Clinical Practice Guidelines for Dementia in Australia: A step towards improving uptake of research findings in health and aged-care settings

This author accepted manuscript (post print) is made available following a 12 month embargo form date of publication (21 April 2016) in accordance with the publisher copyright policy

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

Objectives: Personal experiences of receiving a diagnosis of young onset dementia (YOD) are often overlooked in a complex assessment process requiring substantial investigation. A thematic synthesis of published until November 2018 qualitative studies was completed to understand the lived experiences of younger people. This informed a Delphi study to learn how diagnostic processes could be improved, identify the strengths and weaknesses of current approaches, and help educate professionals concerning key issues. Method: Systematic searches of bibliographic databases were conducted involving self-reported experiences of diagnosis of YOD. Eight out of 47 papers identified were quality assessed using Walsh & Browne's criteria for methodological appraisal. Results: The review emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the clinician's use of language; and reactions to diagnosis varied from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. Conclusion: This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors, and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults, and to promote future engagement with services

What you say and what I want : Priorities for public health campaigning and initiatives in relation to dementia

Objective To examine the overlap between priorities expressed by representatives from national and local campaigning organisations and the views of key voices in relation to dementia. Methods Semi-structured, in-depth telephone interviews were conducted with 19 representatives from campaigning organisations, including nine countries and six local community initiatives in Australia. Responses were categorised into nine priorities. Views were compared to the voices of people with dementia (n = 19), carers (n = 28), and health-care (n = 21), social work (n = 23) and service professionals (n = 20). Results Local groups prioritised user-led decision-making and community normalising agendas. National groups were influenced by service frameworks and increasing public awareness. Professional and carer groups focused on increasing understanding and communication skills while people with dementia valued being a normal part of society. Conclusion Future campaigning should use both national and local approaches to changing social relations, through interpersonal connections, advocacy and social mobilisation, to promote a normalising approach to attitude change.Peer reviewe

Assistance provided in daily tasks and difficulty experienced by caregivers for people living with dementia

Introduction: There is a growing body of research that addresses caregivers for people living with dementia. However, there is limited research looking at the perceptions of caregivers in specific daily tasks. To address this gap, this study investigated the assistance caregivers provided and the difficulty they faced when completing daily tasks for people with dementia and, additionally, how these experiences might relate to their perceived burden. Methods: Sixty-two caregivers for people living with dementia completed the study. Data were collected, through a survey, on the level of assistance caregivers provided, and the difficulties they experienced. The Zarit Burden Scale was used to measure the level of perceived burden. Descriptive statistics and Spearman's correlation coefficient were used to report the results and the relationship between the perceived burden, the level of assistance provided, and the difficulty experienced. Results: The activities of daily living that caregivers provided the most assistance for was dressing and showering. Most instrumental activities of daily living required maximal to total assistance. Overall, the caregivers did not experience a high level of difficulty with assisting with these daily tasks in comparison to the level of assistance provided. The caregiver burden was associated significantly with the difficulties experienced in dressing, toileting, and showering (rho = 0.30–0.75), most instrumental activities of daily living (rho = 0.29–0.47), but not with the level of assistance provided. Conclusion: Caregivers are assisting in many daily tasks. Their level of difficulty is relatively low in comparison to the level of assistance they provide. Significant correlations were found between the difficulties experienced and the burden scale. There is a need for occupational therapists to address the specific daily tasks and the concerns experienced by caregivers and to provide them with adequate support to improve the quality of care for people with dementia