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).
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.
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.
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
The purpose of this study is to assess whether a virtually-delivered healthy lifestyle intervention (over Zoom) is feasible for individuals who feel that their memory or thinking is declining.
-Are between the age of 65-85
-Are concerned about your memory and other thinking abilities
-Have access to internet at home
-Are a resident of Saskatchewan, Manitoba, Ontario, or Quebec
We are inviting adults 55+ and care partners of people living with dementia to participate in an offering of a six-session culinary nutrition education program. All program participants are invited to take part in an optional research study examining their experiences and outcomes associated with their program participation, but research participation is entirely voluntary.
Live in Saskatchewan (priority will be given to participants living in communities within a 150 km radius of Yorkton,SK)
- Are either 55 or over OR a care partner of a person living with dementia
The aging of the Canadian population and the lack of care personnel increase the number and responsibilities of family caregivers with the elderly. By adopting the first policy recognizing caregivers in Quebec in April 2021, the Quebec government is committed to better supporting caregivers in order to lighten their burden. The time is more appropriate than ever to highlight the reality of informal support for seniors from ethnocultural communities in the context of immigration. More specifically, our study aims to identify the trajectories of caregiving within the Maghreb community. Collecting data from key people would allow us to have an external perspective on the issue studied and would enrich our understanding of the realities and experiences of caregivers in the context of immigration (case study: the North African community), of their network of support as well as the potential impact of migration trajectories and Maghrebian culture on his practice of close care.
- Be a person over 18 years old.
- Identify yourself as a person of North African origin, i.e. from Morocco, Algeria, Tunisia, Libya and Egypt.
- Be a permanent resident, Canadian citizen by naturalization. Or be born in Canada and have at least one parent born in the Maghreb (Morocco, Algeria, Tunisia, Libya, Egypt).
- Reside in Quebec
- Support an elderly relative who also lives in Quebec or have supported an elderly relative during the last five years.
The aim of our study is to better understand whether certain lifestyle factors (such as physical activity and hearing) are related to early changes in memory and thinking abilities in older adults. We are especially interested in enrolling individuals who are South Asian or East Asian, because little research has focused on brain health in Canadians of diverse racial/ethnic backgrounds.
By participating, you will help us better understand how lifestyle factors are related to memory and thinking changes in adults from diverse communities. We hope that this will lead to improved prevention and early intervention strategies for dementia.
You are eligible to participate if you…
- Are 55-85 years old
- Have no major medical or psychiatric diagnoses
- Are comfortable speaking and reading English
- Are able to undergo an MRI scan
Eligibility is dependent on an additional conversation with the study team.
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.
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
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.
PREVENT is recruiting healthy control participants for a prospective longitudinal cohort study. The aim of the study is to help doctors diagnose dementia sooner using serial magnetic resonance imaging (MRI) and other biomarkers in the blood and cerebrospinal fluid.