Quick Questions is an FTD Disorders Registry initiative that was created to learn more about people’s thoughts and feelings on various research topics.
Each month the Registry posts an FTD research-related question. Some questions are directed to persons diagnosed with frontotemporal degeneration (FTD) and/or their biological family members. Other times the question may be directed to caregivers and/or all family members. People are encouraged to answer if a question applies to them.
The Quick Questions survey uses the same secure platform that the Registry uses for its registration process. Answers are anonymous.
More than two-thirds (67%) of those answering our January 2023 Quick Question indicated that their FTD-diagnosed loved one lives or lived in a house, apartment, or another type of private residence.
Several people (35) wrote in their answers. The majority of these (51%) indicated that their FTD loved one had died, but did not provide information about where they lived before they passed. A couple of respondents listed several locations the FTD-diagnosed person lived as the disease progressed prior to passing away including home, assisted living, nursing home for dementia, and hospice.
Two people indicated that their loved one lives/lived in a Veterans Health Administration (VA) hospital. Other write-in responses noted various specialty care centers the person with FTD lives/lived.
The majority of people who responded to our February 2023 Quick Question use online educational materials (569) to help care for themselves or their FTD-diagnosed loved one. This was followed closely by information from doctors (528). Family (366), articles (363), and printed educational materials (306) complete the top five resources used.
There were 86 persons diagnosed with FTD who responded to the question. Spouses (129), biological family members (132), caregivers (24), and friends (2) answered for themselves. They were also invited to complete the poll on behalf of their FTD-diagnosed loved one [spouses (195), biological family members (97), caregivers (8), and friends (3)]. Three people did not identify their relationship.
Most people (612) answering this month’s question were from 48 U.S. states (606) the District of Columbia (4), and two U.S. territories: Puerto Rico (1) and the Virgin Islands (1). There were 37 people from 8 Canadian provinces and territories who replied. Australia (9), the United Kingdom of Great Britain and Northern Ireland (6), and Mexico (5) complete the top five countries with the highest number of respondents.
In March 2023, there were 526 people who reported on the different types of FTD Disorders Registry communication methods they use to learn about research studies for frontotemporal degeneration (FTD). The greatest response (220) was the Registry’s email newsletter articles.
Checking listings on the FTD Registry’s Find A Study webpage earned the second most responses (167), followed closely by Registry emails that refer to a specific study (152). Topical emails are sent to people who have signed up and consented to research. Email lists are created based on responses to the Registry’s three core surveys.
Most of the write-in responses related to non-Registry channels, some of these included physicians, clinicians, and other medical staff (16); universities (11); and the Association for Frontotemporal Degeneration (7).
Of the 809 people who responded to our April 2023 Quick Question, 65% do not participate in an FTD Support Group. Nearly a quarter of these people (194) identified as biological family members of someone diagnosed with FTD.
Our poll showed that spouses of people diagnosed with frontotemporal degeneration (FTD) were most likely to participate in an FTD Support Group.
However, some people who are not in support groups said that they meet with a therapist or other person one-on-one. One person noted that they use email for their support.