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?
Persons living with dementia have a higher chance of getting lost and going missing. Alert systems such as Silver Alert programs notify the public about a missing person with cognitive impairment, thereby reducing their risk of exposure to harm. However, little is known about the concerns associated with the release of the missing individual's personal information to the public. We will explore the perspectives of stakeholders, including persons living with dementia, care partners, service providers, first responders, ethicists, lawyers/legal practitioners, technology developers and policy makers on the ethical and legal issues associated with the release of personal information in alert systems. Research findings will be used to inform policy and future implementation of alert systems in Canada.
Eligibility Criteria
You are eligible to participate if you have experience with public alert systems to locate missing persons with dementia and are a/an:
• Person living with dementia
• Care partner
• First responder
• Service provider
• Expert in law, ethics, or policy (lawyer, ethicist, and policy maker)
• English speaker
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?
[email protected] 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 StudyIn-Person
What is this Study about?
We want to determine if a nutrition questionnaire (SCREEN) works well to identify nutrition challenges for older adults with diagnosed memory problems, cognitive impairment or dementia when completed by themselves, or by a care partner on behalf of their cared for person.
Eligibility Criteria
You may be eligible if you are:
• 55 years or older
• Read/speak English
• Live within 45km of Waterloo, Guelph or London.
AND are an:
• Older adult with diagnosed memory problems, cognitive impairment or dementia with a care partner who either lives with you, or who is in daily contact with you and would be able to support reporting of their eating behaviours
• If living in a retirement home, the older adult must have lived in their home for at least 3 months and receive 2 or more meals each day from their retirement home
Recruitment End Date
- Observational StudyCanada-Wide
What helps or hinders physical activity engagement for persons with dementia during Canadian Winters
What is this Study about?
The purpose of this study is to understand what supports and prevents people living with dementia from participating in physical activity during the winter months. Identifying what helps or hinders winter physical activity can help inform researchers to create exercise interventions that are seasonally appropriate to persons with dementia. It can also allow policy makers to target key areas of improvement, such as icy sidewalks, to better support winter physical activity.
Eligibility Criteria
All participants must:
• Live in the community
• Be able to speak and understand English
• Be able to access and use Zoom using a computer or tablet
• Live in a region in Canada that regularly experiences snow or ice during the winter months.
Persons with dementia must:
• Be above the age of 55
• Be able to read and understand the consent process
• Be able to understand the nature of the interview
Care partners must:
• Identify as a primary family care partner for a person with dementia or mild cognitive impairment
• Not identify as someone living with dementia
Recruitment End Date
- Clinical TrialOntario
What is this Study about?
Multi-center, Double-Blind, Placebo-Controlled Phase 1/2 Trial to Assess the Safety and Tolerability of WVE-3972-01 Administered Intrathecally to Patients with Amyotrophic Lateral Sclerosis (ALS) or Frontotemporal Dementia (FTD).
Eligibility Criteria
- 18 Years to 80 Years
- Participants must have a documented mutation (GGGGCC [G4C2] repeat expansion) in the first intronic region of the C9orf72 gene and be diagnosed with ALS or FTD.
- Have a designated study partner
Recruitment End Date
- Observational StudyCanada-Wide
What is this Study about?
The Rare Dementia Support Impact Study is a cross-national 5-year collaboration between Nipissing University, Canada; University College London (UCL), England; and Bangor University, Wales, and the world’s largest study on rare dementia support. More than 5% of people living with dementia have a rare or young onset type, which is not well understood.
Eligibility Criteria
- Person living with a rare form of dementia or young onset dementia
- Caregiver for someone with rare or young onset dementia
- 18 years of age or older
- Reside in Canada
Recruitment End Date
- Observational StudySaskatchewan
What is this Study about?
The objective of this research is to conduct telephone interviews with people living with dementia and/or their family carers to explore their perspective of, and experience with, local community-based programs and services in southeast Saskatchewan communities and surrounding areas of RaDAR memory clinics.
Eligibility Criteria
- Person living with dementia
OR - Family/informal caregiver of a person living with dementia
AND - Reside in southeast Saskatchewan
Recruitment End Date
- Person living with dementia
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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