Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

There is a need to raise special awareness of YOD to facilitate a timely diagnosis.

The European Union, the Framework Programme of the European Commission.

Overcome of delays in the timely diagnosis of dementia needs more than specialist services. They should address the processes associated with stigma, age and dementia, especially where these relate to physician practice and diagnostic disclosure. Stigma is perceived as variable across European States, with a promising finding that its impact is relatively small in countries with the widest range of dementia care services.

Background: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.Methods: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.Results: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.Conclusion: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals’ inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

Background: Advocates for quality and safety have called for healthcare that is patient-centred and decision-making that involves patients. Objective: The aim of the paper is to explore the barriers and facilitators to patient-centred care in the hospital discharge process. Methods: A qualitative study using purposive sampling of 192 individual interviews and 26 focus group interviews was conducted in five European Union countries with patients and/or family members, hospital physicians and nurses, and community general practitioners and nurses. A modified Grounded Theory approach was used to analyse the data. Results: The barriers and facilitators were classified into 15 categories from which four themes emerged: (1) healthcare providers do not sufficiently prioritise discharge consultations with patients and family members due to time restraints and competing care obligations; (2) discharge communication varied from instructing patients and family members to shared decision-making; (3) patients often feel unprepared for discharge, and postdischarge care is not tailored to individual patient needs and preferences; and (4) pressure on available hospital beds and community resources affect the discharge process. Conclusions: Our findings suggest that involvement of patients and families in the preparations for discharge is determined by the extent to which care providers are willing and able to accommodate patients' and families' capabilities, needs and preferences. Future interventions should be directed at healthcare providers' attitudes and their organisation's leadership, with a focus on improving communication among care providers, patients and families, and between hospital and community care providers.

Contemporary healthcare policies are designed to shape the conditions that can help delay the institutionalization of patients with dementia. This can be done by developing support programs that minimize healthcare risks for the patients with dementia and their informal caregivers. Many support programs have been developed, and some of them are effective, but there has been no systematic review with a meta-analysis of all types of nonpharmacological support programs with odds of institutionalization or time to institutionalization as an outcome measure. A systematic review with a meta-analysis was therefore conducted to estimate the overall effectiveness of nonpharmacological support programs for caregivers and patients with dementia that are intended to delay institutionalization. Thirteen support programs with a total of 9,043 patients were included in the meta-analyses. The estimated overall effectiveness suggests that these programs significantly decrease the odds of institutionalization (odds ratio (OR)=0.66, 95% confidence interval (CI)=0.43-0.99, P=.05) and significantly increase the time to institutionalization (standardized mean difference (SMD)=1.44, 95% CI=0.07-2.81, P=.04). A meta-analysis of the best-quality studies still showed a positive significant result for the odds of institutionalization (OR=0.60, 95% CI=0.43-0.85, P=.004), although the time to institutionalization was no longer significant (SMD=1.55, 95% CI=-0.35- 3.45, P=.11). The analysis of the intervention characteristics showed that actively involving caregivers in making choices about treatments distinguishes effective from ineffective support programs. Further investigation should be directed toward calculating the potential efficiency of these support programs by applying net-benefit or cost-effectiveness analysis.

Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.