Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers

The impact of patient suffering on family caregivers is an understudied but important topic. This study of patients with amyotrophic lateral sclerosis (ALS) and their caregivers examined the associations of two components of patient suffering: patient physical symptoms, and mental distress, as well as the patient's support for the caregiver, with caregiver well-being. The sample consisted of 52 patients with ALS and their caregivers. Patients and caregivers each completed a structured survey assessing multiple domains including demographics, health, and well-being. Specifically, patients rated their own physical symptoms and mental distress. Caregivers rated their own daily affect, and the extent to which they perceived the patient as supportive. Caregivers also reported whether or not they had found any benefit in dealing with the patient's illness. Regression analyses yielded significant associations of patient distress with caregiver negative affect; patient support was associated with greater caregiver positive affect, and patient symptoms and support were associated with greater likelihood of caregiver benefit finding. There was a significant two-way interaction of patient symptoms by support, namely, benefit finding was not only more likely with greater physical suffering and patient support, but it was also the case that caregivers who perceived the care recipient as unsupportive could only find benefit when this person experienced intense physical suffering. Support interventions for ALS patients and their caregivers should devote particular attention to how caregivers may be affected by witnessing their loved one's sufferings, as well as identify and address challenges in support exchanges between caregivers and patients.     

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   

Writing errors and anosognosia in amyotrophic lateral sclerosis with dementia

Amyotrophic lateral sclerosis (ALS) with dementia (ALS-D) is known to exhibit characteristics of frontotemporal dementia. However, in clinical situations, it is often difficult to evaluate their cognitive functions because of impaired voluntary speech and physical disabilities. In order to identify characteristic and diagnostic cognitive symptoms of relatively advanced ALS-D patients, we retrospectively reviewed the clinical features of seven cases of clinically definitive ALS who had dementia, impaired voluntary speech, and physical disability. Their medical records showed that six out of seven patients made writing errors, and all of the patients demonstrated anosognosia. The writing errors consisted of paragraphia such as substitution, omission, or syntactic errors with individual differences in error types. Dissociation between kana and kanji were also observed. Anosognosia was evaluated by a self-rating scale with which the patients and the medical staff evaluated the patient's physical ability; the results indicated a large discrepancy between the evaluation by the patients and the medical staff. We emphasize that aphasic writing errors have been underestimated, particularly in ALS-D patients with impaired voluntary speech. We also reported that anosognosia was the most important and quantifiable symptom in ALS-D. The relationship between writing errors and anosognosia should be investigated further.     

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.     

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.     

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.     

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.     

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.     

Childhood-onset multiple sclerosis and mood disorders: a case study.

Multiple Sclerosis (MS) is rare in children. Little research exists regarding emotional and behavioral disorders in childhood-onset MS, despite the occurrence of such problems in adults with MS. This paper describes the cognitive and behavioral characteristics of a boy diagnosed with MS at age 9 and mood disorder at age 10. He displayed no cognitive or behavioral problems prior to the onset of physical symptoms of MS. Three years after diagnosis, this child showed persistent problems with speed of processing, visual-motor skills, and parent and teacher-reported executive functioning. In addition, he had difficulties with emotional lability, behavioral disinhibition, depression, and social interaction. As with adults, children with MS may be at increased risk for mood disorder compared to their peers. Mood disorders in children with MS are likely to be multiply determined, although the specific causal mechanisms are unknown.     

Office-based vs home-based behavioral treatment for obsessive-compulsive disorder: a preliminary study

The current study investigated whether exposure with response prevention (ERP) for obsessive compulsive disorder (OCD) is more effective when administered in a participant's home or other natural environments where symptoms tend to occur, than in a therapist's office. Twenty-eight outpatients with a principal diagnosis of OCD were randomly assigned to receive ERP in their therapist's office vs. wherever their symptoms usually occur (e.g., at home, at work, in public places, in the car, etc.). Participants received 14, 90-min sessions of ERP with an individual therapist. Participants were assessed at pretreatment, post-treatment, and at 3- and 6-month follow-up. Assessments included both self-report as well as clinician-rated indicators of OCD symptom severity, depression, and functional impairment. Results suggested that participants improved significantly, regardless of where treatment occurred. There were no differences in efficacy between the home-based and office-based treatment for OCD. Implications of these findings are discussed.     

Treadmill gait analysis does not detect motor deficits in animal models of Parkinson's disease or amyotrophic lateral sclerosis

Computerized treadmill gait analysis in models of toxicant exposure and neurodegenerative disorders holds much potential for detection and therapeutic intervention in these models, and researchers must validate the technology that assists in that data collection and analysis. The present authors used a commercially available computerized gait analysis system that used (a) a motorized treadmill on retired breeder male C57BL/6J mice, (b) the toxicant-induced (1-methyl-1-, 2-, 3-, 6-tetrahydropyridine) MPTP mouse model of Parkinson's disease (PD), and (c) the superoxide dismutase 1 (SOD1) G93A transgenic mouse model of amyotrophic lateral sclerosis (ALS). The authors compared the detection of deficits by computerized treadmill gait analysis in MPTP-treated mice with inked-paw stride length and correlated these measures to dopamine (DA) loss. The authors found that the computerized treadmill gait analysis system did not distinguish MPTP-treated mice from vehicle controls, despite a nearly 90% deficit of striatal DA. In contrast, decreases in inked-paw stride length correlated strongly with DA losses in these same animals. Computerized treadmill gait analysis could neither reliably distinguish SOD1 G93A mutant mice from controls from 6 to 12 weeks of age nor detect any consistent early motor deficits in these mice. On the basis of the authors' findings, they inferred that computerized gait analysis on a motorized treadmill is not suited to measuring motor deficits in either the MPTP mouse model of PD or the SOD1 G93A mouse model of ALS.     

Perception of initial moving target signals: support for a cumulative lateral inhibition theory

The cumulative lateral inhibition (CLI) theory of the Fr?hlich effect (perceptual mislocalization of the starting position of a moving target in the direction of movement) proposes that the target is difficult to see early in its trajectory because inhibitory feedback from later target views weakens initial target representations. In contrast, attention shift explanations contend that a phenomenal representation of the target is unavailable until attention has shifted to the vicinity of the target. Experiments 1-3 demonstrated that instructing naive undergraduate participants to accept different degrees of target clarity before making their response can alter the magnitude (and presence) of the Fr?hlich effect. Experiments 2-4 showed that increasing movement distance by adding target presentations reduced the visibility of the target at early positions. These results are difficult to reconcile with an attention shift account.     

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.     

Subcortical aphasia with deep dyslexia: A case study of a Japanese patient

The reading performance of a Japanese Broca-type aphasic patient on a single-word reading test was investigated. The result indicated that the subject fits the symptom complex of deep dyslexia in more than one aspect. Unique characteristics of this subject included (1) the isolated subcortical site of the lesion, which apparently produced deep dyslexia, and (2) double dissociations between kanji and kana processing and between oral reading and reading comprehension. The performance of this subject was compared with that of another Japanese deep dyslexic subject in S. Sasanuma (1980, In M. Coltheart, K. Patterson, & J. C. Marshall (Eds.), Deep dyslexia, London: Routledge & Kegan Paul). A theoretical implication was attempted based on a dual coding process scheme by S. Sasanuma and O. Fujimura (1978, Cortex, 7, 1-18).     

Negotiating transitions: a supervision model for home-based family therapists

Home-based family-centered treatment programs provide mental health and case management services to families in their own home. Treatment objectives include the prevention of residential or psychiatric placement, strengthening the family unit, and promoting family self-sufficiency. Little has been written, however, regarding the supervision of home-based, family-centered therapists. The purpose of this article is to describe a supervision model to teach novice-level family therapists to think systemically and to do family therapy with multiproblem at-risk families.