Frontotemporal Dementia and related disorders - Online Survey for Caregivers and Healthcare providers

What is this Study about?

Frontotemporal dementia (FTD) and related disorders are the second most common causes of early-onset dementia after Alzheimer's disease. Compared to other neurocognitive disorders, there is limited information about the lived experience of people with FTD.

With this study, we hope to gain a better understanding of the journey through the Canadian healthcare system of people living with FTD as well as gain a better understanding of the challenges, barriers, and unmet needs of their caregivers and healthcare professionals. Information gathered will help to mitigate the barriers to obtaining a diagnosis and adequate care as well as help to improve services.

What Will Happen in This Study?

Participants are invited to complete an online survey that has been developed by a team of researchers with clinical expertise in diagnosing and treating patients with FTD.

In separate surveys, caregivers' and healthcare providers' will be asked questions pertaining to their experiences, opinions, and needs with regards to providing care to people living with a diagnosis of FTD.

The estimated survey completion time is 30 to 45 minutes for caregivers and 5 to 10 minutes for healthcare providers.

The survey can be completed in English or in French and is available at

https://www.surveymonkey.com/r/Canadian-Survey-on-FTD-and-Related-Disorders

Who is Eligible to Participate in this Study?

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.

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