What is your connection to FTD?
If other, please specify.
How long have you been/did you care for someone with FTD?
How long has your/did your loved one live(d) with FTD after a diagnosis?
Who diagnosed you or your loved one?
If other, please specify.
How was the diagnosis delivered?
If other, please specify.
Upon diagnosis, was a Care Team created?
Yes
No
I don't know
During the diagnosis, were any of the following presented to you?
If any additional materials were given, please specify.
Please share some initial feelings that developed when you received the diagnosis (i.e. I felt nervous, overwhelmed, and very sad).
What are/were some hurdles you encountered while caring for your loved one at home?
During your caregiving journey, did you place your loved one in a facility?
Yes
No
If yes, how long did you care for them at home before placement?
If your loved one was under the care of a facility, would you agree or disagree that the level of care was acceptable?
What were some hurdles you encountered when your loved one transitioned to the facility?
*other - please specify.
Regardless of where your loved one lived (at home or in a facility), where did you turn for support?
In a few words, please tell us what was most helpful for you during your journey? (i.e. talking to a therapist, finding a good support group, my family helping with care, etc)
Contrary to the question above, please tell us what caused the most stress during your journey (i.e. lack of resources, the lack of support from the medical community, etc)
Do you feel (agree) like your loved ones physician/care team understood your stressors and relieved any hardships?
During your journey, did you ever attend any educational conferences or seminars?
Yes
No
If you answered yes to the last question, do you agree that the information was valuable?
If you answered yes, do you agree that the information was easily digestible and understandable?
If you answered yes, please share what the conference/seminar was missing (i.e. I would have liked more tangible ways to help my loved one, I would have liked more literature on what's happening to the brain, etc)
Do you feel confident that the medical community has a solid pulse on how to assist the caregiver along side the patient?
Yes
No
Imagine a caregiver conference made just to you - What types of topics, lectures, sessions or resources would you want to see?
Is there anything else you want us to know that this survey sparked for you?
