The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer's disease and dementia with Lewy bodies.

OBJECTIVE: The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. DESIGN: Prospective cohort study. SETTING: Participants were recruited from the Dementia Study of Western Norway (DemVest). PARTICIPANTS: This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer's disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. MEASUREMENTS: The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. RESULTS: Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = -137; CI, -209, -64.5), having limitations on social life (estimate = -118; CI, -172, -64), not being able to get away on vacation (estimate -116; CI, -158.3, -73.7), and feeling unable to cope with the situation (estimate = -63; CI, -122.6, -3.4). CONCLUSIONS: Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA.

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

OBJECTIVE: 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. METHODS: 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. RESULTS: 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 75.9 years (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. CONCLUSION: 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.

Patterns of carer distress over time in mild dementia.

OBJECTIVE: To study the level of carer reported distress in mild dementia, over a 3-year period. METHODS: This study is part of the Norwegian DemVest-study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed. RESULTS: Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow-up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow-up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3-year period. However, admission to a nursing home during the first year of follow-up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home. CONCLUSION: Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers.

The inter-play between facilitation and context in the promoting action on research implementation in health services framework: A qualitative exploratory implementation study embedded in a cluster randomized controlled trial to reduce restraint in nursing homes.

AIM: To explore the inter-play between external facilitation and nursing home contexts relative to intervention outcomes. BACKGROUND: The Promoting Action on Research Implementation in Health Services framework is frequently used to theoretically inform implementation and research in nursing and recent reviews indicate high face validity for health services. However, the inter-play and relationship between framework sub-elements of evidence, context and facilitation and the prospective utility in non-English speaking contexts warrant further illumination. DESIGN: In an overarching single-blind cluster-randomized controlled trial, we applied participatory action research and ethnography from August 2011-June 2015 to evaluate a standardized education intervention to reduce restraint and agitation in nursing home residents living with dementia. The trial results are published elsewhere. METHODS: Prospectively informed by the PARIHS framework, a research team and eight facilitators participating in dual roles as action researchers designed, implemented, and evaluated the intervention. How contextual factors influenced the facilitation processes were explored in focus group interviews (1), reflection notes (84) written by the facilitators' after each education session, ethnographic field studies (6 homes), and co-analysis workshops (5). Directed content analysis was used to analyse data. RESULTS: Clinical leaders taking roles of internal facilitator influenced the success of implementation, while complex and fluctuating context elements determined whether restraint use was reduced- or not. The PARIHS framework was found to be relevant in a non-English nursing home setting, albeit some elements merit further conceptualization. CONCLUSIONS: Our findings confirm the prospective utility of the PARIHS framework for implementation in a non-English context, particularly the notion of implementation processes as dynamic and multifaceted.

The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review.

OBJECTIVE: Neuropsychiatric symptoms (NPSs) are common in dementia, and they have been identified as important care-recipient variables in terms of their impact on caregiver burden. The aim of this review was to describe how individual NPSs in dementia, assessed using the Neuropsychiatric Inventory, are associated with caregiver burden. METHODS: We performed a systematic review of English language, peer-reviewed articles retrieved from MEDLINE, PSYCINFO, and EMBASE. RESULTS: A total of 13 studies met the inclusion criteria. Four studies examined the association between individual NPSs and caregiver burden using the Spearman rank correlation test, while three used Pearson's correlation test. Of the remaining studies, five used multiple regression analyses and one the chi-squared test. The majority of included studies did not differentiate between dementia subtypes in the analysis or mainly included only caregivers of people with Alzheimer's disease. The Clinical Dementia Rating score and mean Mini-Mental State Examination score indicate mild to moderate dementia. The majority of caregivers were women, most of whom were children (53.8%) or spouses (36%). The data indicated that irritability, followed by agitation, sleep disturbances, anxiety, apathy, and delusion seem to impact caregiver burden the most. CONCLUSION: Our principal finding is that irritability, agitation, sleep disturbances, anxiety, apathy, and delusion seem to exert the most impact on caregiver burden. Heterogeneity in the measures and statistical analyses used, however, makes it difficult to make conclusive interpretations. Future research in this field would benefit from standardization of the scientific methodology in use. Copyright © 2017 John Wiley & Sons, Ltd.

Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease.

OBJECTIVE: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers. METHODS: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses. RESULTS: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005). CONCLUSION: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd. ETHICS AND DISSEMINATION: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.