Quick Questions 2023
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.
Thank you for taking the time to answer our Quick Questions. The monthly feedback that you provide has helped us to better understand lived experiences with FTD.
At this time, we are still reviewing the May 2023 answers you shared with us. Your patience is greatly appreciated as we prepare a results report for you.
If you have any questions, please do not hesitate to contact us at 1-888-840-9980.
Together, we can continue to make strides toward FTD treatments and a cure.
In June 2023, our Quick Question asked about types of insurance coverage for persons diagnosed with frontotemporal dementia (FTD). A total of 697 respondents completed the question, which included FTD diagnosed individuals or loved ones answering on their behalf. Of the respondents, 671 reported having general medical health insurance, 172 have long-term care and 378 have life insurance. The respondents were able to select more than one option to best describe their total insurance coverage.
If you have any questions, please do not hesitate to contact us at 1-888-840-9980.
Together, we can continue to make strides toward FTD treatments and a cure.
In July 2023, the Registry used communication channels to ask participants, “Have you ever served in the military?” The purpose of this quick question was to assess the military status of individuals diagnosed with FTD. Participants submitted their answers during a three-week timeframe via email, Facebook and Twitter. The respondents consist of diagnosed persons who answered for themselves and biological family members, spouses, caregivers and friends who answered on behalf of a FTD diagnosed loved one.
- There were approximately 873 total respondents.
- Majority (727) of the respondents reported no current or prior military service
- Of the 146 respondents who reported “yes” to military service, 119 were active duty and 27 were in the reserve.
If you have any questions, please do not hesitate to contact us at 1-888-840-9980.
Together, we can continue to make strides toward FTD treatments and a cure.
In August 2023, the Registry asked about the current and former caregiver status of spouses, family members and friends of FTD diagnosed individuals. Additionally, the respondents were able to report the number of hours spent caring for a loved one each day. The purpose of this question was to understand the demographics and time commitment of the individuals providing daily support and care within the FTD community.
KEY HIGHLIGHTS
- 845 total respondents
- 67.8% female, 29.1% male, 3.1% no response
During the 2023 World FTD Awareness Week, the Registry used communication channels to ask participants:
- “What webinar content would you be most interested in?”
- “What is/was the biggest hurdle you encountered while caring for your loved one at home?”
RESULTS HIGHLIGHTS
- Approximately 373 responded to the first question and 345 responded to the second question
- For both questions, approximately 89% of respondents lived in the United States
- For both questions, approximately 11% of respondents lived outside the United States
In October 2023, the FTD Disorders Registry asked “Did you receive another diagnosis, or more than one before FTD was diagnosed? Of the 765 responses to our Quick Question, a little over half (387) answered yes to this question.
A total of 818 people answered our November 2023 Quick Question that asked about the frequency of headaches after an FTD diagnosis. While most (698) were not burden with persistent headaches, approximately 120 respondents did report this symptom occurred on a monthly basis.
55% have 2 or more people in the family diagnosed with FTD/related disorder
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.