Form 1 Caregiver Survey

Baseline Questionnaire for Caregiver Longitudinal Study 02.26.15

An important part of this study is to understand the reasons that you are seeking respite services. Please indicate how much you hope the Senior Companion services might help you. For each statement you can check: not at all, a little, somewhat, a lot, a great deal.

1. Having a Senior Companion might help me…iii		1. Not at All	2. A Little	3.Somewhat	4.A Lot	5. A Great Deal	9998. DK	9999.Prefer Not to Answer
a.	find time to visit with friends and family
b.	find time to relax
c.	find time for myself
d.	find time to be involved in social and entertainment activities
e.	manage the number of requests and demands by my family member or friend (the person you are caring for)
f.	manage conflicts with my family
g.	find time to do chores around the house
h.	find time to go shopping for groceries
i.	handle behavior of my family member or friend that is difficult to manage
j.	find time to pay my bills or do paperwork
k.	enjoy time with my family member or friend (the person you are caring for)
l.	find time to go to doctor’s appointments
m.	other (specify _____)

As a result of helping to care for your family member or friend; please indicate how the following aspects of your life has changed. Responses are: not at all, a little, somewhat, a lot, a great deal.

2. Has helping to care for your family member or friend: iii		1. Not at All	2. A Little	3.Somewhat	4.A Lot	5. A Great Deal	9998. DK	9999.Prefer Not to Answer
a.	Given your life more meaning.
b.	Made you more satisfied with your relationship.
c.	Given you a sense of fulfillment.
d.	Made you feel resentful.
e.	Left you feeling good.
f.	Made you enjoy being with your family member or friend more.
g.	Made you feel frustrated.
h.	Left you feeling exhausted
i.	Other (Specify: _______

This study would like to understand the amount of physical activity that you do daily.

Self-reported Physical Activity: ^iv

3. How often do you take part in sports or activities that are moderately energetic such as, gardening, cleaning the car, walking at a moderate pace, dancing, floor or stretching exercises?

1. More than once a week

2. Once a week

3. One to three times a month

4. Hardly ever or never

5. Every day

9998. DK (don't know)

9999. Prefer not to answer

Self-Rated Health^v

4. Would you say your health is:

1. Excellent ___

2. Very good ___

3. Good ___

4. Fair ___

5. Poor ___

9998. DK (don't know)

9999. Prefer not to answer

Life Satisfaction: ^vi

5. Please think about your life and situation right now; how satisfied are you with …

	1. Completely Satisfied	2. Very Satisfied	3. Somewhat Satisfied	4. Not Very Satisfied	5. Not at All Satisfied
a. The city or town you live in?
b. Your daily life and leisure activities?
c. Your family life?
d. Your present financial situation?
e The total income of your household?
f. Your health?
g. Your life-as-a-whole these days?

The next few questions will help the study understand about your health.

Chronic Conditions:^vii

6.	Has a medical doctor ever told you that you have any of the following health conditions?	1.Yes Yes	0. No	8. DK	9. Prefer Not Answer/RF
a.	High blood pressure or hypertension?
b.	Diabetes or high blood sugar?
c.	Cancer or a malignant tumor, excluding minor skin cancer?
d.	Chronic lung disease such as chronic bronchitis or emphysema?
e.	Heart attack, coronary heart disease, angina, congestive heart failure, or other heart problems?
f.	Stroke?
h.	Emotional, nervous, or psychiatric disorder?
i.	Problems with depression?

Functional Status: ^viii

7. Do you have any long lasting conditions like blindness, deafness, or a severe vision or hearing impairment?

1. Yes

0. No

9998. DK (Don't Know); NA (Not Ascertained)

9999. PREFER NOT TO ANSWER/RF (Refused)

8. Do you have any condition that substantially limits basic physical activities like walking, climbing stairs, reaching, lifting, or carrying?

1. Yes

0. No

9998. DK (Don't Know); NA (Not Ascertained)

9999. PREFER NOT TO ANSWER/RF (Refused)

The study would like to understand the activities people are not able to do because of a health or physical problem. For each statement, please indicate if you are able to do that activity. The responses are: yes, no, can’t do, and don’t do. You do not have to report any problems that you expect to last less than three months.

Functional Status: ^ix

9. Because of a health problem do you have any difficulty with:		1.Yes	0.No	2.Can’t Do	3.Don’t Do	9998.DK	9999.Prefer Not Answer/RF
a.	Walking one block?
b.	Sitting for about two hours?
c.	Getting up from a chair after sitting for long periods?
d.	Climbing several flights of stairs without resting?
e.	Stooping, kneeling, or crouching?
f.	Lifting or carrying weights over 10 pounds, like a heavy bag of groceries?

Now think about the past week and the feelings you have experienced. For each statement, was the statement true for you much of the time during the past week.

10. Much of the time during the past week, would you say yes or no?	1. Yes	0.No	9998. Don’t Know	9999. Prefer not to answer
You felt depressed.
You felt that everything you did was an effort.
Your sleep was restless.
You were happy.
You felt lonely.
You enjoyed life.
You felt sad.
You could not get going.
You had a lot of energy.

The next few questions reflect people’s thoughts and feelings. Please answer how you feel about each question. The responses are: often, some of the time, hardly ever or never.

Social/Emotional Loneliness: ^xxi

11.		1. Often	2. Some of the time	3. Hardly ever or never	9998. DK	9999. Prefer not to answer
a.	How much of the time do you feel that you are alone?
b.	How much of the time do you feel that you lack companionship?
c.	How much of the time do you feel left out?
d.	How much of the time do you feel isolated from others?
e.	How much of the time do you feel that there are people you feel close to?
f.	How much of the time do you feel that there are people you can turn to?

12. How many of your friends would you say that you have a close relationship with?

Please write a number on the line. ___________

9998. Don’t Know

9999. Refuse (I Prefer Not to Answer)

13. The next question is about your friends, please check the answer that shows how you feel about each statement. The responses are: a lot, some, a little, not at all.

	1. A lot	2. Some	3. A little	4. Not at All
How much can you rely on them if you have a serious problem?
How much do they let you down when you are counting on them?

The next few questions will help the study better understand the people who took the survey.

Demographics:

14. In what month and year were you born?

a. Month _____

01. JAN	02. FEB	03. MAR	04. APR	05. MAY	06. JUN
07. JUL	08. AUG	09. SEP	10. OCT	11. NOV	12. DEC

b. Year _____

9998. Don’t Know____

9999. I prefer not to answer ___

15. Do you consider yourself:

1. Hispanic or Latino origin____

2. Not Hispanic Latino origin_____

16. What is your race? Please select one or more. ^xii

1. American Indian or Alaska Native___

2. Asian ___

3. Black or African American____

4. Native Hawaiian or Other Pacific Islander____

5. White

Veteran Status:

17. What is your Veteran Status [CHECK ALL THAT APPLY]

1. Active duty or Reserve Component ___

2. Military family ____

3. Veteran ____

4. Family of veteran ____

5. None, not a veteran ____

9998. Don’t Know ____

9999. I prefer not to answer ____

Education:

18. What is the highest grade of school or year of college you completed?

1. No formal education ___

2. Grades 1-11 ___

3. Grade 12 (High School Diploma or GED) ___

4. Some College ___

5. Associate’s Degree ___

6. Bachelor’s Degree/College Graduate ___

7. Some graduate school ___

8. Completed a graduate/professional degree ___

9. Other ___

9998. I don’t know ___

9999. I prefer not to answer ___

Marital Status:

19. Are you currently married, have a partner as if married, separated, divorced, widowed, never married, or other?

1. Married ____

2. Have a partner ____

3. Separated ___

4. Divorced ___

5. Widowed ___

6. Never Married ___

7. Other ___

9998. I don’t know ___

9999. I prefer not to answer ___

Gender:

20. Are you male or female ?

0. Male ___

1. Female ___

9998. I don’t know ___

9999. I prefer not to answer ___

There are a few questions about your household.

Household:

21. Household: Do you generally live alone or with others

1. Live alone ___ (SKIP TO Q23)

2. With others ___ (GO TO Q22)

9998. I don’t know ___ (SKIP TO Q23)

9999. I prefer not to answer ___ (SKIP TO Q23)

22. IF LIVING WITH OTHERS: Including yourself, how many people live in your

household?_______

9998. I don’t know ___

9999. I prefer not to answer ___

23. How many dependent children under age 18 do you care for?^xiii

0. NO CHILDREN (SKIP TO NEXT SECTION)

___________ [enter number of children]

9998. I don’t know ___ (SKIP TO NEXT SECTION)

9999. I prefer not to answer ___ (SKIP TO NEXT SECTION)

24. IF YOU HAVE CHILDREN: Do any of your children live within 10 miles of you?

1. Yes ____

0. No ____

9998. I don’t know ___

9999. I prefer not to answer ___

25. How many family members or friends do you care for?^xiv

___________ [enter number of adults]

9998. I don’t Know

9999. I prefer not to answer

Now, there are some questions about your employment, occupation, and income.

Employment:

26. What is your employment status [CHOOSE ONE]?

1. Work, full-time

2. Work, Part-time

3. Retired, but work part-time

4. Fully retired

5. Homemaker

6. Unemployed

9998. I don’t know

9999. I prefer not to answer

Occupation:

27. What sort of work did (or do) you do?^xv For example, electrical engineer, stock clerk, typist, farmer, secretary, teacher.

____________________________________

9998. Don’t Know

9999. Refuse (I Prefer Not to Answer)

Income:

28. Thinking about the total combined income from all sources for all persons in your household, including income from jobs, Social Security, retirement income, public assistance, and all other sources was your total household annual income during the last calendar year above or below $20,000?^xvi

1. Below $20,000  (SKIP TO Q29)

2. Above $20,000  (GO TO Q28)

(SKIP TO Q29)

9998. Don’t Know

9999. I prefer not to answer

29. IF ABOVE $20,000, Which category best describes your total household annual income during the last calendar year? Would you say…

1. $20,000 to $29,999

2. $30,000 to $39,999

3. $40,000 to $49,999

4. $50,000 to $59,999

5. $60,000 to $69,999

6. $70,000 to $79,999

7. $80,000 to $89,999

8. $90,000 to $99,999

9. $100,000 to $149,999

10. $150,000 or more

9998. Don’t Know

9999. I prefer not to answer

The study would like to ask some questions about the family member or friend you are caring for.

30. What is your relationship to the person you are caring for^xvii?

1. Wife/Husband/Partner

2. Mother/Father

3. Mother-in-law/Father-in-law

4. Grandchild

5. Brother/Sister

6. Brother-in-law/Sister-in-law

7. Son/Daughter

8. Friend

9. Other, please specify _____________

9998. DK (don't know); NA (not ascertained)

9999. Prefer not to answer/RF (Refused)

31. How long have you been caring for your family member or friend? ^xviii

1. Less than 6 months

2. 6 to 12 months

3. 13 to 24 months

4. More than 24 months but less than 5 years

5. 5 years or more

9998. DK (don't know); NA (not ascertained)

9999. Prefer not to answer/RF (Refused)

32. Does your family member or friend receive any of the following support services?	1. Yes	0.No	9998. Don’t Know	9999. Prefer not to answer
a. Shopping services.
b. Meal services.
c. Transportation.
d. Counseling.
e. Home care assistance.
f. Adult daycare.
g. Other, please specify _______________________

33. How long has your family member or friend had these support services?

1. Less than 6 months

2. 6 to 12 months

3. 13 to 24 months

4. More than 24 months

9998. DK (don't know); NA (not ascertained)

9999. Prefer not to answer/RF (Refused)

34. Are you the one most responsible for the care of your family member or friend?^xix

1. Yes

0. No

9998. DK (don't know); NA (not ascertained)

9999. Prefer not to answer/RF (Refused)

35. How many others people are now assisting with your family member or friend? ^xx DO NOT INCLUDE YOURSELF

_______________ [enter a number]

9998. Don’t know

9999. I prefer not to answer

36. Do you live in the same household as the family member or friend you are caring for?

1. Yes (SKIP TO Q38)

0. No (GO TO Q37)

9998. DK (don't know) (GO TO Q38)

9999. Prefer not to answer (GO TO Q38)

37. Do you live within 10 miles of the family member or friend?

1. Yes ___

0. No ___

9998. Don’t Know ____

9999. Prefer not to answer/Refused ___

There are a few activities people are able or not able to do because of a health or physical problem. For each statement, please indicate if your family member or friend is able or not able to do that activity. The responses are: yes, no, can’t do, and don’t do. You should not report any problems that you expect to last less than three months.

Functional Limitations of family member or friend:^xxi

38. Because of a health problem does your family member or friend have any difficulty with:		1. Yes	0. No	2.Can’t Do	3.Don’t Do	9998.DK	9999.Prefer Not Answer/RF
a.	Preparing a hot meal?
b.	Shopping for groceries?
c.	Making phone calls?
d.	Taking medications?
e.	Bathing or showering?
f.	Using the toilet?
g.	Getting in and out of bed?

Diagnosis of your family member or friend:^xxii

39.	Has a medical doctor ever told your family member or friend that they have any of the following health conditions?	1.Yes Yes	0. No	9998. DK	9999. Prefer Not Answer/RF
a.	High blood pressure or hypertension?
b.	Diabetes or high blood sugar?
c.	Cancer or a malignant tumor, excluding minor skin cancer?
d.	Chronic lung disease such as chronic bronchitis or emphysema?
e.	Heart attack, coronary heart disease, angina, congestive heart failure, or other heart problems?
f.	Stroke?
h.	Emotional, nervous, or psychiatric disorder?
i.	Problems with depression

40. Has your family member or friend ever been diagnosed with any terminal illness?

1. Yes ___

0. No ___

9998. Don’t Know ____

9999. Prefer not to answer/Refused ___

41. Which of the following best describes your family member or friend? [CHOOSE ONE OPTION] ^xxiii

1. No memory problem

2. Memory or cognitive problems suspected

3. Probable Alzheimer’s disease or other dementia is suspected, but is not medically diagnosed

4. Yes, Alzheimer’s disease or other dementia has been medically diagnosed

9998. Don’t Know

9999. Prefer not to answer/Refused

Gift Card

Thank you again for taking the time to participate in this survey. Would you prefer to get a $20 check or a $20 gift card?

_____ Gift card (Visa/Mastercard/American Express)

______ Check

Just to make sure that you receive the $20, could you provide your contact information.

First Name: ________________ Last Name: ____________________

Street Address: ____________________________________________________

____________________________________________________

City: ____________________ State: ___________ Zip: ____________

Phone ____________________________________________

E-mail: __________________________________________

42. How would you prefer we contact you in the future?

1. Phone ____

2. Email ____

3. Mail ____

43. What is the best phone number, email address, or physical address where you can be reached?

_______________________________________

Contact Information:

Is there a relative or friend, who does not live in this household, who will always know how to get in touch with you? We will only contact this person if we cannot locate you for the next survey.

NO .............................................................. 0 (END SURVEY)

YES............................................................. 1 (GO TO 44)

DON’T KNOW ............................................. 8 (END SURVEY)

I prefer not to answer ................................................... 9 (END SURVEY)

44. What is the name, address, and telephone number of that person? (GO TO 45)

First Name: ________________ Last Name: ____________________

Street Address: ____________________________________________________

____________________________________________________

City: ____________________ State: ___________ Zip: ____________

Phone: (_____)__________________

45. What is this person’s relationship to you?

RELATIVE (SPECIFY)_________________ 2

NEIGHBOR (SPECIFY)________________ 3

FRIEND (SPECIFY)___________________ 4

OTHER (SPECIFY)___________________ 7

I PREFER NOT TO ANSWER ................................................... 9

Is there another relative or friend, who does not live in this household, who will always know how to get in touch with you? We will only contact this person if we cannot locate you for the next interview.]

NO .............................................................. 0 (END OF SURVEY)

YES............................................................. 1 (GO TO 46)

DON’T KNOW ............................................. 8 (END OF SURVEY)

REFUSED ................................................... 9 (END OF SURVEY)

46. What is the contact information of that person? (GO TO 47)

First Name: ______________________ Last Name: ____________________

Street Address: ____________________________________________________

____________________________________________________

City: ____________________ State: ___________ Zip: ____________

Phone: (_____)________________________

Email: _______________________________

47. What is this person’s relationship to you?

RELATIVE (SPECIFY)_________________ 2

NEIGHBOR (SPECIFY)________________ 3

FRIEND (SPECIFY)___________________ 4

OTHER (SPECIFY)___________________ 7

I PREFER NOT TO ANSWER ................................................... 9

i Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

ii Savundranayagam, M.Y, Montgomery, R.J.V., and K. Kosloski. 2010. “A dimensional analysis of caregiver burden among spouses and adult children.” The Gerontologist 102: 1-11. Doi: 10.1093.

iii Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

iv Health and Retirement Study, Core Section, Section C NC223-NC225

v Health and Retirement Study, Core Section, Section NC001

vi Health and Retirement Study, Core Section, Section LB, Q39

vii Health and Retirement Study, Core Section, Section NC005, NC010, NC018, NC030, NC036, NC053, NC066, NC070

viii http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1187&context=edicollect; table 1

ix Health and Retirement Study, Core Section, Section G, G01 through G013

x Health and Retirement Study, Core, section LB*, Q20a,i Hughes, M. E., Waite, L. J., Hawkley,

L. C., & Cacioppo, J. T. (2004)

xi Health and Retirement Study, Core, Section LB*, Q20i Hughes, M. E., Waite, L. J., Hawkley, L. C., & Cacioppo, J. T. (2004)

xii Office of Management and Budget, Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity Federal Register, Notice October 30, 1997

xiii Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xiv Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xv Health and Retirement Study, Employment Section, Section J NJ062M

xvi Administration for Community Living, http://www.aoa.gov/AoARoot/Program_Results/POMP/Demographics.aspx

xvii Adopted from Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xviii Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xix Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xx Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

xxi Health and Retirement Study, Core Section, Section G, IADL: NG003-NG005, NG008, NG011; ADL NG041, NG044, NG047, NG052

xxii Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation; Caregiver Intake form - Senior Community Outreach Services JPerez; http://www.ncbi.nlm.nih.gov/pubmed/10922346

xxiii Montgomery, R. J. V., Rowe, J. M., Jacobs, J., & associates. (2010). Tailored CARE: Tailored Caregiver Assessment and Referral user manual (Version 3.0). Milwaukee: University of Wisconsin–Milwaukee Research Foundation.

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