One-year recovery from breast cancer: Importance of tumor and treatment-related factors, resilience, and sociodemographic factors for health-related quality of life.

Aim: This study investigated the changes in health-related quality of life from diagnosis to 1 year after diagnosis in breast cancer (BC) patients and the influence of clinical, psychological, and sociodemographic variables. An additional aim was to explore the mediating and moderating effects of resilience on changes in health-related quality of life. Methods: A longitudinal population-based study was conducted in southern Sweden. Newly diagnosed BC patients filled in measures of health-related quality of life, resilience, and sociodemographic variables at diagnosis (N = 980) and 1 year post-diagnosis (N = 780). Clinical variables were extracted from the Swedish national breast cancer quality registry. Mixed-model analyses were performed. Results: Most health-related quality of life outcomes declined from diagnosis to 1 year post-diagnosis. Role limitations due to emotional problems remained the same, whereas mental health improved. Lower health-related quality of life outcomes were associated with symptomatic detection and axillary dissection. Patients with a higher TNM stage and histologic grade and estrogen receptor (ER)-negative and human epidermal growth factor 2 (HER2)-positive status, who received chemotherapy, antibody therapy, or bisphosphonate therapy, had a steeper decline in outcomes. Changes in resilience were positively associated with all outcomes but did not mediate or moderate changes in any. Resilience at baseline moderated changes in bodily pain, vitality, and mental health, with higher baseline resilience being associated with a steeper decline, possibly due to floor or ceiling effects. Patients with lower socioeconomic status, educational level, and older age had a lower health-related quality of life. Conclusion: Physical health-related quality of life among breast cancer patients declined 1 year post-diagnosis, whereas mental health-related quality of life improved. Low resilient patients may be especially vulnerable at diagnosis. Biopsychosocial assessment at diagnosis can help identify patients who may require additional support. A multidimensional treatment plan should be started early to help overcome the problems in everyday activities.

Psychological Resilience and Health-Related Quality of Life in 418 Swedish Women with Primary Breast Cancer: Results from a Prospective Longitudinal Study.

Psychological resilience is considered a major protective psychological mechanism that enables a person to successfully handle significant adversities, e.g., a cancer diagnosis. Higher levels of resilience have been associated with higher levels of health-related quality of life (HRQoL) in breast cancer (BC) patients, but research examining the longitudinal process of resilience is limited. The aim of this population-based longitudinal study was to investigate resilience and HRQoL from diagnosis to one year later in 418 Swedish women with primary BC. Resilience was measured with the Connor-Davidson Resilience Scale 25, and HRQoL was measured with the Short Form Health Survey. The participants responded to questions regarding demographic and study-specific variables. Clinicopathological variables were collected from the Swedish National Quality Register for Breast Cancer. The mean score for resilience was 70.6 (standard deviation, SD = 13.0) at diagnosis and 68.9 (SD = 14.0) one year later, p < 0.001. The level of trust in the treatment and financial situation demonstrated the greatest association with the change in resilience levels. No oncological treatment modality was associated with a change in resilience levels. HRQoL decreased over time in the cohort. Resilience was positively associated with HRQoL at one year post diagnosis, which demonstrates that resilience is an important factor in maintaining HRQoL.

Dementia care and service systems - a mapping system tested in nine Swedish municipalities.

BACKGROUND: In dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life. METHODS: The aim of this study was to further develop and test a mapping system, and adapt it to a local context. In addition, the aim was to assess availability and utilization of care activities as well as professional providers' educational level in nine municipalities under the categories of Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care. This cross-sectional study was conducted in April through May 2015. Data was derived from the health care and social service systems in nine rural and urban municipalities in two counties in Sweden. The mapping system covered seven categories with altogether 56 types of health care and social service activities. RESULTS: The mapping system was found to be reliable with minor adaptations to the context mainly in terms of activities. Availability of care activities was common with low utilization regarding Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care and dementia trained staff was rare. Availability and utilization of care activities and professionals' educational level was higher concerning screening, the diagnostic procedures and treatment compared with outpatient care facilities, institutional care and palliative care. CONCLUSIONS: The mapping system enables policy makers and professionals to assess and develop health care and social service systems, to be offered proactively and on equal terms to people with dementia and their informal caregivers throughout the course of the disease. The educational level of professionals providing care and services may reveal where, in the chain of care, dementia-specific education for professionals, needs to be developed.

A multicenter study investigating the molecular fingerprint of psychological resilience in breast cancer patients: study protocol of the SCAN-B resilience study.

BACKGROUND: Individual patients differ in their psychological response when receiving a cancer diagnosis, in this case breast cancer. Given the same disease burden, some patients master the situation well, while others experience a great deal of stress, depression and lowered quality of life. Patients with high psychological resilience are likely to experience fewer stress reactions and better adapt to and manage the life threat and the demanding treatment that follows the diagnosis. If this phenomenon of mastering difficult situations is reflected also in biomolecular processes is not much studied, nor has its capacity for impacting the cancer prognosis been addressed. This project specifically aims, for the first time, to investigate how a breast cancer patient's psychological resilience is coupled to biomolecular parameters using advanced "omics" and, as a secondary aim, whether it relates to prognosis and quality of life one year after diagnosis. METHOD: The study population consists of newly diagnosed breast cancer patients enrolled in the Sweden Cancerome Analysis Network - Breast (SCAN-B) at four hospitals in Sweden. At the time of cancer diagnosis, the patient fills out the standardized method to measure psychological resilience, the "Connor-Davidson Resilience scale" (CD-RISC), the quality of life measure SF-36, as well as providing social and socioeconomic variables. In addition, one blood sample is collected. At the one-year follow-up, the patient will be subjected to the same assessments, and we also collect information regarding smoking, exercise habits, and BMI, as well as patients' trust in the treatment and their satisfaction with the care and treatment. DISCUSSION: This explorative hypothesis-generating project will pave the way for larger validation studies, potentially leading to a standardized method of measuring psychological resilience as an important parameter in cancer care. Revealing the body-mind interaction, in terms of psychological resilience and quality of life, will herald the development of truly personalized psychosocial care and cancer intervention treatment strategies. TRIAL REGISTRATION: This is a retrospectively registered trial at ClinicalTrials.gov, ID: NCT03430492 on February 6, 2018.

Informal and formal care: Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries.

BACKGROUND: In order to contain public health care spending, European countries attempt to promote informal caregiving. However, such a cost reducing strategy will only be successful if informal caregiving is a substitute for formal health care services. We therefore analyze the effect of informal caregiving for people with dementia on the use of several formal health care services. STUDY DESIGN: The empirical analysis is based on primary data generated by the EU-project 'RightTimePlaceCare' which is conducted in 8 European countries. 1223 people with dementia receiving informal care at home were included in the study. METHODS: Using a regression framework we analyze the relationship between informal care and three different formal health care services: the receipt of professional home care, the number of nurse visits and the number of outpatient visits. RESULTS: The relationship between formal and informal care depends on the specific type of formal care analyzed. For example, a higher amount of informal caregiving goes along with a lower demand for home care services and nurse visits but a higher number of outpatient visits. CONCLUSION: Increased informal caregiving effectively reduces public health care spending by reducing the amount of formal home care services. However, these effects differ between countries.

Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care.

Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-home care and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care. The aim of this study was to explore and describe professional care providers involved in dementia care and their educational level applying the International Standard Classification of Education (ISCED) and further to investigate practice in the RightTimePlaceCare-countries with regard to screening, diagnostic procedures and treatment of dementia and home care. The findings demonstrate more similarities than differences in terms of type of professionals involved among the countries although untrained staff were more common in some countries. Findings also show that many types of professionals are involved, who to turn to may not be clear, for instance in terms of medical specialities and it may be unclear who bears the ultimate responsibility. The professionals involved in diagnosis, treatment and care are educated to bachelor's level or above whilst everyday care is provided by people trained at a lower ISCED level or with no formal training. Registered nurses as well as occupational therapists have bachelor's degrees in most countries, but not in Germany or Estonia. Professionals specifically trained in dementia care are not so common. Further research is needed to reveal not only who provides the diagnostics and treatment, but also how home care is organised and quality assured. Many different types of professionals serve as providers along the trajectory of the disease which may be difficult for the patient and the informal caregiver to cope with.

Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease.

BACKGROUND: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated. AIMS: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease. DESIGN: A qualitative approach with focus group interviews. METHODS: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis. RESULTS: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'. CONCLUSION: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care.

BACKGROUND: This study forms part of a larger European programme investigating the transition from home care to long-term care (LTC) facility in people with dementia (PwD) at the margins of LTC. The aim of this study was to explore the factors associated with depressive symptomatology in PwD in different settings. METHODS: A total of 1,538 PwD, of which 957 received home care and 581 lived in a LTC facility, and their carers were interviewed. The Cornell Scale for Depression in Dementia (CSDD) measured depressive symptomatology. PwD completed measures of cognition and quality of life (QoL), and informal or formal carers completed measures on the PwD' QoL, neuropsychiatric behavior, activities of daily living, comorbidities, pain, and falls. Logistic regression was used to assess which factors contributed to depressive symptomatology in the two settings. RESULTS: Those receiving home care, living in Germany, and with severe dementia, showed the highest prevalence of depressive symptomatology. In the home care group, high levels of pain, neuropsychiatric behavior, and comorbidity, as well as low self- and proxy-rated QoL were factors associated with depressive symptomatology. In the LTC group, low proxy-rated QoL, more severe neuropsychiatric behavior, being a male informal carer and living in Germany were associated with depressive symptomatology. CONCLUSIONS: Evidence highlights the need for targeting different aspects in the management of depression in dementia, including offering improved pain management for those living in the community. Further research needs to explore cultural variations and carer gender factors associated with higher levels of depressive symptomatology.

Chinese women living with cervical cancer in the first 3 months after diagnosis: a qualitative study.

BACKGROUND: An earlier study revealed that Mainland Chinese women experienced a relatively low health-related quality of life during the first 3 months after being diagnosed with cervical cancer. This merited conducting a qualitative study to explore their experiences during this period. OBJECTIVE: The aim of this study was to describe the experiences of Chinese women with cervical cancer in the first 3 months after diagnosis. METHODS: A descriptive phenomenological method was used. Fourteen participants were interviewed at the time of diagnosis and 10 were reinterviewed 3 months later. The number of interviews conducted was determined by data saturation. RESULTS: Five themes were discerned: dealing with the emotional chaos down to the hassles caused by the disease and its treatment, handling the diagnosis and the disease in my own way and in accordance with Chinese culture, instinctively depending on my partner and experiencing improved relationships within the family but no sexual life, sharing information and support with fellow patients but hiding the diagnosis from friends and acquaintances, and returning to previous existence wanting to be treated as normal but with changed attitudes to life. CONCLUSIONS: The lived experience was seen as a sudden life transition triggered by receiving the diagnosis. Cultural and societal contexts influenced patient adaptation to the situation. IMPLICATIONS FOR PRACTICE: Family members and fellow patients could be mobilized to help patients since their support was highly valued. Regarding their hope for an ordinary life, patients could benefit from the relief of adverse effects and information, for instance, on how to resume sexual activity.

Depressive symptomatology in severe dementia in a European sample: prevalence, associated factors and prescription rate of antidepressants.

BACKGROUND: Depression is a common comorbid disorder of dementia. This study explores the prevalence of and factors associated with depressive symptomatology, and antidepressant prescription rates in severe dementia across eight European countries. METHODS: In total, 414 people with severe dementia completed measures of cognition and quality of life (QoL), whilst carers completed proxy measures of activities of daily living (ADLs), depression, neuropsychiatric symptoms, QoL and comorbidity. RESULTS: Findings indicated that 30% of the sample had depression, whilst the highest and lowest prevalence of depression was reported in Germany and Finland, respectively. Lower QoL, the presence of pain and more frequent neuropsychiatric symptoms were associated with depressive symptomatology, whilst no significant relationship between impairment of ADLs, comorbidity, and depression emerged. Spain and Estonia had the highest and lowest rates of antidepressant prescribing, respectively, whilst Germany had the highest discrepancy between depressive symptomatology and prescription. CONCLUSIONS: The study highlights variations across countries in the prevalence of depressive symptomatology in severe dementia and prescription of antidepressants. Information about factors associated with depressive symptomatology may help to better identify and manage depression.

Best practice and needs for improvement in the chain of care for persons with dementia in Sweden: a qualitative study based on focus group interviews.

BACKGROUND: Persons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers' views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. METHODS: The study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life). RESULTS: The results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care. CONCLUSIONS: The results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages.

Sense of coherence among cognitively intact nursing home residents--a five-year longitudinal study.

AIM AND OBJECTIVES: To examine how stable the sense of coherence (SOC) is over a five-year period among residents of nursing homes (NH) who are not cognitively impaired and whether components of social support influence SOC. BACKGROUND: Many studies have investigated the stability of SOC, and the findings have been inconsistent. Social support is a crucial resource in developing SOC. Few researchers have studied the stability of SOC and how various social support dimensions influence changes in SOC among older NH residents who are cognitively intact. DESIGN: The study was prospective and included baseline assessment and five-year follow-up. METHODS: The sample comprised 52 cognitively intact NH residents (Clinical Dementia Rating score ≤0.5). We obtained data through direct interviews using the Social Provisions Scale and Sense of Coherence Scale. RESULTS: SOC increased statistically significantly from baseline to follow-up. The social support subdimension reassurance of worth predicted change in SOC after adjustment for sociodemographic factors. When controlled for baseline SOC, attachment was associated with change in SOC, but reassurance of worth was not. CONCLUSIONS: The study indicates that the change in SOC over time during the 5 years of follow-up and the social support dimension attachment appear to be important components of change in SOC. Nursing personnel should be aware of the residents' individual needs for attachment and the importance of emotional support for personal strength and ability to cope.

Health-related quality of life and associated factors in Chinese women with cervical cancer: a 9-month follow-up.

BACKGROUND: There is a lack of health-related quality of life (HRQOL) studies in Chinese women with cervical cancer. OBJECTIVE: The objectives of this study were to investigate the HRQOL trajectory in women with cervical cancer in Mainland China in the 9 months following diagnosis and to identify factors that influence HRQOL. METHODS: Initially, 187 patients with cervical cancer were included in the study, but at each follow-up, the number declined to 128, 112, and 106, respectively. The Functional Assessment of Cancer Therapy-Cervix (FACT-Cx) was used to collect data sequentially at the time of diagnosis (T1) and at 3 (T2), 6 (T3), and 9 months after diagnosis (T4). Medical characteristics, sense of coherence, and social support were included as factors likely to contribute to HRQOL. RESULTS: Functional Assessment of Cancer Therapy-Cervix ranged in mean from 120.30 at T1 to 126.22 at T4 (P = .001), whereas social/family well-being ranged from 23.56 at T1 to 20.23 at T4 (P = .025). In the stepwise regression with FACT-Cx as the independent variable, sense of coherence entered the equation with the highest standardized coefficients (0.554) at T1 and stage II at T2 and T3 (-0.53 and -0.26, respectively). Satisfaction with family relationships had the second highest standardized coefficient (-0.21) at T3. CONCLUSIONS: Overall HRQOL improved, although social/family well-being deteriorated. Sense of coherence contributed to HRQOL initially, whereas disease stage and family support did so later on. IMPLICATIONS FOR PRACTICE: The study highlights the importance of identifying those with a low sense of coherence at the time of diagnosis. Family members should be included in caring process as a vital source of social support.

Hospital utilization and costs for spinal cord stimulation compared with enhanced external counterpulsation for refractory angina pectoris.

RATIONALE, AIMS AND OBJECTIVES: The aim of this study was to compare acute hospital utilization and costs for patients with refractory angina pectoris undergoing spinal cord stimulation (SCS) versus enhanced external counterpulsation (EECP). METHOD: Seventy-three persons were included in this register study. The acute hospital utilization and costs for SCS and EECP were followed over a period from 12 months before treatment to 24 months after treatment using Patient Administrative Support in Skåne for publicly organized care. RESULTS: SCS was significantly more expensive than EECP (P < 0.001). Both SCS and EECP entailed fewer days of hospitalization for coronary artery disease in the 12-month follow-up compared with the 12 months preceding treatment. Patients treated with EECP showed an association between reduced hospital admissions and an improved Canadian Cardiovascular Society classification class compared with 1 year before treatment. A significant reduction in cost was seen in both the SCS group (P = 0.018 and P = 0.001, respectively) and the EECP group (P = 0.002 and P = 0.045, respectively) during 12 and 24 months of follow-up compared with before treatment. There were no significant differences between the groups for hospitalization days or admissions, including costs, at the different follow-ups. CONCLUSIONS: Cost-effective treatment modalities such as SCS and EECP are valuable additions to medical and revascularization therapy in patients with refractory angina pectoris. Pre-existing conditions and the patient's preferences should be taken in consideration when clinicians choose between treatments for this group of patients.

Quality of care in Icelandic nursing homes measured with Minimum Data Set quality indicators: retrospective analysis of nursing home data over 7 years.

BACKGROUND: The increasing need for long-term care as well as diminished financial resources may compromise the quality of care of older people. Thus the need for clinically based quality of care monitoring to guide development of long-term services has been pointed out. OBJECTIVES: The aim of this study was to investigate trends in quality of care during 2003-2009 as reflected in the Minimum Data Set quality indicator outcome in Icelandic nursing homes and to investigate the association of Minimum Data Set quality indicators with residents' health status (health stability, pain, depression and cognitive performance) and functional profile (activities of daily living and social engagement). DESIGN: Retrospective analysis of nursing home data over 7 years. METHODS: The sample used for analysis was 11,034 Minimum Data Set assessments of 3694 residents living in Icelandic nursing homes in 2003-2009. Minimum Data Set quality indicators were used to measure quality of care. The chi-square test for trend and multivariate logistic regression were used to analyse the data. RESULTS: The mean age of residents during the period of the study ranged from 82.3 (SD 9.1) to 85.1 (SD 8.3) and women accounted for from 65.2% to 67.8%. Findings for 16 out of 20 quality indicators indicated a decline in quality of care (p<0.05), although in 12 out of 20 indicators the prevalence was lower than 25%. One quality indicator showed improvement, i.e. for "Bladder and bowel incontinence without a toileting plan" from 17.4% in 2003 decreasing to 11.5% in 2009 (p<0.001). Residents' health and functional status partially explain the increased prevalence of the quality indicators over time. CONCLUSION: Further developments in quality of care in Icelandic nursing homes need to be monitored as well as the association between residents' health and functional status and the Minimum Data Set quality indicator outcome. The areas of care where the Minimum Data Set quality indicators showed need for improvement included treatment of depression, number of medications, resident activity level and behavioural symptoms.

Effects of a standard versus comprehensive oral care protocol among intubated neuroscience ICU patients: results of a randomized controlled trial.

The purpose of the study was to compare changes in oral health during intubation until 48 hours after extubation in neuroscience intensive care unit (ICU) patients enrolled in a standard or a comprehensive oral care protocol. The effects of manual toothbrushing (standard group, n = 31) were compared with those of tongue scraping, electric toothbrushing, and moisturizing (comprehensive group, n = 25) in intubated patients in a neuroscience ICU in a 2-year randomized clinical trial. Oral health was evaluated based on the Oral Assessment Guide (OAG) on enrollment, the day of extubation, and 48 hours after extubation. There were no significant differences in the frequency of the oral care protocol. Protocol compliance exceeded 91% in both groups. The total OAG score and all eight categories significantly deteriorated (Friedman test, p < .001, Bonferroni corrected) in the standard oral care group and did not return to baseline after extubation. Large effect sizes were present at all three points in this group. The total OAG score deteriorated during intubation within the comprehensive protocol group (Friedman test, p < .004) but returned to baseline status after extubation. In four categories, the ratings on tongue, mucous membranes, gingiva, and teeth did not deteriorate significantly over time. Published oral care protocols are substandard in promoting and maintaining oral health in intubated patients. A comprehensive oral care protocol, using a tongue scraper, an electrical toothbrush, and pharmacological moisturizers, was more effective for oral hygiene throughout intubation and after extubation than manual toothbrushing alone.

Thresholds for minimum data set quality indicators developed and applied in icelandic nursing homes.

A modified Delphi method was used to determine thresholds for Minimum Data Set quality indicators for Icelandic nursing homes. The thresholds were then applied to quality outcomes in Icelandic nursing homes for the year 2009. The thresholds indicate areas of good or poor care and can be used for planning services. Icelandic nursing homes seem to be doing best in incontinence and nutritional care. However, improvement is needed in care practices for depression, medication, and activity.

A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study.

BACKGROUND: Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected. METHODS/DESIGN: This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons. DISCUSSION: The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.

Compensating, controlling, resigning and accepting-older person's perception of physical decline.

It is important to know about how frail older people experience their physical decline and how they adapt to their bodily changes so that the health system can design preventive interventions targeting this group early on in the disability process.The aim of this study was to explore how older people perceive their physical decline. The study is qualitative in design and based on interviews with older persons, who were in an acute care process. Fourteen people, five men and nine women, aged 74 � 92 years (mean 81 years) were included in the study. Content analysis was used. The main finding was that physical decline was marked as occurring in two dimensions. One dimension was the physical decline and its impact on the individual's physical body (labelled individual body). The other dimension was the impact on the body in its environmental context such as the home or the society (labelled contextual body). The strategies for adapting constituted the two sub-themes, which were labeled compensating/controlling and accepting/resignation. The strategies were executed both on an intellectual level and practical level. For healthcare workers striving to increase physical activity, knowledge about how closely related self-image and physical ability are is useful when helping the frail older people. Increasing coping strategies for handling the general life situation may be a useful way of increasing physical activity and making it feel meaningful, despite the person's frail health situation with limited physical and sometimes psychological resources.