Behavioural disturbances in patients with frontotemporal lobe degeneration focusing on caregiver burden at home and in nursing homes.

AIM AND OBJECTIVE: To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in-depth interviews. BACKGROUND: Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers' health. Few studies have described the challenges and burdens connected with everyday life and in relation to suitable nursing home placement that are faced by family caregivers. METHOD AND DESIGN: This study used a descriptive and explorative design. Eleven semi-structured interviews with family caregivers of patients from special units in four nursing homes were conducted in 2014. Data were analysed based on Kvale and Brinkmann's three contexts of interpretation: self-understanding, common sense and theoretical understanding. Checklist for qualitative studies: Standards for Reporting Qualitative Research (SRQR) http://www.equator-network.org/reporting-guidelines/srqr/ RESULTS: Two central themes were derived from the data: changes in behaviour and personality were perceived as incomprehensible, frightening and increasingly difficult to manage. Family caregivers experienced challenges in finding suitable care facilities when they were not able to continue providing home care. Due to behavioural disturbances and lack of relevant competencies among health personnel, family members were often moved between nursing homes. CONCLUSION: Pronounced personality and behavioural disturbances such as tactlessness and aggression in a family member with dementia are experienced by caregivers as stressful and burdensome and may lead to feelings of shame and guilt. A lack of suitable care facilities adds to the stress and difficulties of the families and entails an additional and unresolved burden. RELEVANCE TO CLINICAL PRACTICE: The study reveals a need for more knowledge among those organising health services as well as healthcare professional dealing with this patient category to ease the burden on next of kin.

The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial.

BACKGROUND: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention. METHODS: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia. RESULTS: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period. CONCLUSIONS: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver. TRIAL REGISTRATION: Clinical.Trials.gov Sept. 2009, NCT01287767.

Music Therapy and Physical Activity to Ease Anxiety, Restlessness, Irritability, and Aggression in Individuals With Dementia With Signs of Frontotemporal Lobe Degeneration.

The purpose of the current study was to evaluate whether a combined intervention of physical activity and music therapy could reduce anxiety, restlessness, irritability, and aggression among individuals with severe dementia. An exploratory design was used to evaluate a combined intervention of physical activity, music therapy, and daily walking. Interventions were systematically implemented for 8 weeks. Target groups were individuals with dementia with frontal lobe symptoms in institutional care. Primary outcome measure was the Brøset Violence Checklist (BVC). Four men and two women (mean age = 84.3 years) and their primary caretakers (n = 6) participated. The most prominent symptoms among participants at baseline were confusion, irritability, and verbal threats. The individual BVC total scores indicated significant improvements (p = 0.03). Implementation of individualized music therapy combined with increased physical activity for 8 weeks was a feasible intervention that reduced anxiety, restlessness, irritability, and aggression in the current study. [Journal of Psychosocial Nursing and Mental Health Services, 57(5), 29-37.].

The coping experiences of spouses of persons with dementia.

AIMS AND OBJECTIVES: To explore how spouses who are caregivers to persons with dementia experience everyday life 6-12 months after participation in the intervention condition in the Norwegian Cognitive Behavioural Therapy for Early Dementia (N-CORDIAL) study. BACKGROUND: There is no current medical curative treatment for cognitive impairment and dementia-associated conditions. These conditions will lead to an increased need for daily assistance and care, as well as greater stress for caregivers. The Norwegian CORDIAL Study is a manual-based randomised controlled trial based on the German CORDIAL study (cognitive rehabilitation and cognitive behavioural treatment for early dementia in Alzheimer's disease), consisting of cognitive rehabilitation, cognitive behavioural therapy and life review methods. DESIGN AND METHODS: A descriptive exploratory study with qualitative semi-structured in-depth interviews with six spouses of persons with dementia who had participated in the Norwegian CORDIAL study. The transcribed text was analysed by systematic text condensation. RESULT: The main theme identified, "An everyday search for meaning," referred to the stress experienced by the caregivers and their coping strategies in everyday life. CONCLUSION: The caregivers had gained increased awareness of coping strategies in everyday life 6-12 months after the intervention. Caregivers who experienced fewer neuropsychiatric symptoms in their spouses with dementia benefitted most from the intervention. RELEVANCE TO CLINICAL PRACTICE: The study is relevant to clinical practice as interventions focusing on how to improve coping strategies may reduce caregiver stress and contribute to postponement of nursing home placement.

Communication in mental health nursing - Bachelor Students' appraisal of a blended learning training programme - an exploratory study.

BACKGROUND: It is important that mental health nursing students at Bachelor level obtain effective communication skills. Many students dread the fact that in the mental health field they will encounter patients and relatives with various backgrounds and personalities. Large classes and limited teaching resources in nursing education are challenging. To prepare students for mental health nursing practice, a communication skills course based on the blended learning method was developed and carried out at two different campuses.The aim of the study is to explore Bachelor nursing students' appraisal of blended learning methods for enhancing communication skills in mental health nursing. METHODS: This study employed an exploratory design. Teaching and information materials were available on the learning management system (LMS). Videotaped role play training was carried out in the Simulation Department. Data were collected after the course by means of a questionnaire with closed and open-ended questions. The response rate was 59.2%. Quantitative data were analysed using the Statistical package for the Social Sciences (SPSS) and the Kruskal Wallis test, while qualitative data were analysed by content analysis based on Graneheim and Lundman's approach. RESULTS: No impact of background variables was observed. Students appreciated teachers' participation in role play and immediate feedback was considered especially important for learning outcomes. The students perceived that their communication skills and knowledge had improved after completing the blended learning programme. CONCLUSIONS: According to the nursing students, blended learning is an appropriate method for improving communication skills in preparation for mental health nursing. Blended learning makes it possible to build flexible courses with limited resources.

Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers.

BACKGROUND: Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions. METHODS: A qualitative, descriptive, and explorative design were employed to address the aims of this study. We interviewed nine relatives of people with FTD and similar conditions living in nursing homes, and two relatives of people living at home but attending day center 5 days a week. RESULTS: Relatives described the transition from being a close relative to someone who had little influence or knowledge of what constituted the care and the daily life of their loved ones. According to relatives' descriptions, patients are deprived of dignity in various ways: through limited interaction with peers and close relatives, limited confirmation of identity through staff who know them well, lack of possibilities for making autonomous decisions or entertaining meaningful roles or activities. Examples provided from the day care centres show how dignity is maintained through identity-strengthening activities conducted in different places, under various kinds of supervision and care, and together with people representing different roles and functions. CONCLUSIONS: Maintaining a link with the world outside the institution, through closer cooperation between the institution and family members, and/or by the use of day care centres, seems to facilitate prevention of many of the factors that may threaten dignified care.

Social provision and loneliness among older people suffering from chronic physical illness. A mixed-methods approach.

AIMS: To describe and compare the perceived social provision for a group reporting never feeling lonely with that of a group reporting feeling lonely and to explore the meaning of loneliness. SUBJECTS: Participants (N = 101) were recruited from geriatric wards. Inclusion criteria were as follows: aged 65 years or more, the absence of dementia, one or more chronic physical disorders and plans to be discharged from the hospital to their home. The mean age was 81.3 years (range: 65-96 years), 68% were women, and 66% lived alone. MEASURES: Assessments of social provisions and loneliness were collected by a subjective report using the Social Provision Scale (SPS), and the Montgomery-Aasberg Depression Rating Scale (MADRS) was used to assess depression. The participants were also asked whether they felt lonely and were then asked to describe the meaning of loneliness if they had indicated feeling lonely. Narratives were then condensed by the participants into short sentences. RESULTS: Seventy-five per cent of the participants reported feeling lonely, of these 54% were living alone, and 18% identified with depression. Three subscales of SPS scores were significantly lower in the lonely group: attachment (p < 0.001), a sense of reliable alliance (p = 0.001) and the obtaining of guidance (p = 0.01). The overall view of the experience of loneliness was dominated by emptiness and negative emotions. The following themes were identified: Emotions were dominated by sadness, anxiety and restlessness, anger and guilt. Relationships were dominated by being left alone, being confined and feeling useless. Existential dimensions were characterised by emptiness, endless boredom, isolation and the potential for change. CONCLUSION: The study shows that loneliness is prevalent among older people suffering from chronic physical illness and confirms the complexity of the concept. A mixed-methods design contributed to nuanced and detailed information about the meaning of loneliness.

Associations of the serotonin transporter gene polymorphism, 5-HTTLPR, and adverse life events with late life depression in the elderly Lithuanian population.

Late-life depression (LLD) is a multifactorial disorder, with susceptibility and vulnerability potentially influenced by gene-environment interaction. The aim of this study was to investigate whether the 5-HTTLPR polymorphism is associated with LLD. The sample of 353 participants aged 65 years and over was randomly selected from the list of Kaunas city inhabitants by Residents' Register Service of Lithuania. Depressive symptoms were ascertained using the EURO-D scale. The List of Threatening Events Questionnaire was used to identify stressful life events that happened over the last 6 months and during lifetime. A 5-HTTLPR and lifetime stressful events interaction was indicated by higher odds of depression in those with s/s genotype who experienced high stress compared to l/l carriers with low or medium stress, while 5-HTTLPR and current stressful events interaction analysis revealed that carriers of either one or two copies of the s allele had increased odds of depressive symptoms associated with stress compared to participants with the l/l genotype not exposed to stressful situations. Although no significant direct association was found between the 5-HTTLPR short allele and depression, our findings demonstrated that lifetime or current stressful life events and their modification by 5-HTTLPR genotype are risk factors for late-life depression.

A training course on interpersonal relationships using role play in a Master of Mental Health Care programme - The students' experiences.

OBJECTIVES: To study how Master Students of Mental Health Care experienced role play as an educational method that strengthened their relational competence. DESIGN: The study was qualitative with an exploratory descriptive design. SETTINGS: Relational competence training course during the Master of Mental Health Care programme INFORMANTS: Master students in a Mental Health Care programme METHODS: Data from open-ended questions were analysed using qualitative content analysis based on Graneheim and Lundman. RESULTS: The following three categories were identified: A deeper understanding of self and others, Different positions and situations provide comprehensive understanding and Engagement strengthens relational competence. CONCLUSIONS: The study demonstrated that extensive use of role play, in which the students took on the roles of patient, healthcare professional and observer, combined with theoretical preparations and reflections seemed to elicit some of the humanistic values and attitudes central for strengthening relational competence.

Poor Quality in Systematic Reviews on PTSD and EMDR - An Examination of Search Methodology and Reporting.

Background: Different user groups regard systematic reviews as reliable and valuable sources for answering research questions. For systematic reviews to fulfill their purpose, methodological quality in all stages are of importance. The studies identified in a systematic search form the basis of the review, thus the search process methodology is important for both performing and reporting the search. The purpose of the present study was to evaluate the quality of non-Cochrane systematic reviews by analyzing how they perform and report the search. This is exemplified by systematic reviews on eye movement desensitization and reprocessing (EMDR), a trauma-focused therapy commonly used for post-traumatic stress disorder (PTSD). Methods and Results: We examined the method chapters of 20 systematic reviews on the subject, and rated their searches and reporting using relevant elements from the Cochrane Handbook and PRISMA. We found inadequacies in the methods employed for searching and reporting the search strategy, which could have been avoided by greater adherence to guiding documents for performing systematic reviews. Conclusion: Our findings raise important questions for future debate on the risk of omitting studies, thus impairing the conclusions in a systematic review. For clinical purposes, researchers should investigate if, and how, the search strategy in a systematic review affects the body of knowledge and the results.

Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study.

This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.

The validity of the Montgomery-Aasberg depression rating scale as a screening tool for depression in later life.

BACKGROUND: The aims of the study were to examine the validity of the MADRS and to compare it with the validity of the Cornell Scale for Depression in Dementia (CSDD). METHODS: We included 140 patients without dementia, with mean age 81.5 (sd 7.7) years. Trained psychiatric nurses interviewed all of them using the MADRS. In addition, for 70 patients caregivers were interviewed using the CSDD. A psychiatrist who had no access to the MADRS or the CSDD results made a diagnosis of depression according to the DSM-IV criteria for major depression, and the ICD-10 criteria was also applied for the 70 patients assessed with the CSDD. RESULTS: Twenty-two out of the 140 had depression according to the DSM IV criteria, whereas 25 out of 70 had depression according to the ICD-10 criteria. The area under the curve (auc) in a receiver operating characteristic analysis was 0.86 (95% CI 0.79-0.93) for the MADRS using the DSM-IV criteria. The best cut-off point was 16/17 with sensitivity of 0.80 and specificity of 0.82. The AUC for the CSDD was 0.83 (95% CI 0.71-0.95). The recommended cut-off score on the CSDD of 7/8 was valid but not the best in this study. LIMITATIONS: The patients were diagnosed with a diagnosis of depression by only one psychiatrist, and the procedures in the two centres were not exactly the same. CONCLUSIONS: The MADRS has good discriminating power to detect depression in elderly persons and should be preferred to the CSDD for use with persons without dementia.

Co-occurrence of anxiety and depressive disorders in a community sample of older people: results from the MRC CFAS (Medical Research Council Cognitive Function and Ageing Study).

BACKGROUND: Few population-based studies have examined the whole range of subthreshold syndromes and disorders of anxiety and depression in older people. AIMS: To investigate the co-occurrence of anxiety and depressive syndromes in older people. Associations between these conditions and personal and environmental factors are examined. METHOD: MRC CFAS included 13,004, age 65 years and above, who completed the initial screening interview. A stratified random subsample of 2,640 participated in the assessment interview where the Geriatric Mental State Examination (GMS) was administered. The AGECAT diagnostic system was used to generate subthreshold and disorder-level of anxiety and depression as well as the combination of these into eight syndromes categories plus a group without any of the syndromes categories. Prevalences, unadjusted and adjusted odds ratios are calculated for the syndrome categories in relation to cross-sectional personal and environmental factors, and odds ratios of subthreshold and disorders level are estimated. RESULTS: The overall prevalence of anxiety and depressive disorders are 3.1% and 9.7% respectively. The overall prevalence of either anxiety or depressive disorder (anxiety disorder with subthreshold depression, mixed anxiety and depressive disorder with subthreshold anxiety) where they overlapped is 8.4%. The highest Odds Ratios unadjusted and adjusted for age and gender, of anxiety and depressive disorders and significant for trend are found for increasing disability. Disability has a strong relationship with all the co-morbid syndrome categories. In all analyses women showed significant higher estimates than men. CONCLUSIONS: Our study demonstrated high estimates where anxiety and depression occurred in parallel both as disorders and as subthreshold syndromes.

Prevalence of depression in older people in England and Wales: the MRC CFA Study.

BACKGROUND: Depression in old age is an important public health problem. The aims of this study were to report the prevalence of depression in the Medical Research Council Cognitive Function and Ageing Study (MRC CFAS), a community-based, cohort. METHOD: Following screening of 13 004 people aged 65 and over from a population base, a stratified random subsample of 2640 participants received the Geriatric Mental State (GMS) examination and were diagnosed using the Automated Geriatric Examination for Computer-Assisted Taxonomy (AGECAT) algorithm. RESULTS: The prevalence of depression was 8.7% [95% confidence interval (CI) 7.3-10.2], increasing to 9.7% if subjects with concurrent dementia were included. Depression was more common in women (10.4%) than men (6.5%) and was associated with functional disability, co-morbid medical disorder, and social deprivation. Prevalence remained high into old age, but after adjustment for other associated factors, it was lower in the older age groups. CONCLUSIONS: The prevalence of depression in the elderly is high and remains high into old age, perhaps due to increased functional disability.

The Spielberger State-Trait Anxiety Inventory (STAI): the state scale in detecting mental disorders in geriatric patients.

BACKGROUND: In geriatric psychiatry assessment scales are often used in clinical praxis in the diagnostic work-up of mental disorders. AIM: To assess whether the state part of the STAI is useful as a case-finding instrument of mental disorders. MATERIALS AND METHOD: Data came from 70 non demented geriatric in-patients in stable clinical condition. Mean age was 83.3 years (range 64-96), and 74.3% were women. The 20-item STAI state instrument was used to measure current anxiety symptoms. Without knowledge of the score on STAI state a psychiatrist examined all patients and set diagnosis according to DSM-IV-TR criteria, but hierarchical rules were not used. Sensitivity, specificity, Likelihood ratio and accuracy were calculated for different cut-points of the mean sumscore on the STAI state. RESULTS: 15.7% of the participants suffered from a mental disorder: GAD = 1, mixed anxiety-depression = 5, depression = 1, dysthymic = 1, adjustment disorder (mixed anxiety-depression) = 1, and personality disorder = 1. The mean STAI sumscore in this group was 56.3 compared with 39.2 in the 59 patients without any psychiatric diagnosis. The optimal cut-off score on the STAI mean sumscore corresponding to the highest accuracy of 0.87 was 55/54 with sensitivity 0.82, specificity 0.88, and LR + 6.8. CONCLUSION: The STAI state scale is a useful instrument for detecting a variety of mental disorders in older people. Further studies should be carried out in different populations.

Anxiety and well-being in older people after discharge from hospital.

BACKGROUND: A previous study using the State-Trait Anxiety Inventory (STAI) has documented a very high prevalence of anxiety symptoms among older inpatients. The STAI produced two main concepts on factor analysis -'Nervousness' and 'Well-being'- and high scores on both caused the high overall score in these patients. AIM: To investigate how the scorings on the STAI evolve after discharge in older patients in order to understand better the reasons for their high scorings while in hospital. METHODS: Sixty-three patients who had been scored on the STAI during their stay in an elder care department were followed up at 1-3 and 12 months after discharge. Data were analysed by ancova for unbalanced designs. RESULTS: The mean STAI sum score increased significantly (3.5 points adjusted for the baseline scoring, age and gender, P < 0.001) from the first follow-up while in hospital to 1-3 months after discharge, with no significant change between the second and the last follow-up. This increase resulted primarily from a significant worsening of the score on 'well-being'. The score on 'nervousness' remained unchanged. Age did not influence the scores, while females scored higher. No interaction effects were observed, indicating that the evolvement of nervousness and anxiety after discharge is independent of gender and age. Item analysis showed that the worsening of the score on 'well-being' in these patients during the first 1-3 months after discharge was primarily caused by a lower score on the item 'I feel secure'. CONCLUSION: The study does not support the hypothesis that a high level of nervousness and lack of well-being among hospitalized older patients results from acute illness and hospitalization. The worsening in the score on well-being after discharge of such patients is primarily caused by low levels of feelings of security. This represents a challenge to nurses providing home-based care.