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TitleProcess Evaluation of the Older Americans Act Title III-E National Family Caregiver Support Program
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Table of Contents
                            Process Evaluation of the Older Americans Act Title III-E National Family Caregiver Support Program: Final Report
	I. National Family Caregiver Support Program Process Evaluation
	II. Evaluation Objectives
	III. Literature Review
		Methodology
		Literature Review Outline
		Section I: Nature and Extent of Informal Caregiving
			Characteristics of Caregivers and Care Recipients
			Numbers of Informal Caregivers
			Work of Informal Caregivers
			Pathways into Caregiving
		Section II: Impacts of Informal Caregiving
			Impacts on Mental and Physical Health
			Impacts on Family Life and Relationships
			Impacts on Employment and Finances
			Positive Impacts
		Section III: Supports for Informal Caregivers
			Respite Care Services
			Counseling, Education, and Establishment of Support Groups
			Information, Referral and Access Assistance
			Supplemental Services
		Section IV: Special Issues in Informal Caregiving
			Caregiving among Members of Racial and Ethnic Minority Groups
			Caregiving and Socioeconomic Status
			Female Caregivers
			LGBT Caregiving
			Informal Caregiving and Dementia
			Informal Caregiving and Mental Illness
		Section V: Policy Context
			Impact of Demographic Changes
			Importance of Caregiver Contributions
			Caregiver Policies
	IV. Data and Methodology
		NFCSP Sampling Design
		Survey Instrument Development
		Survey Response Rates
		Data Collection
		Data Analysis
		Study Limitations
			Item Nonresponse
			LSP Recruitment Barriers
	V. Results
		Organization Background
			SUA Background
			AAA Background
			LSP Background
		History of Caregiver Services Availability
		NFCSP Staffing and Training
			SUA Staff and Training
			AAA Staff
			AAA Volunteers
			AAA Staff and Volunteer Training
			LSP Staff and Volunteers
		Targeting Caregiver Populations
			SUA Targeting
				More than 80 percent of SUAs that reported targeting have made a specific effort to serve caregivers of persons with Alzheimer’s disease or a related disorder with neurological and organic brain dysfunction. A similar percentage of SUAs (81.6 percent) target grandparents raising grandchildren and other relative caregivers for the NFCSP. Two-thirds of SUAs (67.3 percent) work to support rural caregivers and more than one-half (63.3 percent) work to support racially and ethnically diverse caregivers. Table 21 demonstrates the frequency with which SUAs support a range of informal caregivers and the percentage doing so.
			AAA Targeting
		Partnerships
			SUA Partnerships
			AAA Partnerships
			AAA Coalition Involvement
		NFCSP Intake and Screening
			SUA Intake and Screening
			AAA Intake and Screening
		Assessment and Reassessment
			SUA Caregiver Assessment Policies and Procedures
			AAA Caregiver Assessment Policies and Procedures
			LSP Caregiver Assessment Policies and Procedures
		Wait Lists and Service Caps
			SUA Wait Lists
				The majority of SUAs selecting the “Other” answer for this question added that wait lists are populated and maintained at the local level.
			AAA Wait Lists
			AAA Service Caps
		NFCSP Services
			SUA NFCSP Services
			AAA NFCSP Services
			LSP NFCSP Services
			LSP Service Plans
		NFCSP Performance Monitoring
			SUA Program Monitoring
			SUA NFCSP Caregiver Client Satisfaction
			AAA Program Monitoring
			AAA NFCSP Caregiver Client Satisfaction
			LSP NFCSP Caregiver Client Satisfaction
		Other Caregiver Programs and HCBS Integration
			SUA HCBS Integration
			SUA Non-OAA Caregiver Programs
			AAA Non-OAA Caregiver Programs
		Future of the National Family Caregiver Support Program
			SUA Perspectives on NFCSP Challenges and Planned Improvements
			AAA Suggestions for the National Family Caregiver Support Program
			LSP Continued Service Provision
	VI. Discussion and Conclusion
		NFCSP Staffing, Training, and Education
		Targeting Caregiver Populations
		Partnerships
		Assessment and Reassessment
		Wait Lists and Service Caps
		NFCSP Services
		Program Performance Monitoring
		Other Caregiver Programs and HCBS Integration
		Funding for the National Family Caregiver Support Program
		Conclusion and Recommendations
			Ongoing NFCSP Communications Across the Aging Network
			Research
			Caregiver Assessment and Outcomes
			Funding for the National Family Caregiver Support Program
	VII. References
                        
Document Text Contents
Page 1

Process Evaluation of the Older Americans Act Title III-E National
Family Caregiver Support Program: Final Report

The Lewin Group | www.lewin.com

HEALTH CARE AND HUMAN SERVICES POLICY, RESEARCH, AND CONSULTING―WITH REAL-WORLD PERSPECTIVE.

PREPARED FOR:

The Administration for Community Living

SUBMITTED BY:

The Lewin Group, Inc.

DATE:

March 2016

Page 2

National Family Caregiver Support Program Process Evaluation

The Lewin Group | www.lewin.com TOC vii

Contents

I. National Family Caregiver Support Program Process Evaluation ....................... 1
II. Evaluation Objectives .............................................................................................. 3
III. Literature Review ..................................................................................................... 4

Methodology ............................................................................................................. 4
Literature Review Outline .......................................................................................... 5
Section I: Nature and Extent of Informal Caregiving ................................................. 5

Characteristics of Caregivers and Care Recipients ........................................................... 5
Numbers of Informal Caregivers ....................................................................................... 6
Work of Informal Caregivers ............................................................................................ 7
Pathways into Caregiving ................................................................................................. 8

Section II: Impacts of Informal Caregiving ................................................................ 8
Impacts on Mental and Physical Health ........................................................................... 8
Impacts on Family Life and Relationships ...................................................................... 10
Impacts on Employment and Finances ........................................................................... 10
Positive Impacts .............................................................................................................. 11

Section III: Supports for Informal Caregivers .......................................................... 12
Respite Care Services ...................................................................................................... 13
Counseling, Education, and Establishment of Support Groups ...................................... 13
Information, Referral and Access Assistance ................................................................. 14
Supplemental Services .................................................................................................... 15

Section IV: Special Issues in Informal Caregiving ................................................... 15
Caregiving among Members of Racial and Ethnic Minority Groups .............................. 16
Caregiving and Socioeconomic Status ............................................................................ 17
Female Caregivers .......................................................................................................... 18
LGBT Caregiving .............................................................................................................. 19
Informal Caregiving and Dementia ................................................................................ 20
Informal Caregiving and Mental Illness .......................................................................... 22

Section V: Policy Context ........................................................................................ 23
Impact of Demographic Changes ................................................................................... 23
Importance of Caregiver Contributions .......................................................................... 23
Caregiver Policies ............................................................................................................ 24

IV. Data and Methodology .......................................................................................... 26
NFCSP Sampling Design ........................................................................................ 26
Survey Instrument Development ............................................................................. 27
Survey Response Rates ......................................................................................... 27

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Results

The Lewin Group | www.lewin.com Page 50



Answer Frequency Percent

Our family caregiver support program receives relevant caregiver intake
data from other programs (either verbally or electronically) 15 34.9%

We have, but do not require, a standardized intake process for
caregiver support in our state 6 14%

Other (please specify) 5 11.6%

Does not apply 1 2.3%

Total (n=43) - NA

Further examination of SUA intake processes revealed that nearly one-half (47.1 percent) of
SUAs in the South reported a standardized intake process for caregiver support compared with
smaller proportions in other regions. More than one-half of SUAs in the South (52.9 percent)
indicated NFCSPs share relevant caregiver intake data with other programs in which the
caregiver might be eligible for support compared with only 25.0 percent of Midwestern SUAs
and 23.1 percent of Western SUAs. Please see Appendix D for additional information.
SUAs were asked, too, about State policies around screening activities for caregiver support
services. Many SUAs (41.9 percent) responded that their NFCSP shares relevant screening data
with other programs for which the caregiver might qualify. An identical number of SUAs
reported that they require a standardized data set, but the AAA or the individual providers
develop their own screening processes. Table 31 summarizes the requirements and policies
(including data sharing) associated with caregiver screening for NFCSP services, displaying the
frequency and the percentage for responding SUAs. SUAs could select all that apply.

Table 31: SUA Policies for NFCSP Screening

Answer Frequency Percent

Our family caregiver support program shares relevant screening data with
other programs in which the caregiver might be eligible for support (either
verbally or electronically)

18 41.9%

The state requires a standardized data set but the AAA or individual
providers can develop their own screening process. 18 41.9%

We require a standardized screening process for caregiver support in our
state 15 34.9%

Our family caregiver support program receives relevant caregiver
screening data from other programs (either verbally or electronically) 14 32.6%

We have, but do not require, a standardized screening process for
caregiver support in our state 4 9.3%

Does not apply 4 9.3%

Other (please specify) 4 9.3%

Total (n=43) - NA

AAA Intake and Screening
AAAs were asked about their intake and screening processes, including whether they have a
standard set of questions or steps to determine whether a caregiver is present when a consumer

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Results

The Lewin Group | www.lewin.com Page 51



calls. Among the more than two-thirds (68.3 percent) of AAAs that have these tools, almost all
(90.2 percent) have a standard process for following up with the caregiver.

Only 61.9 percent of medium-size AAAs reported having a standard set of questions or steps to
determine whether a caregiver is present compared with 70.9 percent of large AAAs and
69.9 percent of small AAAs, a noteworthy data point. Additionally, 65.7 percent of large AAAs
responded that they have a standard process for following up with the caregiver compared with
61.7 percent of small AAAs and 54.5 percent of medium AAAs. Please see Appendix D for
more information.

When AAAs were asked whether intake and screening are separate activities for caregiver
support services, fewer than one-half (42.4 percent) responded affirmatively; 54.8 percent noted
that intake and screening are not separate activities for caregiver support.

Queries were posed concerning activities that apply to intake and screening for caregiver support
in an AAA’s PSA, too. This process evaluation is reporting on the AAAs’ responses for which
intake and screening are not separate activities. Tables displaying responses from the AAAs that
maintain intake and screening as separate activities appear in Appendix C.

AAAs described who conducts the initial intake and screening for their NFCSP services. At most
AAAs (62.0 percent), general I&R staff manage these initial processes, although a specific
caregiver unit performs this work at 30.4 percent of AAAs. Local service providers are
responsible for these tasks at 26.6 percent of AAAs.

Table 32 lists the entities that conduct intake and screening for the NFCSP at the AAA level,
displaying the frequency and the percentage for responding AAAs.

Table 32: Entities Conducting NFCSP Intake and Screening at AAA Level

Answer Frequency Percent

General I&R at AAA 147 62.0%

Specific caregiver unit at AAA 72 30.4%

Local service providers 63 26.6%

ADRC (if entity other than the AAA) 38 16.0%

Other 8 3.4%

Don’t know 1 0.4%

Total (n=237) - NA

Forty-four percent of AAAs reported that intake and screening came about as a result of the
NFCSP under which the process includes information about the care recipient for the majority of
AAAs (97.5 percent).

Assessment and Reassessment
Assessment and reassessment activities in which SUAs, AAAs, and LSPs engage are critical for
determining how clients receive services. To further understand these strategies, agencies and
other organizations were asked for information about the policies guiding these processes.

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