BackgroundTo ensure carers of people with dementia receive support, community services increasingly use measures of caregiver (carer) burden to assess for unmet need. This study used Bradshaw's taxonomy of need to explore the link between measures of carer burden (normative need), service use (expressed need), and carer's stated need (felt need).MethodsThis mixed method exploratory study compared measures of carer burden with community services received and unmet needs, for 20 community-dwelling carer/care-recipient pairs.ResultsA simple one-item measure of carers' felt need for more services was significantly related to carer stress as measured on the GHQ-30. Qualitative data showed that there are many potential stressors for carers, other than those related to the care-giving role. We found a statistically significant rank correlation (p = 0.01) between carer's use of in-home respite and the care-recipient's cognitive and functional status which is likely to have been related to increased requirement for carer vigilance, effort and the isolation of spouse carers. Otherwise, there were no statistically significant relationships between carer burden or stress and level of service provision.ConclusionWhen carers are stressed or depressed, they can recognise that they would like more help from services, even if measures of carer burden and care recipient status do not clearly indicate unmet service needs. A question designed to elicit carer' felt need may be a better indicator of service need, and a red flag for recognising growing stress in carers of people with dementia. Assessment of service needs should recognise the fallibility of carer burden measures, given that carer stress may not only come from caring for someone with dementia, but can be significantly compounded by other life situations.

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidencebased dementia care. Résumé / Le nombre de personnes atteintes de démence augmente rapidement à travers le monde. Ainsi on remarque en Australie une augmentation du nombre de ces malades admis dans les institutions de soins de longue durée. La démence étant une maladie terminale il appert que l'approche palliative est la meilleure forme de soins. Cependant, il est essentiel que le personnel soignant autant que les familles aient une bonne connaissance de la maladie, de ses symptomes, de la façon de traiter les maladies, et des décisions à prendre. Or, on en sait très peu quant au niveau de connaissances de ces deux groupes de personnes sur le sujet. Cet article porte sur les résultats

Aim. Ensuring older adults' involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on people's behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care.Methods. This Joanna Briggs Institute (JBI) meta-synthesis assessed studies that investigated involvement of family members in decision making for people with dementia in residential aged care settings. Whilst quantitative and qualitative studies were included in the review, this paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty six studies were identified as being relevant; ten were quantitative, with one mixed-method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBIMAStARI). The findings were synthesised and presented in narrative form. Conclusions.The results identified patterns within and variables associated with surrogate decision making, which all highlight the complexity and variation regarding family involvement.Attention needs to be paid to supporting family members in decision making in collaboration with staff. Word count: 269Keywords: decision making; dementia; family; residential aged care; systematic review Care Home Minimum Standards make frequent reference to "residents and their representatives" being informed, consulted, and involved in decision making and care planning, among other decisions in the facility. 8,9 In the United States, the Federal Requirements for Long Term Care Facilities 9 commonly makes reference to "the resident or their representative", the "legal representative", or "family member" in regard to information, consent, and care planning. Other countries similarly, both implicitly and explicitly, refer to representatives, including family, being informed and involved in planning and decision making. However, the enactment of these standards is not consistent across contexts.There have also been attempts to develop best practice approaches to involving family members in the care of older people in residential care. In Australia, for example, participation of family members in the care of older people is also highlighted in the Palliative ApproachGuidelines for RAC and Community. 10,11 Further, the recent development of consumer focused documents in Australia which highlight the role of family members and proxy decision makers in contributing to care decisions for planning for end of life with dementia is a good example of the growing policy context which supports the involvemen...