A report on a survey of 1,000 respondents

James A. Thorson & Chuck Powell
Department of Gerontology
University of Nebraska at Omaha
September, 2004

Sponsored by the Nebraska Association of Area Agencies on Aging

Executive Summary

• 1000 Nebraskans were interviewed for this study; half were aged 65 and older and half were aged 50 to 64. There were 100 people surveyed in each of the eight Area Agencies on Aging and an additional 100 interviews among Hispanics and 100 additional African Americans.

• People were asked about their health, living status, functional ability, whether they have received care and from whom, whether they are currently providing care to a frail older person, and whether they have ever provided care to a frail elder. They were asked if they have received help and from whom, and whether they expected to receive help. They were asked what services might help people who provide care to others.

• 70% of the respondents aged 65+ rated their own health as good or excellent. Fewer than 5% of those 65+ rated their health as poor or very poor.

• 93% said they have a family doctor, and the average distance to the doctor's office is less than ten miles. Only five per cent of those 65+ said that the lack of transportation was a barrier to receiving health care.

• About 17% plan to move at some time in the future. This was higher among those under age 65.

• 12.2% of the older respondents are covered by Medicaid.

• Older Nebraskans find the Medicare drug discount program to be confusing and of little benefit.

• Most people surveyed are familiar with their local Area Agency on Aging.

• Of the seniors surveyed, about 6% said they could use help with activities of daily living, but only 33 out of the 1000 people interviewed said they actually need personal assistance.

• Over a third of those needing assistance are helped by a service agency, the rest by family members or neighbors.

• 271 of the 1000 respondents are active care givers.

• Among the care givers, home health care was mentioned as the service that would be of the most assistance.

• Thirty per cent of the care givers have considered nursing home placement for the individual for whom they are caring.

• Of the care givers who have actually placed an individual in a nursing home, the rates are much higher for White care givers (50%) than for Blacks (33%) or Hispanics (none).

• Visiting nurse and respite services were mentioned as things that might have prevented nursing home placement.

• Medicaid pays for the nursing home care of 54% of the individuals who have been institutionalized, at an estimated cost of $3620 per month.

• 501 of these 1000 respondents have ever cared for a frail elder. Of these, only 4% had received any funds from a government agency. Most valued the satisfaction of caring for a loved one.

• Only 1% of those anticipating a need for their own care expect their family to pay for it.

Table of Contents

Introduction

Methods

• Description of Subjects

Results

• Health and Health Care Availability

• Program Awareness: Aging Services

• Functional Ability
  • IADLs

  • ADLs

• Need for Services

• Care Giving

• Plans and Perspectives on One's Own Care

• Suggestions for Care Giving

Summary and Conclusion

Appendix

Introduction

In October of 2003, the directors and senior staff of the eight Area Agencies on Aging in Nebraska met at the conference center in Halsey, Nebraska, and worked with the senior author of this report to brainstorm and plan a state-wide study of care givers and older care recipients in the state of Nebraska. The purpose of the study was to gather information on the scope of care giving, satisfaction with services, awareness of service delivery programs, the level of disability, and future plans of the individuals surveyed. The final product, it was determined, would:

• Compare respondents by age, with one group consisting of older individuals (those 65+) and a younger generation of Baby Boomers and the "pre-old" (ages 50 to 64).

• Compare respondents by geographic district: the eight Area Agencies on Aging in Nebraska (see Appendix).

• Compare respondents by race: White, Black, and Hispanic.

Note: nothing in this report is meant to reflect opinions or positions of the Nebraska Association of Area Agencies on Aging, the State Unit on Aging of the Nebraska Department of Health and Human Resources, the University of Nebraska, or the U.S. Administration on Aging. If opinions are expressed, they are those of the authors and the respondents.

Significant statistical differences are shown where they exist: p < .05 means that there were only five chances in one hundred that the difference reported was there by fluke or happenstance; p < .01 means the probability was only one in a hundred of being there by chance.

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The survey instrument consisted of 92 questions. Respondents were asked demographic items: their age, county of residence, race, type of area where they live (farm or ranch, small community of less than five thousand, mid-sized community of five to twenty-five thousand, larger community of twenty-five to one hundred and twenty-five thousand, or in Lincoln or Omaha). They were asked the size of their household, distance to their nearest relative, type of dwelling, marital status, income, and gender.

They were asked a series of questions on health: self-assessed health (from poor to excellent), whether or not they have a family doctor, how far they have to travel to receive medical services, the type of insurance (if any) they have, and a number of questions on attitudes toward the health care they receive. Similar questions were asked about prescription drugs. They were asked a series of questions dealing with functional ability: activities of daily living (ADLs) and instrumental activities of daily living (IADLs). They were asked if they needed any assistance with their own ADLs or IADLs, and if they received such assistance, who provides it. They were then asked specific questions about care givers and their own experience with care giving. Several questions were asked about their own anticipation of needs for personal care as well as any future plans they might have for moving from their present residence.

Since the data were being gathered only a few months after the implementation of the national Medicare drug discount cards, several questions were asked dealing with awareness and attitudes toward that program. Respondents were also asked about their knowledge and utilization of the services of their local Area Agency on Aging.

In addition to the numerical data, there were several open-ended questions where people were asked to put into their own words their feelings or attitudes. These verbatim responses are categorized within the Results section of this report as appropriately as possible, as it would be difficult to include every single one of them.

The questionnaire was pre-tested, translated into Spanish, and implemented by a local telemarketing firm. This particular firm has experience in market research and surveying of older persons. It employs a group of operators that are mostly women who are themselves in mid-life or who are retired, several are bilingual, and the calls were made during the daytime (when older persons may be more likely than younger people to be home, and when the rates for calling are cheapest with the firm). Calls were made to published numbers within the eight AAA districts, with each residential number having an equal chance of being called. Persons answering were asked if an older person was in the home and able to speak on the phone; where more than one older person was available and willing to speak, the interviewer asked to speak to the oldest individual in the residence. If no older person was available, the call was terminated with thanks and the next number attempted. Interviews lasted about twenty minutes. Calls were made until one hundred interviews were completed in each district. The African American and Hispanic respondents were drawn from state-wide telemarketing lists that are commercially available. They were asked for the oldest available person in the home in a similar manner to the first eight hundred completed responses. Calling was continued until one hundred interviews were completed with each group. Because the first eight hundred calls were made by geography rather than by race, there were several minority individuals (five Black, two Hispanic, and twenty "other") that were included by the luck of the draw. Finally, calls were made until an exact division was made by age: half sixty-five or older (65+) and half between fifty and sixty-four (<65).

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	White	Black	Hispanic	Other	Total
Males	379	54	51	14	498
Females	394	51	51	6	502
Total	773	105	102	20	1000

Mean age of	<65 = 57.8 yrs (N = 500; SD = 4.56)
	65+ = 75.1 yrs (N = 500; SD = 6.46)

The range in age of the entire sample was from 50 to 94.

		Mean Age by district:
		Mean		SD
Aging Office of Western Nebraska		67.2		10.0
Blue Rivers Area Agency on Aging		68.6		10.3
Eastern Nebraska Office on Aging		65.1		10.3
Lincoln Area Agency on Aging		65.7		10.4
Midland Area Agency on Aging		64.9		10.2
Northeast Nebraska Area Agency on Aging		67.2		10.6
South Central Area Agency on Aging		67.0		10.0
West Central Area Agency on Aging		67.6		11.4

(None of these differences were statistically significant)

A = Live on a farm or ranch
B = Live in a community of less than 5000 people
C = Live in a mid-sized community (5001 to 25,000)
D = Live in a big community (25,001 to 125,000)
E = Live in Lincoln or Omaha

				(Percent)
		A	B	C	D	E
White (N = 773)		17	35	25	6	16
Black (N = 105)		1	1	7	7	85
Hispanic (N = 102)		6	27	13	4	49
<65 (N = 500)		19	25	13	6	27
65+ (N = 500)		10	36	24	6	26
Aging Office of Western Nebraska		17	34	46*	2	-
Blue Rivers Area Agency on Aging		20	46	32*	1	-
Eastern Nebraska Office on Aging		4	10	10	7	69
Lincoln Area Agency on Aging		13	15	9	-	63
Midland Area Agency on Aging		12	43	23	4	-
Northeast Nebraska AAA		23	42	31*	4	-
South Central Nebraska AAA		31*	48*	9	12	-
West Central Nebraska AAA		15	39	39*	4	-
Total		14	30	22	6	27

*p<.05

(Percentages may not equal 100 because of rounding)

In this instance, respondents from the South Central Nebraska Area Agency on Aging were significantly more likely to live on a farm or a ranch than were the others; they were also more likely to live in a community of fewer than 5000 people. Those living in the Aging Office of Western Nebraska were more likely to live in a community of 5001 to 25,000 people; this was also true of those in the Northeast Nebraska AAA and the West Central NE AAA.

They were also asked a number of additional demographic questions.

A = Live alone
B = With one other person
C = With two other persons
D = With three or more others

		(Percent)
	A	B	C	D
White	22	59	13	6
Black	29*	53	10	8
Hispanic	16	53	21*	9
<65	12	61	16	10*
65+	32*	55	9	3
Total	22	58	13	7

*p <.05

Significantly more Blacks live alone in comparison to Whites or Hispanics, significantly more Hispanics live with two other persons, and significantly more people aged 50 to 64 live with three other people or more. The only differences by geographic district are that people in the Lincoln AAA and Eastern Nebraska Office on Aging (ENOA) areas are slightly more likely to live in a household of three or more.

In response, a total of 89% said they live in a single family dwelling. The differences were by age: those under 65 were more likely to live in a single family dwelling (92%) than those 65+ (86%). About five percent of the respondents from the Lincoln AAA and ENOA live in apartments. Other differences are not statistically significant.

			% living in single family dwellings:
Aging Office of Western Nebraska			94%
Blue Rivers AAA			91%
ENOA			91%
Lincoln AAA			83%
Midland AAA			89%
Northeast Nebraska AAA			95%
South Central Nebraska AAA			93%
West Central Nebraska AAA			86%

Asked what best describes their marital status, 72% of the entire group indicated that they were married and living with a spouse; about seven percent were divorced, four percent single and never married, and 17% widow/ers. There were variations in this by age: only six percent of those under age 65 were widows or widowers; this figure was 28% for those 65+. There were no meaningful differences in this regard by ethnicity or geography.

This is always a delicate question; 664 people out of the total group of 1000 agreed to answer it. Income ranged from zero (12 cases) to $9000 or over (two individuals, both of whom were under 65). Means and standard deviations were (in whole dollars):

	Mean	SD
White	2380*	1568
Black	1486	1067
Hispanic	1263	881
<65	2446*	1651
65+	1891	1354
Aging Office of Western Nebraska	2118	1328
Blue Rivers AAA	2089	1354
ENOA	2901*	1789
Lincoln AAA	2729*	1779
Midland AAA	2374	1596
Northeast Nebraska AAA	2463	1591
South Central Nebraska AAA	2164	1571
West Central Nebraska AAA	2417	1612
Total	2191	1546

*p < .05

Whites, younger people in the sample, and those in the ENOA and Lincoln AAA districts had higher mean income than the others. Because the statistical mean is prone to being skewed by extremes, we calculated the median (the point at which half are higher and half are lower) monthly income for those respondents aged 65+. It was $1500.

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Respondents were asked to classify their health on a five-point scale:

A = very poor
B = poor
C = fair
D = good
E = excellent

				(Percent)
		A	B	C	D	E
<65		0.8	5.8	19.4	47.0	27.0
65+		0.4	4.4	25.6	51.6	18.0
White		0.6	5.0	22.4	48.3	23.7
Black		-	1.0	19.0	54.3	48.0
Hispanic		1.0	8.8	29.4	48.0	12.7*

*p <.05

Significantly fewer Hispanics indicated a self-rated health of "excellent." There were no significant differences in health rating by AAA district.

Asked if they have a family doctor, 93% of the entire sample said that they did. This varied for a low of 91% in the Agency on Aging of Western Nebraska to a high of 95% in the South Central AAA, but these differences were not statistically significant. There were no differences by age on this question. There were differences by race: Blacks were less likely (89.5%) to have a family doctor than were Whites (93.1%) or Hispanics (92.2%).

The range was from zero to 170 miles, with no differences by age; it was slightly less for Blacks than for Whites and Hispanics. It did differ by AAA:

	Mean (in miles)	SD
Aging Office of Western Nebraska	11.7	21
Blue Rivers AAA	9.9	20
ENOA	5.6	7
Lincoln AAA	7.6	10
Midland AAA	9.7	15
Northeast Nebraska AAA	8.9	13
South Central AAA	16.6	33
West Central AAA	11.2	22
Total	9.7	19

A = Transportation (could not get back and forth to the doctor).
B = Not covered by health insurance.
C = Money (didn't feel that I had the money to see the doctor).
D = Didn't feel I was sick enough to see the doctor.
E = Afraid to see the doctor, fearful that something wrong would be found.
F = Other (specify)

				(Percent)
		A	B	C	D	E	F
<65		2.6	12.6	19.6	35.0	7.2	28.2
65+		5.0	5.0	12.8	28.2	5.4	22.8
White		3.1	4.8	14.6	30.0	5.6	26.5
Black		4.8	8.6	15.2	32.4	7.6	24.8
Hispanic		7.8	13.7	26.5	41.2	10.8	20.6
Aging Office of Western Nebraska		5.0	9.0	17.0	31.0	4.0	21.0
Blue Rivers AAA		1.0	11.0	18.0	33.0	4.0	20.0
ENOA		1.0	9.0	15.0	32.0	4.0	30.0
Lincoln AAA		6.0	7.0	12.0	27.0	6.0	24.0
Midland AAA		4.0	10.0	19.0	27.0	5.0	29.0
Northeast Nebraska AAA		5.0	5.0	11.0	33.0	3.0	26.0
South Central Nebraska AAA		3.0	6.0	15.0	30.0	7.0	30.0
West Central Nebraska AAA		-	8.0	13.0	28.0	10.0	29.0

Verbatim answers under the "other" reasons for not getting health care covered a variety of topics. A representative selection of them includes:

• "The deductible being so high that you try not to use it."
  
• "The costs are a large factor."
  
• "I do not like doctors."
  
• "Prescription costs are getting to be ridiculous."
  
• "There are not enough physicians."
  
• "I didn't have the time."
  
• "Because I don't have the money for health care."
  
• "There could be language barriers."
  
• "Being too sick to get there."
  
• "I think we get a doctor who is not interested in seeing older people."
  
• "It may take forever to get to the doctor."
  
• "Pure laziness would be the cause."

Asked if they were covered by Medicaid, 8.2% of the total sample responded "yes." This varied by age and race: 4.2% of those under 65 were covered by Medicaid, compared to 12.2% of the older respondents. Only 5.7% of the Black respondents indicated that they were covered by Medicaid, followed by 7.8% of the Whites and 11.8% of the Hispanics. The Midland AAA and West Central AAA had the highest Medicaid rates (12.0%); Northeast Nebraska AAA was significantly lower (3.0%), and the other area agency on aging districts did not deviate significantly from the mean.

Participants were asked, "Are you taking any prescription drugs?" and 77.5% of the entire sample said that they were. This did not vary by AAA, nor did it vary by race, but it did vary by age. While 69.6% of those under 65 were taking at least one prescription medication, a significantly higher 85.4% of those 65+ were. Interestingly, of those taking at least one prescription drug, the number of prescriptions was higher (3.7) for the younger respondents than it was for the older ones (3.0). This, however, did not represent a significant difference. Whites had a higher mean number of prescriptions (3.8) than either Blacks (1.2) or Hispanics (3.4). Those living in the areas covered by the Aging Office of Western Nebraska and the West Central Nebraska AAA were higher than the mean at 6.2 and 6.3 average number of prescriptions, respectively. The range in numbers of prescriptions overall was from zero to 25.

The mean number of miles (6.3) people are required to drive in order to fill a prescription did not vary by age or race, but it did by AAA:

	Mean	SD
Aging Office of Western Nebraska	10.3	22.1
Blue Rivers AAA	7.4	16.8
ENOA	1.9*	3.2
Lincoln AAA	2.6*	7.9
Midland AAA	7.0	11.9
Northeast Nebraska AAA	6.9	13.6
South Central Nebraska AAA	6.6	11.0
West Central Nebraska AAA	7.6	16.8

*p <.05

Distances traveled to fill a prescription by those within ENOA or the Lincoln AAA were significantly shorter than the others.

A. Know nothing about the program (17%)
B. Not well acquainted (44%)
C. Reasonably well acquainted (29%)
D. Well acquainted (10%)

Seniors were more likely than the sample aged 50 to 64 to respond that they were reasonably or well acquainted with the drug program. This did not vary significantly by race or geography.

Respondents were asked to whom they would turn for information on the new Medicare drug plan. Of the total, 26% said they would turn to the local aging group. Those over 65, at 29%, were more likely to do this than were those under 65 (23%). There were no differences in this regard by race or district. More people said they would look to the AARP for information (30%) or to friends (33%). African Americans, however, were significantly lower (21.9%) in the proportion who would turn to friends for information.

Asking for a brief assessment that summarizes their feelings on the new Medicare drug discount card for seniors resulted in 32 single-spaced pages of comments, a summation of which follows:

• "It's a joke."
  
• "I have no idea what the hell it is."
  
• "I think that it is a big waste of time and money."
  
• "It sucks."
  
• "I don't think I know enough about it."
  
• "I think it's hard to understand; it's a lot of red tape."
  
• "Anything is helpful, especially to those who have prescriptions."
  
• "They were sold a bill of goods."
  
• "It's great if it actually does help."
  
• "I think it stinks."
  
• "It's absolutely worthless as far as we're concerned."
  
• "For us it doesn't cover any of it."
  
• "I think it's a rip off."
  
• "I think it will work. I think it's a good idea."
  
• "I don't pay much attention."
  
• "It's confusing."
  
• "I hope it works all right."
  
• "My father has done pretty well with the card. I think it's a good plan."

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Of the one thousand respondents, 542 answered "yes" to the question: "Have you ever heard of the local Area Agency on Aging?" This varied in the following ways:

	Percent "Yes"
White	53.3%
Black	59.0
Hispanic	56.9
<65	55.4
65+	53.0
Aging Office of Western Nebraska	49.0
Blue Rivers AAA	49.0
ENOA	65.0**
Lincoln AAA	59.0*
Midland AAA	50.0
Northeast Nebraska AAA	42.0
South Central Nebraska AAA	56.0*
West Central Nebraska AAA	56.0*

*p <.05
**p <.01

They were asked if they or a member of their family had ever received any of the following services. (The figure indicates the percentage who said "yes"):

• Meals on wheels - 18.4%
  
• Congregate meals - 10.9%
  
• Local senior center services - 23.3%
  
• Senior Companion program - 3.5%
  
• Foster Grandparents - 3.4%
  
• Retired Senior Volunteer Program - 10.4%

Within these responses, whites were more likely to have received meals on wheels, and Hispanics were much less likely to have received congregate meals or the services of a local senior center. There were no other significant differences.

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Respondents were asked a series of questions concerning what are called instrumental activities of daily living (IADLs), an assessment of independence, and a more narrow series of questions referred to as activities of daily living (ADLs), which deal with basic physical abilities. People who are more impaired in either are more vulnerable and need services to help keep them at home and out of institutional settings.

IALDs

A. Can you get beyond walking distance from your home?
B. Do you go shopping for groceries?
C. Do you go shopping for clothing and other items?
D. Do you prepare your own meals?
E. Do you do your own housework?
F. Do you take your own medicine?
G. Do you handle your own money?

			Percent	responding	"no"
	A	B	C	D	E	F	G
White	12	8	9	9	10	4	2
Black	10	6	11	4*	8	7	-
Hispanic	13	9	9	8	9	6	8
<65	9	6	7	5	6	3	2
65+	16*	9	12	12	13	7*	2
Aging Office of Western Nebraska	14	4	7	9	9	6	3
Blue Rivers AAA	14	12*	9	12	14**	10*	3
ENOA	13	4	6	5	5	2	-
Lincoln AAA	9	5	7	9	5	5	-
Midland AAA	13	8	9	9	6	3	2
Northeast Nebraska AAA	12	7	12	8	14**	4	1
South Central Nebraska AAA	11	8	10	8	10	4	2
West Central Nebraska AAA	13	15*	13	12	15**	3	2
Total	12	8	9	8	10	5	2

*p <.05
**p < .01

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A = Do you dress and undress yourself?
B = Do you take care of your appearance, combing your hair or shaving?
C = Do you walk without assistance?
D = Can you get in and out of bed without assistance?
E = Can you take a shower or bath without assistance?
F = Do you have trouble getting to the bathroom on time?
G = Do you feel that you need help with your daily activities?

			Percent	"no"
	A	B	C	D	E	F	G
White	1	4	6	1	2	8	5
Black	1	4	11	1	1	6	7
Hispanic	1	3	7	2	4	8	8
<65	0.6	3.6	3.4	0.6	0.8	4.0	4.0
65+	1.0	4.6	10.8*	1.2	2.8*	11.2*	6.2
Aging Office of Western Nebraska	1	4	8	1	-	6	4
Blue Rivers AAA	2	8	10	3	4*	12	8*
ENOA	-	2	6	-	-	5	6
Lincoln AAA	-	3	4	-	1	7	3
Midland AAA	2	5	9	2	3	6	2
Northeast Nebraska AAA	-	6	3*	-	3	7	5
South Central Nebraska AAA	-	2*	8	-	-	9	5
West Central Nebraska AAA	1	4	5	-	2	12	4
Total	0.8	4.1	7.1	0.9	1.8	7.6	5.1

*p <.05

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Asked again if they needed assistance, 33 out of 1000 said that they did. African Americans were somewhat lower in this assessment (1.0% versus a mean of 3.3%), and Hispanics somewhat higher (6.9%). Interestingly, there were no differences between the two age groups (3.2% versus 3.4%). Those in the Blue Rivers AAA, with seven out of a hundred, were significantly higher than the mean for the entire group. Of the 33 of those who needed help, the following are their responses identifying from whom it was received:

• wife (24%)
  
• husband (28%)
  
• daughter (48%)
  
• son (28%)
  
• another female family member (30%)
  
• another male family member (12%)
  
• a neighbor (36%)
  
• a service agency (36%)

The total group of 33 was too small to make meaningful comparisons by race or geography. By age, the seniors, at 59%, were much more likely to have received help from a service agency than were those under age 65 (12%).

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Respondents were asked if giving care to an older person interferes with their job; 55 said that it did (7.6% of those under 65 and 3.4% of those 65+). Race did not present a significant difference. Those living in the ENOA (9%), Midland (7%), and South Central (8%) districts were significantly higher on this comparison than the mean (5.5%) for the entire group.

Asked how many hours per week they devoted to care of an older person, 72.9% replied "none." Of the 271 remaining subjects, the range of care giving hours was from one to 168 per week. Since the mean in these kinds of comparisons is skewed by a few cases that represent extremes at either end, we calculated the median number of hours per week of these 271 caregivers:

			Median
White			10
Black			6
Hispanic			8
<65			7
65+			8

The median number of care giving hours did not vary significantly by age, race, or by AAA district.

Of the 271 care givers, only 58 (21.4%) said that they had sought help in their care giving role. African Americans (at 32%) were much more likely to seek help than were whites (21%) or Hispanics (10%). Age of the care giver in this regard didn't vary too much: 23% of those under 65 sought help, compared to 19% of the care givers who are 65 or older. A total of 70 people received help, which is higher than the number (58) that sought it. There was only one significant difference in this comparison: African Americans were more likely to have received help than were Whites or Hispanics.

The respondents were asked if they could describe any services that would have helped them care for their older care recipient. Verbatim answers included:

• "It would be really nice if doctors would make house calls."
  
• "Aid in house keeping would be helpful."
  
• "Home health care."
  
• "If my mother would listen to me that would help."
  
• "No, not off hand."
  
• "Home health helps. They are there the days I'm not."
  
• "They help with the aging program. It's a good one."
  
• "Home health care. You can get that through your senior center."
  
• "Just the meals on wheels and visiting nurses."
  
• "House keeping."
  
• "If I could get a ramp up the steps."
  
• "No, we have an extended family so that pretty much handles it."
  
• "I guess transportation is the main thing."
  
• "If we could get financial help with medications."
  
• "An agency on aging."
  
• "I'm getting all the services I need."
  
• "I can't think of any."

They were asked if they had considered nursing home placement for the person they care for. Of the 271 care givers, 81 (30%) said that they had. Whites (33%) were higher than were Blacks (24%) or Hispanics (16%), and younger respondents (35%) were higher than older people (27%) in these comparisons, all of which were statistically significant. Those in the Midland AAA district, at 16 of 31 care givers responding "Yes," were higher than the other area agency on aging districts:

A = Number of persons (out of a sample of 100) providing care
B = Number who have considered nursing home placement

	A	B
Aging Office of Western Nebraska	29	6
Blue Rivers AAA	25	8
ENOA	26	10
Lincoln AAA	17	4
Midland AAA	31	16*
Northeast Nebraska AAA	29	10
South Central AAA	28	10
West Central AAA	30	6
Total (out of 800)	215	70

*p < .05

Out of the 800 randomly selected interviewees (excluding for the moment the over-sampling of Blacks and Hispanics), 26.9 % are providing care for an older person, and 32.5% of these people are considering nursing home placement for the person for whom they are caring. This compares to 24% of Black care givers and 16% of Hispanic care givers when the over-sampling of minorities is taken into consideration. This rate is higher (35.2%) among care givers under 65 than it is for those who are 65 or older (22%).

A total of 81 people had considered placement for the individual they were caring for. Of these 81 care givers, 37 (46%) had gone ahead and placed the individual in a nursing home. This varied by race: 50% of the white care givers and 33% percent of the Black care givers had placed an individual in a nursing home, but none of the Hispanics had done so. The rates did not vary significantly by age (44% and 50%, respectively). They did, however, vary by AAA: seven out of eight caregivers in the Blue Rivers district had placed an individual in a nursing home, while none out of four in the Lincoln AAA had done so. That made the one significantly higher than the norm and the other significantly lower.

Paring the numbers further, only nine out of these 37 said that there were services that might have helped keep the person at home longer:

• "Maybe a little home help care. A nurse to come in and give him a bath."
  
• "Assisted living."
  
• "I would preferred them to have at-home care."
  
• "A program to give a person a day away from the person because it eats on your nerves after a while."
  
• "Social services."
  
• "Home health and meals on wheels."

Again questioning these 37 who have placed an individual in a nursing home, 20 (54%) said that the cost of the care is being paid by Medicaid. And out of the 17 who said that the costs presently are not being paid by Medicaid, 11 said that it was not likely that they would be in the future. Three said it was somewhat likely and three said it was very likely that nursing home costs for the individual they had placed would be paid for by Medicaid at some future time.

Finally, of the 20 placements currently being paid for by Medicaid, the mean cost is $3620 per month.

Switching perspectives from current care giving, subjects were also asked if they had given care to a frail older person. Half (501 out of 1000) said that they had. This did not vary significantly by race or AAA; it did vary somewhat by age. Of the people under 65, 52.6% had cared for a frail elder; 47.6% of those 65 and older had cared for a frail elder at some time. These 501 care givers were then asked if they had received anything in return:

A = Nothing
B = A thank you
C = Money from the frail person's family
D = Money from a government agency
E = Service from a government agency

				(Percent)
		A	B	C	D	E
White		28	49	7	14	10
Black		36	42	2	-	3
Hispanic		26	48	6	12	1
<65		24	54	6	4	4
65+		35	44	7	4	2
Aging Office of Western Nebraska		26	45	11	6	2
Blue Rivers AAA		23	52	6	10	4
ENOA		32	61*	2	-	4
Lincoln AAA		32	38	12	4	4
Midland AAA		19	55	4	4	-
Northeast Nebraska AAA		33	49	2	-	5
South Central Nebraska AAA		23	53	11	4	5
West Central Nebraska AAA		38	46	8	-	2
Total		28	49	7	4	3

*p <.05

Verbatim answers were also solicited to the question, "In the capacity of care giver, what did you receive?" Within the "other" category people said:

• "I received self-satisfaction."
  
• "I received both verbal and written thank yous."
  
• "I just took care of him myself."
  
• "My husband's love."
  
• "It's expected, I guess."
  
• "Peace of mind."
  
• "If I helped elderly people it was people in my neighborhood that I did just as a nurse."
  
• "It was family."
  
• "I received satisfaction of being able to take care of someone I loved."
  
• "A written thank you and a gift."
  
• "The gratitude of an ailing mate."
  
• "The love she gave me."
  
• "He's my father; I don't expect anything."

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Participants in the study were read this sentence: "At a future date I will need some help in order to maintain my independence. Which of the following will provide:"

A = I planned for it, and I'll pay.
B = My family will provide the assistance.
C = My family should pay for the service.
D = The government has all these programs, let them pay.
E = A combination of government care and family.

				(Percent)
		A	B	C	D	E
White		40	15	1	8	36
Black		48	18	1	4	30
Hispanic		33	26*	5	12	25
<65		37	13	2	6	42*
65+		43	19	1	10*	26
Total		40	16	2	8	34

*p <.05

There were no important differences in this question on future care between AAA districts. Keeping an orientation on the future, they were asked: "In the future or at retirement, do you plan to move?" Here are the percentages that answered "Yes":

	"Yes"
White	17.3%
Black	16.2
Hispanic	14.7
<65	21.4*
65+	12.4
Aging Office of Western Nebraska	18.0
Blue Rivers AAA	15.0
ENOA	18.0
Lincoln AAA	25.0*
Midland AAA	17.0
Northeast Nebraska AAA	12.0
South Central Nebraska AAA	16.0
West Central Nebraska AAA	17.0
Total	16.9

*p <.05

Significantly higher numbers of respondents aged 50 to 64 planned to move in retirement compared to those now 65 and older. People in the counties covered by the Lincoln AAA also were significantly higher in their stated plans to move. Asked what would have the greatest influence in selecting a new location for their move, responses were scattered. Of the 169 people in the entire sample who plan to move in the future, 17% said that health care would influence their decision, and just 2.4% said that services might influence it. Fifteen percent said they hadn't thought about the issue of services, and fully 42% said "none of the above." About a quarter of Whites and 35% of Blacks said that they intended to move to an area where family can help; only 6.7% of Hispanics chose this response, a significant difference. None of these responses varied significantly by age or AAA district.

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Finally, the respondents to this study were asked for their own thoughts on the question: "What could the State of Nebraska do to make life more comfortable for our senior citizens?" The most frequent response to this question was, "I don't know," followed by, "Lower their taxes." In fact, there were many responses dealing with things the state cannot do, ("Increase their Social Security,") or already does, ("Give them a break on their property taxes.") Many expressed satisfaction with existing services or with services provided by their families. Others gave the impression that they had done things by themselves for years and expected that they could continue to do so. A few had fun with the interviewer: "Give us free stroller," "Make the summers cooler and the winters warmer."

Many were contradictory, asking for more services and fewer taxes in the same breath. Others were difficult to categorize: "They are pretty good. I get the home-state exemption. Instead of paying $1600 a year I pay $500. They're very generous. I wish someone would help me a little with the bill but I have a little too much money to qualify for anything the state will help you with."

The following are a cross-section of these verbatim answers:

• "They should offer support for their present family caregivers."
  
• "Get a better drug plan."
  
• "I can't think of anything. The LIFE program in Lincoln has been great."
  
• "They should not charge so much for taxes. That's a reason I plan for leaving because if I move it will be cheaper."
  
• "I don't know. Somehow let people die with dignity."
  
• "I think a good drug supplement program would help us immensely."
  
• "They should lower our taxes."
  
• "More in-home care would be helpful."
  
• "They do everything. They even give us dinners. The aging group in Eastern Nebraska is great."
  
• "I would say we have it pretty good here."
  
• "I really don't know what more they could do."
  
• "You could have it rain once in a while."
  
• "Make it more comfortably for people to be able to stay in their homes longer. Make sure that they have the care that can come in and help with being at home."
  
• "I don't think the government needs to do everything for people."
  
• "There are programs out there that could have more public awareness to let people know what is available to the elderly."
  
• "I'm fortunate because my husband is still healthy. No, we are comfortable the way we are, and I don't take anything from the government."
  
• "I think they have providers for the aging, which I didn't know about until four years ago. It's been a big help with my mom."
  
• "I don't feel like I'm there yet, so I don't know. I'm in denial."
  
• "Not much. Have more senior centers. Have senior buses for transportation when they can't get around."
  
• "I don't have the slightest idea."
  
• "Give them a break on property taxes."
  
• "They could give us more money on our Social Security."
  
• "I can't think of any. I think they do a good job."
  
• "They're doing pretty good for us."
  
• "They could plant some more pheasants so I don't have to go to South Dakota to hunt."
  
• "I think handicap parking could be closer to the store entrance."
  
• "Stay out of my business."
  
• "I think they've done as much as they need to."
  
• "I haven't given it any thought."
  
• "I just miss qualifying for the Homestead Exemption. I wish they would make that a little more generous."
  
• "Maybe they could have telephone contacts; call the elderly just to see if they are up and around."
  
• "Don't have the seats so high in the parks."
  
• "Help them with paying for medications."
  
• "There should be more at home care available. More assisted living places will be needed in the future. More facilities where you can go from independent to assisted living without being torn up."
  
• "I don't have any idea."
  
• "They should decrease the paperwork and time involved in actually getting a caregiver into the home."
  
• "I don't know about that. I can't really say as long as I have my husband. I get along because my family takes care of me."
  
• "Nothing. My family looks after us."
  
• "They could provide more low cost housing."
  
• "I don't think it's the state's place."
  
• "They could get rid of the governor."
  
• "They could lower our taxes and provide more free medical care."
  
• "I never gave that a thought."
  
• "I really don't know because we have a handy van here and a senior center. We really do have good services here in Beatrice."
  
• "It's nice of the state to consider it, but I'm not sure it's their responsibility."
  
• "I don't think we need to leave it up to the state. Everybody should be responsible for themselves."
  
• "We need more Food Stamps. I only get ten dollar's worth."
  
• "I'm not old enough to know."
  
• "I think the State of Nebraska is treating us very well."
  
• "Well, for one thing, reduce the cost of drugs."
  
• "They should make larger rooms in the rest homes."

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One thousand adults in Nebraska were surveyed in July and August of 2004 about care for the elderly. Half of those surveyed were 65 or older (average = 75 years) and half were aged 50 to 64 (average = 58). There were equal numbers of males and females. Ten percent of the sample were African Americans and ten percent Hispanic. Each Area Agency on Aging had a minimum of 100 people surveyed.

Two-thirds of the respondents live in a community of fewer than 25,000; 14% on a farm or a ranch. Almost three-quarters are married, living with a spouse. Fewer than one quarter live alone. Fully 89% live in a single family dwelling. Two-thirds were willing to specify their average monthly income: it was higher in the more urban areas. Overall, the mean was $2191 per month; the median for those 65+ was $1500. Income among Whites (mean = $2380/mo.) was significantly higher than it was for Blacks ($1486/mo.) or Hispanics ($1263/mo.).

Self-assessed health care did not differ much by age, with older persons rating it only slightly lower than those aged 50 to 64. Fewer Hispanic people rated their health as excellent. One obvious limitation of this methodology is that only community-dwelling elders were surveyed. Only 4.8% of those 65+ said that their health is poor or very poor. Perhaps those with the poorest health are already institutionalized. There were no urban/rural differences in self-rated health. Those living in the South Central NE AAA, West Central NE AAA, and Aging Office of Western Nebraska counties did have significantly longer to drive (an average of 12 to 17 miles) to get to the doctor's office than did the others (less than ten miles).

Only 25 people out of the total sample of 1000 said that transportation was a barrier to their receiving health care. This was higher among Hispanics (7.8%), as was lack of coverage by health insurance. Over 98% of the seniors have Medicare, and over 85% of them have an additional supplementary health insurance policy. Hispanic respondents were more likely to have Medicaid coverage than were Blacks or Whites. The pattern, if any, of Medicaid use is more Eastern (lower) to Western (higher utilization) in the state than it is rural/urban.

Respondents were overwhelmingly negative when asked about the new Medicare drug discount cards, saying that they either didn't know enough about the program or that the card itself was of little benefit to them.

The majority of respondents have heard of their local Area Agency on Aging. Awareness is highest among those in the counties covered by ENOA as well as the South Central NE and West Central NE AAAs. Senior centers are the most frequently utilized service by these respondents, followed by meals on wheels.

About 16% of the seniors surveyed have some restriction that endangers them of becoming homebound, and 10% said that they could use help preparing meals. One percent needs help dressing, and about three per cent need help bathing. A little over six per cent said they need help in some aspect of their activities of daily living, compared to four percent of those 50 to 64. There were few discernible urban/rural patterns of functional disability. A little over 3% say they actually need assistance: Hispanics (6.9%) are higher in this regard.

Family members overwhelmingly are the source of services received, although over a third are assisted by a service agency or by neighbors.

A total of 271 (out of 1000) currently are care givers, averaging between six and ten hours per week of giving care to a frail elder (although the reported high was 168 hours per week). Only 21% of these care givers have asked for help. African Americans are much more likely to seek (and receive) help in their care giving.

Home health care and visiting nurses were mentioned most frequently among the services that would be of greatest help.

Thirty per cent of the active care givers have considered placing the individuals for whom they care in a nursing home. This rate is higher (35%) among care givers under 65 than it is among care givers who are themselves older (22%). Whites were more likely to actually place an individual in a nursing home. Services mentioned as possibly preventing or delaying placement included home health and respite care. Of those placed, 54% are receiving help from Medicaid at an average cost of $3620 per month.

Asked if they had ever cared for a frail elder, 501 said that they had. Most received nothing more than a thank-you for this; four percent had received money from a government agency, and 3% had received services from a government agency. Most said that what they valued most was the satisfaction of caring for a loved one.

Asked if they anticipated future needs for care, most said they planned to pay for that care themselves, followed by a combination of government agencies and family care. Only one percent of those 65+ expect family to pay for their care.

Seventeen percent plan to move at some time in the future. This is higher (21.4%) among those under 65 than those 65 or older (12.4%). About a quarter of the Whites and 35% of the Blacks who plan to move give being near family as the reason; this is significantly lower among Hispanics (6.7%).

Finally, in terms of suggestions for how the state might help older care givers, home health and visiting nurses were mentioned as being particularly valuable. No response at all, however, was the most frequent case. Most respondents said they'd never given much thought to how state-sponsored services might aid in providing care to a frail elder. Care giving is a role that families assume as a filial obligation: they care for Mother because she is Mother. One cares for one's own. Independence and strong family values came through as normative expectations over and over again in the process of these one-thousand Nebraska interviews.

The difficulty occurs where there are no available family members to assume care giving duties. This will increasingly be the case in the coming era of more old people and smaller families: there will be fewer available care givers. This is especially the case when the children have moved out of state and are not able to deliver services to their parents and grandparents. So far, family members can be expected to be the main source of service delivery to the aged.

We anticipate that this will be changing in the future.

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Nebraska's Area Agencies on Aging

Aging Office of Western Nebraska
Victor Walker, Director
Bluffs Business Center
1517 Broadway, Suite 122
Scottsbluff, NE 69361-3184
(308) 635-0851 / (800) 682-5140

Counties Served:

	Total Population	65+	85+
Banner	819	122	9
Box Butte	12,158	1,489	281
Cheyenne	9,830	1,443	250
Dawes	9,060	1,135	207
Deuel	2,098	403	78
Garden	2,292	459	91
Kimball	4,089	751	109
Morrill	5,440	800	127
Scotts Bluff	36,951	5,477	886
Sheridan	6,198	1,136	207
Sioux	1,475	216	23
Total	90,410	13,431	2,268
		(14.9%)	(2.5%)

Blue Rivers Area Agency on Aging
Larry Ossowski, Director
Gage County Courthouse, Room 24
Beatrice, NE 68310-2946
(402) 223-1352 / (800) 659-3978

Counties Served:

	Total Population	65+	85+
Gage	22,993	3,686	728
Jefferson	8,333	1,543	346
Johnson	4,488	806	183
Nemaha	7,576	1,147	244
Otoe	15,396	2,336	489
Pawnee	3,087	692	144
Richardson	9,531	1,706	344
Thayer	6,055	1,227	259
Total	77,459	13,143	2,737
		(17.0%)	(3.5%)

Eastern Nebraska Office on Aging
Beverly Griffith, Director
4223 Center Street
Omaha, NE 68105
(402) 444-6444 / (888) 554-2711
(402) 721-7770 (Washington & Dodge Counties)

Counties Served:

	Total Population	65+	85+
Cass	24,334	2,581	419
Dodge	36,160	5,310	1,032
Douglas	463,585	44,454	6,341
Sarpy	122,595	7,392	731
Washington	18,780	2,061	364
Total	665,454	61,798	8,887
		(9.3%)	(1.3%)

Lincoln Area Agency on Aging
June Pederson, Director
1001 O Street, Suite 101
Lincoln, NE 68508-3610
(402) 441-7022 / (800) 247-0938

Counties Served:

	Total Population	65+	85+
Butler	8,767	1,346	207
Filmore	6,634	1,145	266
Lancaster	250,291	22,640	3,440
Polk	5,639	975	232
Saline	13,843	1,899	479
Saunders	19,830	2,582	461
Seward	16,496	2,068	434
York	14,598	2,113	420
Total	336,098	34,768	5,939
		(10.3%)	(1.8%)

Midland Area Agency on Aging
Dick Bauer, Executive Director
P. O. Box 905
Hastings, NE 68902
(402) 463-4565 / (800) 955-9714

Counties Served:

	Total Population	65+	85+
Adams	31,151	4,133	809
Clay	7,039	1,090	177
Hall	53,534	6,441	1,036
Hamilton	9,403	1,212	224
Howard	6,567	965	160
Merrick	8,204	1,184	253
Nuckolls	5,057	1,050	182
Webster	4,061	815	172
Total	125,016	16,890	3,013
		(13.5%)	(2.4%)

Northeast Nebraska Area Agency on Aging
Connie Cooper, Director
P.O. Box 1447
119 Norfolk Avenue
Norfolk, NE 68702-1447
(402) 370-3454 / (800) 672-8368

Counties Served:

	Total Population	65+	85+
Antelope	7,452	1,238	245
Boone	6,259	1,070	205
Boyd	2,438	482	110
Brown	3,525	655	137
Burt	7,791	1,426	272
Cedar	9,615	1,581	346
Cherry	6,148	909	153
Colfax	10,441	1,353	279
Cuming	10,203	1,694	371
Dakota	20,253	1,726	288
Dixon	6,339	948	203
Holt	11,551	1,932	357
Keya Paha	983	177	26
Knox	9,374	1,821	346
Madison	35,226	4,197	887
Nance	4,038	694	887
Pierce	7,857	1,113	237
Platte	31,662	3,792	587
Rock	1,756	313	78
Stanton	6,455	724	146
Thurston	7,171	842	102
Wayne	9,851	1,119	233
Total	216,388	29,846	5,710
		(13.8%)	(2.6%)

South Central Nebraska Area Agency on Aging
Rod Horsley, Director
Suttle Plaza, 4623 Second Ave., Suite 4
P.O. Box 3009
Kearney, NE 68848-3009
(308) 234-1851 / (800) 658-4320)

Counties Served:

	Total Population	65+	85+
Blaine	583	80	18
Buffalo	42,259	4,048	832
Custer	11,793	2,063	422
Franklin	3,574	713	142
Furnas	5,324	1,053	231
Garfield	1,902	374	97
Greeley	2,714	513	116
Harlan	3,786	736	135
Kearney	6,882	941	206
Loup	712	129	10
Phelps	9,747	1,444	320
Sherman	3,318	640	128
Valley	4,647	919	196
Wheeler	886	136	13
Total	98,127	13,771	2,866
		(14.0%)	(2.9%)

West Central Nebraska Area Agency on Aging
Linda Forman, Director
120 West Second Street
North Platte, NE 69101-3902
(308) 535-8195 / (800) 662-2961

Counties Served:

	Total Population	65+	85+
Arthur	444	63	10
Chase	4,068	715	142
Dawson	24,365	2,930	513
Dundy	2,292	429	85
Frontier	3,099	445	79
Gosper	2,143	370	76
Grant	747	95	7
Hayes	1,068	194	18
Hitchcock	3,111	570	125
Hooker	783	162	49
Keith	8,875	1,456	174
Lincoln	34,632	4,468	775
Logan	774	122	14
McPherson	553	84	13
Perkins	3,200	502	115
Red Willow	11,448	1,865	315
Thomas	729	125	23
Total	102,311	14,595	2,533
		(14.3%)	(2.5%)

	Total Population	65+	85+
NEBRASKA	1,711,263	198,242	33,953
		(11.6%)	(2.0%)

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http://gero.unomaha.edu



Nebraska's Area Agencies on Aging

http://www.hhs.state.ne.us/ags/aaa.pdf



Unit on Aging, Nebraska Health and Human Services System

http://www.hhs.state.ne.us/ags/agsindex.htm