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.

To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer’s Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item ‘Marriage’ weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.

Background: During the two recent decades, advocacy has been a topic of much debate in the nursing profession. Although advocacy has embraced a crucial role for nurses, its extent is often limited in practice. While a variety of studies have been generated all over the world, barriers and facilitators in the patient advocacy have not been completely identified. This article presents the findings of a study exploring the barriers and facilitators influencing the role of advocacy among Iranian nurses. Method: This study was conducted by grounded theory method. Participants were 24 Iranian registered nurses working in a large university hospital in Tehran, Iran. Semi-structured interviews were used for data collection. All interviews were transcribed verbatim and simultaneously Constant comparative analysis was used according to the Strauss and Corbin method. Results: Through data analysis, several main themes emerged to describe the factors that hindered or facilitated patient advocacy. Nurses in this study identified powerlessness, lack of support, law, code of ethics and motivation, limited communication, physicians leading, risk of advocacy, royalty to peers, and insufficient time to interact with patients and families as barriers to advocacy. As for factors that facilitated nurses to act as a patient advocate, it was found that the nature of nurse-patient relationship, recognizing patients' needs, nurses' responsibility, physician as a colleague, and nurses' knowledge and skills could be influential in adopting the advocacy role. Conclusion: Participants believed that in this context taking an advocacy role is difficult for nurses due to the barriers mentioned. Therefore, they make decisions and act as a patient's advocate in any situation concerning patient needs and status of barriers and facilitators. In most cases, they can not act at an optimal level; instead they accept only what they can do, which we called 'limited advocacy' in this study. It is concluded that advocacy is contextually complex, and is a controversial and risky component of the nursing practice. Further research is needed to determine the possibility of a correlation between identified barriers/ facilitators and the use of advocacy.

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.

This article draws on the findings from several years of research on the health problems, quality of life and care of older people, especially during the later years of life, and argues that there is a need to develop and provide care according to the principles of palliative care. The findings indicate that palliative care, including a focus on symptom management, psychosocial and existential issues, may be appropriate for the long-term care of older or very old people – not just those at the very end of life. However, the way that palliative care is provided to older people at the very end of life needs to be adjusted. It should be adapted to the situation that accompanies advanced age and having lived a long life. It should recognize that symptom management ought to address clusters of health complaints rather than isolated symptoms, bodily changes and how they are perceived. Palliative care for older people should also take into consideration the importance of the social network as well as common fears of dying and the very essence of death, and fear of being separated from one’s loved ones and the activities valued in life.

This study aimed to investigate the occurrence of suicidal ideation and associated factors in older persons with dementia living at home in eight European countries, and its association with qualit...