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FRA 2015-A-03

A frailty measure for persons with intellectual and developmental disabilities using aging care

Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).

Research Results

Findings: 17 publications of original research were retrieved that measured frailty in aging adults with intellectual and developmental disabilities (IDD) using six distinct measures of frailty. In these studies, frailty was studied both as an outcome and a predictor for other outcomes (e.g. falls, institutionalization, survival). The knowledge translation experiences of their developers revealed that neither frailty measure had been used to support policymaking; though the Vienna Frailty Questionnaire for persons with Intellectual Disability-(Revised (VFQ-ID-R) was implemented in practice.

Impact of findings: While individuals with IDD have some unique aging needs, a measure of frailty status is helpful to understand current and future care needs. A valid measure of frailty specific to IDD can be derived using data collected as part of regular practice in home care settings across the country (i.e., RAIHC). Policymakers should recognize that linkages between researchers, policymakers and practitioners are vital to the development and implementation of measures to support people as they age. Frail adults with IDD may experience aging sooner in life compared to adults without such disabilities. Our results reveal that frailty- a state experienced with advancing age- can be identified in adults with IDD, and can predict negative outcomes. For this population to be appropriately served by aging care, they must first be recognized as an aging population. Frailty measures can do this. A frailty measure can be calculated for home care users with IDD using existing clinical information. This could help home care providers to better understand and meet current needs, as well as predict future needs. Early identification of frailty could lead to timely and appropriate supports that could help to keep aging adults with IDD in the community longer, and possibly out of long-term care.

Publications, presentations and webinars

For more information on why this research matters, click the links below:

Policy        Families        Researchers

About the Project

Closure of large institutions historically established to provide segregated care to adults with IDD was recently achieved in Ontario, but continues in some provinces. There is concern that, for this population, admissions to long-term care is another form of institutionalization. Early identification of frailty offers promise in promoting appropriate use of long-term care among aults with IDD.

The goal of the project is to improve community care and clinical outcomes of Canadians with intellectual and developmental disabilities who are frail by providing a tool to measure frailty in this population. Learnings from key informant interviews will inform recommendations for implementation of the frailty tool in home care settings.

For more details on the project rationale, hypothesis, objectives and research plan, click here.

Project Team

Principal Investigator:

Hélène Ouellette-Kuntz, PhD -- Queen's University

Co-Investigator:

Lynn Martin, PhD -- Lakehead University

Project Contact: Hélène Ouellette-Kuntz -- helene.kuntz@queensu.ca

FRA 2015-A-03