PARKINSON & MOVEMENT DISORDER ALLIANCECare Partner Survey

Thank you for sharing your experience with us. This survey is entirely confidential and anonymous. The questions are based on survey instruments designed for care partners of people with PD along with extensive research on care partner issues and needs. Thank you for taking the time to help us better serve you.

	Never	Occassionally	Sometimes	Often	Always
Found that you could not sleep through the night?	Found that you could not sleep through the night? Never	Found that you could not sleep through the night? Occassionally	Found that you could not sleep through the night? Sometimes	Found that you could not sleep through the night? Often	Found that you could not sleep through the night? Always
Found it difficult to get out and do the shopping?	Found it difficult to get out and do the shopping? Never	Found it difficult to get out and do the shopping? Occassionally	Found it difficult to get out and do the shopping? Sometimes	Found it difficult to get out and do the shopping? Often	Found it difficult to get out and do the shopping? Always
Found the demands of caring physically difficult?	Found the demands of caring physically difficult? Never	Found the demands of caring physically difficult? Occassionally	Found the demands of caring physically difficult? Sometimes	Found the demands of caring physically difficult? Often	Found the demands of caring physically difficult? Always
Felt anxious because of the responsibility of caring?	Felt anxious because of the responsibility of caring? Never	Felt anxious because of the responsibility of caring? Occassionally	Felt anxious because of the responsibility of caring? Sometimes	Felt anxious because of the responsibility of caring? Often	Felt anxious because of the responsibility of caring? Always
Been prevented from pursuing hobbies and other interests?	Been prevented from pursuing hobbies and other interests? Never	Been prevented from pursuing hobbies and other interests? Occassionally	Been prevented from pursuing hobbies and other interests? Sometimes	Been prevented from pursuing hobbies and other interests? Often	Been prevented from pursuing hobbies and other interests? Always
Felt worried about your own physical health?	Felt worried about your own physical health? Never	Felt worried about your own physical health? Occassionally	Felt worried about your own physical health? Sometimes	Felt worried about your own physical health? Often	Felt worried about your own physical health? Always
Thought that your caring role was being taken for granted by others?	Thought that your caring role was being taken for granted by others? Never	Thought that your caring role was being taken for granted by others? Occassionally	Thought that your caring role was being taken for granted by others? Sometimes	Thought that your caring role was being taken for granted by others? Often	Thought that your caring role was being taken for granted by others? Always
Felt that relationships with friends have been affected?	Felt that relationships with friends have been affected? Never	Felt that relationships with friends have been affected? Occassionally	Felt that relationships with friends have been affected? Sometimes	Felt that relationships with friends have been affected? Often	Felt that relationships with friends have been affected? Always
Felt impatient with the person you care for?	Felt impatient with the person you care for? Never	Felt impatient with the person you care for? Occassionally	Felt impatient with the person you care for? Sometimes	Felt impatient with the person you care for? Often	Felt impatient with the person you care for? Always

Never

Occassionally

Sometimes

Often

Always

Found that you could not sleep through the night?

Found that you could not sleep through the night? Never

Found that you could not sleep through the night? Occassionally

Found that you could not sleep through the night? Sometimes

Found that you could not sleep through the night? Often

Found that you could not sleep through the night? Always

Found it difficult to get out and do the shopping?

Found it difficult to get out and do the shopping? Never

Found it difficult to get out and do the shopping? Occassionally

Found it difficult to get out and do the shopping? Sometimes

Found it difficult to get out and do the shopping? Often

Found it difficult to get out and do the shopping? Always

Found the demands of caring physically difficult?

Found the demands of caring physically difficult? Never

Found the demands of caring physically difficult? Occassionally

Found the demands of caring physically difficult? Sometimes

Found the demands of caring physically difficult? Often

Found the demands of caring physically difficult? Always

Felt anxious because of the responsibility of caring?

Felt anxious because of the responsibility of caring? Never

Felt anxious because of the responsibility of caring? Occassionally

Felt anxious because of the responsibility of caring? Sometimes

Felt anxious because of the responsibility of caring? Often

Felt anxious because of the responsibility of caring? Always

Been prevented from pursuing hobbies and other interests?

Been prevented from pursuing hobbies and other interests? Never

Been prevented from pursuing hobbies and other interests? Occassionally

Been prevented from pursuing hobbies and other interests? Sometimes

Been prevented from pursuing hobbies and other interests? Often

Been prevented from pursuing hobbies and other interests? Always

Felt worried about your own physical health?

Felt worried about your own physical health? Never

Felt worried about your own physical health? Occassionally

Felt worried about your own physical health? Sometimes

Felt worried about your own physical health? Often

Felt worried about your own physical health? Always

Thought that your caring role was being taken for granted by others?

Thought that your caring role was being taken for granted by others? Never

Thought that your caring role was being taken for granted by others? Occassionally

Thought that your caring role was being taken for granted by others? Sometimes

Thought that your caring role was being taken for granted by others? Often

Thought that your caring role was being taken for granted by others? Always

Felt that relationships with friends have been affected?

Felt that relationships with friends have been affected? Never

Felt that relationships with friends have been affected? Occassionally

Felt that relationships with friends have been affected? Sometimes

Felt that relationships with friends have been affected? Often

Felt that relationships with friends have been affected? Always

Felt impatient with the person you care for?

Felt impatient with the person you care for? Never

Felt impatient with the person you care for? Occassionally

Felt impatient with the person you care for? Sometimes

Felt impatient with the person you care for? Often

Felt impatient with the person you care for? Always

	0-1	2-4	5-7
laugh?	laugh? 0-1	laugh? 2-4	laugh? 5-7
exercise?	exercise? 0-1	exercise? 2-4	exercise? 5-7
take time for yourself?	take time for yourself? 0-1	take time for yourself? 2-4	take time for yourself? 5-7
do something you consider play?	do something you consider play? 0-1	do something you consider play? 2-4	do something you consider play? 5-7
socialize (not related to the disease)?	socialize (not related to the disease)? 0-1	socialize (not related to the disease)? 2-4	socialize (not related to the disease)? 5-7
feel connected to a support community?	feel connected to a support community? 0-1	feel connected to a support community? 2-4	feel connected to a support community? 5-7
reach out for support when you need it?	reach out for support when you need it? 0-1	reach out for support when you need it? 2-4	reach out for support when you need it? 5-7

0-1

2-4

5-7

laugh?

laugh? 0-1

laugh? 2-4

laugh? 5-7

exercise?

exercise? 0-1

exercise? 2-4

exercise? 5-7

take time for yourself?

take time for yourself? 0-1

take time for yourself? 2-4

take time for yourself? 5-7

do something you consider play?

do something you consider play? 0-1

do something you consider play? 2-4

do something you consider play? 5-7

socialize (not related to the disease)?

socialize (not related to the disease)? 0-1

socialize (not related to the disease)? 2-4

socialize (not related to the disease)? 5-7

feel connected to a support community?

feel connected to a support community? 0-1

feel connected to a support community? 2-4

feel connected to a support community? 5-7

reach out for support when you need it?

reach out for support when you need it? 0-1

reach out for support when you need it? 2-4

reach out for support when you need it? 5-7

	less than 20% of the time	21-40% of the time	41-60% of the time	61-80% of the time	81-100% of the time	Not Applicable
setting boundaries and saying no, even when I know he/she would like me to do something?	setting boundaries and saying no, even when I know he/she would like me to do something? less than 20% of the time	setting boundaries and saying no, even when I know he/she would like me to do something? 21-40% of the time	setting boundaries and saying no, even when I know he/she would like me to do something? 41-60% of the time	setting boundaries and saying no, even when I know he/she would like me to do something? 61-80% of the time	setting boundaries and saying no, even when I know he/she would like me to do something? 81-100% of the time	setting boundaries and saying no, even when I know he/she would like me to do something? Not Applicable
telling someone my true and honest experience of being a care partner?	telling someone my true and honest experience of being a care partner? less than 20% of the time	telling someone my true and honest experience of being a care partner? 21-40% of the time	telling someone my true and honest experience of being a care partner? 41-60% of the time	telling someone my true and honest experience of being a care partner? 61-80% of the time	telling someone my true and honest experience of being a care partner? 81-100% of the time	telling someone my true and honest experience of being a care partner? Not Applicable
knowing how to take time for me, even when I my day/week is packed?	knowing how to take time for me, even when I my day/week is packed? less than 20% of the time	knowing how to take time for me, even when I my day/week is packed? 21-40% of the time	knowing how to take time for me, even when I my day/week is packed? 41-60% of the time	knowing how to take time for me, even when I my day/week is packed? 61-80% of the time	knowing how to take time for me, even when I my day/week is packed? 81-100% of the time	knowing how to take time for me, even when I my day/week is packed? Not Applicable
letting go of guilt I feel about being healthy while my loved one is struggling?	letting go of guilt I feel about being healthy while my loved one is struggling? less than 20% of the time	letting go of guilt I feel about being healthy while my loved one is struggling? 21-40% of the time	letting go of guilt I feel about being healthy while my loved one is struggling? 41-60% of the time	letting go of guilt I feel about being healthy while my loved one is struggling? 61-80% of the time	letting go of guilt I feel about being healthy while my loved one is struggling? 81-100% of the time	letting go of guilt I feel about being healthy while my loved one is struggling? Not Applicable
understanding how to deal with cognitive decline in my loved one?	understanding how to deal with cognitive decline in my loved one? less than 20% of the time	understanding how to deal with cognitive decline in my loved one? 21-40% of the time	understanding how to deal with cognitive decline in my loved one? 41-60% of the time	understanding how to deal with cognitive decline in my loved one? 61-80% of the time	understanding how to deal with cognitive decline in my loved one? 81-100% of the time	understanding how to deal with cognitive decline in my loved one? Not Applicable

less than 20% of the time

21-40% of the time

41-60% of the time

61-80% of the time

81-100% of the time

Not Applicable

setting boundaries and saying no, even when I know he/she would like me to do something?

setting boundaries and saying no, even when I know he/she would like me to do something? less than 20% of the time

setting boundaries and saying no, even when I know he/she would like me to do something? 21-40% of the time

setting boundaries and saying no, even when I know he/she would like me to do something? 41-60% of the time

setting boundaries and saying no, even when I know he/she would like me to do something? 61-80% of the time

setting boundaries and saying no, even when I know he/she would like me to do something? 81-100% of the time

setting boundaries and saying no, even when I know he/she would like me to do something? Not Applicable

telling someone my true and honest experience of being a care partner?

telling someone my true and honest experience of being a care partner? less than 20% of the time

telling someone my true and honest experience of being a care partner? 21-40% of the time

telling someone my true and honest experience of being a care partner? 41-60% of the time

telling someone my true and honest experience of being a care partner? 61-80% of the time

telling someone my true and honest experience of being a care partner? 81-100% of the time

telling someone my true and honest experience of being a care partner? Not Applicable

knowing how to take time for me, even when I my day/week is packed?

knowing how to take time for me, even when I my day/week is packed? less than 20% of the time

knowing how to take time for me, even when I my day/week is packed? 21-40% of the time

knowing how to take time for me, even when I my day/week is packed? 41-60% of the time

knowing how to take time for me, even when I my day/week is packed? 61-80% of the time

knowing how to take time for me, even when I my day/week is packed? 81-100% of the time

knowing how to take time for me, even when I my day/week is packed? Not Applicable

letting go of guilt I feel about being healthy while my loved one is struggling?

letting go of guilt I feel about being healthy while my loved one is struggling? less than 20% of the time

letting go of guilt I feel about being healthy while my loved one is struggling? 21-40% of the time

letting go of guilt I feel about being healthy while my loved one is struggling? 41-60% of the time

letting go of guilt I feel about being healthy while my loved one is struggling? 61-80% of the time

letting go of guilt I feel about being healthy while my loved one is struggling? 81-100% of the time

letting go of guilt I feel about being healthy while my loved one is struggling? Not Applicable

understanding how to deal with cognitive decline in my loved one?

understanding how to deal with cognitive decline in my loved one? less than 20% of the time

understanding how to deal with cognitive decline in my loved one? 21-40% of the time

understanding how to deal with cognitive decline in my loved one? 41-60% of the time

understanding how to deal with cognitive decline in my loved one? 61-80% of the time

understanding how to deal with cognitive decline in my loved one? 81-100% of the time

understanding how to deal with cognitive decline in my loved one? Not Applicable

PARKINSON & MOVEMENT DISORDER ALLIANCE
Care Partner Survey

Understanding your experience

Question Title

* 1. Due to being a care partner how often in the last 4 weeks have you....

Question Title

* 2. On average how many times during the course of a week do you:

Question Title

* 3. Please share your comfort level with the following care partner skills: