Consent and Inclusion of People Living with Dementia (PLWD) in Research: Establishing a Canadian Agenda for Inclusive Rights-Based Practices.

BACKGROUND: People living with dementia (PLWD) may want to participate in research, but the guidelines and processes enacted across various contexts may prohibit this from happening. OBJECTIVE: Understanding the experiences of people with lived experiences of dementia requires meaningful inclusion in research, as is consistent with rights-based perspectives. Currently, the inclusion of PLWD in Canadian research is complex, and guidelines and conceptual frameworks have not been fully developed. METHODS: This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research. FINDINGS: It presents a brief report on some of the contradictions and challenges that exist in legislation, research guidelines, and research practices and raises a series of questions as part of an agenda on rights and inclusion of PLWD in research. DISCUSSION: It suggests conceptual, legal, and policy issues that need to be addressed and invites Canadian researchers to re-envision research practices and to advocate for law and policy reform that enables dementia research to align and respect the rights and personhood of PLWD.

A Model Predicting Healthcare Capacity Gaps For Alzheimer's Disease-Modifying Treatment in Canada.

BACKGROUND: Alzheimer's disease (AD) is experienced by > 600,000 Canadians. Disease-modifying therapies (DMTs) for earlier stages of disease are in development. Existing health system capacity constraints and the need for biomarker-driven diagnostics to confirm DMT eligibility are concerning. This study aimed to characterize the capacity gap related to early AD (eAD) treatment with DMTs in Canada. METHODS: A capacity model was developed to simulate the flow of a patient from screening to treatment for eAD to quantify the gap between available and required healthcare resources and qualify the bottlenecks restricting the patient journey at a provincial and national level. The model inputs (epidemiological, human resource, and clinical) were evidence-based, healthcare professional-, and patient advocate-informed. RESULTS: The model estimated that nationally < 2% of patients would have access to the required healthcare resources for treatment with a DMT. Eligibility assessment represented the step with the largest capacity gap across all provinces, with a wait list of about 382,000 Canadians one year following DMT introduction. The top three resource gaps included AD specialist time and positron emission tomography and magnetic resonance imaging exam slots. Sensitivity analysis showed that full reliance on cerebrospinal fluid for eligibility testing increased capacity for assessment by about 47,000 patients. CONCLUSION: This model highlights that the Canadian health system is critically under-resourced to diagnose, assess, and treat patients with eAD with DMT. It underscores an urgent need for national policy and provincial resource allocation to close the gap.

Dementia and sexuality in long-term care: Incompatible bedfellows?

Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals' education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.

Understanding transitional care programmes for older adults who experience delayed discharge: a scoping review protocol.

INTRODUCTION: Many hospitalised older adults experience delayed discharges due to increased postacute health and social support needs. Transitional care programmes (TCPs) provide short-term care to these patients to prepare them for transfer to nursing homes or back to the community with supports. There are knowledge gaps related to the development, implementation and evaluation of TCPs. The aims of this scoping review (ScR) are to identify the characteristics of older patients served by TCPs; criteria for transfer, components and services provided by TCPs; and outcomes used to evaluate TCPs. METHODS AND ANALYSIS: The study involves six-step ScR and is informed by a collaborative/participatory approach whereby stakeholders engage in the development of the research questions, identification of literature, data abstraction and synthesis; and participation in consultation workshop. The search for scientific literature will be done in the Medline, PsychINFO, Emcare and CINAHL databases; as well, policies and reports that examined models of transitional care and the outcomes used to evaluate them will be reviewed. Records will be selected if they involve community dwelling older adults aged 65 years or older, or indigenous persons 45 years or older; and presented in English, French, Dutch and German languages. Records will be screened, reviewed and abstracted by two independent reviewers. Extracted data will be analysed using descriptive statistics and a narrative analysis, and organised according to Donabedian's model of structure (characteristics of older adults experiencing delayed discharge and served by TCPs), process (TCP components and services) and outcome. ETHICS AND DISSEMINATION: This ScR does not require ethics approval. Dissemination activities include integrated knowledge translation (KT) (consultation with stakeholders throughout the study) and end-of-grant KT strategies (presentations at national and international conferences; and publication in peer-reviewed interdisciplinary journal).

Developing a Research Agenda on Resident-to-Resident Aggression: Recommendations From a Consensus Conference.

This article provides an overview of the development of a research agenda on resident-to-resident aggression (RRA) in long-term care facilities by an expert panel of researchers and practitioners. A 1-day consensus-building workshop using a modified Delphi approach was held to gain consensus on nomenclature and an operational definition for RRA, to identify RRA research priorities, and to develop a roadmap for future research on these priorities. Among the six identified terms in the literature, RRA was selected. The top five priorities were: (a) developing/assessing RRA environmental interventions; (b) identification of the environmental factors triggering RRA; (c) incidence/prevalence of RRA; (d) developing/assessing staff RRA education interventions; and (e) identification of RRA perpetrator and victim characteristics. Given the significant harm RRA poses for long-term care residents, this meeting is an important milestone, as it is the first organized effort to mobilize knowledge on this under-studied topic at the research, clinical, and policy levels.