Twenty-one caregivers responded to our February 2016 survey. Below you will find a quick summary and interpretation of the results. [ABBREVIATIONS: PWA=person with aphasia; PWAA= person with aphasia and apraxia; PPA = person with Primary Progressive Aphasia; C=caregiver; S= Stroke; TBI=traumatic brain injury]
Thanks for all of you who responded to our survey and who requested additional information.
CLICK HERE for the link to the Survey results.
75% caregivers/partners take care of a PWA; 25% take care of a person with PWAA OR a person with PPA.
Question 1. Are you a caregiver for a _ _ _ ?
Aphasiatoolbox® now has an online program for PPA and their caregivers.
Question 2. Was the aphasia caused by . . . ?
S and/or TBI is the cause of aphasia in approximately 75% of these cases. PPA or another form of dementia causes 25% of cases.
Question 3. What is your age?
66% of Caregivers are between 45 to 64 years of age, which are also peak earning years. The unique set of tools, experts speech pathologists, and telepractice had allowed aphasiatoolbox® to offer affordable aphasia treatment and home practice. This includes an intensive, online aphasia treatment program.
Question 4. What is your gender?
Approximately 75% of survey responders are women caregivers.
Question 5. In addition to your caregiver responsibilities, do you also work at a _ _ _ ?
33% of respondents work a full time job in addition to their caregiving responsibilities. For this reason, aphasia treatment and practice needs to be available and adaptable to the busy schedule that caregivers have. By participating in online aphasia treatment, caregivers and aphasia therapists are coordinating scheduled appointments more easily than ever. To schedule an introductory appointment with an aphasia therapist, click here
Question 6. Are you the primary caregiver or decision-maker for the person with aphasia, apraxia or Primary Progressive Aphasia?
75% of respondents are the primary caregiver or decision-maker responsible for medical, financial, insurance and therapy decisions.
Question 7. Do you make decisions regarding . . . ?
These are two individual responses to this specific question:
1. "Decisions about everything."
2. "I literally am his case manager."
These comments illustrate how demanding and all-encompassing caregiving can be with aphasia recovery. Aphasiatoolbox® offers a caregivers group online, providing the opportunity for peer support and for information and idea sharing.
Question 8. Please identify some of your main concerns as a caregiver/partner.
Responses to this question show the level of involvement that a caregiver gives to the person that he/she attends to. The leading response was:
"My concern is for the health and wellness of the person I take care of."
Another comment indicated the importance of
"resources for developing recovery"
. Since all aphasiatoolbox® treatment programs revolve around the Whole Person Recovery concept, the focus of treatment, practice and recovery is multi-faceted, robust, and always
challenging without frustrating.
Question 9. On a weekly basis, what level of perceived stress do you feel?
Not surprisingly, 1 out of 3 caregivers (33%) feel a large amount of stress. The use of Mindful Mental Processing has begun to dramatically reduce the effects of stress on the PWA and in turn creating a more calm conversational and communicative environment for PWA and caregiver daily interactions. Aphasia recovery is incompatible with aphasia stress.
Question 10. How do you normally handle your stress?
Many respondents do positive things to help manage their stress levels - i.e., praying, laughing, singing, OR exercise. They also understand that sharing their experiences can help lessen stress. Negative ways of lessening stress include turning to food or drink.
1. "My faith plays a huge part in my ability to handle stress. I also practice setting boundaries. If I know that a certain type of situation always produces stress, then I consciously avoid them if I have the an option to do so. I meditate on positive things in my life and chose to focus on those things instead of the bad experiences."
2. "Breathe"."Realizing how lucky I am that he is still here he knows who we are and what's going on and he had his same great sense of humor."
Question 11. How much sleep do you get on an average night?
We had incomplete data for this question. "No Responses" had the same number of responses - 28.5%, as "I get about 8 hours or more of sleep." - 28.5%.
Question 12. Do you sometimes feel lonely and unsupported?
Loneliness seems to be a common concern for caregivers; responses range from
"Yes, I occasionally feel lonely."
"Yes, I feel lonely or supported; I don't have anyone to talk to about what I'm going through."
Aphasiatoolbox® offers online groups and
opportunities to interact with others.
Question 13. Are you a part of any local or online support group for caregivers?
Approximately half the respondents said that they are part of a support group, meeting primarily online. The other half said that they do not participate in groups. The staff at aphasiatoolbox® can discuss with caregivers resources and groups in her/his geographical area.
to find out about support in your area and online.
Question 14. When you originally received the diagnosis of aphasia or PPA, do you feel that you received adequate referral information?
None of the respondents said that they received adequate referral information, and half of the respondents said that they felt unprepared. While this is what the data showed, the following comment sums it up best:
At aphasiatoolbox we are working diligently to not only serve as an effective referral source but to also advocate for more interactive sharing of information and referring to resources that will maximize aphasia recovery for each PWA.
15. This question was optional.