Managing the transition to non-driving in patients with dementia in primary care settings: facilitators and barriers reported by primary care physicians

Objectives:This research addresses dementia and driving cessation, a major life event for affected individuals, and an immense challenge in primary care. In Australia, as with many other countries, it is primarily general practitioners (GPs) who identify changes in cognitive functioning and monitor driving issues with their patients with dementia. Qualitative evidence from studies with family members and other health professionals shows it is a complicated area of practice. However we still know little from GPs about how they manage the challenges with their patients and the strategies that they use to facilitate driving cessation.Methods:Data were collected through five focus groups with 29 GPs at their primary care practices in metropolitan and regional Queensland, Australia. A semi-structured topic guide was used to direct questions addressing decision factors and management strategies. Discussions were audio recorded, transcribed verbatim and thematically analyzed.Results:Regarding the challenges of raising driving cessation, four key themes emerged. These included: (i) Considering the individual; (ii) GP-patient relationships may hinder or help; (iii) Resources to support raising driver retirement; and (iv) Ethical dilemmas and ethical considerations. The impact of discussing driving cessation on GPs is discussed.Conclusions:The findings of this study contribute to further understanding the experiences and needs of primary care physicians related to managing driving retirement with their patients with dementia. Results support a need for programs regarding identification and assessment of fitness to drive, to upskill health professionals and particularly GPs to manage the complex issues around dementia and driving cessation, and explore cost-effective and timely delivery of such support to patients

Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus

The goal of this study was to describe researchers' experiences in submitting ethical proposals focused on older adult populations, including studies with persons with dementia, to ethical review boards. Ethical approval was granted for an online survey. Researchers were recruited via listservs and snowballing techniques. Participants included 157 persons (73% female) from Australia and the United States, with a mean age of 46 (±13). Six main issues were encountered by researchers who participated in this survey. In descending order, these included questions regarding: informed consent and information requirements (61.1%), participants' vulnerability, particularly for those with cognitive impairments (58.6%), participant burden (44.6%), data access (29.3%), adverse effects of data collection/intervention (26.8%), and study methodology (25.5%). An inductive content analysis of responses revealed a range of encounters with ethical review panels spanning positive, negative, and neutral experiences. Concerns voiced about ethical review boards included committees being overly focused on legal risk, as well as not always hearing the voice of older research participants, both potential and actual. Respondents noted inability to move forward on studies, as well as loss of researchers and participant groups from gerontological and clinical research as a result of negative interactions with ethics committees. Positive interactions with the committees reinforced researchers' need to carefully construct their research approaches with persons with dementia in particular. Suggested guidelines for committees when dealing with ethics applications involving older adults include self-reflecting on potential biases and stereotypes, and seeking further clarification and information from gerontological researchers before arriving at decisions

Personal and complex: The needs and experiences related to technology use for people living with dementia

BackgroundWith increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers).MethodsAs part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed.FindingsThirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement.ConclusionThe use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits

Ethico-legal considerations involved in the remote monitoring of spontaneous speech and conversations via smartphone applications

The remote collection of speech/conversation data through smartphones can provide unique data to SLPs. But what ethico-legal aspects does a team of clinicians or researchers need to be aware of when remotely collecting such data? This presentation will discuss real-life examples of ethico-legal hurdles experienced by our research team..