National Family Caregiver Support Program (NFCSP) Outcome Evaluation 

November 28, 2018

Responses to attendee questions posed during the webinar 

Question Response

Did you keep any data on those who identified 

at the second point as no longer being

caregivers whether it was because the care 

recipient had transitioned into a facility or if 

there was another reason? Such as caregiver 

burden? Impact on caregiver employment?

Yes, at follow-up interviews, caregivers were asked if they were still the Care Recipient’s (CR) caregiver. 

One-third of all caregivers reported that they were no longer CR’s caregiver (N=379). We offered them 

reason categories. Of those who stopped, 39% stopped because of CR’s death, 24% because of CR’s 

institutionalization, 2% because the CR does not need care anymore, 6% because someone else 

became the CR’s caregiver, and the remaining 28% either responded said “for another reason” or did 

not provide a reason. We did not ask if they stopped due to the impact of caregiving.. 

Report section 5.1.7.

When was the Zarit burden measurement 

done? At the first point or second?

The four Zarit Burden items were collected at baseline, 6-month follow-up, and 12-month follow-up.

We hope to learn what percentage of the 

caregivers evaluated were caring for a person 

living with ADRD. 

Among all caregivers at baseline, 52.2% responded “Yes” to “Has a doctor ever told you or CR that he 

(or she) had Alzheimer’s disease, dementia, or other type of memory problem?” 

Report section 5.2.2

Would the appropriateness of HME be a factor 

in caregiver burden? For example, use of a 

floor bed vs standard bed. Policies/practices 

concerning accessibility of "right" equipment 

are underappreciated in SO many caregiver 

studies.

Assistive devices and technologies can be an important component of providing care to individuals 

with physical limitations. Having the correct equipment in place is critical. Under the NFCSP, states and 

AAAs are able to develop their own policies and procedures for determining which types of equipment 

will be provided and under what circumstances. 

Did I understand that individuals receiving 

HCBS were referred to NFCSP but the reverse 

was not occurring? Do other states allow 

individuals on HCBS receive NFSCP at the same 

time?

Yes, caregivers receiving HCBS at baseline were more likely to start NFCSP services, but caregivers 

using NFCSP at baseline only had a slight (not significant) increased likelihood of using HCBS in the 

future.

Each state/AAA is responsible for developing policies and procedures for implementing and 

administering all programs funded by the Older Americans Act, including the NFCSP. In this regard, 

states may permit a family caregiver to receive services under the NFCSP as well as other HCBS if they 

meet the eligibility criteria for the program and there is a demonstrated need.
Question Response

For all of the results that were statistically 

significant (e.g., p< .05) will effect sizes be 

included in the final report? Effect size 

information will help to quantify the degree of

difference that is "real"

Where appropriate, the report does provide various effect size indices such as odds ratios, correlation 

coefficients, and beta weights for both statically significant and non-significant results. This will enable 

readers to evaluate the magnitude of effects and relative contribution of factors of interests in a 

model, regardless of p-values and sample sizes used in various analyses. Further, the report provides 

standard deviations, standard errors, and confidence intervals, as needed, so that readers can gauge 

the amount variation for statistics and parameter estimates.

Will the assessment tools be shared? Yes, assessment tools were collected during the Process Evaluation. These are available here and here.

Could you please share the specific education & 

training programs that Title 3 is funding that 

address specific care needs or legal/financial 

matters?

At the present time, we are not aware of specific programs funded under Title III that address legal 

and/or financial matters. ACL currently funds the Women’s Institute for a Secure Retirement (WISER) 

to conduct financial literacy training targeted primarily to women and we recently awarded a grant to 

the Alzheimer’s Association to begin developing tools and training on financial literacy and

preparedness for family caregivers, however that project is brand new and just getting started. 

Did the evaluation only look at caregivers 

caring for older adults or did the evaluation 

also look at the other populations covered 

under NFCSP (grandparents caring for children 

and caregivers of adults with disabilities)?

The NFCSP outcome evaluation described in this report focused on these two groups of caregivers:

1. Adult family members or other informal caregivers age 18 and older providing care to individuals 

age 60 and older, and

2. Adult family members or other informal caregivers age 18 and older providing care to individuals 

of any age with Alzheimer’s disease and related disorders.

 

The evaluation did not include:

• Older relative caregivers (excluding parents) age 55 and older providing care to children under age 

18, and

• Older relative caregivers (including parents) age 55 and older providing care to adults ages 18 to 59 

with disabilities.

Do you have a sense of what caregiver 

assessment tools were being used. For 

example, T-Care or something developed in 

house by the AAA's?

T-Care is being used extensively in several states, including Washington State, Michigan and Georgia. 

However most states and AAAs seem to be using assessment instruments of their own design, often 

incorporating scales and measures that have been tested and determined reliable. As part of the 

Process Evaluation completed in 2016, ACL collected examples of assessment instruments in use by 

states and AAAs. Those examples are posted on ACL’s web site, here and here.

Kate said that results did not show a significant 

effect of NFCSP on the five outcomes. What 

were the 5 outcomes being referred to?

The five caregiver outcome measures that were focused on in this evaluation were: mental health, 

physical health, caregiver burden, caregiver satisfaction, and caregiver confidence. Among the full 

sample (not restricted to 4+ hours of weekly respite or at least one reported use of an educational 

service) program impacts were not found. Although still not statistically significant, a minimum amount 

of NFCSP respite care had a positive impact on caregiver burden trends and educational services had a 

positive impact on caregiver confidence trends.
Question Response

How do define HCBS as used in this 

presentation? And isn't it possible that by 

virtue of asking a caregiver to identify their 

mental/physical/ burden status allows them to 

come to terms with the burden--permission to 

express burden. And then perhaps the burden 

remains there but doesn't worsen with 

services?

1. Caregivers were asked if they received these 14 categories of services that were considered HCBS: 

Help with applying for services; Case management; Training on attending to recipient’s medical 

needs; Legal assistance; Incontinence supplies, home modification such as grab bars, ramps; 

Nutritional supplements such as Ensure or Boost; Transportation; Home delivery meals; 

Congregate meals; Mental health services; Homemaker services; Home health aide that was not 

respite care; Any other services.

2. Yes, there could be “survey bias” that may enhance or diminish an individual’s perception of 

burden or well-being. However, there should not be any systematic bias that differs between the 

Program and Comparison caregivers. 

Report Section 7.4

In the report did you distinguish the results of 

the Zarit burden measurement at each 

measurement point as opposed to blending 

those results as one?

The Burden scores were not blended or averaged across the timeframes. For the DiD analysis, we 

measured the change in burden from Time 1 (baseline) to Time 2. For each caregiver, Time 2 indicated 

either 6-month or 12-month measurement, specific to each caregiver’s latest completed survey.