Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers' stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

BACKGROUND: Though many staff gain satisfaction from working with people with dementia in residential facilities, they also experience significant stress. This is a serious issue because this in turn can affect the quality of care. There is, however, a lack of instruments to measure staff strain in the dementia-specific residential care environment, and the aim of this study, accordingly, was to develop the "Strain in Dementia Care Scale."

METHODS: The instrument was developed in three steps. In the first step, items were derived from six focus group discussions with 35 nurses in the United Kingdom, Australia, and Sweden concerning their experience of strain. In the second step, a preliminary 64-item scale was distributed to 927 dementia care staff in Australia and Sweden, which, based on exploratory factor analysis, resulted in a 29-item scale. In the final step, the 29-item scale was distributed to a new sample of 346 staff in Sweden, and the results were subjected to confirmatory factor analysis.

RESULTS: The final scale comprised the following 27 items producing a five-factor solution: Frustrated empathy; difficulties understanding and interpreting; balancing competing needs; balancing emotional involvement; and lack of recognition.

CONCLUSIONS: The scale can be used (a) as an outcome measurement in residential care intervention studies; (b) to help residential facilities identify interventions needed to improve staff well-being, and, by extension, those they care for; and ((c) to generally make more salient the critical issue of staff strain and the importance of ameliorating it.)

Introduction : It is important to investigate the job strain and stress of

conscience (SC) of NAs not only for the sake of nurse assistants

(NAs), but also due to the impact on the quality of care they provide.

Thus, the aim of this study was to investigate job strain, SC and

associated variables among NAs working in residential care. Method :

NAs (n=225) completed questionnaires, including job strain, SC and

potentially associated variables. The variables were compared

concerning high and low job strain and SC and were explored with

multiple linear regression analyses. Results : Organisational and

environmental support, personalised care provision and, a positive

caring climate were associated with low job strain and SC as well as

NAs receiving a supportive leadership. In addition, having compulsory

schooling in comparison with upper secondary schooling was

associated with low job strain and SC. Factors related to health

complaints and work-related information were associated with high

job strain and SC. Conclusion : Exploring and adopting a broader

perspective of factors which are connected to strenuous aspects of

NAs’ work situation in residential care are important for the provision

and management of nursing-care. In order to ensure the wellbeing of

NAs and in turn the quality of care, both the NAs and their leaders

need to be addressed simultaneously. Person-centeredness concerns

the actual care-provision and the care climate which need to be

implemented into the care system/care philosophy. This highlights the

importance of the leaders’ role as crucial when implementing or

sustaining person-centred care in residential care for older people.