National Family Caregiver Support Program (NFCSP) Process Evaluation

Aging Network Webinar
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Agenda

• NFCSP (Title III-E) Background

• NFCSP Evaluation Goals and Survey Topics

• NFCSP Evaluation Methodology 

• State Unit on Aging (SUA), Area Agency on Aging (AAA) and Local Service 

Provider (LSP) Survey Highlights

– Development and Administration

– Targeting of Special Populations, Prioritization and Wait Listing

– Assessments

– Respite and Supplemental Services

– Program Challenges

• Next Steps
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NFCSP (Title III-E) Background

• Founded in 2000 as part of the Older Americans Act reauthorization

• Federal investment in supporting caregivers who provide care and 

assistance to aging adults and grandparents raising grandchildren

• Leveraging resources to support individuals who prefer to age in their 

own homes and communities – as opposed to institutional settings –

through lower-cost, non-medical services and supports
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NFCSP Evaluation Objectives

1. Provide information to support program planning, including an 

analysis of program operations;

2. Develop information about program efficiency; and,

3. Assess program effectiveness in determining community and client 

needs, targeting and prioritizing, and providing services to family 

caregivers.

Final process evaluation report is expected to be released in Summer 

2016.
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NFCSP Webinar Housekeeping Items

• All attendees are in “listen only” mode

• Please input questions into the chat box or the Q&A

• We will compile your questions after the webinar and send responses 

to all attendees 

Group Chat Q&A
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NFCSP Process Evaluation Team
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NFCSP Process Evaluation Roles
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Methodology

National Family Caregiver Support Program – Process Evaluation
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Survey Methodology

• Survey Development and Outreach:

– Developed a comprehensive internet survey to address ACL needs

– Covered a range of topics

Survey Sampled Dates Response rate

SUA All 54 Jan-May 2015 100%

AAA All 619 Jan-July 2015 73%

LSP 579 sampled from all 

responding AAAs

Aug-Dec 2015 68%
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Remarkable Findings

National Family Caregiver Support Program – Process Evaluation
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Remarkable Findings: SUA Survey
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Remarkable Findings: SUA Survey

SUA Changes in Service Offerings Before and After Enactment of 

the OAA NFCSP in 2000 (n=54)

0%

20%

40%

60%

80%

100%

Information (I&R) Respite services Training &

Education

Support groups Caregiver

counseling

Before

After
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Remarkable Findings: SUA Survey

• Over two-thirds (68%) of SUA respondents reported that the NFCSP 

resulted in the creation of standardized eligibility criteria for caregiver 

services
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Remarkable Findings: AAA Survey
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Remarkable Findings: AAA Survey

Changes in Service Offerings Before and After Enactment of the 

OAA NFCSP in 2000 for AAAs (n=446)

0%

20%

40%

60%

80%

100%

Information

(I&R)

Respite services Training &

Education

Support groups Caregiver

counseling

Before - No Prior program

After - No prior program

Before - All AAAs

After - All AAAs
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Remarkable Findings: AAA Survey
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State Unit on Aging (SUA) Survey 

National Family Caregiver Support Program – Process Evaluation
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SUA Survey: Partnerships

• Nine are working with other State agencies to implement NFCSP

– Four are working with departments of health services 

– Three are working with departments of social services 

– Three are working with Medicaid departments 

– Two are coordinating and collaborating with departments of family 

services, especially for services to grandparents caring for grandchildren

• Other partners include Lifespan Respite, State Councils on Developmental 

Disabilities, university extension services, Veterans Affairs, mental health 

departments, and Centers for Independent Living
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SUA Survey: 

Aging and Disability Resource Center (ADRC) Coordination

Has the NFCSP coordinated with ADRCs in any of the 

following ways? (n=50)

Development or implementation of referral/assessment 62% processes

Provision of Options Counseling 62%

Development or implementation of screening protocols 50%

Development or implementation of intake tools 46%

Development or review of policies, guidance or 44% regulations regarding the inclusion of caregiver services

Provision of training 38%

Provision of Care Transitions 24%

NFCSP does not coordinate with the ADRC 12%
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SUA Survey: Barriers limiting integration of NFCSP with other HCBS 

programs

• 31% of responding SUAs said there has been an effort at the state level to use 

the same caregiver and care recipient assessment tools across all HCBS 

programs

What are the major barriers limiting/preventing integration of NFCSP with 

other home and community-based programs in your state? (n=50)

Different eligibility requirements 72%

Different reporting requirements 54%

Different client population than in other programs 52%

Federal regulatory or statutory requirements 34%

Organizational cultural and administrative differences 32%

Complexity of accessing and arranging services 26%

Lack of access to adequate computer technology and... 26%

State regulatory or statutory requirements 24%

Staff has too many responsibilities 22%

Lack of knowledge of opportunities for integration 16%

Low priority given to caregiver support services 12%
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SUA Survey: Selection of Special Training Topics

• 52% of SUAs reported specific training about program data collection 

and reporting

• 44% reported training on Alzheimer’s disease or a related disorder

• 43% reported training focused on caregiver assessment

• 30% of SUAs reported training about grandparents raising 

grandchildren

• 26% reported this focused on caregiver health and well-being
SUA Survey: NFCSP Target Populations

Since program implementation, which special populations of 

caregivers, if any, has your program made a specific effort to serve? 

(n=54)

Caregivers of persons with Alzheimer’s disease or a related 84% disorder with neurological and organic brain dysfunction

Grandparents raising grandchildren and other relative 82% caregivers

Rural caregivers 67%

Racially and ethnically diverse caregivers 63%

Caregivers, Older (age 70+) 49%

Employed family caregivers 31%

Caregivers of veterans 31%

Caregivers, Younger (age 18-25) 14%

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SUA Survey: NFCSP Targeting Activities

Since program implementation began, which of the following activities 

has your program undertaken to address those special populations of 

caregivers? (n=46)

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Targeted marketing and outreach campaigns 70%

Translated or adapted materials in languages other than 54% English

Hired staff or obtained volunteers with specialized knowledge 41% of or skills working with special populations of caregivers

Developed partnerships with VA systems 37%

Developed services to meet specialized needs (e.g., mobile 35% adult day services and mobile I&R units for rural caregivers)

Produced culturally specific and appropriate materials 33%

Developed partnerships with schools 26%

Developed partnerships with employers 20%
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SUA Survey: Criteria for Determining NFCSP Service Priority

44 SUAs reported using criteria for service prioritization

• 68% indicated a diagnosis of Alzheimer’s disease or a related 

disorder with neurological and organic brain dysfunction

• 57% indicated an ADL or IADL impairment minimum or both

• 50% indicated low income level
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SUA Survey: Standardized Processes for Caregiver Assessments

• Most SUAs (59%) reported a standardized process for assessing 

caregiver needs 

– 70% of these SUAs reported using this process for all family caregiver 

program clients, and the remaining 30% reported only using the process 

for specific services

• 41% of SUAs reported not having a standardized process for 

assessing caregivers
SUA Survey: NFCSP Caregiver Assessment Domains

Which of the following domains are included in your standardized 

caregiver assessment? (n=29)

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Care recipient background (demographics, financial status) 86%

Care recipient’s health and well-being (functional and cognitive status) 83%

Impact of caregiving on the caregiver 79%

Resources available to support the care recipient 76%

Resources available to support the caregiver 76%

Caregiver’s perception of care recipient health and functional status 76%

Caregiver’s background and the caregiving situation 76%

Caregiver’s health and well-being 72%

Caregiver’s skills, ability, knowledge or other requirements to provide 59% care

Caregiver’s values and preferences with respect to everyday living and 41% care provision
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SUA Survey: Respite Services

Please check all of the following services that your family caregiver 

support program provides specifically to family caregivers (directly 

through the AAA or local service providers) regarding respite 

services. (n=54)

In-home respite during normal business hours 98%

In-home respite during evenings 87%

Adult day program respite 83%

Overnight in a facility or extended respite (extended respite 76% = 24 hours)

In-home respite overnight 72%

Emergency respite services 69%

Respite weekend, including camps 65%
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SUA Survey: Counseling, Training & Education Services

Please check all of the following services that your family caregiver 

support program provides specifically to family caregivers (directly 

through the AAA or local service providers) regarding counseling, 

education and training. (n=53)

Support Groups 98%

Training on various aspects related to 93% caregiving

Individual Counseling 85%

Family Consultation, Counseling, Meetings 68%
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SUA Survey: Supplemental Services

Please check all of the following services that your family caregiver 

support program provides specifically to family caregivers (directly 

through the AAA or local service providers) regarding supplemental 

services. (n=51)

Home Modification/Repairs 78%

Homemaker/Chore Services 73%

Consumable Supplies 63%

Transportation 63%

Assistive Technology 61%

Emergency Response 51%

Legal and/or Financial Consultation 51%

In-Home Assessment 47%

Cash Grant 25%
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SUA Survey: Supplemental Services for Grandparents Raising 

Grandchildren

Responses were more diverse than those for caregivers of older adults 

but covered many of the same responses 

• Material supplies were the most common responses including: school 

supplies (8) and children’s clothing (5) 

• Home modifications (3) and material aid (7) were also common responses

• Respite (6) was the most common non-goods based services 
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SUA Survey: Monitoring Program Performance

Does your SUA assess client satisfaction? (n=44)

Yes, AAA assesses client satisfaction 59%

Yes, SUA assesses client satisfaction 27%

No entity assesses client satisfaction 14%
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SUA Survey: Family Caregiver Program Challenges

• Significant issues over the next year

– Increasing demand from a growing population

– Limited or decreased funding

– Provider availability in rural areas

• Significant issues over the next three to five years

– Same as above

– Shortage of caregivers

– Increasing costs of providing services

– Increasing complexity of care needs for an aging population

– AAA staffing shortages
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Area Agency on Aging (AAA) Survey

National Family Caregiver Support Program – Process Evaluation
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AAA Survey: Governance

Which of the following best describes the governance of 

your AAA? (n=453)

Independent Not-For-Profit 40%

City/County Govt. 30%

Council of governments or regional planning and 24% development agency

Other 6%
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AAA Survey: Areas Served

Which of the following best describes the area served by your 

organization? (n=457)

Rural 41%

Urban, Suburban & Rural 20%

Urban & Rural 17%

Urban and/or Suburban 13%

Suburban & Rural 5%

Remote & Frontier 3%
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AAA Survey: Important Partners in Caregiving

Please mark up to three of your most important partners 

specifically for administering program (n=409)

Local / state chapter of national organizations 61%

Aging and Disability Resource Center or Aging Resource 52% Center

Health care providers 42%

Elder Abuse Prevention programs, Adult Protective 35% Services (APS), or TRIAD

Caregiver coalitions / respite coalitions 27%
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AAA Survey: Caregiver Program Employees

• Most (82.7%) have a 

dedicated caregiver 

program manager

• Most (85.4%) say that 

position includes other 

duties or focus areas

FTEs by AAA Budget Size

AAA Size Mean Range

> $5.7 million 4.3 .05-60

$2.2-5.7 million 1.9 .04-13

< $2.2 million 1.7 .1-9.3
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AAA Survey: Prior to NFCSP

Prior to NFCSP:

• 28% had caregiver programs 

• 20% with paid program 

manager established position 

2000 or earlier

• 51% didn’t have policy for 

caregivers as clients

Top Services Prior to NFCSP (n=438)
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AAA Survey: NFCSP Services in AAAs

NFCSP Services Offered by AAAs (n=448)

98% 97% 93%

86%

78%

68%

Information

(I&R)

Respite Access

assistance

Training &

Education

Caregiver

Counseling

Support groups
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AAA Survey: NFCSP Implementation

• 88% of AAAs have policies or standardized eligibility criteria that 

defines caregivers as clients

• 71% of caregivers being served by AAA NFCSPs are also eligible to 

receive caregiver support from other state- and locally-funded 

programs, such as state respite programs
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AAA Survey: Targeted Populations

7%

Since program implementation, which special populations of caregivers, if 

any, has your program made a specific effort to serve? (n=443)

Caregivers of persons with Alzheimer’s disease or a related 63% disorder

Grandparents raising grandchildren and other relative 49% caregivers

Rural caregivers 46%

Older Caregivers (age 70+) 43%

Racially and ethnically diverse caregivers 35%

Caregivers of veterans 29%

Employed family caregivers 28%

Younger Caregivers (under age 25)
AAA Survey: Domains of Standardized Assessment

Which of the following areas are included in your AAA’s 

individual-level needs assessment? (n=411)

Care recipient’s health and well-being 84%

Caregiver’s health and well-being 77%

Resources available to support the caregiver 76%

Caregiver’s background and the caregiving situation 76%

Care recipient background 75%

Impact of caregiving on the caregiver 75%

Resources available to support the care recipient 73%

Caregiver’s perception of care recipient health and functional status 67%

Caregiver’s skills, ability, knowledge or other requirements to 56% provide care

Caregiver’s values and preferences with respect to everyday living 49% and care provision

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AAA Survey: Caregiver Service Requests

What are the types of services or information most frequently 

requested on the part of caregivers? (n=434)

Respite care (institutional, in-home, day services) 75%

Federal / State financial assistance programs 27%

Home health care 26%

General information about caregiving 26%

Emotional support 24%

Care coordination 20%
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In-home respite during normal business hours 95%

In-home respite during evenings 71%

Day program respite 68%

In-home respite overnight 52%

Overnight in a facility or extended respite (extended respite 47% = 24 hours)

Emergency respite services 42%

Respite weekend, including camps 42%

What respite services are provided to support caregivers, either 

directly by your AAA or contracted by a grant or contract with a 

provider? (n=441)

AAA Survey: Type of Respite Services Provided
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AAA Survey: Unmet Respite Needs

• Half (52%) of AAAs 

meet respite needs 

“sometimes”

• Four in ten (41%) 

meet “all” or “’most of 

the time”

Caregiver

transportation

Which of the following are common 

reasons caregiver respite needs are 

unmet? (n=42)

87%

25%

18% 17%

Funding Not enough

providers

Lack of trained

providers
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AAA Survey: Quality of Programs – Caregiver Outcomes Measured

You indicated that you measure caregiver program outcomes. 

Which of the following outcomes do you measure? (n=64)

Monitor caregiver burden 75%

Extent of caregiver load / demand 61%

Emotional / mental health 56%

Monitor caregiver depression 53%

Physical health 50%

Balance among caregiving, work, or other life domains 47%

Financial / employment 34%
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AAA Survey: Quality of Programs – Assessing Program Outcomes

Does your AAA use any of the following strategies to assess 

program outcomes related to NFCSP service receipt? (n=429)

Satisfaction survey of program participants 75%

Feedback mechanism (e.g. complaint mechanism, 39% comment box / card)

Changes in caregiver assessments over time 25%

Monitor client ADL / IADL functioning 24%

AAA does not conduct program participants assessment of 11% NFCSP services
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AAA Survey: Service Caps

• Three-quarters of AAAs (74.4%) have service caps

– 37% of AAAs apply service caps to all NFCSP services

• 37% of all AAAs use yearly caps for at least some services

• 36% of all AAAs vary the limit depending on service

• 61% of AAAs that have a policy for service caps indicate that they set 

that policy
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AAA Survey: Criteria used for Service Priority

Top 3 Service Priority Criteria 

for Caregivers

Top 3 Service Priority Criteria 

for Care Recipients

Lack of informal/family support ADL/IADL impairment minimum

Low income Alzheimer’s diagnosis

Mental Health / Emotional Status Low income
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AAA Survey: NFCSP Changes in the last 3 years

In the last 3 years, has your AAA experienced any of the following 

changes to the NFCSP? (n=440)

Increased staff caseloads or responsibilities 51%

Reduced overall program budget 43%

Increased use of technology to support clients 35%

Established a waiting list 30%

Reduced the number of caregivers served 24%

Increased sharing of physical and staff resources 22%
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AAA Survey: Areas for Improvement

• Increased direction & standardization on:

– Forms, assessments, service definitions

• Increased flexibility on:

– Designating funds and services

– Hours of service or types of service

– Eligibility

• Coordination/communication within state

• Streamlining reporting and administration

• Development of outreach materials

• Other: sliding scale fees, coordination with state HCBS, 

unnecessary intrusive questions, and incentivizing providers to 

recommend NFCSP 
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Local Service Provider (LSP) Survey

National Family Caregiver Support Program – Process Evaluation
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LSP Survey Findings
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LSP Survey: Serving Caregiver Clients
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LSP Survey: Employees
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LSP Survey: NFCSP services provided

Respite care 79%

Information & Referral 69%

Training/Education 51%

Support Groups 45%

Case Management 43%

Counseling 42%

Supplemental services 32%

Don’t know 2%

Which of the following services do you provide to NFCSP 

caregiver clients? (n=393)
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LSP Survey: NFCSP respite care provided

What kind of respite care does your organization provide? (n=311)

In-home respite during normal business hours 80%

In-home respite during evenings 56%

Adult day program respite 44%

In-home respite overnight 33%

Emergency respite services 22%

Respite weekend, including camps 22%

Overnight in a facility or extended respite (extended 21% respite = 24 hours)

Other 6%
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LSP Survey: Use of evidence-based caregiver programs

Which of the following evidence-based caregiving 

training/education interventions does your organization provide to 

NFCSP caregiver clients? (n=202)

Powerful Tools for Caregivers 33%

None 31%

Other 21%

Savvy Caregiver 7%

REACH II Interventions 6%

COPE for Cancer Caregivers 0.5%

Coordinated system of care intervention 0.5%

STAR-C Intervention 0.5%
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LSP Survey: Assist with transitions of care

Does your program support caregivers with care transitions of 

their loved ones between any of the following settings? (n=393)

Hospital discharge to home 50%

Nursing home or assisted living discharge to the 42% community

Placement of the care recipient into a nursing facility or 40% assisted living

None of the above 34%

Hospital discharge to nursing home or assisted living 29%
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LSP Survey: Accepting Caregiver Clients
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LSP Survey: Reasons for not accepting a client

Which of the following are common reasons your organization 

ever cannot accept a client? (n=201)

Client has more needs than you can meet 42%

Other (ineligible, lack of funding...) 31%

Not enough workers 28%

Client lives out of range of your transportation services 25%

Safety concerns for workers 25%

Lack of bilingual workers 6%

Transportation for workers 4%
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LSP Survey: Challenges

• LSP recruitment slow: required substantial personal follow-up

• Many LSPs don’t know their contract money is from the NFCSP (in 

contrast with nutrition program)

• Many LSPs do not consider themselves to be providing caregiver 

services: believe they serve only care recipients

– Confusion with other evaluations or surveys

– Don’t want to share or cannot access financial information

– Cannot produce information 

• Don’t have staff or time to complete

– Reduction in funds à fewer personnel

– Busy schedules

– Other evaluations take precedence, e.g. state or AAA
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Discussion

National Family Caregiver Support Program – Process Evaluation
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NFCSP Process Evaluation Results Discussion

• NFCSP was a catalyst for supports and services designed 

specifically for caregivers.

• The Aging Network deploys NFCSP staff to properly serve caregivers 

through hiring managers devoted to this program and routinely 

training staff on caregiver topics. 

• Special caregiver populations are being targeted to address their 

needs. 

• AAAs are engaging in critical partnerships to implement their NFCSP.
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NFCSP Process Evaluation Results Discussion

• The Aging Network is moving toward standardized caregiver 

assessment; however, there is room for growth. 

• Wait lists data was not widely reported by SUAs and AAAs. At the 

local level, LSPs report low rates of inability to accept NFCSP clients.

• Respite is a critical caregiver service. 

• The Aging Network is engaged in regular program monitoring. 

• There are opportunities to integrate the NFCSP with other HCBS 

programs. 
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NFCSP Process Evaluation Recommendations 

• Ongoing NFCSP Communications Across the Aging Network

• Suggestions for Further Research

• Caregiver Assessment and Outcomes

• Funding for the NFCSP
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NFCSP Process Evaluation: Poll

• How do you think the evaluation results present the NFCSP (Title III-E) 

program? 

– Very Positively 

– Positively

– Neither positively or negatively

– Negatively 

– Very negatively 
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NFCSP Process Evaluation Research Team

This research team below completed the work under contract 

HHSP23320095639WC_HHSP23337031T. 

qThe Lewin Group

§ Cindy Gruman, cindy.gruman@lewin.com

§ Ashley Tomisek, ashley.tomisek@lewin.com

§ Kristen Rice, kristen.rice@lewin.com

§ David Fialkow, david.fialkow@lewin.com

qScripps Gerontology Center

§ Jane Straker, strakejk@miamioh.edu

§ Suzanne Kunkel, kunkels@miamioh.edu

§ Heather Reece, reecehr@miamioh.edu

qUConn Health Center on Aging

§ Julie Robison, jrobison@uchc.edu

§ Noreen Shugrue, nshugrue@uchc.edu

§ Janet Caldwell Cover, caldwellcover@uchc.edu

§ Kathy Kellett, kkellett@uchc.edu
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Questions and Contact Information

q Greg Link, ACL

§ greg.link@acl.hhs.gov

§ 202-795-7386

q Susan Jenkins, ACL

§ susan.jenkins@acl.hhs.gov

§ 202-795-7369