Tulsa Caregiving Community Survey: Wave One (Baseline Results) AARP RESEARCH AARP.ORG/RESEARCH 2016 AARP. ALL RIGHTS RESERVED

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1 Tulsa Caregiving Community Survey: Wave One (Baseline Results)

2 Background Purpose The purpose of this survey was to serve as a baseline measurement among caregivers living in the selected communities of Tulsa, Oklahoma prior to the launch of the targeted caregiving outreach in this community. The survey was also conducted to capture basic caregiving demographic measures about caregivers in this community to help inform AARP Oklahoma s efforts (e.g. how old are the caregivers, who are they caring for, why they need care, what types of assistance they are in need of, etc.) Metrics include: Awareness of resources and organizations in the community to help family caregivers Likelihood to seek help (and where they would turn) Help sought/received Awareness of the CARE Act 2

3 Method Telephone survey (both RDD and cell phone sampling) conducted among 515 caregivers living in Tulsa, Oklahoma (see Appendix for a list of counties included). This study included caregivers providing care at least 6 hours per week to ensure we reach the caregivers most in need of assistance.* Data was collected by Alan Newman Research from March 16, 2017 to April 11, 2017 (see appendix for a list of counties). The total sample of 515 respondents yields a margin of error of ± 4.3% at the 95% level of confidence. (This means that in 95 out of 100 samples of this size, the results obtained in the sample would be within ± 4.3 percentage points of the results obtained had everyone in the population been interviewed. Totals may not add up to 100 due to rounding, multiple response questions, as well as don t know and refused responses are not included. *Since this study only included caregivers providing care for at least 6 hours per week, it should not be generalizable to the entire Tulsa community of caregivers. 3

4 Key Findings While AARP has typically focused on caregivers age 50 and older, there appears to be a great opportunity with caregivers age These caregivers appear to be more emotionally strained and interested in assistance. It may be that the multiple demands on time (e.g., family, work, caregiving) have particularly affected this group. Older caregivers spend more time per week; likely a result of spousal caregiving. They are also more likely to live with their care recipient. Interestingly, they are also the least likely to desire assistance or information. Outreach to older caregivers on the benefits of receiving help and attempting to break the barriers may be helpful in reaching this audience. One-third of caregivers in this study are caring for someone with dementia or another form of cognitive impairment. Studies have shown these caregivers to be more strained both emotionally and financially and would likely greatly benefit from assistance. 4

5 Key Findings While Oklahoma was the first state to pass the CARE Act, few caregivers are aware of the CARE Act. Many also indicate their loved one was not given an opportunity to designate a caregiver during a recent hospitalization. This suggests hospital compliance with the CARE Act is not at 100% and more communication with health care professionals is needed. Awareness of telehealth is also low; however, interest in using this technology is much higher. Interest is higher among caregivers in the age range. Caregivers are also more interested in using telehealth to manage their loved one s health compared to managing their own health. Interest in telehealth is higher among younger caregivers. Caregivers are interested in a wide variety of information/resources. The top areas are: financial information, information on where to find people or services to help in the community, dealing with depression/support groups/taking care of oneself, and transportation. 5

6 Key Findings Awareness of organizations in the community to help caregivers is low. About onequarter are currently aware but familiarity is somewhat low. It may be that caregivers are aware of the organizations, in general, but not well-versed with how these organizations can help caregivers. Not surprisingly, few caregivers have sought help. This may partially be due to awareness but also perceived need. When caregivers were asked why they have not sought help, one of the top reasons was I don t need help. Therefore, increasing awareness alone will not likely lead to action. It is important to address these barriers and educate caregivers on how resources/assistance can benefit them and their loved one. Another reason caregivers have not sought help is that they do not know where to turn. This presents an excellent opportunity to educate caregivers in the Tulsa area and direct them to community organizations. Family/friends and health care providers are the top places that caregivers would turn to for assistance. This suggests the power of word of mouth as a vehicle to promote caregiving efforts in the Tulsa community. 6

7 Caregiver and Care Recipient Profile: Among Caregivers in the Selected Tulsa Community 7

8 Slightly over half of Tulsa caregivers in this study are age 50+. About two in ten are millennials. Most care recipients are age 70+ ( age and 35% age 80+). However, two in ten are caring for someone under the age of 50. Caregiver age Care recipient age % % % % % % % % 10% 30% 40% 0% 10% 30% 40% S1. What is your age as of your last birthday? S6. How old is the person you are caring for? 8

9 As expected, most caregivers are caring for their parents. About two in ten are caring for spouses/partners. Most are providing care either due to aging or a long-term condition such as heart disease, diabetes, cancer, etc. More than one-third are caring for someone with dementia or some form of cognitive impairment. Relationship to recipient Reason for caregiving Parent/parent-in-law 42% Old age/aging 58% Spouse/partner 19% Long-term condition 52% Other family member Adult Child Grandparent 9% 8% 15% Most caregivers (85%) are caring for one person; however 15% are caring for two loved ones. Alzheimer's/dementia Emotional/mental health Short-term condition 32% 25% 35% Friend 6% Developmental disorder 16% 0% 40% 60% 80% 100% Q1. Who are you caring for? Q5. What is the main problem or illness our (Insert Q1 code) has for which you provide care or assistance? S5. How many people are you caring for? 0% 40% 60% 80% 100% 9

10 Caregivers in this community report spending a great deal of time caregiving and many have been caregiving for five years or more. Hours per week Length of time caregiving 6-10 hours 33% Less than a year 13% 1-2 years 31% hours 27% 3-4 years 22% 21+ hours 40% 5 years or more 34% 0% 50% 100% 0% 40% 60% 80% 100% Older caregivers are spending more time per week providing care than younger caregivers and have been providing care for longer periods of time. S8. About how many hours per week, on average, do you spend caring for or assisting this person? Q4. How long have you been providing this care/assistance? 10

11 About half of caregivers live with their care recipient but four in ten care recipients live in their own home. In your household 48% Their own home 40% Independent living/retirement community Someone else's home 4% 3% Nursing home 3% Assisted living 2% 0% 40% 60% 80% 100% Q6. Where does the person you care for live? 11

12 Almost all caregivers are handling instrumental activities of daily living (IADLs) such as transportation, household management, etc. However, almost six in ten (57%) are performing medical/nursing tasks as well (e.g., managing medications, monitoring vitals, doing wound care. etc.) 100% 96% 80% 60% 40% 49% 57% 0% IADLs ADLs Medical/Nursing Q7. Do you provide care for this person by handling personal care such as feeding, dressing, or bathing, getting them in and out of bed, or dealing with incontinence? Q8. Do you provide care for this person by handling tasks such as household cleaning, managing money, preparing meals, providing transportation, or communicating with health care providers? Q9. Do you provide care for this person by handling medical tasks such as doing wound care, tube feedings, operating medical equipment, monitoring blood pressure or blood sugar, or giving medications, pills, or injections? 12

13 Caregivers in this community are experiencing a fair amount of emotional strain. Four in ten rated their strain as either a 4 or 5 on a 5-point scale. On the other hand, three in ten report very little strain. 100% Women and those age report the highest level of emotional strain. 80% Caregiver strain on a 1-5 scale 60% 40% 31% 30% 40% 0% 1-2 (not stressful at all) (very stressful) Q11. Please tell me how emotionally stressful it is for you to care for your (Insert Q1 code) with 1 being not at all stressful and 5 being very stressful? 13

14 Caregivers understand their own health impacts the quality of the care they provide. However, only one-third believe this to be to a great extent. This presents an opportunity to educate caregivers that taking care of themselves is good for their loved one. 100% Extent to which their own health impacts caregiving 80% 60% 40% 33% 33% 18% 13% 0% To a great extent To some extent To a little extent To no extent at all Q10. To what extent do you think taking care of yourself impacts the quality of care you give to your loved one? 14

15 Caregivers would most often spend time with family, watch television/go to the movies, or relax provided they had an evening to themselves. Decompress with a good book Spend time with my kids Sit at home and watch television Go out to dinner with my wife Relaxing at home recharging Have a movie night with my husband and children Q34 (asked of every 5 th caregiver). If you had an evening to yourself where you did not have caregiving responsibilities, how would you most likely spend the evening? 15

16 More than half of caregivers have had to make modifications to their home or the home of their loved one to help keep them safe. The most common modifications are installing non-slip floor surfaces and a personal alert or home security system. Made a Home Modification? 45% No 55% Yes Non-slip floor surfaces A personal alert system A home security system An entrance without steps A bedroom on the main level A full bath on the main level Doorways that are wider than Lever-handled doorknobs Weatherization Easily usable climate controls A stair lift A garage or covered parking Electrical switches positioned Electrical outlets positioned slightly Type of Home Modification 19% 18% 17% 16% 15% 14% 12% 8% 5% 4% 4% 39% 0% 40% 60% 80% 100% Q12. Have you had to make any changes to your home (or the home of your loved one) to help keep your loved one safe or make it easier for them to get around? This may include replacing knobs with levers on doors, installing grab bars in the shower, adding a ramp or stair lift, etc.) Q12A. What specific modifications have you made? 16

17 CARE Act and Telehealth Awareness 17

18 Less than one-quarter of caregivers have heard of the CARE Act. Among them, roughly half (47%) are not familiar with the CARE Act, suggesting they may not be aware of the protections provided to them under this legislation. Heard of the CARE Act? 100% 80% Familiar with the CARE Act. 24% Yes 60% 53% 47% 40% 75% No 0% Familiar Not familiar Q16. Have you ever head of the Caregiver Advise, Record, and Enable Act, also known as the CARE Act? Q17. (If Q16=yes) How familiar are you with the CARE Act? 18

19 Just over half of caregivers say their loved one was hospitalized in the last 12 months. Among them, less than six in ten (58%) say their loved one was asked if they would like to designate a family caregiver. Required hospital admission? 49% No 51% Yes Given opportunity to designate a caregiver? 28% No 13% Not sure 58% Yes Among those designated as a family caregiver, 82% say they received discharge instruction on medical/nursing tasks. Q13. In the last 12 months, did your (Insert Q1) require admission to a hospital? Q14. Upon admission to the hospital, was your (Insert Q1) asked if they wish to designate you as a family caregiver in their medical records? Q15. Upon their discharge from the hospital, were you provided with instructions or live demonstrations of any medical tasks that you may need to perform for your loved one at home? 19

20 Less than three in ten caregivers have heard of the term telehealth. However, interest in using telehealth (when informed about what it is) is much higher. Interest is higher when it comes to managing the health of one s care recipient vs. their own health care. Heard of the term Telehealth? 100% 80% Interest in Telehealth For themselves For their care recipient 27% Yes 60% 40% 53% 58% 46% 42% 73% No 0% Interested Not interested Q18. Have you heard of the term telehealth or telemedicine? Q19. How interested are you in using technology in some of these ways for your own health care? Q20. How interested are you in using technology in some of these ways to help manage the health of your (Insert Q1). 20

21 Community Metrics 21

22 Less than three in ten caregivers are aware of resources or information available to help them in their community.) 100% 80% 60% 40% Seen, read, or heard about resources/information in the last 12 months 26% 68% 100% 80% 60% 40% Aware resources/organizations in community 28% 45% 27% Even among those who are aware, familiarity with these organizations is somewhat low (19% very familiar). 0% Yes No 0% Yes No Not sure Q21. In the last 12 months, have you seen, read, or heard about information or resources available in your community to assist you in taking care of your loved one or yourself in your role as a family caregiver. Q22. To the best of your knowledge, are there organizations or places in your community that provide information or assistance to help you in taking care of your loved one or yourself in your role as a family caregiver. Q23. How familiar are you with the organizations in your community that provide information or assistance in helping you care for your loved one? (among those aware) 22

23 In general, there is a moderate level of awareness of many of the community organizations in the. Tulsa area. However, fewer are aware of the resources/support they offer for caregivers. AARP Community Food Bank of AAA Oklahoma Alzheimer's Associatiom 211 Helpline Tulsa Life Senior Services OSU Cooperative Extension Rebuilding Tulsa Together Parish Nurses 8% Aware of caregiver resources/support 40% 33% 65% 59% 42% 52% 42% 42% 55% 35% 28% 25% 17% (Too small to look at awareness of caregiver resources) General awareness 84% 0% 40% 60% 80% 100% Q25. Have you ever heard of any of the following organizations in your community? 23

24 Interest in receiving information or assistance is especially high among those age % 80% 60% 40% 0% Total 56% 36% Somewhat Very Interested Interest is much higher among those age (75%) Total 43% 24% Not at all 19% Not too Not interested Q24. How interested are you in receiving information or assistance to help you in taking care of your loved one? 24

25 One-quarter of caregivers have sought help in their community. The most common reasons for not seeking help include: perceived need, not having the money, and not knowing where to turn. Ever sought help? 72% No 26% Yes I don t think I need help I don t have money I don t know where to go I don t have time I don t want help I think its too complicated I don t think it would be helpful I don t trust the organizations Reasons caregivers have not sought help 4% 11% 9% 13% 21% 19% 24% 49% This is more common for caregivers age % 40% 60% 80% 100% Q26. Have you ever sought help or assistance in your community to help you in taking care of your loved one? Q26A. Why have you not sought help? 25

26 Among the few caregivers who have sought help, most have turned to their family/friends or their health care providers. Friends/family Doctor/HCP Hospital/clinic City/County dept Church 211 Helpline Tulsa Life Senior Services AARP Alzheimer's Assocation Library Hospice Community Food Bank of Tulsa Area Agency on Aging Employer Parish Nurses Rebuilding Tulsa Together OSU Extension 22% 19% 18% 18% 15% 13% 12% 12% 9% 7% 4% 2% 2% 2% Where have you sought help? 50% 44% 38% Top 3 sources Among those who sought help, almost all felt it was helpful (54% very helpful/36% somewhat helpful). 0% 40% 60% 80% 100% Q27. Where or with whom have you sought help or information in your community? Q28. How helpful was this information or assistance? 26

27 Just under half of caregivers who have not sought help in their community say they are likely to do so in the future. This suggests the importance of communicating with caregivers that help is available and how it may benefit them. 100% 80% 60% Total 48% Total 49% 40% 0% 37% Somewhat 11% Very Likely 17% Not at all 32% Not too likely Not likely Q30. How likely are you to look for information or assistance in your community to help you take care of your loved one or yourself in your role as a family caregiver? (among those who have not sought help) 27

28 Caregivers are interested in a wide variety of information with the top being financial information, where to find help in the community, and dealing with depression. Financial information Community assistance Dealing with depression Transportation Taking care of yourself Support groups Work, Family, Caregiving balance Information on safety Legal information Respite Adult day services Care provider locator Tips on improving communication with loved one Tips on medication management Hands-on training An 800# hotline Alzheimer's disease information End-of-life information Housing Type of information 13% 18% 16% 31% 29% 29% 27% 27% 26% 25% 24% 24% 24% 23% 23% 23% 21% 21% 21% Q32. What type of information or assistance would be helpful to you? 0% 5% 10% 15% 25% 30% 35% 28

29 The most preferred format for receiving information is via written materials. This is followed by online information. A lesser percentage are interested in group presentations or TV/radio sessions. Written materials Online Format preference 37% 58% Older caregivers are more interested in written material and phone conversations. One-on-one meetings 26% Telephone conversations Social media Group presentations 24% 23% 17% Younger caregivers are more interested in online information and social media. TV or radio sessions 12% 0% 40% 60% 80% 100% Q33. How would you prefer to receive this type of information or assistance? Would you prefer it via? 29

30 Appendix: Counties Included in the Tulsa Community 30

31 List of Counties County Tulsa Rogers Muskogee Creek Washington Wagoner Okmulgee Osage 31