This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

C aregivers of people with frontotemporal dementia (FTD) show higher levels of burden than do those caring for people with Alzheimer disease. 1,2 This almost certainly reflects several factors, including symptoms of the patient, rate of disease progression, 3 caregiver depression, 3,4 or coping style. Moreover, caregivers often find themselves deprived of specialist care in the community, and most programs, when available, focus on memory problems, which are less relevant in FTD.Despite emergent literature and clinical relevance, no studies, to our knowledge, have explored caregiver interventions to reduce burden and enhance coping skills in FTD. To address this gap, the current study aimed to verify the utility of a specific intervention in FTD caregivers, based on an adapted Canadian program targeting problem solving, reframing, and seeking support. 5 Primary outcomes were reduction of caregiver burden and reaction to patient behavior; secondary outcomes were decreasing caregiver depression, anxiety, stress, and changing coping strategy where necessary. METHODS Study Sample and Group AllocationCaregivers were recruited from Frontier, a specialized Frontotemporal Dementia Research Group in Sydney, Australia, and were eligible if they were primary caregivers and living in Sydney. Dementia variants included behavioral variant FTD, semantic dementia, progressive nonfluent aphasia, corticobasal syndrome, and progressive supra nuclear palsy. Dementia severity or living in a residential aged care facility were not exclusion criteria. Of the 50 caregivers identified, 21 agreed to participate. Twelve were unable to attend because of travelling distance, ill health, or inability to arrange alternative caregivers in their absence and were allocated as a "control" group (CG). Nine caregivers formed the intervention group (IG).

Experience-based co-design (EBCD) is a quality improvement approach that is being used internationally to bring service users and health professionals together to improve healthcare experiences, systems and processes. Early evaluations and case studies of EBCD have shown promise in terms of improvements to experience and organisational processes, however challenges remain in participation around shared power and decision making, mobilisation for implementation, sustainment of improvements and measurement of outcomes. The objective of this case study was to explore the emergent issues in EBCD participation and implementation in six quality improvement projects conducted in mental health, rehabilitation, blood and bone marrow transplant, brain injury rehabilitation, urinary incontinence and intellectual disability settings by the Agency for Clinical Innovation (ACI), New South Wales, Australia (2015-2018). Methods: A two stage process of analysis was employed. The first stage involved a case to case synthesis using a variable-oriented approach. In this approach themes were identified within individual cases and compared across cases in workshops with all project leads. In the second stage the case themes were synthesised within an overarching thematic that was identified as the main challenge in effective participation and implementation in these EBCD projects. The results: themes identified in the first stage of analysis related to different methods for gathering experiences and the activities used for the co-design of improvements. Variability in service user participation within co-design workshops was also discussed. Four out of the six projects implemented improvements in full. The prominent thematic overarching all six EBCD cases was the need for guidance on capability development and co-design preparedness for all participants in co-design not only project leads. In conclusion, variability in EBCD implementation makes it difficult to identify which component parts are essential for improving experiences and services, and which of these lead to sustained changes and benefits for service users and health professionals. One way to address this is to develop a model for codesign capability and preparedness that is closely linked with a set of eight mechanisms that have been previously identified as essential to achieving change in healthcare improvement initiatives.

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences.

Background: Reablement has potential for enhancing function and independence in people with dementia. In order to enhance the use of evidence-based reablement in this population, this study sought to understand the current practices and needs of the sector around these interventions. Methods: A purposive sample of 22 Australian aged and community-care providers participated in a semistructured interview. Qualitative content analysis was applied to the data, with key themes interpreted within the context of the study aims: to explore (1) what reablement interventions are currently being offered to people living with dementia in Australia, and (2) what are key factors that will contribute to enhanced uptake of reablement interventions in dementia practice. Results: Four themes emerged: (1) 'what reablement interventions are being offered', outlined a range of exercise and cognitive/social interventions, with only a proportion generated from a clear evidence-base, (2) 'what's in a name', illustrated the range of terms used to describe reablement, (3) 'whose role is it', highlighted the confusion around the range of health professionals involved in providing reablement interventions, and (4) 'perceived barriers and enablers to providing reablement to people living with dementia', described a range of factors that both hinder and support current reablement practice. Conclusions: Reablement interventions currently provided for people living with dementia in Australia are variable, with confusion around the definition of reablement, and apparently limited use of evidence-informed interventions. A multifaceted approach involving an evidence-informed and freely-accessible resource, and taking into account the varied levels of influence within the aged care sector would support uptake and implementation of reablement interventions for people living with dementia.