Concepts for communication about risk in dementia care: A review of the literature

Journal of Nursing and Healthcare of Chronic Illness, 2000

2 0 1 0 ) Journal of Nursing and Healthcare of Chronic Illness 2, 102-112 Dementia and risk: contested territories of everyday life Aims. The project aimed to understand the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. Background. This paper addresses a gap in the literature by embedding constructions of risk within everyday events and social contexts, and communicates such constructions through the voices of people with dementia, carers and practitioners.

Neurodegenerative Disease Management

• Persons living with dementia are at increased risk for motor vehicle accidents, getting lost, medication errors and other adverse events. • There is a critical need for feasible, effective ways of proactively assessing and managing risks associated with dementia, with the aim of averting crises, and unnecessary suffering and costly healthcare service utilization. • The person-centered risk assessment framework (PCRAF) is a person-centered risk enablement framework that is focused on physical risks, as well as the unintended emotional, psychological and spiritual harm of taking away activities that are meaningful and contribute to quality of life. The PCRAF allows persons with dementia to contribute as much as possible to decisions about high risk activities and alternate solutions to meeting underlying psychosocial needs. • This study assessed healthcare providers', persons with dementia, and care partners' perceptions of the PCRAF as well as the feasibility of using this framework in Primary Care Collaborative Memory Clinics. • The PCRAF was well received; use of the PCRAF was sometimes challenging in the context of busy clinic assessments and when the person with dementia had limited insight into potential safety risks. • Proactive assessment and management of risks may be feasibly conducted within primary care when appropriate to ensure that the care delivered is respectful of individual needs and preferences.

Aging & Mental Health

Objectives: Many persons with dementia live at home with support from home care services. Despite this, research is scarce concerning how risks in daily life among persons with dementia are perceived and handled by home care staff. This study aimed to explore how home care staff identify risks in the everyday lives of persons with dementia, and to inquire into how they reasoned about their own actions related to those risks. Method: A qualitative approach was applied for the study. Both individual interviews and focus groups were conducted with home care staff (n ¼ 23). Data was analysed using a constant comparative method. Results: Identifying, reasoning and acting upon risks in the everyday lives of persons with dementia were related to several dilemmas for the home care staff. These dilemmas are described and elaborated on in three categories: 1) Strategies for tracking risks, 2) Dilemmas concerning where to draw the line and deciding when to act, and 3) Dilemmas when acting on risks. The study provides new knowledge about the dilemmas that staff in home care services may face and how they reason about managing risks in the homes of persons with dementia. The study shows that the staff had to weigh risk and safety against the autonomy of persons with dementia. Based on these findings, we want to highlight the importance of competence among home care staff and the organizational conditions that must exist in order to manage the challenges of risky situations.

Journal of Alzheimer's Disease, 2022

The brain changes of Alzheimer's disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one's biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information.

Dementia

Background and Objectives Due to the concern over global rising rates of dementia, increased emphasis has been placed on understanding and moulding the public’s knowledge and awareness of the condition. There has been limited previous research into predictors of dementia knowledge; overall knowledge amongst the public is low, and it has been widely agreed that more needs to be done to raise awareness of this condition. This study seeks to solidify understanding of public dementia knowledge and introduces dementia worry, motivation to seek information and risk perception as novel concomitants of this knowledge. Research Design and Methods A convenience sample of 311 UK adults completed a survey on dementia knowledge including Alzheimer’s disease-specific questions, worry about developing dementia, motivation to seek information and perceived personal risk of getting the disease. Surveys were completed face-to-face and included both closed and open-ended questions. Results Overall dem...

Alzheimer's & Dementia, 2020

BackgroundWhen and how to communicate effectively the results of genetic and biomarker based prediction, detection, and quantification of the brain substrates of dementia involve important ethical and legal issues critical for precision medicine. The urgency of the issue has increased as People Living with Dementia (PLwD) and with Risk for Dementia (PwRD) can access direct to consumer genetic testing, amyloid targeting drugs, and clinical amyloid PET scans. To address the need for effective dissemination and consultation, an advisory group was convened that welcomes all interested members.MethodMembers attend two meetings monthly via phone/computer/WebEx. One meeting is a targeted working group that focuses on the following: 1. Symptomatic (PLwD), 2. Asymptomatic (PwRD), 3. Research, 4. Ethics/Healthcare Law, 5. Trainee/Mentorship. These discussion groups hear from and present to stakeholders (PLwD/PwRD/caregivers, professional organizations, companies) to solicit feedback on the ef...

BMJ open, 2018

The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. Qualitative study using task group methodology and thematic data analysis. Task groups were held either at the university (n=5) or at a carers' centre (n=1). A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rathe...

Journal of the American Geriatrics Society, 2000

Objectives-Family caregivers play a significant role in the health care of patients with dementia yet their needs and health status are often overlooked. This study developed and validated a brief screening measure for use in research, health care and community settings to systematically assess well-being and identify needed areas of support for caregivers of patients with dementia.

GeroPsych, 2021

The research examined dementia worry and the perception of personal dementia risk based on a 2-year longitudinal online study (N = 129, 21–79 yrs). Participants completed questionnaires on attitudes, experiences, and worries concerning dementia. A fully saturated cross-lagged model was estimated. Results show that dementia worry was moderately stable, and that changes were unrelated to perceived risk or family history. In contrast, perceived dementia risk was more prone to change and was positively associated with prior dementia worry but not vice versa. Having a family history of dementia was cross-sectionally, but not longitudinally, associated with greater worry and higher perceived risk. Because of the limited variability of dementia worry, focusing on perception of personal risk is a promising approach. Future research may benefit from differentiating the plasticity of the two constructs.

BMC public health, 2014

With the dramatically increasing contribution of Alzheimer's Disease and other forms of dementia to the global burden of disease, countries are being urged to address this as a public health priority. This study investigated whether Australian adults recognise this as an important health issue, and hold beliefs and knowledge that are consistent with recommendations concerning dementia risk reduction. This research was undertaken to guide national brain health awareness and education strategies. A cross-sectional telephone survey was undertaken of 1,003 Australians aged 20-75 years. This measured the importance placed on dementia, beliefs and confidence related to risk reduction, knowledge of risk reduction methods, and the perceived age-relevance of these. In analysis the data were stratified by sex, age, educational attainment, household income, language preference and previous exposure to dementia. Multivariable logistic regression was undertaken to identify variables independ...