Availability of information on young onset dementia for patients and carers in six European countries.

OBJECTIVES: To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps. METHODS: Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. RESULTS: 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden. CONCLUSION: Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. PRACTICAL IMPLICATIONS: Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.

RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.

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.

The Development of the strain in dementia care scale (SDCS).

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

Job strain and stress of conscience among nurse assistants working in residential care.

AIM: The aim was to investigate job strain and stress of conscience among nurse assistants working in residential care and to explore associations with personal and work-related aspects and health complaints. BACKGROUND: It is important to investigate job strain and stress of conscience, both for the well-being of the nurse assistants themselves and for the impact on the quality of care they provide. METHOD: Questionnaires measuring job strain, stress of conscience, personal and work-related aspects and health complaints were completed by NAs (n = 225). Comparisons of high and low levels of job strain and stress of conscience and multiple linear regression analyses were performed. RESULT: Organisational and environmental support and low education levels were associated with low levels of job strain and stress of conscience. Personalised care provision and leadership were related to stress of conscience and the caring climate was related to job strain. CONCLUSION: There is a need for support from the managers and a supportive organisation for reducing nurse assistants work-related stress, which in turn can create a positive caring climate where the nurse assistants are able to provide high quality care. IMPLICATIONS FOR NURSING MANAGEMENT: The managers' role is essential when designing supportive measures and implementing a value-system that can facilitate personalised care provision.

Psychometric properties concerning four instruments measuring job satisfaction, strain, and stress of conscience in a residential care context.

There are many instruments assessing the wellbeing of staff, but far from all have been psychometrically investigated. When evaluating supportive interventions directed toward nurse assistants in residential care, valid and reliable instruments are needed in order to detect possible changes. The aim of the study was to investigate validity in terms of data quality, construct validity, convergent and divergent validity and reliability in terms of the internal consistency and stability of the Job Satisfaction Questionnaire, the Psychosocial Aspects of Job Satisfaction, the Strain in Dementia Care Scale (SDCS), and the Stress of Conscience Questionnaire (SCQ) in a residential care context. The psychometric properties of the instruments were investigated in terms of data quality, construct validity, convergent and divergent validity and reliability, including test-retest reliability, in a residential care context with a sample consisting of nurse assistants (n=114). The four instruments responded with different psychometric-related problems such as internal missing data, floor and ceiling effects, problems with construct validity and low test-retest reliability, especially when assessed on the item level. These problems were however reduced or disappeared completely when assessed for total and factor scores. From a psychometric perspective, the SDCS seemed to stand out as the best instrument. However, it should be modified in order to reduce floor effects on item level and thereby gain sensitivity. The Job Satisfaction Questionnaire seemed to have problems both with the construct validity and test-retest reliability. The final choice of instrument must, however, be made dependent on what one intends to measure.