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Quick Question February 2023 Results: What Resources Do/Did You Use to Help Care for Yourself or Your FTD-Diagnosed Loved One?

Quick Question February 2023 Results: What Resources Do/Did You Use to Help Care for Yourself or Your FTD-Diagnosed Loved One?

a white question mark and black Quick Questions text on a yellow background with the February question and the word results in white in all caps in a black triangle in the upper right corner
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.

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. 

Each month the FTD Disorders Registry asks a question seeking feedback from persons affected by frontotemporal degeneration (FTD). Last month, 679 people responded to the question: What Resources do/did you use to help care for yourself or your FTD-diagnosed loved one?

Multiple responses were allowed in order for everyone to include all of the resources they use.

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.

CATEGORIES

chart of resources used to care for self or FTD-diagnosed by category, n=679, multiple responses allowed. Horizontal blue bars for educational materials 1948, medical professionals 921, online resources 670, family and friends 622, in-person support 539, research study staff 390, conferences 257, phone support 181, none 49, other write-in 48

Choices were grouped by category. The total responses in each of these included:

  • 1,948 Educational Materials
  • 921 Medical Professionals
  • 670 Online Resources
  • 622 Family (366) & Friends (256)
  • 539 In-person Support
  • 390 Research Study Staff
  • 257 Conferences
  • 181 Phone Support
  • 49 No Resources Available/Used
  • 48 Other (Write-in)

Educational Materials (total answers = 1,948)

chart for education materials used to care for self or FTD-diagnosed person, n=679, multiple responses allowed. Horizontal orange bars for infographics 27, flyers 46, handouts, 91, brochures 139, videos 194, webinars 213, printed 306, articles 363, and online 569

People were offered the choice of using educational materials online and printed. In addition, they could select from several types of materials. Two people wrote in podcasts as a resource. One person wrote that their main help was resources they found on CurePSP’s website (www.psp.org).

Medical Professionals (total answers = 921)

chart of medical professionals used as resources to care for self or FTD-diagnosed person, n-679, multiple responses allowed. Horizontal orange bars doctors 528, nurses 224, counselors 169

While doctors (528) surpassed nurses (224) and counselors (169) as resources for help, there were 5 write-in responses for other medical professions. Specifically listed were home healthcare nurses, palliative care nurses, live-in nurses, and family members who are in the medical profession.

Online Support (total answers = 670)

chart for online support used to care for self or FTD-diagnosed person, n=679, multiple responses allowed. Horizontal orange bars phone 41, chat 43, video 64, individual 113, social media 191, group 218

Many people are or have received help through an online support group (218). This includes before, during, and after the COVID-19 pandemic. Two people specifically named Facebook groups in their write-in answers.

In-person support (total answers = 539)

chart for in-person support for resources for helping care for self or person diagnosed with FTD, n=679, multiple responses allowed. Horizontal orange bars Parkinson's group 8, Alzheimer's group 53, general dementia group 84, individual therapy or counseling 191, FTD group 203

Many people attend in-person FTD support groups to help care for themselves or their FTD-diagnosed loved one. Others use individual therapy or counseling. One person wrote in that their main help was an AFTD in-person support group (the Association for Frontotemporal Degeneration www.theaftd.org).

Research Study Staff (total answers = 390)

chart for research study staff as resources for help caring for self or FTD-diagnosed person, n=679, multiple choices allowed. Orange horizontal bar project managers 55, study coordinators 160, researchers 175

Conferences (total answers = 257)

chart for types of conferences use as resources to care for self or FTD-diagnosed person, n=679, multiple responses allowed. Orange horizontal bars Parkinson's meetings 5, Alzheimer's meetings 27, general dementia meeting 51, FTD meetings 174

Phone Support (total answers = 181)

chart for types of conferences use as resources to care for self or FTD-diagnosed person, n=679, multiple responses allowed. Orange horizontal bars Parkinson's support 5, Alzheimer's support 30, general dementia support 30, AFTD Helpline 43, FTD support 73

Write-ins (total answers = 48)

There were other resources people found to help them and their loved ones on the FTD journey that they wrote in. These fell under the following topics:

  • Caregiver
  • Hospice
  • Loved one passed away before any support systems existed/were near them
  • Social worker
  • Adult day care center/FILO Project
  • Faith-based support (including the Bible and chaplains)
  • Specific social media resources
  • Families/Groups focused on same diagnosis
  • Meetup groups
  • Common sense
  • Rare dementia support in Canada and the UK
  • Veterans Administration

Additional write-in answers are mentioned in the category summaries below where they fit.

Relationship to FTD-diagnosed loved one

chart for answering person's relationship to the FTD-diagnosed loved one, n=679. Blue horizontal bars FTD diagnosed 86, biological family answering for self 132, biological family answering for FTD diagnosed 97, spouse answering for self 129, spouse answering for FTD diagnosed, caregiver answering for self 24, caregiver answering for FTD diagnosed 8, friend answering for self 2, friend answering for FTD diagnosed 3, blank 3

There were 86 persons diagnosed with FTD who responded to the question. Spouses, biological family members, caregivers, and friends could answer for themselves and then complete the poll again on behalf of their FTD-diagnosed loved one.

Gender

pie chart for gender of persons answering question about what resources they use to help care for themselves or their FTD-diagnosed loved one, n=679. Yellow portion is female 467 for 69%, orange portion is male 203 for 30%, light blue slice is prefer not to answer 8 for 0.75%, dark blue slice is non-binary 1 for 0.25%

  • 467 Female (69%)
  • 203 Male (30%)
  • 8 Prefer not to answer (0.75%)
  • 1 Non-binary (0.25%)
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