The Alzheimer Society Research Portal connects researchers with Canadians looking to participate in research studies. On this website, find active studies that you can participate in to help advance research on dementia.
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- Observational StudyOnline & In-Person
What is this Study about?
Researchers at the University of Waterloo are looking for individuals to participate in a research study that explores the perceptions of dementia and health-seeking behaviour amongst Arab care partners in Ontario. This study aims to understand how dementia is perceived by Arab care partners and the use of dementia-related health services and community support services.
Sharing your experience will help us to understand 1) how dementia is perceived by Arab care partners and 2) the use of dementia-related health services and community support services.
Eligibility Criteria
We are looking for individuals who:
1. Are from the Arab community AND
2. Are a family member who cares or has cared for a person living with dementia OR Are a family member who cares or has cared for a person with memory challenges
Interviews can be conducted in Arabic or English based on the participants' preference
Recruitment End Date
- Observational StudyOnline
What is this Study about?
This is a Canada-wide web-based survey of caregivers and healthcare providers of people with diagnoses of frontotemporal dementia (FTD) and related disorders. The online survey, which is available in English and French, explores the caregivers' and healthcare providers' experiences, needs, opinions, and burdens with regards to providing care to patients living with a diagnosis of FTD across Canada. The survey has been developed by a team of researchers with clinical expertise in diagnosing and treating patients with FTD and related disorders.
The survey is available at https://www.surveymonkey.com/r/Canadian-Survey-on-FTD-and-Related-Disorders and will be open from July 1st, 2023, to June 30, 2024 (12 months).
Eligibility Criteria
You are eligible to complete this survey if you are 18 years of age or older and are either:
(1) A caregiver, currently providing care or have provided care recently, within the past year, to a person with a diagnosis of FTD and related disorders. This does not include formal caregivers that provide paid-care, private care services, community funded care services.
(2) A healthcare provider currently working in a primary care clinic and/or in a specialized clinic (e.g., cognitive and movement disorders clinics, memory clinic, etc.) where patients with a diagnosis of FTD and related disorders are assessed and followed clinically. This includes: physicians, nurses, social workers, occupational therapists, neuropsychologists, physiotherapist, etc.
Recruitment End Date
- Observational StudyOnline
What is this Study about?
The purpose of this research is to re-imagine and disseminate through documentary film what compassionate, relational end-of-life (EOL) care looks like from the perspectives of diverse people living with dementia, their care partners, and healthcare professionals.
In phase one of the study we will explore understandings of relational end of life care from diverse perspectives using online research conversations.
Eligibility Criteria
You are eligible to participate if you...
Live in Canada
Are a Canadian citizen or permanent resident
Have a diagnosis of dementia, are a family member or a bereaved family member (within the last year) of a person living with dementia, or are a professional who works directly with people living with dementia or in palliative care
Are able to speak English
*We are primarily looking for people living with dementia and family members living in the community, especially from different cultural backgrounds.
Recruitment End Date
- Observational StudyOnline
What is this Study about?
The aim of this study is to support family and friend caregivers by creating an online community of caregivers called a Virtual Community of Practice. We will create and evaluate a Community of Practice to see if it can improve the quality of life, skills, and confidence of caregivers in engaging persons living with dementia in social and stimulating activities. The Community of Practice includes online information and regular group meetings. Information gathered will help to provide caregiver support by providing them a safe and informative place for them to learn and interact with other caregivers.
Eligibility Criteria
Meet the following criteria for Phase 1:
Person living with dementia:
(a) aged 40 years or older with a diagnosis of dementia; and
(b) currently living in Canada.
Or
Family or friend caregiver:
(a) aged 18 years or older and with experience in the last five years providing physical, emotional, and/or psychological support for a family member or friend living with dementia at home or in long-term care;
and
(b) currently living in Canada
Meet the following criteria for Phase 2:
Family or friend caregiver:
(a) aged 18 years or older and currently providing physical, emotional, and/or psychological support for a family member or friend with dementia at home or in long-term care;
(b) currently providing at least four hours of support a week for a person living with dementia; and
(c) currently living in Canada.
(d) must speak English
Recruitment End Date
- Observational StudyOnline & In-Person
What is this Study about?
This study, "Stranger than Family: Decision-Making & Ethics of Substitution for People Living With
Dementia Going It Alone", explores how people facing dementia alone are connected with a substitute
decision-maker and how ideas about capacity, consent, and decision-making affect them.
Interviews will be conducted with:
- People who are facing dementia alone
- Healthcare and social service workers
- Substitute decision-makers for others who are not close family members or close friends
The overall goal of this study is to identify opportunities for advocacy, policy, and practice change to
better support people facing dementia alone.
Eligibility Criteria
You are eligible to participate if you:
- Live in Ontario or Alberta AND
- Have a diagnosis of dementia or are at-risk and planning for a future living with dementia and are
facing dementia alone OR
- Are a healthcare or social service worker, or other professional who has experience trying to connect
adult clients with a substitute decision-maker OR
- Have experience as a substitute decision-maker for someone living with dementia who is not a close
family member or friend
In addition, to be eligible you must:
- Be able to participate in an interview over the phone, on Zoom, or in-person AND
- Understand the purpose of the study and what participation involves
-Speak English
Recruitment End Date
- Observational StudyIn-Person and Online
What is this Study about?
VRx@Home is a 5-week virtual reality at-home intervention with the goal to explore whether virtual reality experiences can enhance communication between persons living with dementia and their care partners. We also aim to explore how a head-mounted VR system, which delivers a fully immersive experience compares to a Tablet-based technology.
Eligibility Criteria
- Persons living with mild-to-moderate dementia who are living at home
- Person living with dementia has no history of stroke, bypass surgery, or seizure disorders
- A friend/family care partner who speaks and understands English and is willing to also participate in the intervention
- Resides in Greater Toronto Area (Toronto, Peel, Halton, York, and Durham regions)
- Individuals who speak English
Recruitment End Date
- Observational StudyOntario
What is this Study about?
Caregivers of people living with dementia have direct experience of how the dementia is progressing. They are essential in evaluating the real-world benefits of treatment and making decisions to keep the person at home or consider different levels of care. The aim of this study is to develop a new CAregiver REported and weighted Dementia outcome measure (CARED).
Eligibility Criteria
- Caregiver to a person living with dementia
- You provide assistance with activities of daily living
Recruitment End Date
Alzheimer Society of Canada
20 Eglinton Avenue West, 16th Floor
Toronto, Ontario M4R 1K8
Information and Referral Line: 1-855-705-4636
Email: [email protected]
Charity registration number: 11878 4925 RR0001
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