BACKGROUND:This paper explores the meanings given by a diverse range of stakeholders to a decision aid aimed at helping carers of people in early to moderate stages of dementia (PWD) to select community based respite services. Decision aids aim to empower clients to share decision making with health professionals. However, the match between health professionals' perspectives on decision support needs and their clients' perspective is an important and often unstudied aspect of decision aid use.METHODS:A secondary analysis was undertaken of qualitative data collected as part of a larger study. The data included twelve interviews with carers of people with dementia, three interviews with expert advisors, and three focus groups with health professionals. A theoretical analysis was conducted, drawing on theories of 'positioning' and professional identity.RESULTS:Health professionals are seen to hold varying attitudes and beliefs about carers' decision support needs, and these appeared to be grounded in the professional identity of each group. These attitudes and beliefs shaped their attitudes towards decision aids, the information they believed should be offered to dementia carers, and the timing of its offering. Some groups understood carers as needing to be protected from realistic information and consequently saw a need to filter information to carer clients.CONCLUSION:Health professionals' beliefs may cause them to restrict information flows, which can limit carers' ability to make decisions, and limit health services' ability to improve partnering and shared decision making. In an era where information is freely available to those with the resources to access it, we question whether health professionals should filter information.

This paper investigates the coding of dementia in the episode of care in a pilot study group ( N=48) post hospital discharge and the possible implications of under-coding. The assigned ICD-10-AM codes and Diagnosis Related Groups were reviewed. Results demonstrate under-coding of dementia and of cognitive deficits; poor correlation between admission diagnoses and dementia codes on separation; and changes in individual patients' cognitive status across forms and assessments in the same admission. The complexities of accurately coding dementias will impact upon planning for future treatments and service provision and will have a flow-on effect for patients, hospitals, and patient care in Australia.

Dementia imposes a significant challenge for healthcare sys- tems, and can be under-coded in hospital patients. A review of coding in an Australian setting identified deficiencies which could impact on funding for dementia care, and for research. Further work is needed to clarify the impact of coding on de- cisions about funding for dementia care and research.

BACKGROUND:To 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).METHODS:This mixed method exploratory study compared measures of carer burden with community services received and unmet needs, for 20 community-dwelling carer/care-recipient pairs.RESULTS:A 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.CONCLUSION:When 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.

Background: The vital role of family caregivers of people with dementia is increasingly recognized, and the need to support them, especially in the terminal stages of the disease, is crucial. Some factors associated with the role are known to contribute to risk of negative outcomes including complicated grief following bereavement. This PhD research project aims to determine the risk and protective factors for post-bereavement health outcomes in primary family caregivers to inform development of effective interventions. Methods: The research project consists of two studies: a scoping study involving semistructured interviews with 13 family caregivers, the results of which were used to inform data collection for the second prospective cohort follow-up study. This study includes baseline surveys administered before the death of the relative with dementia and/ or 6 weeks after death. The surveys will then be repeated for all participants 6 months following the death, at which time a measure of complicated grief will also be carried out. Results: The findings indicate that key issues associated with bereavement outcomes for family caregivers appear to be an interaction of individual characteristics and coping strategies, gender, death sequelae, and the existence of a spiritual dimension in their lives. Conclusions: Interventions developed to support this group should remain mindful of these issues to facilitate progress toward developing early, dementia-specific preventive and therapeutic interventions for both family caregivers and their relatives with dementia.