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
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
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.