What is your perspective on frontotemporal dementia?

Categories: Advocacy, Care Partners, Research|By |Published On: |

Survey seeks perspectives on caregivers’  journey with FTD.

This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.

A diagnosis of frontotemporal dementia is never easy to hear or accept. It likely takes a considerable amount of time to adjust to a new reality filled with daily challenges. Take a moment to contemplate how your world would appear if someone close to you were gradually losing their judgement and empathy. Imagine the emotions you would experience if this same person was losing their personality and displaying increasingly inappropriate behaviour.

For some, grasping this scenario might be difficult, as they have never been in such a situation or might find it hard to even consider this possibility. However, for others, these feelings are a harsh reality. Alterations in behaviors, personality and the decline of judgement or empathy are all symptoms of frontotemporal dementia, a type of neurodegenerative disease.

The symptoms mentioned above are just a few among several associated with frontotemporal dementia, which often leads to misdiagnosis. Consequently, the journey to obtaining a diagnosis can be lengthy and complex, involving uncertainty, worry, anxiety, and sadness for the anticipated future, or even anger from the changes accompanying this form of dementia. These emotions can be experienced not only by the person receiving the diagnosis but also by those around them.

Another factor leading to a complex and lengthy journey to obtain a diagnosis of frontotemporal dementia is the barriers in accessing specialized care and resources. This difficult journey might explain why caregivers of patients with frontotemporal dementia have been reported to have higher levels of distress compared to caregivers of patients with other neurodegenerative diseases. There is no doubt that being a caregiver demands a lot of sacrifice, courage, and patience.

Gaining a better understanding of the emotions and experiences of individuals with frontotemporal dementia and their caregivers throughout their Canadian healthcare journey is essential. This understanding can be achieved by directly engaging with caregivers of individuals

– Laurie Tremblay, CHUM Research Centre

Frontotemporal dementia is a type of neurodegenerative disease affecting the frontal and temporal regions of the brain. These areas of the brain are linked to behavior, speech, cognition, and personality. It is the second most common neurodegenerative diagnosis of early-onset dementia.

Frontotemporal dementia is often diagnosed in individuals between the ages of 45 and 65, a relatively young age with much still to be experienced. There is still no cure for this type of dementia, and the rate of progression will vary from one individual to another. Additionally, the clinical manifestations are large, and will go from behavioral manifestations to cognitive deficits or motors signs. This heterogeneity and the absence of specific laboratory markers available clinically are a challenge in correctly diagnosing this type of dementia.

Gaining a better understanding of the emotions and experiences of individuals with frontotemporal dementia and their caregivers throughout their Canadian healthcare journey is essential. This understanding can be achieved by directly engaging with caregivers of individuals with frontotemporal dementia.

Caregivers are uniquely positioned to share their experiences in navigating the healthcare system alongside the diagnosed individual. Since each journey is distinct, collecting diverse perspectives and stories from caregivers across Canada is indispensable.

The objective of this survey is to collect different perspectives and experiences from caregivers and healthcare providers who work with people with frontotemporal dementia. The experiences should reflect your journey in the Canadian healthcare system with regards for the needs and burden related to the caregiver role and for the investigating and providing care to patients with a frontotemporal dementia from a healthcare providers point of view.

Your insights will allow a better understanding of frontotemporal patients and caregivers’ journey in the Canadian healthcare system, as well as a chance to identify some barriers to clinical diagnosis and care for frontotemporal dementia and related disorders.

The survey is open until June 2024.

Click this link to complete the survey https://www.surveymonkey.com/r/Canadian-Survey-on-FTD-and-Related-Disorders

GET MORE INFORMATION

Learn more about living with frontotemporal dementia in these articles from our LiveWell article archive:

ABOUT THE AUTHOR

This project is led by researchers of the Canadian Consortium on Neurodegeneration in Aging (CCNA) and has been approved by the research ethics board of the CHUM Research Centre. The CCNA is supported by a grant from the Canadian Institutes of Health Research (CIHR) with funding from several partners. 

For any questions or request for additional information, please contact frontotemporal.research@gmail.com

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