Health and quality of life after discharge from hospital: A prospective study on opioid treatment for acute pain after trauma or surgery.

OBJECTIVES: The aim of this study was to examine opioid use, health, quality of life, and pain after discharge from hospital in opioid naïve patients receiving opioid treatment for sub acute pain after trauma or surgery. METHODS: A prospective cohort with a four-week follow-up was conducted. Of the 62 patients included, 58 remained in the follow-up. The following questionnaires were assessed: Numeric Rating Scale for pain (NRS), EQ-5D-5L (health-related quality of life) and EQ-VAS (self-reported health). Paired t-test, two-sample t-test and chi square test were used in the study. RESULTS: Every fourth participant still received opioid treatment at follow-up, and reported no significant increase in EQ-VAS. Overall, an improvement in EQ-5D-5L (0.569 (SD = 0.233) to 0.694 (SD = 0.152), p < 0.001) and EQ-VAS (55 (SD = 20) to 63 (SD = 18), p = 0.001) from baseline to follow-up was found. Pain intensity decreased in the same period (6.4 (SD = 2.2) to 3.5 (SD = 2.6), p < 0.001). An unmet need for information regarding pain management was reported by 32% of the participants. CONCLUSIONS: Our findings show that patients with acute pain, treated with opioids, reported improved pain intensity, health-related quality of life and self-reported health four weeks after discharge. There is room for improvement regarding the provision of patient information on pain management.

Trust-building interventions to home-dwelling persons with dementia who resist care.

BACKGROUND: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional's understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. RESEARCH AIM: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals in documents of decisions of forced treatment and care. RESEARCH DESIGN: A qualitative thematic document analysis inspired by critical realism was conducted. PARTICIPANTS AND RESEARCH CONTEXT: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. ETHICAL CONSIDERATIONS: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. FINDINGS: We found that "balancing safe care with the person's integrity" was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. DISCUSSION AND CONCLUSION: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for.

Autonomy conquers all: a thematic analysis of nurses' professional judgement encountering resistance to care from home-dwelling persons with dementia.

BACKGROUND: Adequate care support from home health care nurses is needed to meet the needs of an increasing number of home-dwelling persons with dementia and those who resist care. The decisions nurses make in home health care when encountering resistance from persons with dementia have an extensive impact on the quality of care and access to care. There is little research on what influences nurse's encounters with resistance to care from home-dwelling persons with dementia. RESEARCH AIM: To get insight into how nurses experience resistance to care from home-dwelling persons with dementia. METHODS: A qualitative research design using a thematic analysis was conducted following the six steps by Braun and Clarke. Data was gathered from three focus group and three individual interviews, and a total of 18 nurses from home health care participated. The interviews took place over a period of 5 months, from December 2020 to April 2021. ETHICAL CONSIDERATIONS: Approved by the Norwegian Centre for Research, reference number 515138 and by the research advisers and home care managers in each section of the municipality. RESULTS: Two main themes were identified: 1) Challenged by complex and inadequate care structures and 2) Adapting care according to circumstances. There were three subthemes within the first main theme: lack of systematic collaboration and understanding, insufficient flexibility to care, and the challenge of privacy. In the second main theme, there were three subthemes: avoid forced treatment and care to protect autonomy, gray-areas of coercive care and reduced care. The two main themes seemed to be interdependent, as challenges and changes in organizational structures influenced how nurses could conduct their care practices. CONCLUSION: Our findings indicate that nurses' responsibility to decide how to conduct care is downplayed when facing resistance. Further, their professional judgement is influenced by contextual factors and characterized by a strong commitment to avoid forced treatment and care. A continuous challenge is to safeguard shared decision-making at the same time as it is balanced against risks of severe health damage in home-dwelling persons with dementia. A fundamental question to ask is whether autonomy does conquer all, even when severe health damage is at stake.

Effects of oral nutrition supplements in persons with dementia: A systematic review.

OBJECTIVE: Persons with dementia are at risk of malnutrition, evidenced by low dietary intake, which has consequences for nutritional status, activity of daily living and disease progression. The effects of oral nutrition supplements (ONS) on nutritional intake, nutritional status, and cognitive and physical outcomes in older persons with dementia were evaluated. METHODS: PubMed, Medline, Embase, CINAHL and the Cochrane Central Register of Controlled Trials were searched in December 2017, and this was repeated in May 2019. The Preferred Reporting Items for Systematic Reviews and Analysis (PRISMA) checklist was used. Papers were considered if they presented experimental clinical trials using oral nutritional supplements to persons diagnosed with dementia, including Alzheimer's disease and mild cognitive impairment, and conducted in hospitals, nursing homes or homes. RESULTS: We included ten articles reporting nine clinical trials. A total of 407 persons with dementia were included, of whom 228 used ONS for 7 to 180 days. Nutritional intake improved by 201 to 600 kcal/day. Energy intake from ordinary foods was not affected, thus ONS improved the persons daily intake of energy and protein. Body weight, muscle mass, and nutritional biomarkers in blood improved in the intervention groups compared with the control groups. No effects on cognition or physical outcomes were observed. CONCLUSION: ONS increases the intake of energy and protein and improves nutritional status in persons with dementia; however, RCTs with longer intervention periods are needed to investigate the impact on cognitive and functional outcomes.

Forced treatment and care in home-dwelling persons with dementia.

BACKGROUND: The use of forced treatment and care of home-dwelling persons with dementia is a universally important topic. These patients are completely dependent on care from others to continue living at home. AIM: This study aimed to gain insights into formal decisions related to the forced treatment and care of home-dwelling persons with dementia. DESIGN AND SAMPLE: This is a cross-sectional study, based on formal decisions of forced treatment and care of home-dwelling persons with dementia in Norway between 1 January 2015 and 31 December 2016. METHODS: Descriptive statistical analysis. Statistically significant associations suitable for binary logistic regression were presented as odds ratios with 95% confidence intervals. ETHICAL CONSIDERATIONS: Approved by The Regional Committee for Medical and Health Research Ethics, and by the Norwegian Center for Research. RESULTS: We found 108 formal decisions of forced treatment and care of persons with dementia. Decisions of admission represented 57% of the data, other medical and safety decisions 27%, and assistance with activities of daily living 16%. In most cases, physicians were responsible for the decisions (77%), but nurses and family members were often involved. DISCUSSION AND CONCLUSION: This study demonstrated a prevalence rate of formally documented decisions of forced treatment and care much lower than findings in previous studies. Poor documentation may constitute a risk for the safety and wellbeing of persons with dementia. Although physicians were usually responsible for the decisions, nurses and family members were often involved in the process. Family participation in forced treatment and care raises ethical dilemmas. More research on the experiences of nurses, persons with dementia and family members with forced treatment and care is needed to aid ethical, legal, and clinically challenging decision-making processes.

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study.

BACKGROUND: As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS: Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS: We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION: We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

BACKGROUND: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. METHODS: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. DISCUSSION: We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.

Home-dwelling persons with dementia's perception on care support: Qualitative study.

BACKGROUND: Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. RESEARCH OBJECTIVE: This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. RESEARCH DESIGN: A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. PARTICIPANTS AND RESEARCH CONTEXT: Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. ETHICAL CONSIDERATIONS: Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants' integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. FINDINGS: The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants' assessments of daycare centers relied on specific aspects, with high individual variety. DISCUSSION AND CONCLUSION: The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons' everyday life. This indicates that patient participation in decision-making processes for this group is-in addition to be a judicial and ethical requirement-crucial to ensure adequate care and support.

Quality of life of family carers of persons with young-onset compared to late-onset dementia.

Objectives: To compare quality of life (QOL) of family carers of persons with young- (YOD) to late-onset dementia (LOD).Methods: This was a cross-sectional comparison of 88 carers of persons with YOD and 100 carers of persons with LOD. The Quality of Life - Alzheimer's Disease questionnaire (QOL-AD) was used to measure QOL of both carers and persons with dementia. Depressive symptoms were measured by the Geriatric Depression Scale (GDS) for carers and the Cornell Scale for Depression in Dementia for persons with dementia. Care burden was measured by the Relatives' Stress Scale. Activities of Daily Living (ADL) of the persons with dementia were assessed using the total score from the Lawton & Brody Instrumental-ADL scale and the Physical Self-Maintenance Scale. Multiple linear regression models with interactions between covariates and group (YOD versus LOD) were estimated.Results: The QOL-AD scores of YOD-carers were significantly poorer compared to LOD-carers (mean difference 2.5 (95% CI 0.7; 4.3), p = 0.006). Poorer QOL of carers was associated with more depressive symptoms (mean QOL-AD change -0.5 (-0.6; -0.3), p < 0.001), but with no difference between the two groups. In contrast to LOD, QOL of carers of people with YOD was also significantly associated with symptom duration (p = 0.002), depressive symptoms of the persons with dementia (p = 0.030), ADL (p = 0.001), and carer burden (p = 0.002).Conclusion: YOD-carers reported significantly poorer QOL compared to LOD-carers. QOL was significantly associated with depressive symptoms in carers of both groups.

Discharge care quality in hospitalised elderly patients: Extended validation of the Discharge Care Experiences Survey.

BACKGROUND: The Discharge Care Experiences Survey (DICARES) was previously developed to measure quality of discharge care in elderly patients (≥ 65 years). The objective of this study was to test the factorial validity of responses of the DICARES, and to investigate its association with existing quality indicators. METHODS: We conducted a cross-sectional study at two hospitals in Bergen, Western Norway. A survey, including DICARES, was sent by postal mail to 1,418 patients 30 days after discharge from hospital. To test the previously identified three-factor structure of the DICARES we applied a first order confirmatory factor analysis with corresponding fit indices and reliability measures. Spearman's correlation coefficients, and linear regression, was used to investigate the association of DICARES scores with the quality indicators Nordic Patient Experiences Questionnaire and emergency readmission within 30 days. RESULTS: A total of 493 (35%) patients completed the survey. The mean age of the respondents was 79 years (SD = 8) and 52% were women. The confirmatory factor analysis showed acceptable fit. Cronbach's α between items within factors was 0.82 (Coping after discharge), 0.71 (Adherence to treatment), and 0.66 (Participation in discharge planning). DICARES was moderately correlated with the Nordic Patient Experiences Questionnaire (rho = 0.49, P < 0.001). DICARES overall score was higher in patients with no readmissions compared to those who were emergency readmitted within 30 days (P < 0.001), indicating that more positive experiences were associated with fewer readmissions. CONCLUSIONS: DICARES appears to be a feasible instrument for measuring quality of discharge care in elderly patients (≥ 65 years). This brief questionnaire seems to be sensitive with regard to readmission, and independent of comorbidity. Further studies of patients' experiences are warranted to identify elements that impact on discharge care in other patient groups.

"We live as good a life as we can, in the situation we're in" - the significance of the home as perceived by persons with dementia.

BACKGROUND: The coming years will see more persons with dementia living longer at home. However, "the home" is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. METHODS: Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on "The home" were chosen as a framework for the theoretical interpretation of the findings. RESULTS: The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. CONCLUSION: The study suggests that the participants' home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.

Measuring discharge quality based on elderly patients' experiences with discharge conversation: a cross-sectional study.

Background: Discharge conversation is an essential part of preparing patients for the period after hospitalisation. Successful communication during such conversations is associated with improved health outcomes for patients. Objective: To investigate the association between discharge conversation and discharge quality assessed by measuring elderly patients' experiences. Methods: In this cross-sectional study, we surveyed all patients ≥65 years who had been discharged from two medical units in two hospitals in Western Norway 30 days prior. We measured patient experiences using two previously validated instruments: The Discharge Care Experiences Survey Modified (DICARES-M) and The Nordic Patient Experiences Questionnaire (NORPEQ). We examined differences in characteristics between patients who reported having a discharge conversation with those who did not, and used regression analyses to examine the associations of the DICARES-M and NORPEQ with the usefulness of discharge conversation. Results: Of the 1418 invited patients, 487 (34%) returned the survey. Their mean age was 78.5 years (SD=8.3) and 52% were women. The total sample mean scores for the DICARES-M and NORPEQ were 3.9 (SD=0.7, range: 1.5-5.0) and 4.0 (SD=0.7, range: 2.2-5.0), respectively. Higher DICARES-M and NORPEQ scores were found for patients who reported having a discharge conversation (74%) compared with those who did not (15%), or were unsure (11%) whether they had a conversation (p<0.001). Patients who considered the conversation more useful had significantly higher scores on both the DICARES-M and NORPEQ (p<0.001). Conclusions: Reported discharge conversation at the hospital was correlated with positive patient experiences measurements indicating the increased quality of hospital discharge care. The reported usefulness of the conversation had a significant association with discharge care quality.

Quality of Life in People with Young-Onset Alzheimer's Dementia and Frontotemporal Dementia.

AIMS: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer's (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). METHODS: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer's Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. RESULTS: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). CONCLUSION: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.

Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.

Family carers' experiences of attending a multicomponent psychosocial intervention program for carers and persons with dementia.

BACKGROUND: Psychosocial interventions for persons with dementia and their primary family carers are promising approaches to reducing the challenges associated with care, but, obtaining significant outcomes may be difficult. Even though carers in general are satisfied with such interventions, few studies have evaluated the interventions by means of qualitative methods. AIM: The objective of the study reported here was to investigate family carers' experiences of a multicomponent psychosocial intervention program, and also to offer advice on how to develop the intervention program. METHODS: Content analyses were taken from individual qualitative interviews conducted in 2012 with 20 carers (aged 50-82 years) who participated in a psychosocial intervention program that included education, individual and family counseling, and parallel group sessions for carers and persons with dementia. RESULTS: Two main categories emerged: 1) benefits of the intervention program, which sets out the informants' experiences for the benefits of participation, described in the subcategories "importance of content and group organization" and "importance of social support"; and 2) missing content in the intervention program, which details the informants' suggestions for future interventions, contained in the subcategories "need for extended content" and "need for new group organization". CONCLUSION: The carers found the interventions useful. The importance of even earlier and more flexible interventions for the family carers, the extended family, and the persons with dementia was underscored.

Implementation of a multicomponent psychosocial programme for persons with dementia and their families in Norwegian municipalities: experiences from the perspective of healthcare professionals who performed the intervention.

BACKGROUND: A randomised controlled intervention study was conducted in 17 Norwegian municipalities to provide home-dwelling people with dementia and their families with knowledge and skills to cope with the emerging problems and stresses of everyday life. It included training health professionals to carry out the intervention. Since little is known about possible benefits for health professionals of participating in such a study in terms of knowledge and change of practice as well as their views on whether the intervention is useful, we carried out this study. AIM: To investigate the outcome of the study from the perspective of the healthcare professionals who participated in the intervention. METHOD: Interviews with 19 health professionals were performed during 2012, using three focus groups and six individual interviews. The sample was purposive and included informants aged 34-61 years from 13 municipalities. RESULTS: Three main categories emerged: challenges, new knowledge and service development. The category challenges details the challenges connected with professionals' participation in the intervention and how they dealt with them and is described in three subcategories. The category new knowledge demonstrates the knowledge the professionals achieved while conducting the intervention and is described through three subcategories. Service development presented how the informants' experiences could contribute to improve the provision of care and details in one subcategory. CONCLUSION: The results revealed a need for more knowledge among health professionals about the situation of home-dwelling persons with dementia and their families. The study indicated that health professionals must be more aware of these persons' abilities to find their own solutions to their problems. Structured individual interventions as well as group-based interventions in the early stages of dementia and throughout the course of the disorder seem beneficial. There is a need for better collaboration between the specialist health services, GPs and health workers in the municipalities.

The effect of psychosocial support intervention on depression in patients with dementia and their family caregivers: an assessor-blinded randomized controlled trial.

BACKGROUND/AIM: A three-component tailored psychosocial 12-month assessor-blinded randomized controlled trial to reduce depression in people with dementia (PWD) and carers was conducted. METHODS: A total of 230 home-dwelling dyads of PWD and their carers were randomized to usual care or intervention consisting of three components over 12 months. Primary outcomes were the difference between the baseline and 12-month score on the Cornell Scale of Depression in Dementia (CSDD) in the PWD and on the Geriatric Depression Scale (GDS) in the carers. RESULTS: The intent-to-treat difference between the baseline and 12-month change score was not significant between the intervention and control groups for the CSDD (p = 0.95) or GDS (p = 0.82). CONCLUSIONS: The trial did not show a significant difference between usual care and the intervention on depressive symptoms in PWD or their family caregivers. © 2013 S. Karger AG, Basel.

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.

The quality of life of people with dementia and their family carers.

BACKGROUND: We aimed to identify factors associated with the quality of life (QoL) of 'persons with dementia' (PWDs) and their family carers. METHOD: Two-hundred and thirty dyads of PWDs and their family carers were included. The PWDs were assessed with the Neuropsychiatric Inventory (NPI-Q), two Activities of Daily Living (ADL) scales, the Cornell Scale and the QoL-Alzheimer's Disease scale (QoL-AD; self- and proxy-reported scores). The carers were assessed with the QoL-AD and the Geriatric Depression Scale. RESULTS: Factors associated with self-reported QoL were depression (ß = -0.26, p < 0.001) and impaired ADL (ß = -0.26, p < 0.001) and with proxy-rated QoL were NPI (ß = -0.18, p = 0.02), depression (ß = -0.32, p < 0.001) and impaired ADL (ß = -0.43, p < 0.001). Factors associated with QoL in carers living together with the PWDs were depression (ß = -0.56, p < 0.001) and having a hobby (ß = 0.19, p = 0.01), whereas depression was associated with QoL in those who lived separately from the PWD (ß = -0.60, p < 0.001). CONCLUSION: Depression and impaired ADL were associated with the self- and proxy-rated QoL of the PWDs, whereas depression in the carers negatively affected their QoL.