Relatives Stress Scale Research Articles

The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment.

The role and responsibilities of next-of-kin carers are significant, filling several years of their lives and causing them to experience a burden of care. This study was conducted to investigate the burden of next-of-kin carers for dementia sufferers in Slovakia. Data were compiled via the Relatives' Stress Scale (RSS) screening instrument through a survey of 112 primary next-of-kin carers and analysed using the statistical tests of descriptive statistics, means, scores and significance differences (Wilcoxon test). This is one of the few scales which provides: (a) specific measures of caregiver stress, and (b) is standardised for a population of informal carers in the home environment. The profiles of Slovak next-of-kin carers were identified with statistically significant characteristics (gender, age of carers). The study identified a high level of caregiving stress (82.15%), and selected factors were found to be significant in all burden dimensions: emotional stress (p = 0.001), social stress (p = 0.003), and negative feelings (p = 0.002). The results emphasise the need for coordination of healthcare and social services, possibly by expanding the network of social support groups, operating a counselling hotline/chat, and introducing national educational programmes for the next-of-kin carers of dementia sufferers. The results are also a source of reference for the umbrella organisation 'the Slovak Alzheimer's Society' to access when implementing changes at a national level.

Remote Care for Caregivers of People With Psychosis: Mixed Methods Pilot Study.

BackgroundA reduced availability of resources has hampered the implementation of family work in psychosis. Web-based support programs have the potential to increase access to high-quality, standardized resources. This pilot study tested the Norwegian version of the Relatives Education and Coping Toolkit (REACT), a web-based United Kingdom National Health Service program in combination with phone-based support by trained family therapists.ObjectiveWe investigated how the program was perceived by its users and identified the facilitators and barriers to its clinical implementation.MethodsRelatives of people with psychosis were offered access to REACT and to weekly family therapist support (with 1 of 2 trained family therapists) for 26 weeks. Level of distress and level of expressed emotion data were collected at baseline and after 26 weeks using the Family Questionnaire and the Relatives Stress Scale. Both family therapists and a subset of the relatives were interviewed about their experiences after completing the program.ResultsDuring the program, relatives (n=19) had a median of 8 (range 4-11) consultations with the family therapists. Postintervention, there was a significant reduction in stress and in expressed emotions in the relatives of people with psychosis. Interviews with the relatives (n=7) and the family therapists (n=2) indicated the following themes as important—the intervention turned knowledge into action; the intervention strengthened the feeling of being involved and taken seriously by the health services; and management support and the ability for self-referral were important, while lack of reimbursement and clinician resistance to technology were barriers to implementation.ConclusionsThe service was found to offer a valued clinical benefit; however, strategies that aim to engage clinicians and increase organizational support toward new technology need to be developed.

Characteristics of patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare

Objective: The aim of this study was to describe patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare and to examine factors associated with depression.Design: This was an observational study.Setting: Fourteen outpatient clinics and 33 general practitioners and municipality memory teams across Norway.Subjects: A total of 226 patients assessed in primary healthcare and 1595 patients assessed in specialist healthcare outpatient clinics.Main outcome measures: Cornell scale for depression in dementia (CSDD), Mini-Mental Status Examination (MMSE), Clock drawing test, Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Instrumental Activities of Daily Living, Personal Self-Maintenance Scale, Relatives’ stress scale (RSS), and Neuropsychiatric Inventory Questionnaire (NPI-Q)Results: Patients assessed in primary healthcare were older (mean age 81.3 vs 73.0 years), less educated, had poorer cognition (MMSE median 22 vs 25), more limitations in activities of daily living (ADL), more behavioural and psychological symptoms of dementia (BPSD), more depressive symptoms (CSDD median 7 vs 5), more often lived alone (60% vs 41%) and were more often diagnosed with dementia (86% vs 47%) compared to patients diagnosed in specialist healthcare. Depression was associated with female gender, older age, more severe decline in cognitive functioning (IQCODE, OR 1.65), higher caregiver burden (RSS, OR 1.10) and with being assessed in primary healthcare (OR 1.53).Conclusion: Post-diagnostic support tailored to patients diagnosed with dementia in primary healthcare should consider their poor cognitive function and limitations in ADL and that these people often live alone, have BPSD and depression.Key pointsPeople diagnosed in Norwegian primary healthcare had more needs than people diagnosed in specialist healthcare. • They were older, less educated, had poorer cognitive functioning and activity limitations, more often lived alone, and had more BPSD and depression. • Depression was associated with being female, older, having cognitive decline, being assessed in primary care and the caregiver experiencing burden • Post diagnostic support for people with dementia should be tailored to the individual’s symptoms and needs.

The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress.

Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers. The Relatives' Stress Scale (RSS) was used to assess the level of reported distress in carers, and the Neuropsychiatric Inventory (NPI) was used to assess NPSs. The effect of NPSs on carer distress was analyzed using correlation analysis and partial least squares regression. This study included 159 participants diagnosed with AD (n=97) and DLB (n=62) and their primary carers (spouses and adult children). The majority of people diagnosed with dementia were women (64.2%), with a mean age of 75.9years (SD, 7.4) and a mean Mini-Mental State Examination (MMSE) score of 23.5 (SD, 2.9). The main analysis identified apathy as the most important NPS contributing to carer distress. Compared with AD, the explained variance in the DLB group was higher (r2 =37.3 vs r2 =53.7). In addition, more NPSs were considered clinically important in the DLB group. The findings of this study identify apathy as the most important NPS contributing to carer distress among carers of people with AD and DLB. These findings help us identify the support needs of families dealing with dementia.

Effects of death education combined with humanistic nursing on mental state of family members of terminal cancer patients

Objective To explore the effects of death education combined with humanistic nursing on mental state and quality of life of family members of terminal cancer patients so as to provide clinical data and basis for spreading hospitalpice. Methods From September 2015 to January 2018, we selected 110 patients with stage Ⅲ or Ⅳ cancer and 110 their immediate family members (selecting one family member of one patient) of Oncology Department at the First People's Hospital of Shangqiu as subjects by convenience sampling. All of the subjects were divided into control group (n=49) and intervention group (n=61) with the method of the random number table. Family members of control group received routine nursing. On the basis of that in control group, family members of intervention group were treated with death education combined with humanistic nursing for two months. All of family members were evaluated with the Profile of Mood States (POMS) , Relatives Stress Scale (RSS) and WHO Quality of Life-BREF (WHOQOL-BREF) to compare the negative mental state, mental stress and quality of life of patients' family members before and after intervention. Results Before intervention, there were no statistical differences in the scores of POMS, RSS and WHOQOL-BREF of family members between two groups (P>0.05) . After intervention, the scores of six sub-scales of POMS, dimension scores and total score of RSS and scores of four dimension of WHOQOL-BREF all improved compared with those before intervention with statistical differences (P<0.05) . After intervention, the scores of tension-anxiety (TA) , depression-dejection (DD) , anger-hostility (AH) , fatigue-inertia (FI) and confusion-bewilderment (CB) of POMS, psychological distress, life disruption and negative emotions and the total score of RSS in intervention group were lower than those in control group; the scores of four dimensions (physiology, psychology, social relations and environment) in WHOQOL-BREF of intervention group were higher than those of control group with statistical differences (P<0.05) . Conclusions Death education combined with humanistic nursing can relieve the negative mental state and mental stress of family members of terminal cancer patients, which helps to improving family members' quality of life. Key words: Neoplasms; Quality of life; Death education; Humanistic nursing; Patients; Family; Psychology

Burden of Care and Patient's Neuropsychiatric Symptoms Influence Carer's Evaluation of Cognitive Impairment

Objectives: The aim of this study was to explore what effects the carer's burden and patient's neuropsychiatric symptoms have on carer's report on patient's cognitive functioning and instrumental activities of daily living (IADL). Methods: We included 1,832 patients, 742 with mild cognitive impairment and 1,090 with dementia [mean age 75.2 years (SD 9.5), 56% women]. The following scales were used: Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Lawton and Brody IADL Scale, Neuropsychiatric Inventory Questionnaire (NPI-Q), Relatives' Stress Scale (RSS), Mini-Mental State Examination (MMSE), and Clock Drawing Test (CDT). Correlation analyses and multiple linear regression analyses were carried out to explore which factors were associated with IQCODE and IADL. Results: Spouses scored lower on the IQCODE compared with non-spouses in spite of equivalent MMSE and CDT scores. In a multiple linear regression analysis using IQCODE as a dependent variable, beta for MMSE was -0.368 (p < 0.001) adjusted for demographic factors. After adjusting also for RSS and NPI-Q, MMSE beta was -0.279 (p < 0.001), RSS beta 0.294 (p < 0.001), and NPI beta 0.237 (p < 0.001). Similar results were found using IADL as the dependent variable. Conclusion: Carer's burden and neuropsychiatric symptoms of the patient are important biasing factors when carers report on cognitive function and IADL.

The effect of coping on the burden in family carers of persons with dementia

Objectives: This study explores the association between coping, measured by the extent of locus of control, and the burden of care on family carers of persons with dementia (PWD).Method: Two hundred thirty PWD living at home and their family carers were recruited from 20 Norwegian municipalities. The carers’ burden was assessed by the Relatives’ Stress Scale (RSS) and coping by the Locus of Control Behaviour Scale. The PWD were assessed by the Neuropsychiatric Inventory (NPI-Q), the Physical Self-Maintenance Scale (PSMS), the Instrumental Activities of Daily Living (IADL) scale, and the Mini Mental Status Examination (MMSE).Results: Locus of control (LoC) was found to be the most important factor associated with the burden on carers of PWD, even when we had controlled for the PWD variables, such as the NPI-Q score. The LoC and the carer's use of hours per day to assist the PWD were the only two variables the carers found that affected the extent of the burden. The NPI-Q was the most important variable in the PWD that affected the burden on the carers.Conclusion: Carers who believe that what happens to them is the consequence of their own actions are likely to be less burdened than carers not expecting to have control. This finding gives a possibility to identify carers with a high risk of burden.

Escalas para avaliação da sobrecarga de cuidadores de pacientes com Acidente Vascular Encefálico

O objetivo do estudo foi avaliar as escalas disponíveis na literatura para medir a sobrecarga de cuidadores de pacientes acometidos por acidente vascular encefálico. Realizou-se uma revisão bibliográfica nas três bases de dados: LILACS, CINAHL e SCOPUS. Selecionaram-se 23 trabalhos e identificaram-se 24 diferentes escalas. Destas, as mais citadas foram o Caregiver Strain Index, a Caregiver Burden Scale, a Caregiver Reaction Assessment, o Sense of Competence Questionnaire, a Relatives Stress Scale e a Zarit Burden Interview. O uso de escalas para mensurar a sobrecarga é uma ferramenta importante para avaliar o contexto no qual está inserido o cuidador, entretanto é mais fidedigno quando associado a outros instrumentos de mensuração. Portanto, é fundamental pesquisas de validação de escalas para essa população.

A Combined, Multimodal Intervention for Individuals with Dementia: Effects on Family Caregiver Outcomes

Few studies have tested the effects of nonpharmacological interventions designed for people in early-stage dementia on the family caregiver. This study tested a multimodal intervention (Taiji exercise and support group) for people with dementia, with some treatment group caregivers choosing to co-participate. Control group caregivers participated in educational programs. Outcome measures included role stress (Relatives Stress Scale [RSS]) and quality of the relationship with the person with dementia. Trends toward positive effects for participating caregivers were found for overall role stress and the Personal Distress subscale and quality of the relationship with the person with dementia. In comparing outcomes between the total treatment group and the control group, treatment group caregivers rated one RSS subscale, Negative Feelings toward the Care Recipient, significantly lower (more positive) than control group caregivers. A within-group difference was found for the quality of the relationship for control group caregivers (increased negativity), with no increase in treatment group caregivers. Findings support the potential benefits of the intervention for both participating and nonparticipating caregivers.

Caring for Stroke Survivors: Baseline and 1-Year Determinants of Caregiver Burden

Caregiver burden following stroke can have significant adverse health consequences for caregivers and threatens the recovery and successful rehabilitation of patients. Our objective was to identify patient factors that contribute to higher levels of caregiver burden. We prospectively studied patients admitted to our stroke unit over a 2-year period (2001-2002). Data were collected at baseline and at 1 year. Caregiver burden was measured at 1 year using the Relatives Stress Scale (completed by 155 caregivers) and the Bakas Caregiver Outcomes Scale (143 caregivers). Explanatory patient factors at baseline included sociodemographic status, stroke severity, stroke sub-type, functional disability (Barthel Index), functional handicap (Oxford Handicap Scale and Modified Rankin Scale), and cognitive status (orientation, clock drawing). At 1 year, mental health and health-related quality of life were assessed using the Fatigue Impact Scale, Geriatric Depression Scale, Global Deterioration Scale, and 36-item Short Form Health Survey. The baseline patient factors predictive of caregiver burden by multiple regression analysis were older patient age (P<0.01), male gender (P<0.05), ischemic stroke (P<0.05), urinary incontinence (P<0.0001), and impaired clock drawing (P<0.05). At 1 year, significant correlates of caregiver burden were older patient age (P<0.05), male gender (P<0.01), poor mental health (P<0.05), functional handicap (P<0.05), and functional disability (P<0.001). The functional status of patients can be used to identify caregivers at risk of caregiver burden. Patient demographic variables, cognitive function, and mental health status may further expose vulnerable caregivers. These factors should be considered in the development of strategies to offset caregiver burden.

A One-Year Randomized Controlled Psychosocial Intervention Study among Family Carers of Dementia Patients – Effects on Patients and Carers

Objective: To test the effect of a short-term psychosocial intervention programme for family carers of patients with dementia and identify characteristics of carers and patients that responded positively. Methods: The study was a multi-centre randomized controlled trial. Carers of 180 patients suffering from dementia recruited at 7 memory clinics at geriatric or psychiatric departments participated in the study. Carers of the intervention group were educated about dementia and in 6 group meetings taught how to use structured problem-solving. The control group received treatment as usual. The effect on patients was measured with the Neuropsychiatric Inventory and on carers with the Relatives’ Stress Scale (RSS). Results: The intention-to-treat efficacy analysis included 171 carer/patient dyads. The intervention did not have any effect on the primary outcome variables. The burden measured by the RSS increased in both groups; however, more carers of the control group converted from a low-burden group to a medium- or high-burden group after 4.5 months. In a subgroup analysis we found a statistically significant difference in the Neuropsychiatric Inventory score in favour of the intervention group among female patients. Conclusion: The predominately negative result of this study emphasizes the need of individually tailored interventions for carers and the use of narrow inclusion criteria when performing group-based interventions, such as the extent of burden as well as gender and kinship.

Clinical outcomes in elderly demented patients and caregiver's stress: A 2-year follow-up study

We have conducted a study on 82 elderly patients with advanced dementia admitted to the Geriatric Department of S. Giovanni Battista Hospital of Torino in order to evaluate mortality, functional and cognitive impairment and caregiver's stress at 2-year follow-up. Patients were examined using a standardized protocol which included demographic characteristics, comorbidity, duration and type of dementia, severity of disease (clinical dementia rating scale: CDR), behavioral disturbances (neuro-psychiatric inventory: NPI), functional status (activities of daily living: ADL, and instrumental activities of daily living: IADL), cognitive status (short portable mental status questionnaire: SPMSQ). Characteristics of primary caregivers were evaluated and their level of stress was assessed by the relatives’ stress scale (RSS). After two years, mortality in the total sample was 61%; the mean age of survivors was 81.3 ± 5.3 years; 88% of the sample was still living at home with a relative (76%) or with paid personnel (24%). A statistically significant worsening of the cognitive status was detected (baseline SPMSQ = 7.5 ± 1.7; follow-up SPMSQ = 8.4 ± 1.8; p < 0.05). Functional status did not change significantly, since it resulted already seriously compromised at the beginning of the study. Most caregivers (80%) were the same as two years before and their stress level was very high (baseline RSS = 36.6 ± 13.9; follow-up RSS = 33.2 ± 14). In conclusion, most of the patients included in the follow-up were still living at home, despite the high caregiver's burden and the increasing severity of the disease. Therefore, there is a strong need to further improve health services for the patients with advanced dementia living in their homes.

The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease.

To characterize the psychosocial burden on spouses living with the elderly suffering from mild dementia, stroke and Parkinson's disease, and to identify patient characteristics associated with it. Materials and methods Data on patient-spouse couples came from three studies of patients with stroke (36 couples), mild dementia (92 couples) and Parkinson's disease (58 couples). The psychosocial burden was recorded by the 15-item Relatives' Stress Scale (RSS). A factor analysis of this instrument produced a one-factor solution (CFI = 0.98) consisting of eight items with good face validity and acceptable reliability within each diagnostic group (Cronbach's alpha range 0.66-0.69). Covariates of this factor were identified using structural equation modeling (SEM) by regression on patient's age, gender, cognitive function (MMSE), activities of daily living (ADL) and depressive symptoms (MADRS). Disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep were the most frequently reported problems in all three groups. According to the mean sumscore on the RSS, the perceived psychosocial burden was similar across the diagnostic groups. In the final SEM model, a lower cognitive function of the patient was associated with a higher psychosocial burden on the spouses of patients with stroke (beta = -1.3, p = 0.01) and Parkinson's disease (beta = -0.89, p < 0.01), while in the dementia group, only an insignificant trend was demonstrated. In the dementia group, a significantly higher burden was identified on female spouses (beta = -0.56, p = 0.04). A heavier burden of care was also associated with depressive symptoms in the patients with Parkinson's disease. In neither group did the final model disclose any effect of ADL function on the spouse's psychosocial burden. Spouses caring for patients with dementia, stroke and Parkinson's disease perceive a similar type and level of psychosocial burden, independent of the disease. The cognitive functioning of the patient is a particularly important factor in this, especially when caring for patients with stroke or Parkinson's disease.

Demented and chronic depressed patients attending a day hospital: stress experienced by carers

Objective. The main hypothesis was that carers of elderly patients attending a day hospital with chronic depression experience considerable stress. A subsidiary hypothesis was that this stress is equivalent to that experienced by carers of dementia patients attending the same day hospital. Design. All attenders of the day hospital with a diagnosis of depression or dementia coresident with their principal carers. Setting. An urban psychogeriatric day hospital in the UK. Patients. A consultant diagnosis of dementia or depression with a history of present illness in excess of 12 months in patients over 65. The total sample was 57, 32 dementia and 25 depression (19 major depressive episode). Measures. Dementia patients: Mini-Mental State Examination (MMSE), Clifton Assessment Schedule (CAPE). Depressed patients: MMSE, Montgomery–Asberg Depression Rating Scale (MADRS) and Brief Psychiatric Rating Scale (BPRS). Carers: Semi-structured questionnaire, General Health Questionnaire (GHQ-30) and Relatives Stress Scale (RSS). Results. Dementia patients were older than depressed (75.66 vs 71.84). The two groups were of comparable severity. The dementia carers were significantly more stressed on the GHQ and RSS than depression carers but these carers also exceeded the threshold for psychiatric ‘caseness’. Important negative views about life upset and carer burden were expressed by both groups. Conclusions. The main hypothesis but not the subsidiary one is supported. More sophisticated study of the burden of caring for chronic depressive illness is required. © 1998 John Wiley & Sons, Ltd.

Demented and chronic depressed patients attending a day hospital: stress experienced by carers

The main hypothesis was that carers of elderly patients attending a day hospital with chronic depression experience considerable stress. A subsidiary hypothesis was that this stress is equivalent to that experienced by carers of dementia patients attending the same day hospital. All attenders of the day hospital with a diagnosis of depression or dementia coresident with their principal carers. An urban psychogeriatric day hospital in the UK. A consultant diagnosis of dementia or depression with a history of present illness in excess of 12 months in patients over 65. The total sample was 57, 32 dementia and 25 depression (19 major depressive episode). Dementia patients: Mini-Mental State Examination (MMSE), Clifton Assessment Schedule (CAPE). Depressed patients: MMSE, Montgomery-Asberg Depression Rating Scale (MADRS) and Brief Psychiatric Rating Scale (BPRS). Carers: Semi-structured questionnaire, General Health Questionnaire (GHQ-30) and Relatives Stress Scale (RSS). Dementia patients were older than depressed (75.66 vs 71.84). The two groups were of comparable severity. The dementia carers were significantly more stressed on the GHQ and RSS than depression carers but these carers also exceeded the threshold for psychiatric 'caseness'. Important negative views about life upset and carer burden were expressed by both groups. The main hypothesis but not the subsidiary one is supported. More sophisticated study of the burden of caring for chronic depressive illness is required.

In Reply

Editors note:—The above letter was referred to the authors of the original paper, and their reply follows. In reply:—Daly and Fredman suggest that caution should be exercised in interpreting our study, but while some methodological issues are cited to support their case, it would seem that their main concern is about our conclusion that psychiatric aspects of chronic disability were more stressful to caregivers than physical aspects. We agree with Daly and Fredman that in many caregiver studies, including ours, subject selection limits comparisons and we conceded this in our discussion. While it would have been useful to have another comparison group (preferably a control group of health couples), we do not accept that using non co-resident caregivers would have controlled for the effect of caregiving, since this implies that non co-resident caregivers are not really caregivers. Daly and Fredman assert that the measures of caregiver stress used in our study are seldom used in the United States. This is not entirely correct as the General Health Questionnaire (GHQ) has been used in many US studies1-4 as well as in the United Kingdom and Australia. Of course, the major problem is that there are no ‘gold standard’ assessment tools for measuring caregiver stress. While Daly and Fredman seek to minimize the level of physical dependency shown by the stroke patients in our study, the median Barthel score (BI) of 80 is consistent with a moderate degree of dependency. However, further data analysis also suggests that physical dependency appears to have a relatively minimal impact upon the subjective burden and psychological morbidity of caregivers. Using multiple regression analysis of the Relatives Stress Scale and the GHQ, we have shown that behavior and mood disturbance (BMDQ) are much better predictors of these outcomes than physical dependency (BI). (Draper et al, in preparation.) To some extent, the lack of predictive value of the BI may be due to its failure to measure instrumental ADL. In this regard, we concur with Daly and Fredman that the patient's functional limitations are likely to have a greater impact upon the caregiver than we have been able to demonstrate. We also agree with Daly and Fredman that changes occur in caregiving over time. In particular, while stroke severity is a predictor of caregiver stress in the ‘acute’ phase of caregiving (possibly up to 6 to 12 months post-stroke4-6) in chronic disability the level of physical dependency appears to have less impact upon caregivers, with some studies failing to find any effect.4, 5 In our study we included only stroke patients with a history of a stroke-induced disability of at least 6 months duration, and thus the limited impact of physical dependency is consistent with this literature. In conclusion, we believe that we are in broad agreement with Daly and Fredman in recognizing that caregivers of all elderly persons may be susceptible to the effects of caregiver stress.

The psychological well-being of supporters of the demented elderly.

Interviews were conducted with the co-resident supporters of 79 elderly subjects. Forty of these elderly subjects had been diagnosed as being demented (20 mildly, 12 moderately and eight severely) following psychiatric assessment. The supporters were screened for psychological well-being with the 60-item General Health Questionnaire (GHQ) and the Relatives' Stress Scale (RSS). Supporters of demented relatives showed significantly raised levels of stress on the RSS, but no increase in psychiatric morbidity on the GHQ, when compared with the supporters of non-demented relatives. The implications of these findings are discussed.