Thesis

(1)

BACKGROUND: With a growing number of Veterans suffering from war-traumas from

conflicts that began after 9/11, there is an increasing population of informal caregivers caring for them. These caregivers of Veterans are more at-risk to caregiver burden due to the high level of care the Veterans require. Many caregivers have had to leave the workforce as a consequence of the care the Veterans may require, which can increase caregivers’ level of financial strain. Financial strain is a component of caregiver burden that can be further studied to find strategies, like improving financial literacy, to reduce it. It would be especially helpful to examine if caregivers of this population had differing levels of financial strain or financial literacy based on their age; this could provide guidance on interventions that could effectively address financial strain levels in caregivers of all ages.

METHODS: A mixed methods approach was used to assess if there were differences in how older versus younger caregivers of Veterans who have served since 9/11 dealt with financial strain and financial literacy. Data was collected using semi-structured interviews involving 38 caregivers (separated by age) of Veterans who have served since 9/11.

FINDINGS: Data analysis revealed that there were no significant differences between the caregiver age and financial strain or financial literacy. However, the paper reports on the importance of educating caregivers on the importance of long-term planning, especially for caregivers who have had to leave the workforce to be a full-time caregiver.

CONCLUSION: There are serious long-term implications of caregivers who are leaving the workforce at younger ages to care for the Veterans. Education, tools, and further policies need to be implemented to further help this group of vulnerable caregivers in their long-term financial well-being.

(2)

(3)

II. LITERATURE REVIEW

Caregiving and Caregiver Burden

Informal caregivers, often family and friends, can play a critical role in the lives of loved ones who are unable to fully care for themselves. When a person requires extensive assistance within the US, the responsibility often falls on informal caregivers to provide physical,

emotional, social, and financial help.20_{An informal caregiver is defined as a person 18 years or} older who traditionally provides unpaid care to a relative or friend that is unable to completely take care of his or herself.21_{They help care recipients with ADLs and Instrumental Activities of} Daily Living (IADLs). ADLs include: bathing; dressing; going to the toilet; transferring (moving in/out of chairs, etc.); continence; and feeding.22_{IADLs include: using the telephone; shopping;} food preparation; housekeeping; laundry; transportation; taking medication; and handling personal finances.23_{The majority of caregivers assist recipients with at least one ADL (59%),}24 and 99% of caregivers assist with at least one IADL.25_{AARP estimates 40 million Americans –} over 10% of the US population – are informal caregivers.26_{Collectively, they provide 370} billion hours of care for their family member or friend.27_{The average caregiver provides 18} hours of care to the recipient per week, and 33% of caregivers are averaging more than 21 hours of care per week.28

The substantial amount of time that caregivers spend on the care recipient can take away from their personal well-being, which can lead to caregiver burden.29_{Caregiver burden is the} “extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.”30_{Caregiver burden can result in poorer} health outcomes, such as a higher risk of mortality, weight loss, low self-care behaviors, sleep deprivation, and depression.31, 32,33_{Furthermore, high levels of burden can cause caregivers to}

(4)

have poorer job performance and suffer in their relationships with other family members and friends. 34,35_{Risk factors for caregiver burden are displayed in Table 1.}

Table 1: Risk Factors of Caregivers and Impact on Caregiver Burden

Risk Factor Impact on Caregiver Burden

Age Younger caregivers are susceptible to higher caregiver burden when compared to older caregivers.36,37

Gender Women are more likely to be caregivers, spend more hours caregiving and _{be the main caregiver when compared to a male caregiver.}38_{However, male} caregivers are more likely to be stressed by long hours of caregiving.39

Race and Ethnicity

White caregivers report higher levels of stress, depression, and burden when compared to non-White caregivers; Hispanic and Black cultures have a greater cultural sense of familial responsibility that reduces their risk to caregiver burden.40,41

Education Caregivers with lower levels of education are more at-risk to higher levels of caregiver burden.42

Income Lower income and reduced access to finances is linked to higher caregiver burden.43

Relationship to

Care Recipient Generally, caregivers of parents report more burden than spouses of care recipients, but studies have inconsistent findings.44

(Lack of) choice in caregiving

Perceived lack of choice in caregiving leads to higher levels of caregiver burden. It occurs more in spouses than adult children.45

Hours spent caregiving

Caregivers who spend more hours caregiving are more likely to have higher levels of caregiver burden.46

Cohabitation with care

Caregivers who cohabitate with the recipient (common in spouses of the care recipient) have a higher level of burden.47

(5)

recipient

Financial strain Caregivers, especially spouses, report higher levels of financial hardship _{and the ability to make ends meet.}48

As seen in Table 1, financial strain is one factor that contributes to caregiver burden.49 Financial strain can result from (1) the costs of providing caregiving services; (2) under-employment (reducing paid work as a result of caregiving); (3) ununder-employment (leaving the workforce to care for the recipient); or (4) having a low income.50_{There is limited research on} both the extent of financial strain that caregivers face and strategies that can reduce financial strain (which may alleviate overall caregiver burden).51

Caregivers’ financial literacy is a modifiable factor with the potential to reduce financial strain. Financial literacy is the “ability to analyze costs, risk, and consequences of particular financial services, products, and decisions… make effective choices and recover from poor ones…know where to go for help… [and] to take other actions to improve present and long-term financial well-being in an evolving financial landscape.”52, p.22 _{Lower financial literacy is}

associated with poor economic outcomes, such as debt accumulation and high-cost borrowing.53 Improving financial literacy of caregivers could potentially improve their economic outcomes and reduce financial strain. This reduction in financial strain could lead to lower levels of caregiver burden.

Caregiver Burden among Caregivers of Veterans

While all caregivers face challenges, some caregiver populations may be more vulnerable to poorer health outcomes and lower quality of life. One such group is caregivers of Veterans who receive care from Veteran Affairs Medical Centers (VAMCs). This is an important group in

(6)

which to understand caregiver burden because Veterans: (1) are a large and growing group; (2) are often medically and socioeconomically vulnerable, making caregiving more complex; and (3) have health care needs that are the responsibility of the US.54

There are currently 22 million Veterans in the US,55_{and the number continues to grow as} Veterans return from OEF/OIF/OND. 56_{With the growing number of Veterans, there is an} increasing demand for informal caregiving. Currently, there are 5.5 million informal caregivers in the US that help with the ADLs, IADLs, and general supervision of Veterans.57, 58_These caregivers face many of the same challenges as civilian caregivers, but are susceptible to higher caregiver burden.59

Caregivers of Veterans have some risk factors that are similar to those that civilian caregivers face, while others are distinctive to caregivers of Veterans. Factors that impact caregivers of both Veterans and civilians include the type of relationship to the care recipient; education level; hours spent caregiving; and cohabitation with the care recipient.60_However, caregivers of Veterans are at greater risk for caregiver burden. This may, in part, be because Veterans are more medically vulnerable.61_{An estimated 3.8 million Veterans have a} service-connected disability that impacts their daily lives, such as an amputated limb, TBI, or PTSD.62 Due to these complex medical cases, caregivers of Veterans are taking on more duties to help Veterans. Additionally, caregivers of Veterans have a higher prevalence of some risk factors; this includes age of the caregiver; relationship with the Veteran; cohabitation with the Veteran; and financial strain.63

Caregivers of Veterans who served during OEF/OIF/OND are at even greater risk of burden than other caregivers of Veterans.64_{The large number of Veterans returning home from} these conflicts is younger and faces a unique set of challenges that complicate caregiving in

(7)

large part because many of these Veterans return with TBI, PTSD, amputations and other

injuries. 65, 66_{Furthermore, these caregivers provide care to their Veterans for a longer duration of} time than civilian caregivers and caregivers of Veterans who served before 9/11 because their care recipients are younger.67_{Many are spouses and spend more than 20 hours per week}

providing care. Additionally, they report higher levels of financial strain.68_{This could be due to} lower levels of financial literacy or other barriers to improving finances. These risk factors leave caregivers more susceptible to higher levels of caregiver burden.

The US is also responsible for providing health care to eligible Veterans, including those with service-connected disabilities that are complex and costly. Amputated limbs, TBI and PTSD are conditions covered by VAMCs. Additionally, Veterans who meet income eligibility criteria are also guaranteed VA care.69_{Thus, those that qualify to receive care at VAMCs are} even more medically and socioeconomically vulnerable than other Veterans.70

The VA Program of Comprehensive Assistance for Family Caregivers

In 2010, the US passed the Caregivers and Veterans Omnibus Health Service Act to help Veterans returning home from OEF/OIF/OND. The Act was enacted to help Veterans stay within the community by providing support to their caregivers.71_{The Program of Comprehensive} Assistance for Family Caregivers (Comprehensive Program) was formed under the Act to help caregivers of Veterans get the tools, resources, and support they need to provide exemplary care to the Veteran and maintain a high quality of life for themselves.72_{The Comprehensive Program} also provides a financial stipend based on the number of hours spent caregiving each week to qualified primary caregivers of the Veterans. Veterans have to meet certain qualifications for the caregiver to receive the stipend. The criteria is as follows: the Veteran (1) suffers from a serious

(8)

injury; (2) is in need of personal care with one or more IADLS or ADLS; and (3) receives healthcare from the VA.73

The VA CARES Team at the Durham VAMC is funded to evaluate the Comprehensive Program and identify what services are working well and what can be improved. One component of the Comprehensive Program that can be improved is making resources available to help reduce caregivers’ financial strain. Research is needed to compare the experiences of younger and older caregivers who care for Veterans who served in OEF/OIF/OND. To narrow the scope of experiences examined, research should examine the financial literacy and financial strain of caregivers who are also fiduciaries. A fiduciary is a person who is legally obligated to act only in the principal, or care recipient’s, best interests.74_{The number of caregivers who are fiduciaries of} Veterans is increasing as Veterans serving during OEF/OIF/OND return home. Fiduciaries are more vulnerable to financial strain than other caregivers of Veterans due to their high level of involvement in the Veteran’s care, including the management of their finances.75_{By conducting} research that examines the experiences of fiduciary caregivers based on age, recommendations to reduce financial strain can be used to more effectively address the needs of all caregivers of

(9)

(10)

IV. RESULTS

Demographics, Frequency, and Bivariate Analysis

Of the 120 caregivers sent recruitment letter, 99 were contacted for interviews: 18 phone numbers were invalid, 42 caregivers did not answer the phone or refused the interview, and 2 interviews were incomplete due to extraneous circumstances. There were 37 completed

interviews: 18 caregivers were younger than 50, and 19 were 50 and older. Table 2 contains the caregiver characteristics of the sample. The gender, education, number of hours spent caregiving, and cohabitation with the caregiver were similar between the two groups; however, younger caregivers had higher incomes, were more likely to be a spouse, and more likely to have

dependents within the house. The race of the caregivers cannot be accurately assessed since five caregivers identified as “American” instead of a traditional race.

Table 2: Caregiver Characteristics of Sample of 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Younger Caregivers of Veterans (n=18)

Older Caregivers of Veterans (n=19)

Category % or x +/- D % or x +/- D

Age 40.3 +/- 6.3 59.8 +/- 8.1

Gender (% female) 94.4 84.2

Race

Black 16.7 26.3

White 61.1 36.8

Other 22.2 36.8

Education

High School Graduate/GED 22.2 21.1

Some College 38.9 47.4

Associate Degree or Higher 38.9 31.6

Income

(11)

Less than 30,000 11.1 10.5

30,000-49,000 16.7 31.6

50,000 or more 55.6 36.8

Prefer not to answer 16.7 21.1

Number of hours spent

caregiving 128.7 +/- 53.2 129.6 +/- 55.67

Relationship to Veteran

Parent 16.7 52.6

Wife 72.2 42.1

Other Family Member 11.1 5.3

Cohabitation with Veteran (Yes)

94.0 89.5

Dependents within the house

(Yes) 50.0 16.0

Caregiver age was not associated with level of education (78% of younger caregivers and 79% of older caregivers had an education above high school, p=0.86). Younger caregivers more often had household incomes over $50,000 (56% versus 37%), but this was not statistically significant (p=.24). Younger caregivers were: more often the wives of the Veterans (72% versus 42%, p=.07) and more likely to have dependents in the house (50% versus 16%, p=.03).

Financial Strain in Caregivers

As shown in Table 3, the difference in the average CRA score of younger and older caregivers was not statistically significant.

Table 3: Financial Strain and Caregiver Age of Sample of 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Younger Caregivers of Veterans (n=18)

x

Older Caregivers of Veterans (n=19)

x

p-value

Financial strain 9.4 9.6 .71

(12)

However, the validated financial strain measurement has three questions; the first two ask about the amount of finances needed to pay for the needs of the Veterans. Both groups of caregivers stated that the Veterans received their own money from the VA for their caregiving and other needs and, therefore, are not financially stressed by taking care of the Veterans’ needs. The third question asks if “caring for the Veteran puts a financial strain on the [caregiver].”80_The responses to this question differed between the two groups. Older caregivers were more likely to report lower levels of financial strain occurring, while younger caregivers reported this feeling occurring more frequently.

Table 4: Financial Strain Score of 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Younger Caregivers of

Veterans x Older Caregivers of Veteransx Financial Strain Question

My financial resources are adequate to pay for the things that are required for

caregiving.

3.83 4.1

It is difficult to pay for the things my

Veteran needs. 3.61 3.79

Caring for my Veteran puts a financial

strain on me. 2.18 1.52

Financial Literacy in Caregivers

The mean financial literacy test results for each individual question are displayed in Table 4. Older caregivers feel more (Table 5): in control of their financial situation (94.7% versus 88.9); financially well informed when making a large purchase (88.9% versus 76.5%); more likely to have a long-term financial plan (72.2% versus 66.7%); and more likely to borrow money (46.7% versus 61.1%). Younger caregivers were more likely to have a short-term

financial plan (83.3% versus 77.8%).

(13)

Table 5: Financial Literacy Scores of Sample of 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Veterans (n=18) Older Caregivers of Veterans(n=19)

Question % Yes % Yes

1. I am in control of my financial situation.

88.9 94.7

2. I could manage for a period of time if

I had a major loss of income. 38.9 36.8

3. I feel financially well informed when

I make a large purchase.1 76.5 88.9

4. I review my household

checking/debit account transactions monthly.

100.0 100.0

5. I have a short-term plan. _83.3 _77.8

6. I have a long-term plan. _66.7 _72.2

7. I try to save on a regular basis if I

possibly can. 88.9 88.9

8. I appropriately minimize the fees on

my credit card.2 93.3 100.0

9. I have made all my payments for loans, mortgages, credit cards, and other types of payments in the last 12 months.

88.9 88.9

10. I have not needed to borrow money

in the last 12 months. 61.1 46.7

Even though some individual scores of the questions differed between the two caregiver groups, overall financial literacy scores for younger and older caregivers (Table 6) were not statistically significant.

1_{Statements 1, 2, and 3 were defined as “yes” if caregiver answered “often” or “always.”}

2_{Caregivers were defined as “yes” if they answered that they 1) paid off monthly credit card balance in full; 2)}

ensured monthly minimum payments were made; or 3) didn’t exceed limit on credit card.

(14)

Regression to Assess Financial Strain and Financial Literacy of Caregivers

No regressions were run to control for potential confounders in determining the relationship between caregiver age and financial strain or financial literacy due to the non-significant t-tests (which may be due to the small sample size).

Qualitative Results: Analysis of Open-Ended Caregiver Survey Questions

Sources of Financial Information: Caregivers of both age groups use similar sources for financial information. Half of all caregivers utilize the Internet to inform their financial

decisions. While most caregivers used general search engines to find information, three younger caregivers identified Consumer Reports as an important source of their information. Both groups of caregivers used resources similarly such as banks and/or a financial advisors, family and friends, and personal experience to make financial decisions. Younger caregivers relied more on paper resources to make a decision; this included newspapers and coupons. Some caregivers identified more than one source they used to find financial information. Table 7 has the key word counts of each caregiver group.

Table 6: Financial Literacy and Caregiver Age of Sample of 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Younger Caregivers of Veterans (n=18)

%

Older Caregivers of Veterans (n=19)

%

p-value

Financial literacy ₇₉_.2 _77.7 .81

(15)

Barriers to Financial Information: While the majority of caregivers stated they did not have trouble finding financial information, two identified significant barriers: 1) internet resources can be hard to understand and 2) there is little information on saving for retirement or how to earn money if a fulltime caregiver.

Topics of Financial Interest: Many caregivers stated they did not need further information. For those that did answer, information on retirement and savings was the most requested by both groups of caregivers. Additionally, caregivers wanted information on investment and stock markets (3); budgeting (3); improving credit (2); and interest rates (1). Table 8 has the topics caregivers identified as areas of financial interest separated by age.

Table 7: Sources of Financial Resources for 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Sources of Financial Resource Key Word n n

Online/Internet 9 8

Bank/Financial Advisor 9 8

Family/Friends 5 4

Paper Resources 5 1

Personal Experience 2 3

Consumer Reports 3 0

Table 8: Topics of Financial Interest for 37 Caregivers of Veterans who are Fiduciaries within the Comprehensive Program in the VA

Sources of Financial Resource Key Word n n

Retirement/Savings ₄ ₄

Investment and Stock Markets ₁ ₂

Budgeting ₁ ₂

Improving Credit ₂ ₀

Interest Rates ₀ ₁

(16)

When asked for open-ended feedback on caregiving experiences with finances, several themes came up. The first theme is that caregivers are facing financial strain when caring for the Veterans despite receiving caregiver stipends. This is exemplified by the following quotes:

(1) “I mean we are grateful for even getting a monthly stipend, but in the long-run it

averages out to not even minimum wage honestly... we are still staying at home and

caring for our Veteran and we are lucky enough to do that, but we are basically living

day to day.” (Younger Caregiver)

(2)

“I do have financial strain because I cannot get a job because I am caring for (the

Veteran)… My financials are not good because I cannot go out there and get another

job.”(Older Caregiver)

The second theme throughout the interviews was that the inability for caregivers to work did impact the financial strain of the caregivers. The previous two quotes touched on this, and the following two quotes also demonstrate this theme.

(1) “It's so hard to be able to find a job where you can take time off to take (the Veteran) to

appointments or be with (the Veteran) if they need you. I'm constantly looking for better

jobs, but it's just impossible… I'm lucky if I work two days a week sometimes.”(Younger

Caregiver)

(2) “It makes it difficult to get another job because I have to tell them I'm a caregiver and I

have to have times off to take (the Veteran) to the doctor and whatnot. It makes it hard to

get a job, which drives me nuts because I've been working since 13 years old. Not having

a job to get up and go to every day drives me nuts.” (Older Caregiver)

The final theme was the commonality of the concern for caregiver retirement and savings. Both groups of caregivers voiced apprehension over saving for retirement and their ability to put

(17)

money away while managing the costs of daily living. The following quotes highlight the concern and perceived inability to start saving for the future.

(1) “(The Veteran) just gets a little chunk of change each month, and I do too, but neither of

us have a pension or a 401K or anything like that, so you live day to day.”(Younger

Caregiver)

(2) “We are just trying to save a little bit every month, and some months we make it and

some months I have to go back and use the savings.”(Older Caregiver)

(3) “It's not like I haven't gone back and tried to find something that will help us long-term, I just haven't been able to find (something helpful).” (Older Caregiver)

(18)

(19)

While both of the hypotheses were rejected, important lessons about caregiving age, financial strain, and financial literacy can still be gleaned. A significant takeaway is that despite the support, stipend, and resources of the Comprehensive Program, these caregivers of Veterans are still facing high levels of financial strain. This has even wider implications for the wellbeing of civilian caregivers and caregivers of Veterans who served before 9/11 and are not supported by such a program. Caregivers are a population at risk to numerous poor outcomes, even if they have an intense amount of support. Policies, programs, and other methods of support should be further developed to help caregivers manage their responsibilities. These findings suggest several recommendations that can improve services to help support caregivers:

1. Education or other resources would be useful to help caregivers with retirement plans. While some caregivers were able to identify saving for retirement as an issue, there were many that were not even thinking about retirement and living only “day by day.”

2. Younger caregivers should be especially targeted with education about the importance of saving. While younger caregivers recognize the importance of it, some cannot save because they do not have enough money. Education on budgeting could help caregivers find ways to better allocate and save money.

3. Many caregivers used the Internet for information about financial decisions. Compiling a list of trusted, easy-to-understand websites would help consumers with their financial options.

(20)

(21)

the Comprehensive Program. One aspect of that evaluation is learning more about the financial challenges Caregivers of Veterans face when providing care for their Veterans. You will receive a phone call in January or February 2015 from Katie Cavagnini, a member of our team, to talk to you about challenges you may be facing.

Talking to us about your experiences is critical to our finding ways to help you ease the stresses of caregiving. The phone call will take about 30-35 minutes to complete. Participation is

completely voluntary. Choosing not to participate will not affect any benefits you or the Veteran receives. All responses are confidential. Only approved members on the VA-CARES team will access the answers you provide. Your identity and information will not be shared with the Comprehensive Program.

Your answers will provide us with important information that will strengthen the current program for Caregivers, Veterans, and their families. If you are not interested in the survey, you may leave a message at (919) 286-0411, extension 4086 and we will not contact you. Should you have any comments or questions, please call us at (919) 286-0411, x4086.

Thank you very much for your time and cooperation. Your feedback is greatly appreciated and valued.

Sincerely,

Courtney Van Houtven, PhD Project Director

VA CARES

Health Services Research, Durham VA NC

Interview Guide

Script for Permission to Record

(22)

“Hi. My name is Katie Cavagnini with the VA Comprehensive Program Evaluation Center. How are you doing today? [Response] I am calling you to learn more about financial challenges participants in the Comprehensive Program, such as yourself, face. We mailed letters to caregivers describing this project. Do you recall receiving this letter?”

If YES: Are you interested in participating in this project? [Response: If NO, proceed to “NO” below]. Do you have time to talk to me right now for about 20-30 minutes? If you would prefer another time, we can also set that up.

IF YES, Continue.

If NO: Thank you for your time.

If NO: I’m sorry you didn’t receive the letter. The letter talked about the interest of the Comprehensive Program to learn more about your financial experiences as a caregiver. Would you be interested in participating in this project? [Response: If NO, proceed to “NO” below]. Do you have time to talk to me right now? If you would prefer another time, we can also set that up.

IF YES, Continue.

If NO: Thank you for your time.

As I mentioned, I would like to talk to you so that we can learn more about your role as a caregiver. As you answer my questions, please remember that there are no right or wrong answers. The most helpful thing for us is for you to give us honest answers about your experiences. If there are any questions you prefer not to answer, just let me know so that I can skip them.

To be sure that I accurately capture what you say, I would like to record this conversation. This recording will be kept confidential and no one other than the VA-CARES evaluation team will listen to it. The tapes will not be shared with anyone from the Comprehensive Program. Is it okay if I record this conversation?

If YES, then “[Insert name of caregiver] has given me permission on [DATE] at [TIME].

In NO, then stop recording and proceed with the interview.

(23)

If NO, then use term “the Veteran.”

Let me begin by first asking you some questions about yourself. Remember, this survey is confidential and will only be seen by members of the VA Cares team.

1. How are you related to the Veteran?

 Husband

 Wife

 Significant other

 Mother  Father  Son  Daughter  Sister  Brother  Daughter-in-Law

 Other relative (please specify) ______________

2. Do you live with the Veteran?

 No

 Yes

3. Did the Veteran serve during or after Operation Enduring Freedom?

 No

 Yes

4. What is your date of birth?

_____________________________________________ 5. What is your gender?

 Male

 Female

6. Do you consider yourself Hispanic or Latino?

 No

 Yes

7. With which racial categories do you identify? Check all that apply.

 American Indian or Alaska Native

 Asian

 Black or African American

 Native Hawaiian or Other Pacific Islander

 White

 Other 8. What is the highest level of education that you have completed?

 Grade school/junior high

 Some high school

 High school graduate

 GED

(24)

9. How many persons are in your household? Your household is defined as the number of people within your house you consider when completing your taxes.

10. How many children in your household are under age 18? 11. How many children in your household are 18 or older?

12. How many hours per week do you spend caregiving? This includes tasks like helping the Veteran get dressed, helping the Veteran with their personal hygiene routine, or necessary supervision of the Veteran.

a. 10 hours or less b. 10-20 hours c. 20-30 hours d. 30-40 hours

(25)

The following is a list of statements that reflect how people sometimes feel when taking care of the Veteran. After each statement, indicate how often you feel that way. There are no right or wrong answers.

How often do you feel… Never Rare Sometimes Often Always Prefer not to answer

13.

That because of the time you spend with the Veteran that you don’t have enough time for yourself?

1 2 3 4 5 999

14.

Stressed between caring for the Veteran and trying to meet other

responsibilities (work/family)?

1 2 3 4 5 999

15.

Angry when you are

around the Veteran? 1 2 3 4 5 999

16.

That the Veteran currently affects your relationship with family members or friends in a negative way?

1 2 3 4 5 999

17.

Strained when you are

around the Veteran? 1 2 3 4 5 999

18.

That your health has suffered because of your involvement with the Veteran?

1 2 3 4 5 999

How often do you feel… Never Rare Sometimes Often Always Prefer not to answer

19.

That you don’t have as much privacy as you would like because of the

Veteran?

1 2 3 4 5 999

20.

That your social life has suffered because you are caring for the Veteran?

(26)

Veteran’s illness/health problems?

22.

Uncertain about what to do

about the Veteran? 1 2 3 4 5 999

23.

You should be doing more

for the Veteran? 1 2 3 4 5 999

24.

You could do a better job in

caring for the Veteran? 1 2 3 4 5 999

(27)

Some caregivers say that despite the challenges of caring for a loved one, they have positive feelings about caring for that loved one. I’m going to read some statements about these feelings. When I do, please think about how you feel now compared to how you felt before enrolling in the Comprehensive program. That is, please tell me whether your feelings now have increased, decreased, or stayed about the same compared to those feelings before you joined the program. Please remember, there are no right or wrong answers.

26. Are there any other positive experiences that you have had as a caregiver? Providing help to (Veteran)

has… IncreasedFeelings DecreasedFeelings the sameStayed Prefer not toanswer

1. Made me feel more useful. 1 2 3 999

2. Made me feel better about _myself. 1 2 3 999

3. Made me feel more needed. 1 2 3 999

4. Made me feel more _appreciated. 1 2 3 999

5. Made me feel more _important. 1 2 3 999

6. Made me feel stronger & _{more confident.} 1 2 3 999

7. Enabled me to appreciate life _more. 1 2 3 999

8. Enabled me to develop a more positive attitude toward life.

1 2 3 999

9. Strengthened my relationships with others more.

(28)

As before, please tell me whether your feelings have increased, decreased, or stayed the same since you joined the program.

27. A

re there any other feelings you have as the caregiver of a Veteran that you would like to share?

28. In what ways has the Comprehensive Program changed your relationship with the Veteran?

PROMPTS: relationship satisfaction, relationships with other family members (esp. children), problem-solving skills, improved communication, ability to manage stress etc.

I would now like to talk with you about the financial impact of being a caregiver. Increased Decreased

Stayed the same

Prefer not to answer

10. I enjoy being with my Veteran. 1 2 3 999

11. Helping my Veteran has made me_{feel closer to him/her.} 1 2 3 999

12. Nothing I do seems to please my _Veteran. 1 2 3 999

13. I am angry when I am around my _Veteran. 1 2 3 999

14. My Veteran’s pleasure over some _{little thing gives me pleasure.} 1 2 3 999

15.

My Veteran shows real appreciation for what I do for

him/her. 1 2 3 999

16. My Veteran needs more help than_{the things I do for him/her.} 1 2 3 999

17. I am pretty good at figuring out _{what my Veteran needs.} 1 2 3 999

18. It makes me happy to know that my Veteran is being cared for by family.

1 2 3 999

19. The things I do for my Veteran _{keep him/her from getting worse.} 1 2 3 999

20.

The knowledge that I am doing my best gets me through the

(29)

it happens never, rarely, sometimes, often, or always. Please remember, there are no right or wrong answers.

How much of the time do you think the statements are accurate for you?

Never Rare Sometimes Often Always Prefer not_{to answer}

21.

My financial resources are adequate to pay for things that are required for caregiving.

1 2 3 4 5 999

22. It is difficult to pay for the _{things my Veteran needs.} 1 2 3 4 5 999

23. Caring for my Veteran puts a financial strain on me.

1 2 3 4 5 999

24. I am satisfied with my current financial situation

today. 1 2 3 4 5 999

25.

The Veteran is in good shape financially. He/she is able to save and plan for the future.

(30)

Once again, for each statement, please answer if it happens never, rarely, sometimes, often, or always.

How much of the time do you think the statements are accurate for you?

Never Rarely Sometimes Often Always Prefernot to answer

26. I am in control of my _{current financial situation.} 1 2 3 4 5 999

27. I can make a difference in _{my financial situation.} 1 2 3 4 5 999

28. I could manage for a period of time if I had a major loss of income.

1 2 3 4 5 999

29. I feel financially well informed when I make a large purchase.

(31)

This time, I want you to think about how things have changed for you since enrolling in the Comprehensive Program. That is, for each question, please let me know whether your situation has improved, stayed the same, or worsened since you started the program.

Improved Worsened _{No change} _{Prefer not to} answer

30.

My personal financial situation has changed since I enrolled in the

Comprehensive Program.

1 2 3 999

31.

My satisfaction with my current financial state has changed since I enrolled in the Comprehensive Program.

(32)

29. Do you review your household checking/debit account transactions monthly?

 Yes

 No

 Sometimes

 Prefer not to answer.

30. Do you have a short-term financial plan?

 Yes

 No

31. Do you have a long-term financial plan?

 Yes

 No

32. Which one of the following statements best applies to you? a. I try to save on a regular basis if I possibly can.

b. I save only when I want to save up for something big or special.

c. There's no point in trying to save because there's never enough money. d. Saving is not something I need to do.

e. Prefer not to answer. 33. Do you have a credit card?

 Yes

 No

 Prefer not to answer

34. IF YES: How do you minimize the fees on your credit card? a. Pay off the monthly credit card balance in full.

b. Ensure minimum monthly payments are made on the credit card. c. Don’t exceed limit on credit card.

d. I don’t do anything. e. Other ________.

f. Prefer not to answer. g. Not applicable.

35. At any time in the last 12 months have you NOT been able to make a repayment on any loans, mortgages, credit cards or any other types of repayments that you have?

 Yes  No

(33)

PROMPTS/CATEGORIES: Unplanned emergency, loss of income, lack of funds, interest rates

37. If you have needed to borrow money in the last 12 months for any purpose which of the following have you used? Select all that apply.

a. Have not needed to borrow money b. Bank, building society, or credit union c. Family/friends

d. Store loan/retailer finance e. Finance company

f. Cash advance on salary g. Pawn broker

h. Payday lender i. None of the above

38. Where do you get most of your financial information?

PROMPTS: Newspaper/magazines, Internet, government help, friends/family 39. If you have not sought out financial information, could you tell us why?

PROMPTS: No time, don’t need it, didn’t know where to get

40. Do you feel you need further education or information in relation to finance?

 Yes

 No

41. If yes What finance topics would you like more information on?

PROMPTS: Budgeting, managing debt, consumers’ rights and responsibilities 42. Have you faced challenges when seeking education or information about finances?

(34)

43. Which of the following categories best describes your individual total annual income before taxes or any other deductions last year? Please include income from all sources such as salaries and wages, military benefits, Social Security, retirement income, investments, rental income, child support, alimony, and other sources. The Caregiver stipend should not be included in this amount because it is not taxable income.

Less than $10,000

$10,000 - $19,999

$20,000 - $29,999

$30,000 - $39,999

 $40,000 - $49,999

 $50,000 - $59,999

 $60,000 - $79,999

 $80,000 or more

44. Which of the following categories best describes your household's total annual income before taxes or any other deductions last year? Please include income from all sources such as salaries and wages, military benefits, Social Security, retirement income, investments, rental income, child support, alimony, and other sources. The Caregiver stipend should not be included in this amount because it is not taxable income

Less than $10,000

$10,000 - $19,999

$20,000 - $29,999

$30,000 - $39,999

 $40,000 - $49,999

 $50,000 - $59,999

 $60,000 - $79,999

 $80,000 or more

(35)

(36)

AARP. (2015, July). Valuing the Invaluable: 2015 Update. Retrieved from: http://www.aarp.org/ppi/info-2015/ valuing-the-invaluable-2015-update.html

22_{Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. A., & Jaffe, M. W. (1963). Studies of illness in the aged: the} index of ADL: a standardized measure of biological and psychosocial function. Jama, 185(12), 914-919.

23_{Katz, S. (1983). Assessing self}_‐_{maintenance: activities of daily living, mobility, and instrumental activities of daily} living. Journal of the American Geriatrics Society, 31(12), 721-727.

24_{National Alliance for Caregiving & AARP. (2009). Caregiving in the US. Retrieved from:} http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.

25_{National Alliance for Caregiving & AARP. (2009). Caregiving in the US. Retrieved from:} http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf

26_{AARP. (2015, July). Valuing the Invaluable: 2015 Update. Retrieved from:}_{http://www.aarp.org}_{/ppi/info-2015/}

valuing-the-invaluable-2015-update.html

29_{Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: a clinical} review. JAMA, 311(10), 1052-1060.

30_{Zarit S.H. et al. (1986). Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist,}

26(3), 260-266.

31_{Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects} study. Jama, 282(23), 2215-2219.

32_{Hoffman, G. J., Lee, J., & Mendez-Luck, C. A. (2012). Health behaviors among baby boomer informal} caregivers. The Gerontologist, 52(2), 219-230.

33_{Gallagher, D., Rose, J., Rivera, P., Lovett, S., & Thompson, L. W. (1989). Prevalence of depression in family} caregivers. The Gerontologist, 29(4), 449-456.

35_{Rodakowski, J., Skidmore, E. R., Rogers, J. C., & Schulz, R. (2012). Role of social support in predicting caregiver} burden. Archives of physical medicine and rehabilitation, 93(12), 2229-2236.

36_{Carter, J. H., Lyons, K. S., Stewart, B. J., Archbold, P. G., & Scobee, R. (2010). Does age make a difference in}

caregiver strain? Comparison of young versus older caregivers in early‐stage Parkinson's disease. Movement Disorders,

25(6), 724-730.

37_{Goldstein, N. E., Concato, J., Fried, T. R., & Kasl, S. V. (2004). Factors associated with caregiver burden among}

caregivers of terminally ill patients with cancer. Journal of palliative care, 20(1), 38.

(37)

39_{Lin, I. F., Fee, H. R., & Wu, H. S. (2012). Negative and positive caregiving experiences: A closer look at the}

intersection of gender and relationship. Family Relations, 61(2), 343-358.

40_{Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and}

analysis. The Gerontologist, 37(3), 355-364.

41_{Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving}

research: A 20-year review (1980–2000). The Gerontologist, 42(2), 237-272.

42_{Vincent, C., Desrosiers, J., Landreville, P., & Demers, L. (2009). Burden of caregivers of people with stroke:}

evolution and predictors. Cerebrovascular Diseases, 27(5), 456-464.

43_{Andrén, S., & Elmståhl, S. (2007). Relationships between income, subjective health and caregiver burden in}

caregivers of people with dementia in group living care: A cross-sectional community-based study. International Journal of Nursing Studies, 44(3), 435-446.

44_{Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S. (2010). Differential}

features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: An exploratory comparative design. International Journal of Nursing Studies, 47(10), 1262-1273.

45_{Schulz, R., Beach, S.R., Cook, T.B., Martire, L.M., Tomlinson, J.M., & Monin, J.K. (2012). Predictors and}

consequences of perceived lack of choice in becoming an informal caregiver. Aging and Mental Health, 16(6), 712-721.

46_{Kim, H., Chang, M., Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with}

dementia. Journal of Advanced Nursing, 68(4), 846-855.

47_{Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects}

study. Jama, 282(23), 2215-2219.

48_{Lee, Y., & Zurlo, K. A. (2014). Spousal Caregiving and Financial Strain Among Middle-Aged and Older Adults.}_The

International Journal of Aging and Human Development, 79(4), 302-321.

50_{Ramchand, R., Taniellian, T., Fisher, M., Vaughan, C. A., Trail, T. E., Epley, C., et al. (2014). Hidden Heroes:}

America's Military Caregivers. RAND Corporation. Retrieved from: http://www.rand.org/health/projects/military-caregivers.html

51_{Hastings, J. S., Madrian, B. C., & Skimmyhorn, W. L. (2013 May). Financial Literacy, Financial Education and}

Economic Outcomes. Annual Review Economics, 5, 347-373.

52_{Consumer Financial Protection Bureau. (October 2015,). Financial Literacy Annual Report. Retrieved from}

http://files.consumerfinance.gov/f/201510_cfpb_financial-literacy-annual-report.pdf

53_{Hastings, J. S., Madrian, B. C., & Skimmyhorn, W. L. (2013 May). Financial Literacy, Financial Education and}

Economic Outcomes. Annual Review Economics, 5, 347-373.

54_{Department of Veterans Affairs. VA History in Brief. Retrieved from}

http://www.va.gov/opa/publications/archives/docs/history_in_brief.pdf

55_{Department of Veterans Affairs. (2013). Veteran Population. Retrieved from}

(38)

59_{National Alliance of Caregivers. (2010). Caregivers of Veterans—Serving on the Home Front. Retrieved from:}_http:// www.caregiving.org/data/2010_Caregivers_of_Veterans_FULLREPORT

62_{Department of Veterans Affairs. (2014). Veterans Health Benefits Handbook. Retrieved from}

http://www.va.gov/HEALTHBENEFITS/vhbh/publications/vhbh_sample_handbook_2014.pdf; (VA, 2013a).

63_{Tanielian, T., Ramchand, R., Fisher, M., Sims, C., Harris, R., & Harrel, C. (2013) Military Caregivers: Cornerstones}

of Support for Our Nation’s Wounded, Ill, and Injured Veterans. Rand Corporation. Retrieved from http://www.rand.org/content/dam/rand/pubs/research_reports/RR200/RR244/RAND_RR244.pdf

64_{Tanielian, T., Ramchand, R., Fisher, M., Sims, C., Harris, R., & Harrel, C. (2013) Military Caregivers: Cornerstones}

of Support for Our Nation’s Wounded, Ill, and Injured Veterans. Rand Corporation. Retrieved from http://www.rand.org/content/dam/rand/pubs/research_reports/RR200/RR244/RAND_RR244.pdf

65_{National Alliance of Caregivers and AARP. (2012). 2011 Survey of Nebraska Members on Long-Term Care and}

Caregiving Issues. Retrieved from http://www.aarp.org/relationships/caregiving/info-03-2012/nebraska-members-long-term-caregiving.html

67_{National Alliance of Caregivers and AARP. (2012). 2011 Survey of Nebraska Members on Long-Term Care and}

Caregiving Issues. Retrieved from http://www.aarp.org/relationships/caregiving/info-03-2012/nebraska-members-long-term-caregiving.html

69_{Department of Veterans Affairs. (2014). Veterans Health Benefits Handbook. Retrieved from}

http://www.va.gov/HEALTHBENEFITS/vhbh/publications/vhbh_sample_handbook_2014.pdf

(39)

72_{Department of Veterans Affairs. (2010). The Program of Comprehensive Assistance for Family Caregivers.}

Retrieved from http://www.caregiver.va.gov/pdfs/CaregiverFactSheet_Apply.pdf

73_{Department of Veterans Affairs. (2010). The Program of Comprehensive Assistance for Family Caregivers.}

Retrieved from http://www.caregiver.va.gov/pdfs/CaregiverFactSheet_Apply.pdf

74_{Cornell University Law School. (2016). Fiduciary Duty. Retrieved from} http://www.law.cornell.edu/wex/fiduciary_duty

80_{Given, C.W., Stommel, M., Collins, C., King. S., & Franklin, S. (1992). The Caregiver Reaction Assessment (CRA)}