2018 oregon caregiving survey - aarp® official site...caregivers feel stressed out emotionally 71%...

AARP.ORG/RESEARCH | © 2019 AARP ALL RIGHTS RESERVED DOI: AARP RESEARCH

FAMILY CAREGIVING IN OREGON:A SURVEY OF REGISTERED VOTERSAGE 40 AND OLDER

March 2019

Prepared by Terri Guengerich and Joyce DeMonnin

https://doi.org/10.26419/res.00259.033

AARP.ORG/RESEARCH | © 2019 AARP ALL RIGHTS RESERVED AARP RESEARCH

Table of Contents

2

Key Findings……………………………………………………………………... 3

Caregiver Characteristics and Experiences………………………………….. 6

Community Services and Supports……………………………………………. 14

Workplace Flexibility………......………………………………………………… 18

Respite Care……….…………………………………………………………….. 20

Oregon Project Independence…………………………………………………. 22

Telehealth…………………………………………………………………………. 24

Implications……………………………………………………………………..... 28

Methodology……………………………………………………………………… 30

Appendix………………………………………………………………………….. 32

Contact………………………………………………………………………….... 36

AARP.ORG/RESEARCH | © 2019 AARP ALL RIGHTS RESERVED AARP RESEARCH 3

KEY FINDINGS


Key Findings

4

• Nearly half of registered voters 40-plus in Oregon have experienceas a family caregivers. If voters are currently not a caregiver orhaven’t been one in the past, they will likely be a caregiver in thefuture.

• In our survey, the typical family caregiver is a woman, who is 62years of age, and cares for a parent who is 80 years of age.

• Caregivers help their loved ones in a myriad of ways, fromcompanionship to transportation to managing finances as well asmore complex care as overseeing medications, or performingmedical or nursing tasks.

• Most caregivers have worked at some point while caring for aloved one; and for many, caregiving disrupts their work schedulesand ability to work.

• Most caregivers spend their own money providing care to theirloved ones – most likely on transportation or assistivetechnology.

• Many caregivers experience negative effects of caregiving,including stress, and difficulties in getting enough rest, exercise,eating healthy, or have problems with their own health.


Key Findings (Cont.)

5

• Most voters say that the most helpful type of assistance tocaregivers is paid time off from work to care for a loved one. Overhalf also say that respite care would be extremely or very helpful forfamily caregivers.

• Voters in Oregon overwhelmingly support many policies thatsupport family caregivers, including …

– Requiring employers to provide a limited amount of paid orunpaid leave to employees for family caregiving purposes

– Respite care for family caregivers

• Voters also support (across party lines) increasing funding forOregon Project Independence, a program that provides servicesto Oregonians 60-plus who do not receive Medicaid services.

• It takes rural voters (51%) and rural caregivers (52%) longer toget themselves or their loved ones to a medical specialist (over 45minutes) than it does urban voters (9%) or urban caregivers(17%).

• While voters are not generally aware of telehealth services, theyare interested in using them, and support many telehealthpolicies, such as the protection of patient data and greater accessto in-home medical monitoring services.


CAREGIVER CHARACTERISTICSAND EXPERIENCES

6


Nearly half of voters 40-plus in Oregon have experience as familycaregivers.

7

In our survey, the typical family caregiver in Oregon, currently caring for an adult loved one, is a woman (62%), who ismarried (79%), is 62 years of age, has graduated from college with at least a two-year degree (56%), and lives in ahousehold with income under $75,000 (58%).

Q1. A family caregiver is someone who provides UNPAID care for an adult loved one who is ill, frail, elderly, or has a physical, mental, or emotional disability. This unpaid care may include assisting with personalneeds like bathing and dressing, household chores, meals, shopping, transportation, or managing finances or medical care. Are you currently a family caregiver providing UNPAID care to an adult loved one?Base: All Respondents Q15. Have you ever been a family caregiver who provided UNPAID care to an adult loved one? Donut Base: All Respondents Chart Base: Current Caregivers (other surveys questionsare listed in the Appendix)

15%

34%

50%

Current Caregiver

Former Caregiver

Never a Caregiver

• Typical current caregivers also ….

– Are homeowners (90%)

– Are in good health (87%)

– Are likely to be currentlyworking (41%) or retired(46%), but more had workedat some point while caregiving(52%)

– Do not have children living athome (56%), but four in tendo (44%)

– Cares for a parent who is 80years of age


Family caregivers help their loved ones with many activities of daily living.

94%

89%

88%

87%

81%

70%

68%

52%

49%

Providing companionship/social activities

Taking them shopping or shopping for them

Aiding with household chores

Providing transportation to appointments

Helping them with meals

Helping them to manage finances

Overseeing their medication management

Having responsibility for other medical or nursing tasks

Assisting with bathing or dressing

8

Over nine in ten family caregivers surveyed provide emotional support to their loved ones through companionship or socialactivities, and about nine in ten help their loved one with shopping, chores, or transportation. Eight in ten help with meals,and about seven in ten help with finances or manage medications.

Q4. Thinking about the person you are providing care to the most, which of the following activities are you providing? Are you …? Q18. Thinking about the person you most recently provided care to, which of thefollowing activities did you provide? Did you …? Q3. Who are you caring for? Q17. Who did you care for? Q5. How often do you …? Is it …? Chart Base: Current and Former Caregivers

• A smaller but noteworthypercentage of caregivers helpwith more complex tasks ofcaregiving – medical andnursing tasks and bathing ordressing.

• At least half of currentcaregivers perform many ofthese tasks every day: meals(73%); companionship (60%),medications (60%); bathing ordressing (57%); and chores(56%).

• Caregivers most likely care fora parent (62%) or a spouse(19%).


Most caregivers have worked while providing care.

14%17%

31%

66%

Give up working entirelyto provide care

Go from working full-time to part-time to

provide care

Take a leave ofabsence from your job

to provide care

Go into work early orlate, or take time off to

provide care

9

Over half of family caregivers 40-plus held a job while providing care to their loved ones. And many of these caregiversneeded to change how they worked as well. Two in three working caregivers adjusted their work schedules, either by goinginto work early or late, or taking time off to provide care – most needing to do so weekly (26%) or monthly (48%). Three inten took a leave of absence to provide care. And over one in ten reduced their work hours to provide care or stoppedworking entirely.

Q8. Have you ever been employed either full- or part-time while providing care to your adult loved one? Q9. Now thinking again about the adult loved one you are currently providing care to, did you ever have to...? Q21. Have you ever been employed either full or part-time while providing care to your adult loved one? Q22. Now thinking again about the adult loved one you have most recently provided care to, did youever have to …? Donut Base: Current and Former Caregivers Chart Base: Current and Former Working Caregivers

57%

43%

Have worked Have not worked


Caregivers spend money to provide care and change their homes.

10

Over half of current and former caregivers 40-plus in Oregon have used their own money to provide care to their lovedones. One in three has modified their own homes, and one in seven has moved into another home.

Q11. Now thinking again about the adult loved one you are currently providing care to, did you ever have to …? Q24. Now thinking again about the adult loved one you have most recently provided care to, whileproviding this care did you ever have to …? Chart Base: Current and Former Caregivers

57%

35%

14%

Use your own money Make changes to your home Move into another home


Caregivers spend money transporting their loved ones.

11

Over seven in ten caregivers have spent money to transport their loved ones. Many others have spent money on assistivetechnology (wheelchairs, hearing devices, vision aids, wearable devices) or to modify their homes.

Q7. As a caregiver, have you ever incurred any expenses for the following to help care for your loved one? Q20. As a former caregiver, did you ever incur any expenses for the following to help care for your lovedone? Chart Base: Current and Former Caregivers

7%

15%

23%

34%

45%

72%

Using adult day care

Using respite care

Hire home health aide/personal careattendant

Home modifications

Assistive technology

Transportation


Most caregivers experience some form of stress while providing care.

12

Over eight in ten family caregivers (86%) have experienced at least one of the stressors asked about in this survey. Sevenin ten caregivers report feeling stressed out emotionally due to their caregiving responsibilities, and nearly two in threeworking caregivers are stressed in trying to balance their work and family responsibilities.

Q12. As a caregiver do you ever …? Q25. As a caregiver did you ever …? Chart Base: Current and Former Caregivers *Asked of working caregivers

Current & FormerCaregivers

Feel stressed out emotionally 71%

Feel stressed in trying to balance job and family* 64%

Find it difficult to get enough rest 51%

Find it difficult to exercise regularly 44%

Find it difficult to take care of household 43%

Experience problems with health 30%

Find it difficult to maintain a healthy diet 28%

Feel strained financially 26%

Find it difficult to find time to visit doctor 20%


Many registered voters 40-plus in Oregon say they are likely to be acaregiver in the future.

13

Likelihood of providing care in the future does vary by caregiver status. Not surprisingly, over three in four currentcaregivers say they are extremely or very likely to provide care in the future. Over four in ten former caregivers and over aquarter of those who have never provided care, say they are extremely or very likely to be a caregiver in the future.Younger respondents (40-64) are more likely to say they will be providing care in the future (49%) than respondents 65-plus(31%).

Q14. Q27. Q28. How likely do you think it is that you will provide any caregiving or assistance on an unpaid basis for an adult loved one in the future? Is it …?

CurrentCaregivers

FormerCaregivers

Never aCaregiver

AllRespondents

Extremely/very likely 77% 43% 28% 41%

Somewhat likely 10% 22% 25% 21%

Not very/Not at all likely 11% 34% 46% 36%


COMMUNITY SERVICES ANDSUPPORTS


The most helpful caregiver support is paid time off from work for working caregiversto care for their loved ones.

66%

57%

53%

43%

43%

40%

39%

37%

29%

14%

25%

22%

31%

26%

28%

28%

24%

34%

17%

16%

23%

25%

30%

31%

33%

38%

35%

0% 20% 40% 60% 80% 100%

Paid time off from work to care for a loved one

Information about available resources for caregivers in your community

Respite care or breaks from caregiving responsibilities

Assistance with household chores

Providing transportation specifically to medical appointments

Providing transportation generally

Providing meals

Understanding how to manage medications

Connecting with other caregivers in similar situations

Extremely/very Somewhat Not very/Not at all

15

Over half of voters in Oregon would also find helpful information on caregiving resources and respite care, and four in tenwould find assistance with chores and transportation helpful. In addition to these helpful supports, seven in ten voters(71%) say it is extremely or very important to have more resources and training for family caregivers.

Q29. In your opinion, as a current caregiver, how helpful would the following types of caregiving support be to you? In your opinion, as a former caregiver, how helpful would the following types of caregiving support be to you? In youropinion, as someone who may provide care in the future, how helpful would the following types of caregiving support be to you? Q30. Family caregivers help older residents in Oregon live independently by performing services like bathingand dressing as well as managing medication and paying bills. How important do you think it is to have more resources and training for family caregivers? Chart Base: All Respondents


End of life or hospice services top the list as the most important service to have in

community.

91%

83%

80%

80%

78%

70%

67%

64%

63%

62%

6%

13%

15%

16%

18%

23%

24%

29%

30%

29%

2%

2%

3%

3%

3%

5%

8%

6%

6%

7%

0% 20% 40% 60% 80% 100%

End of life/hospice services

Well trained home health care providers

Easy way for caregivers to find info and resources

Special transportation services

Visiting nurse services

Breaks for family caregivers

Home delivered meals

Senior or community centers

Chore or homemaker services

Congregate meals

Extremely/very Somewhat Not very/Not at all

16

At least eight in ten voters say well trained home health care providers, easily accessible caregiver information andresources, and special transportation services are extremely or very important services to have in their communities.

Q47. Now I’m going to ask you about some specific community services. Please tell me how important you think it is to have the following services available in your community to help older adults liveindependently. How important is having XXX in your community? Is it …? Chart Base: All Respondents


Most voters prefer being cared for at home if they need help.

17

Over eight in ten voters say that if they or a family member needed help, they would prefer to receive that help at home withcaregiver assistance. One in ten would prefer to receive help in an assisted living facility, and one in a hundred wouldprefer a nursing home.

Q44. If you or a loved one needed help when the basic tasks of life become more difficult due to aging or illness, where would you prefer to receive that care or help for yourself or a loved one? Q13. How importantis it to you to be able to provide care for your loved one so that they can keep living independently in their own home? Q26. How important was it to you to be able to provide care for your loved one so that theycould keep living independently in their own home? Chart Base: All Respondents Bullet Base: Current and former caregivers

85%

10%

1%

4%

Home withcaregiver

assistance

Assisted livingfacility

Nursing home

Not sure/Refused

• Nine in ten caregivers(90%) also say it isextremely or veryimportant to be able toprovide care so theirloved ones could keepliving independently athome.


WORKPLACE FLEXIBILITY

18


There is overwhelming support by Oregon voters 40-plus for three of ourfour workplace flexibility policies for family caregivers.

19

Eight in ten voters support employers not being able to fire an employee for caregiving and the provision of unpaid leave forcaregiving purposes. Likewise, seven in ten support requirements that employers provide some paid leave, and exactly halfsupport a statewide system of paid family or medical leave. Support is high for workplace flexibility across political partiesfor three of these four policies.

Q31. Now I’m going to ask if you support or oppose some proposals that would provide help for working family caregivers. Do you support or oppose …? Q32. Is that strongly or somewhat? D10. Do you consider yourself tobe a …? Chart Base: All Respondents

50%

69%

80%

80%

16%

8%

5%

7%

34%

23%

15%

13%

Creating a statewide system forpaid family/medical leave via payroll

deduction

Requiring employers to providesome paid leave

Requiring employers to provide alimited amount of unpaid leave

Ensuring employers cannot fire anemployee for taking time off for

caregiving

Support Neither support or oppose/Not sure Oppose

72% 72%

57%

38%

76% 79%

68%

49%

93% 91%84%

66%

Ensuring employerscannot fire

Limited amount ofunpaid leave

Some paid leave Statewide system

Support by Political Party

Republicans Independents Democrats


RESPITE CARE

20


There is overwhelming support by Oregon voters 40-plus for theprovision of respite care for family caregivers.

21

Over eight in ten voters 40-plus in Oregon support the provision of short-term help by a home health aide so familycaregivers can take a break from their caregiving duties. Support remains high across political parties.

Q33. Do you support or oppose providing short-term help from a home health aide so family caregivers can take a break from their caregiving duties? This help could be provided in-home by a trained health aide orvolunteer or out-of-home through an adult day program. Q34. Is that strongly or somewhat? D10. Do you consider yourself to be a …? Chart Base: All Respondents

83%

7% 9%

Support Neither support oroppose/Not sure

Oppose

77%

85%91%




OREGON PROJECTINDEPENDENCE

22


There is overwhelming support by Oregon voters 40-plus for increasingfunding for Oregon Project Independence.

23

Seven in ten voters 40-plus in Oregon support increasing funding to Oregon Project Independence. Support remains highacross political parties.

Q35. Oregon Project Independence is a program that provides a variety of services to Oregonians age 60 and older who do not receive most Medicaid Services. These services are intended to support theirindependence and allow them to remain in their home as long as they wish. This program has experienced budget shortfalls in the past and as a result people who would use this service are placed on a waitlist forservices. Do you support or oppose increasing Oregon Project Independence funding? Q36. Is that strongly or somewhat? D10. Do you consider yourself to be a …? Chart Base: All Respondents

71%

12%

18%

Support Neither support oroppose/Not sure

Oppose

59%

68%

87%




TELEHEALTH

24


The majority of Oregon voters 40-plus are not familiar with telehealth; however,many would be interested in using such services if needed.

25

Under half of voters (45%) have heard of the terms “telehealth” or “telemedicine.” And, seven in ten (69%) are at leastsomewhat interested in using telehealth services for themselves or a loved one.

Q38. Have you heard of the terms telehealth or telemedicine? Q39. Telehealth offers patients more options for accessing health care. Telehealth is another way for people to have one-on-one interactions with their health care providerswithout having to be in the same location at the same time by using communications technologies like cell phones, computers, and tablets. Examples of how telehealth provides more connected care include a patient wearing a monitoringdevice that tracks vital signs or alerts a family caregiver if there is a serious injury, or an online conversation between patients and their doctors to get a diagnosis, get advice, get a prescription filled, or to get a second opinion. How interestedare you in using telehealth services for yourself or a loved one if needed? Are you …? Chart Base: All Respondents

54%

… are not aware of telehealth

16%

22%

31%

13%

18%

1%

Extremely interested Very interested Somewhat interested Not very interested Not at all interested Not sure


Overall, it takes caregivers longer to get their loved ones to a specialist – it also takes allrespondents longer to get to a specialist.

26

46%

39%

23%

31%35%

30%

13% 12%16%

8%12%

25%

Nearest hospital Primary care doctor Specialty care doctor

Current and Former Caregivers – Time to GetLoved Ones to Health Care

15 minutes or less 16-30 minutes 31-45 minutes 46+ minutes

53%56%

36%33%

30% 31%

9% 9%13%

5% 5%

17%

Nearest hospital Primary care doctor Specialty care doctor

All Respondents – Time to Get Themselves toHealth Care

15 minutes or less 16-30 minutes 31-45 minutes 46+ minutes

Q6. Thinking about the person you are providing care to, about how long would it take you, in minutes, to get that person to …? Q19. Again, thinking about the person you previously provided care to, about how longwould it have taken you, in minutes, to get that person to …? Q37. About how long would it take you, in minutes, to get to …? Are you …? Chart Base on left: Current and former caregivers Chart Base on right: AllRespondents


There is overwhelming support for telehealth policies that require protection ofpatient data, monitoring technologies, and how telehealth is administered.

27

Nine in ten voters 40-plus in Oregon support a requirement that health care providers follow strict guidelines to protectpatient information. Over eight in ten also support greater access to in-home medical monitoring technology, the coverageof telehealth services received at home or regardless of the distance between a patient and doctor, and the investment intechnology to protect health information.

Q40. Q42. Do you support or oppose policies that would …? Q41. Q43. Is that strongly or somewhat? Chart Base: All Respondents

72%

74%

81%

86%

87%

87%

89%

9%

10%

7%

5%

5%

5%

5%

19%

17%

11%

9%

8%

8%

6%

Require private health insurance, employer-based insurance, Medicare, and Medicaid tocover telehealth services

Invest in broadband Internet to improve access to telehealth services

Allow for telehealth coverage regardless of the distance between patient's home andprovider's office

Invest in technology to protect the security of health information

Being able to receive telehealth services while at home from a provider in their office

Greater access to in-home medical monitoring technologies

Require health care providers to follow strict guidelines to protect patient data

Support Neither support or oppose/Not sure Oppose


IMPLICATIONS

28


Implications• In Oregon, there are approximately 469,000 Family

Caregivers providing $5.7 billion worth of care.

• Nearly half of Oregon voters have experience as a familycaregiver. The typical family caregiver in Oregon,currently caring for an adult loved one, is a woman(62%), who is married (79%), is 62 years of age, hasgraduated from college with at least a two-year degree(56%), and lives in a household with income under$75,000.

• Family caregivers are under a great deal of stressemotionally as they try to balance work, caregiving andmanaging their own health and personal households.

• Caregivers say workplace flexibility is the most importantneed that they have, and there is overwhelming supportamong voters 40-plus for workplace flexibility policies toallow caregivers paid or unpaid time off to care for aloved one.

• Oregon voters 40-plus see a tremendous need forrespite service to give caregivers a break and for OregonProject Independence.

29


METHODOLOGY

30


Methodology

• Objectives: To explore the experiences and opinions of familycaregivers aged 40-plus in Oregon. To measure support of variouspolicies that support family caregivers.

• Methodology: Telephone survey (both landline and cell).

• Qualifications: Age 40 or older and registered to vote in the Stateof Oregon.

• Sample: Registered voter list targeting ages 40 and older fromAristotle International (N=900). Oversample of voters in countieswith population under 30,000.

• Interviewing dates: September 26-October 17, 2018.

• Weighting: The data is weighted by age within gender andgeography reflect the 40-plus population of registered voters inOregon.

• Questionnaire length: Interviews averaged 24 minutes in length.Full questionnaire is available upon request.

• Confidence interval: Total sample: ± 3.27%.

31


APPENDIX

32


Visual Production CreditsPage 1: Getty Images/SolStockPage 3: iStock.com/VetkitPage 4: Randy Rasmussen for AARP OregonPage 5: Getty Images/GarysFRPPage 6: Getty Images/Eva Katalin KondorosPage 7: Getty Images/Julie FairmanPage 10: iStock.com/Olya SolodenkoPage 11: Getty Images/Ryan J. LanePage 12: iStock.com/Juan MoninoPage 13: Getty Images/Rich LeggPage 14: AARP/Jim BurgerPage 17: iStock.com/David SucsyPage 18: iStock.com/Robert ChurchillPage 20: CasarsaGuruPage 22: AARP/Joyce DeMonninPage 24: iStock.com/Brian A JacksonPage 28: iStock.com/Alex SkopjePage 29: AARP/Joyce DeMonninPage 30: iStock.com/Onur DöngelPage 31: iStock.com/scanrailPage 32: iStock.com/Oez

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Other Survey Questions

S1. Our study is interested in the opinions of people in certain age groups. Could you please tell me your age as ofyour last birthday?

S3. To ensure it is recorded accurately, could you please state your gender?

S5. Which of the following best describes your current employment status?

Q2. What is the age of the person you are providing care for? Q16. What was the age of the person who you mostrecently provided care to?

Q3. Who are you caring for? Q17. Who did you care for?

Q6. Have you ever been employed either full- or part-time while providing care to your adult loved one? Q19. Haveyou ever been employed either full or part-time while providing care to your adult loved one?

D1. What is your current marital status?

D3. In general, when compared to most people your age, how would you rate your health?

D4. Thinking about who lives in your household, do you currently …?

D5. Do you own or rent your primary residence?

D6. What is the highest level of education that you completed?

D15. We realize income is a private matter and so rather than ask you anything specific about your income, I’d like toask you to please stop me when I get to the category that includes your household’s income before taxes in 2017.

34


About AARPAARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older tochoose how they live as they age. With nearly 38 million members and offices in every state, the District of Columbia,Puerto Rico, and the U.S. Virgin Islands, AARP works to strengthen communities and advocate for what matters mostto families with a focus on health security, financial stability and personal fulfillment. AARP also works for individuals inthe marketplace by sparking new solutions and allowing carefully chosen, high-quality products and services to carrythe AARP name. As a trusted source for news and information, AARP produces the nation's largest circulationpublications, AARP The Magazine and AARP Bulletin. To learn more, visit www.aarp.org or follow @AARP and@AARPadvocates on social media.

http://www.aarp.org/


For questions about this survey or itsmethodology, please contact Terri Guengerich,

[email protected]

For media inquiries, please contact JoyceDeMonnin, [email protected]

This research was designed and executed by AARP Research

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2018 oregon caregiving survey - aarp® official site...caregivers feel stressed out emotionally 71%...

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