Main outcome measures: Free text-comments to open-ended questions in the questionnaires were analysed using an inductive thematic approach with coding and theme development directed by the content of responses. This was used to determine psychological support needs both at diagnosis and at six month follow-up.

Results: Patients described ‘just being there’, empathy, maintaining normality and practical support as helpful from family/friends. They desired information, honesty, positivity and empathy from clinical staff. Formal psychological support was desired by approximately 40% of patients and caregivers, particularly early after diagnosis and during treatment. Most participants desired face to face sessions, providing individualised information and coping strategies.

Conclusion: The results of this study suggest that psychological interventions for patients with HNC and their caregivers should be delivered early after diagnosis in face to face sessions, presenting honest and factual information about the disease and coping strategies.     

Sudden onset of excessive repetitions in the speech of a patient with multiple sclerosis: A case report

This report provides a detailed analysis of excessive part- and whole-word repetitions in the speech of a 36-year-old male patient hospitalized for treatment of multiple sclerosis (MS) who also exhibited concurrent language and prosodic disturbances. Shortly following his hospitalization, a magnetic resonance imaging examination revealed plaques in the white matter of the medulla, cerebellum, basal ganglion, and periventricular white matter. His speech strongly resembled apractic speech patterns, chiefly syllable segregation. The source of data collected for this study was seven tape-recorded speech samples containing 2536 words spoken in 32.75 min, diagnostic reports, and clinical notes of 27 biweekly speech therapy sessions across a 5-month period. This report focused on an analysis of variables associated with the patient's part- and whole-word repetitions, and it was concluded that they were used as a compensatory device to procure additional time to articulate complex syllables. A brief critique of the therapeutic procedures used for treating his speech problem is also presented.

Educational objectives: The reader will learn about and be able to describe (1) the effects of MS on speech and language; (2) the kinds of data that were gathered to account for this patient's sudden onset of speech and language disorders; and (3) the findings that led them to conclude that his excessive repetitions were compensatory behaviors.     

Configurations of time,the body,and verbal communication: Temporality in patients who express their suffering through the body

This paper focuses on the study of temporality used as a clinical pointer to processes of affect regulation in patients who express their suffering through a discourse driven by bodily allusions. Differences between symptoms revealed by body language that conveys an experience of conflict (psychoneurotic symptoms) and somatizations are reviewed. Somatization is examined as a benchmark for the failure to resolve states of tension. The body in the session is conceptualized as a speech event. The body is considered as a psychical construction organized in the exchanges with a fellow human‐being. It is thus established as a support for subjectivity. Two discourse registers are described: the discourse of the evoked body and the discourse of the perceived body. The study of Greek mythology allows us to distinguish two different types of temporality : Chronos and Kairos. Chronos represents chronological whereas Kairos subjective time. Both are present in the subject; but if greater mental disorganization supervenes, Chronos predominates as it paves the way for a defence against suffering, designed to avoid the unbearable meaning of ceasing to be. Adherence to one or other mode of temporality signals different conceptions of analytic work. The topics addressed are illustrated by various clinical vignettes .