DESCRIPTION

Family caregivers provide 75% of the assistance needed for individuals with disabilities to remain in their communities. Given our rapidly ageing population and issues associated with caregiver burn-out, finding ways to reduce caregiver burden is critical. Therefore, the objectives of INToCare are: 1. To identify the specific activities and situations that caregivers find most burdensome, 2. To involve caregivers as active partners in identifying preferences and priorities for the development of technological solutions to address these problems. We will involve family caregivers as active partners in the research process. We will conduct a series of qualitative interviews with a range of caregivers. We will explore and identify deficits with the technologies that they are currently using to address these issues. We will invite participants and consult with other NCE investigators to identify novel solutions to these issues. Based on these qualitative data we will create a quantitative survey that will be sent to a representative sample of Canadian informal caregivers to determine their needs and preferences on a national level. This will be the first project to link specific caregiving activities with perceived burden, and to involve family caregivers as active partners in identifying their priorities and potential solutions. This research will therefore have important, marketable technological, academic, commercial, policy and practice implications.

DESCRIPTION

In Canada, 1.1 million older adults use assistive technology to compensate for a functional limitation related to mobility, communication, vision, audition or cognition. Studies have identified the crucial activities accomplished by caregivers and the added burden when assistive technologies are required for self-care tasks, but few interventions exist to support caregivers as they carry out these daily roles. Although self-management programs exist for various medical conditions, none have been designed to meet the specific needs of caregivers who help elderly users with assistive technology, in-person or remotely. The present study will transform the monitoring and training after the provision of assistive technology to take into account the needs of the user-caregiver dyad. We will initially focus on the expansion of a caregiver web portal for telemonitoring and teletraining after the provision of mobility assistive devices such as a cane, walker, wheelchair or scooter, and will then look at including other AGE-WELL technologies. This web portal will provide training modules that the caregiver can use with his/her relative, and allow caregivers to monitor use of a specific piece of technology.

DESCRIPTION

There are many products that can help support an older adult with dementia to live in the community. It is often up to family caregivers to find products that will be useful, but locating these can be difficult, frustrating, and often futile, as family caregivers may not know what they are looking for or how to find it. The goal of this project is to apply a new type of artificial intelligence called “cognitive computing” to create an online tool that connects family caregivers to products they need to support themselves and the older adult with dementia. While the resulting tool will be widely accessible to the public through the internet, it is far more sophisticated and powerful than a search engine. A family caregiver will be able to describe the problem they would like to solve using plain language and – akin to talking to another person. Through a few simple questions, the tool will gather information about the person’s particular situation. It will then search products of all types (not just those designed specifically for dementia care) and return possible solutions that complement the person’s needs. This project will be driven by user-centred methods through transdisciplinary research that includes several fields at all levels of academia as well as industry, clinicians, and caregivers from the community.

DESCRIPTION

Family caregivers provide the vast majority of care to older adults. They also experience health, social and economic consequences as a result. These consequences threaten sustainability of the family care sector and, in turn, the formal care sector that depends so heavily on it. Assistive technologies (AT) often are assumed to lighten the burden of family caregivers, but much of the literature on AT for family caregivers actually focuses on the impact on caregivers of AT designed for care receivers. Even studies purporting to examine family caregivers’ AT needs tend to base conclusions about caregiver outcomes on care recipients’ judgments and not on those of family caregivers themselves. Sheets, et al (2014) argue for “comprehensive assessment and person-centered approaches to meet caregiver needs, as well as empirical evidence regarding improved caregiver outcomes.” (p. 526). Family caregivers have unique needs, independent of any impact care receiver AT may have, that may also be addressed through AT, but these remain under-studied. Understanding eldercare providers’ unique needs and preferences is critical to developing successful strategies for development, communication and adoption of AT to effectively support family caregivers.

DESCRIPTION

Low back injuries account for the majority of injuries sustained by caregivers due to helping with activities such as transferring from bed to toilet, lifting and bathing. Family caregivers are often thrust into their new roles with no guidance on how to approach these high-risk tasks. We have developed a wearable system that provides real-time feedback to warn caregivers when they bend or twist too far. We call the device PostureCoach.

DESCRIPTION

Maintaining both employment and care work is a major challenge faced by the over 5.6 million employed family carers in Canada, most of whom work full-time. Care-related absenteeism, ‘presenteeism’ and turnover are common, and costs to carers and employers can be substantial. Assistive Technologies (ATs) may offer some solutions to this challenge, but studies on adoption of ATs in Canadian workplaces are rare. Using pulse check surveys, our feasibility study engaged AGE-WELL partners as employers to determine what role they and their carer-employees envision technology playing in supporting employees with family care responsibilities, their willingness to adopt/provide such technologies, and barriers to adoption. Stakeholders met October 18, 2016 to learn findings from the pulse check surveys, hear from a U.K. industry leader, and discuss innovative ideas for creating carer-friendly workplaces in Canada. We learned that there are disconnects between employers and carer-employees about their awareness of and understanding about family care as a workplace issue and their beliefs about the use of ATs at work to manage employees’ dual roles. Carer-employees identified several barriers to using ATs that inform product development, including not thinking the person they care for would accept ATs, not knowing what ATs are currently available, and not having enough time to learn how to use ATs. Concerted efforts are also required to bridge the gap between employers and carer-employees to create carer-friendly workplaces, including adopting ATs in the workplace that help carers streamline or reduce care demands, communicate more effectively with care network members, reduce stress and where possible, work remotely.

DESCRIPTION

Technology systems for supporting older adults living with chronic conditions in their homes are growing, which helps to alleviate some of the burden being experienced by caregivers. However, there are a number of barriers to widespread implementation and avoiding these challenges requires insights from ‘real-world’ applications. Our industry partner, Mavencare™ (www.mavencare.com) offers an innovative technology-enhanced homecare service whereby Mavencare™ staff provide care inputs and regular updates via an App that caregivers can access. This project will provide insights from: a) caregivers who use Mavencare™ 's App to understand how the App influences their caregiving experience; b) caregivers who do not use the App to determine barriers to adoption; and c) Mavencare™ staff to learn how the technology has influenced their daily practice. The knowledge gained will be mobilized to inform further business development and ‘best practices’ regarding the implementation of a commercially-available technology-enhanced home-care service.

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DESCRIPTION

Family and friend care networks provide the majority of care to a growing population of Canadian elders. The proposed project seeks to co-design a digital application to support the lives and efforts of these family and friend caregivers. For such an application to successfully free up time, reduce burnout, improve care, and increase wellbeing it must originate from the needs and priorities of family and friend caregivers themselves. To accomplish this sort of ‘user centered design,’ the project will use a modified version of the collaborative Design Thinking Process (DTP) to map challenges and imagine feasible technology-enabled solutions. Our working assumptions going into the DTP are that cloud-based recruitment, scheduling, communication, knowledge bank, service navigation, and patient sensing elements have the potential to support the work of family and friend care networks. Over the course of a Citizen Panel session (step one in the DTP), a Delphi priority setting exercise (step two) and a Design Thinking co-development event (step three), these assumptions will be tested against the real-world experience of caregivers, the technical know-how of software engineers, and the implementation expertise of healthcare quality and safety specialists allowing us to prioritize certain elements for development, and to produce a prototype digital application that truly assists family and friend caregivers.

DESCRIPTION

The median population age for many European countries, China and North America is increasing, which shifts financial, emotional and infrastructure burdens of care to an increasingly smaller proportion of caregivers. Governments, care organizations, and affected family members are seeking new ways of optimizing the lives of older persons within limited resources. Transitions experienced as people grow older (e.g., spousal loss, moving, health incidents) are challenging, yet designed things can offer support. This project's goal is to mobilize knowledge about explicit design interventions that can improve and/or change little things that make a difference in how well older persons adjust and cope with new (and sometimes old) circumstances. Our objective is to highlight everyday situations within near and built environments that offer combinations of care, emotional well-being, safety, and recipient acceptability, while presenting possible solutions. We will co-create five short illustrated films emerging from fifteen years of ethnographic research into how older persons and those with disabilities interact within built environments. The films will be intergenerational co-creations with caregivers, older persons, research students, and student illustrators. They will be shown and vetted within care communities in ethnically diverse locations for refining and improving upon them through an iterative and collaborative process. Highly qualified personnel will be mentored and will develop their own research interests within the project. We understand that older persons are neither homogeneous in culture, ethnicity, religion, nor in the degree to which they need care, physical, and emotional support. Therefore, these films address cultural needs and differences while creating an awareness of the relationships between older persons and designed things including assistive technologies. The films will be made available in several languages to caregivers, schools, governments and the general public in Canada and elsewhere as educational materials and points of discussion into aging well.

DESCRIPTION

Caregiving can be deeply disorienting as it involves an array of complex decisions and actions informed by limited knowledge. Moving beyond clinical practice and research, how do we help caregivers navigate the complexity of care while deriving real-world evidence about what works and what derails the care journey? Huddol is the first cross-disease, cross-platform, bilingual social health network that aims to help caregivers navigate the care journey by drawing on the real-world experience and insights of caregivers and health-care experts. The experience on Huddol starts with helping caregivers define their situation and needs. Based on those active data inputs, Huddol builds a custom network of care around the caregiver, linking them to those best equipped to help. Our project involves accelerating the technical capability of Huddol through the integration of artificial intelligence into the platform. AI will enhance the way we connect caregivers to each other, to health-care providers and to supports, while deriving deep, real-world data, and evidence about how we optimize the care experience. The inclusion of machine based learning into Huddol means that we can analyze and distill not only structured, but unstructured data. Effectively, we will be able to make sense out of a flow of caregiving experiences that, for the normal human brain, would be impossible to distill, interpret and compare. Our project will not only have significant social impact and improve the ways caregivers manage their health and the health of the person in their care, but it will also drive new areas of research, product and service development never before considered or imagined.

DESCRIPTION

Family caregivers have individual and complex needs beyond providing or coordinating care for their loved one. While technology has the potential to support informal caregivers, such technologies are often developed without the caregiver’s and care recipient’s (CR) needs and perspectives in mind. “Designing Assistive Technology that Cares” was a three-day workshop held at the Research Institute for Aging (2017). The workshop brought together 40 caregivers and other professionals from various disciplines and sectors, including academia, industry, government, not-for-profit, and long-term care. Together, participants collaboratively explored how technologies can be designed to support the holistic needs of informal and formal caregivers. Key messages  from the workshop include: positioning caregivers as partners and experts when exploring innovative technology to best support CRs; developing innovative technologies to strengthen relationships between the CR, formal and informal caregivers; and how policies and practices can be amended to best support the needs of all parties.