JMIR FORMATIVE RESEARCH

Dawson et al

Original Paper

Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility
Study of a Web-Based Weekly Survey
Walter D Dawson1,2,3, DPhil; Nora Mattek1,3, MPH; Sarah Gothard1,3, BS; Jeffrey Kaye1,3, MD; Allison Lindauer1,3,4,
PhD
1

Oregon Alzheimer’s Disease Research Center, School of Medicine, Oregon Health & Science University, Portland, OR, United States

2

Global Brain Health Institute, University of California, San Francisco, CA, United States

3

Department of Neurology, School of Medicine, Oregon Health & Science University, Portland, OR, United States

4

School of Nursing, Oregon Health & Science University, Portland, OR, United States

Corresponding Author:
Walter D Dawson, DPhil
Oregon Alzheimer’s Disease Research Center
School of Medicine
Oregon Health & Science University
3181 SW Sam Jackson Park Road
CR131
Portland, OR, 97239
United States
Phone: 1 5034946976
Email: dawsonw@ohsu.edu

Abstract
Background: Caring for a family member living with dementia is costly. A major contributor to care demands, and therefore
to the costs, are the behavioral symptoms of dementia. Here, we examine the feasibility of ascertaining costs related to caregivingfrom weekly web-based surveys collected during a telehealth-based behavioral intervention study—Support via Technology:
Living and Learning with Advancing Alzheimer Disease.
Objective: This study aims to determine the feasibility and acceptability of using a web-based weekly survey to capture real-timedata on out-of-pocket caregiving expenses and time commitments associated with dementia care. To examine relationships
between behavioral symptoms, care partner reactivity, burden, and out-of-pocket dementia care costs.
Methods: Feasibility was measured by accrual, retention, and data completion by participating care partners. Behavioral
symptoms, care partner reactivity, and burden were collected before and after the intervention from 13 care partners. Weekly
web-based surveys queried Support via Technology: Living and Learning with Advancing Alzheimer Disease care partners about
their out-of-pocket costs associated with care-related activities. The surveys included questions on out-of-pocket costs carepartners incurred from hospitalizations and emergency department use, primary care provider visits, use of paid in-home care or
respite services, use of prescription medications, and use of over-the-counter medications. The surveys also queried the amountof time care partners devoted to these specific care–related activities.
Results: Out-of-pocket costs of dementia care were collected via a web-based weekly survey for up to 18 months. In-homeassistance was the most frequently reported type of out-of-pocket care expense and the costliest. care partners who paid forin-home assistance or respite reported more behavioral and psychological symptoms of dementia behaviors, higher reactivity,and higher burden than those who did not.
Conclusions: This novel web-based weekly survey–based approach offers lessons for designing and implementing futurecost-focused studies and care partner–supportive telehealth-based interventions for Alzheimer disease and related dementias(ADRD). The results correspond with the existing understanding of ADRD in that high family-related out-of-pocket costs are atypical part of the caregiving experience, and those costs likely increase with dementia severity. The results may also offer
potential insights to health systems and policy makers as they seek to implement telehealth-based and related interventions that
seek to better support people living with ADRD and their family care partners.
Trial Registration: ClinicalTrials.gov NCT04335110; https://clinicaltrials.gov/ct2/show/NCT04335110

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Dawson et al(JMIR Form Res 2024;8:e56878) doi: 10.2196/56878
KEYWORDS
Alzheimer disease; caregiving; out-of-pocket costs; behavioral and psychological symptoms of dementia; technologicalinterventions; clinical trials; dementias

IntroductionMore than 55 million people around the world are living with
Alzheimer disease and related dementias (ADRD) [1].
Considered to be the most expensive disease in the United Stateswith annual health and long-term care costs surpassing US $360
billion in 2024, an estimated 6.9 million Americans are livingwith ADRD [2,3]. An important component of the societal costsof ADRD is the family-level financial impacts associated withcaring for an individual living with ADRD, which are often
high and driven in part by the prolonged course and intensityof the disease and the heavy care demands placed on familycare partners. According to the annual Facts and Figures reportby the Alzheimer’s Association, over 11.4 million care partners
in the United States are providing more than US $346.5 billion
worth of uncompensated care each year [3].
A significant contributor to care demands, and therefore thecosts of care, are the behavioral and psychological symptoms
of dementia (BPSD; eg, depression, irritability, agitation, andanxiety), which are commonly experienced by individuals livingwith ADRD [4]. The changing and increasing behaviors as thedisease progresses are some of the most challenging aspects of
the ADRD journey for family care partners [5,6]. The total
lifetime costs of ADRD care are estimated at US $377,621 per
individual (in 2021), while as much as 70% of all the lifetime
costs of care are carried by family care partners through unpaid
care and support, and result in significant out-of-pocket expenses[7,8]. A number of studies have assessed the costs associatedwith behavioral symptoms and dementia using sources such as
health care claims data, physician-reported data, and care partnerinterviews [9-12]. These approaches all have their uniqueadvantages, but also important limitations for understanding
costs. Among these limitations, little is known about the specificrelationships between behavioral symptoms, and theout-of-pocket costs borne by family care partners, or how thosecosts may evolve over time [13].
Support via Technology: Living and Learning with Advancing
Alzheimer Disease (STELLA) is a telehealth-based intervention
designed to address behavioral symptoms through a personalized
approach to teaching family care partners strategies to help
manage behavioral symptoms [14-16]. To better understand thepotential cost-related impacts of this intervention and therelationship between behavioral symptoms and household
ADRD costs, care partners enrolled in the STELLA intervention
completed weekly web-based surveys about the out-of-pocket
costs associated with care-related activities, care partner time
dedicated to those care-related activities, and several physicaland mental health–related questions for both the care partnerand care recipient (Multimedia Appendix 1).
This report’s goal is to provide needed initial evidence on thecosts of caring for a family member with dementia. The primaryhttps://formative.jmir.org/2024/1/e56878

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aim was to determine the feasibility and acceptability of using
a novel method to ascertain out-of-pocket costs associated withdementia care: a web-based weekly survey to capture real-timedata on caregiving expenses and time commitments completed
by care partners. Feasibility was measured by accrual, retention,and data completion. The secondary aims were to examine therelationships between BPSD behaviors and care partner
reactivity (as measured by baseline Revised Memory and
Behavioral Problems Checklist-Frequency [RMBPC-F] andRevised Memory and Behavioral Problems Checklist-Reaction[RMBPC-R] total scores respectively) with self-reported
dementia care costs [17].
We also examined the relationship between care partner burden(as measured by baseline Zarit Burden Index [ZBI] screen total
score) and self-reported dementia care costs [18].
A final exploratory aim was to examine changes in burden andcosts pre- and post-STELLA telehealth-based intervention (seeresults in Multimedia Appendix 2).
These data were gathered during the STELLA behavioral
intervention and follow-up period (up to 18 months). Basic
information on costs was collected prior to and after theintervention. The study used a novel design that provided
granular cost data (collected weekly) during a technology-based
intervention for ADRD care partners, and insight into therelationship between objective measures of burden in relation
to implicit (eg, time) and out-of-pocket costs. Weekly queriesof care partners on out-of-pocket costs allowed for more precise
measurement of fluctuations in ADRD-induced costs that occur
during the trajectory of the disease process that a simple pre-post
survey does not provide. These findings may help prepare for
effective future scaling of this intervention and help to determine
the longer-term financial impacts of implementing this and other
ADRD interventions in the community.

Methods
Recruitment
STELLA participants were recruited from an existing cohort ofparticipants with ADRD, and their care partners, who wereenrolled in the ORCASTRAIT Life Laboratory based at the
Oregon Center for Aging & Technology (ORCATECH).

Intervention
STELLA is a videoconference-based multicomponent
intervention designed to facilitate effective management of the
upsetting behavioral symptoms that come with dementia
progression. In STELLA intervention, professionals (“guides”)
meet with family members (“care partners”) for 1 hour/week
for 8 weeks to identify strategies to address distressingcare–recipient behaviors [14-16]. The goal of STELLA is to
reduce upsetting behaviors that are common in the later stages
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of dementia, and thus care partner burden. We assessed
out-of-pocket costs that are incurred by families.
STELLA was developed from the STAR-Caregiver (Staff
Training in Assisted Living Residences-Caregivers) program[14]. It was modified to be administered via telehealth[15,16,19]. The cost data reported here were captured as partof a STELLA pilot study (ClinicalTrials.gov, NCT04335110)
conducted through the Oregon Roybal Center for Care Support
Translational Research Advantaged by Integrating Technology(P30 AG024978-19).
BPSD behaviors and care partner reactivity were assessed atbaseline and post-STELLA intervention via the RMBPC-F andRMBPC-R total scores (maximum=96) completed via
computerized assessment by care partner [17]. Care partner
burden was measured using a 4-item ZBI screen total score(maximum=16) [18].

Survey Development
To better understand the relationships between behavioral
symptoms and out-of-pocket costs, care partners living with aperson with ADRD who enrolled in the STELLA intervention
completed weekly surveys. Cost-focused questions weredeveloped to be a component of the wider ORCATECH weekly
surveys. The surveys were delivered via email to participants
every Monday morning by ORCATECH using the Qualtrics
survey platform (Qualtrics) using a previously establishedprotocol [20,21]. The weekly surveys included several costand time-specific questions, which focused on the out-of-pocket
costs care partners incurred from hospitalizations and emergency
department (ED) use, primary care providers visits, use of paid
in-home care and respite services, prescription medications, anduse of over-the-counter (OTC) medications while providing
care and support. Questions were designed to be completed ina few minutes or less. To avoid added care partner burden,
estimates of costs for care-related items were asked ofparticipants rather than exact figures. Further, cost estimate
bands (eg, US $1-$100) rather than asking care partners to recall
a specific amount were also used in these cost-related questions
to reduce potential burden. See Multimedia Appendix 1 forweekly cost-focused questions and possible responses. The
amount of time dedicated to care-related activities was alsomeasured through the weekly surveys by asking care partners
how much time they dedicated to these same activities (eg,hospitalizations and ED use, primary care visits, use of paid
in-home care, prescription medications, and use of OTC
medications).

Ethical Considerations
The study protocol was reviewed and approved by the Oregon
Health & Science University institutional review board (approval

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Dawson et al#19306). All human participants provided their informed consent
to participate. Study consent forms were reviewed and approvedby the institutional review board. All due care was taken toprotect the privacy and confidentiality of all study participants
both during and after the study concluded. All data presented
in this work have been deidentified. Therefore, identificationof individual participants in this study is not possible. No
financial compensation was provided to study participants.

Statistical Analysis
Summary statistics (mean, SD; or count, %) were generated forcare partner and care recipient demographics and baseline
clinical measures (dementia severity, presence of behavior
problems, depression, and burden scores). The overall
prevalence of endorsing any out-of-pocket expenses and the 5
subscale expense questions was calculated over all surveys andby care partner. Interval responses for specific cost and timequestions were dichotomized for reporting purposes. Differences
in care partner and care recipient characteristics among those
who ever endorsed assistance or respite costs (including in-homecare) during the study period versus never endorsing these costs
were examined using 2-sample independent 2-tailed t tests forcontinuous variables and chi-square test for categoricalvariables. Differences in pre-post STELLA intervention
measures and costs endorsements were examined using pairedt tests or McNemar chi-square test for matched pairs as
appropriate. Due to the small sample size, we were unable tocontrol for covariates. Analyses were performed using SAS
software (version 9.4; SAS Institute).

Results
A total of 13 care partners and their 13 care recipients livingwith ADRD enrolled in STELLA. Care recipients did not takepart in the STELLA intervention but were consented to assure
ethical use of their data. Two care partner dyads withdrew after
the 8-week STELLA intervention due to worsening health oftheir care recipients, but weekly survey data were collectedduring their participation. This pilot cohort was White
non-Hispanic and highly educated; care recipients were on
average 4 years older than care partners. Care recipient dementia
severity ranged from mild to severe. Care partners initiallyreported relatively high levels of behavioral problems, relatively
high reactivity and moderately high burden. In this small group,
higher BPSD behaviors and care partner reactivity (RMBPC-F
and RMBPC-R total scores) were marginally or significantly
correlated with higher care partner burden (ZBI total score) anddepression (Center for Epidemiologic Studies Depression Scale
total score) [17,18,22]. Characteristics of STELLA study
participants are presented in Table 1.

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Table 1. STELLAa intervention participant characteristics.
Variable

Care partner (n=13)

Care recipient (n=13)

Age (years), mean (SD)72.8 (8.0)

76.6 (9.8)

Sex (female), n (%)

9 (69)

5 (36)

Education (years), mean (SD)

16.3 (1.9)

15.5 (2.5)

Race (White non-Hispanic), n (%)

13 (100)

13 (100)

Years spent caregiving, mean (SD)

4.4 (2.2)

N/Ab

CDR-SOBc, mean (SD)

N/A

10.0 (4.2)

MCId or mild ADe

N/A

5 (38)

Moderate AD

N/A

6 (46)

Severe AD

N/A

2 (15)RMBPC-Ff total score, mean (SD)41.5 (12.0)

N/A

RMBPC-Rg total score, mean (SD)27.5 (14.9)

N/A

CESDh total score, mean (SD)

9.9 (7.2)

N/A

ZBIi total score, mean (SD)

7.7 (2.8)

N/A

Dementia severity, n (%)

a

STELLA: Support via Technology: Living and Learning with Advancing Alzheimer Disease.

b

N/A: data are not applicable or not available.

c

CDR-SOB: Clinical Dementia Rating Scale-Sum of Boxes Scores.

d

MCI: mild cognitive impairment.

e

AD: Alzheimer disease.

f

RMBPC-F: Revised Memory and Behavior Problems Checklist-Frequency.

g

RMBPC-R: Revised Memory and Behavior Problems Checklist-Reaction.

h

CESD: Center for Epidemiologic Studies Depression Scale.

i

ZBI: Zarit Burden Interview.

Feasibility and Acceptability
During the 8-week STELLA behavioral intervention andfollow-up period (up to 18 months) 486 weekly cost surveys
were completed by the 13 care partners for a mean of 37 costsurveys per care partner (SD 24; range 3-81 forms). On average,
care partners completed 66% (SD 28%; range 29%-100%) of
all weekly surveys sent to them. The mean intervention study
time during which forms were completed was 229 days (SD127; range 7-406 days). Generally, care partners found theweekly cost questions acceptable and easy to complete and nottime-consuming. No technical issues were encountered withthe surveys. The average time to complete the costs questions
was under 10 seconds (about 30 seconds if any expenses wereendorsed). Many were motivated to participate in research tohelp other families in the future.

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Types and Prevalence of Out-of-Pocket Dementia Care
Costs
Over the study period, nearly all care partners (n=12, 92%) everreported any dementia care–related expenses not paid for byhealth insurance (eg, Medicare, Medicaid, or private insurance),
and most care partners reported out-of-pocket costs related toprimary care visits, respite care, prescription meds and OTC
items (Table 2). Nearly half (n=214, 44%) of all weekly surveys
endorsed some caregiving expenses. The most frequently
endorsed out-of-pocket dementia care expense (and the costliest)
across all weekly surveys collected was assistance or respite
care (n=164, 77.6% of all surveys with any expenses). We
subsequently focused our interest on the prevalence of assistanceor respite care costs. Of all surveys with dementia care expenses,
94 (44%) paid for prescription drugs, 71 (33%) paid for OTC
items, 41 (19%) paid for primary care visits, and 10 (5%) paid
for ED or hospital visits.

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Table 2. Types of out-of-pocket dementia care–related expenses reported during the study period by care partners (n=13).
Expense Variable

Values, n (%)

Expenses (any)

12 (92)

Emergency department or hospitalization-related

5 (38)

Primary care–related

9 (69)

Prescription medications

11 (85)In-home assistance or respite care

8 (62)

Over-the-counter medications or care items

9 (69)

Specific Costs: Expenses and Time
Care partners were asked to report costs and time for specifictypes of dementia care expenses by choosing one of several“brackets” from US $1 to greater than US $1000 and from lessthan 15 minutes to greater than 5 hours respectively. Whenin-home assistance or respite care costs were reported, the vast
majority (n=149, 90%) paid more than US $100 per week while
49 (30%) reported paying more than US $500 per week. For
ED or hospital visits (n=10), 3 reported paying more than US$1000 out-of-pocket; and five reported spending more than 5hours assisting with the visit (travel time and wait time). Whenprescription drug costs were reported, most paid less than US$100 but a subset (n=15, 16%) paid more than US $100 on
copays. When OTC medication costs were reported, most (n=60,
86%) paid less than US $100 per week. For primary care visits,a large subset (n=18, 44%) paid more than US $100
out-of-pocket for these visits, and 63% (n=5) of respondents
spent 1 hour or more assisting with the visit. The overallfrequency of reported weekly costs categorized by dollar amountfor dementia-related in-home assistance or respite care arepresented in Table 3.

Table 3. Overall frequency of reported weekly costs categorized by dollar amount for dementia-related in-home assistance or respite care.
Amount (US $)Frequency, n

1-100

15

101-20055

201-30016

301-40020

401-5009

501-60038

601-7005

701-8003

801-9002

901-1000

0

≥1001

1

Associations Between Out-of-Pocket Costs for
Assistance or Respite Care and Care Partner or Care
Recipient Characteristics
To investigate the relationship between behavioral symptoms
and costs we examined group differences between care partners
who did and did not pay for in-home assistance or respite careduring the study (Table 4). Of 13 care partners, 8 (62%)
endorsed paying for assistance or respite care and 5 (38%) did
not. Care partners who paid for some assistance or respite care
were relatively younger and more highly educated than those
who did not. Care partners who paid for some assistance or

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respite care had care recipients with higher dementia severity
as measured by Clinical Dementia Rating Scale-Sum of Boxes
Scores. BPSD behaviors and care partner reactivity as measured
by RMBPC-F and RMBPC-R total scores were relatively higher
among those who paid for assistance or respite care [17].
Caregiver burden as measured by the 4-item ZBI score was also
relatively higher among those who paid for assistance or respite
care [18]. Even with a very small sample size, the results suggestthat the frequency of BPSD behaviors, care partner reactivity,and burden are associated with deciding to pay for in-homeassistance or respite care. The effect sizes for RMBPC-F andZBI scores as measured by Cohen d are considered large(d=0.8).

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Table 4. Baseline participant characteristics among care partners who did and did not pay for in-home assistance or respite care during STELLAa.
Variable

Never endorsed paying for assistanceor respite care (n=5)

Endorsed paying for assistanceor respite care (n=8)

P value

Care partner age (years), mean (SD)76.8 (8.2)

69.5 (6.6).10Care partner sex (female), n (%)

4 (80)

5 (63)≥.99

Care partner education, years, mean (SD)14.6 (2.4)

16.8 (1.5).07

Years spent caregiving, mean (SD)

3.8 (1.5)

4.8 (2.6).48

Care recipient age (years), mean (SD)81.2 (10.3)

73.8 (9.0).19Care recipient CDR-SOB , mean (SD)

7.7 (3.5)

11.5 (4.2).12

RMBPC-Fc total score, mean (SD)34.4 (11.0)

46.0 (10.8).09

RMBPC-Rd total score, mean (SD)24.6 (10.8)

29.3 (17.5).61

CESDe total score, mean (SD)

7.2 (7.2)

11.6 (7.1).30

ZBIf total score, mean (SD)6 (2)8.8 (2.9)

.09

b

a

STELLA: Support via Technology: Living and Learning with Advancing Alzheimer Disease.

b

CDR-SOB: Clinical Dementia Rating Scale-Sum of Boxes Scores.

c

RMBPC-F: Revised Memory and Behavior Problems Checklist-Frequency.

d

RMBPC-R: Revised Memory and Behavior Problems Checklist-Reaction.

e

CESD: Center for Epidemiologic Studies Depression Scale.

f

ZBI: Zarit Burden Interview.

Comparison of Burden Measures and Costs Before
and After the STELLA Intervention
There were no significant differences found on burden measuresor costs before and after the STELLA pilot intervention in thissmall cohort (Multimedia Appendices 2 and 3).

Discussion
Principal Findings
The results of this study suggest weekly web-based surveys
focused on out-of-pocket expenses and time associated withcare and support-related activities for someone living with
ADRD are a possible approach to a more direct measurement
method for the longitudinal capture of financial and time costsof caregiving. Overall, participating care partners (n=13) foundthe weekly cost questions to be acceptable, easy to complete,and not time-consuming. The average time to complete thesurvey costs questions was less than 10 seconds orapproximately 30 seconds if any care-related expenses wereendorsed. Our team found high motivation to participate in the
study based on a desire to help others experiencing the dementia
caregiving journey. During the recruitment and onboarding
process, a few participants expressed reticence toward reporting
personal financial information related to dementia care.
However, this reticence was easily mitigated by discussion of
the expense-related questions and further explanation of the
purpose of collecting and analyzing these data. On average,
each care partner completed two-thirds of all weekly surveys
sent to them with moderate variability (mean 66%, SD 28%;
range 29%-100%) suggesting the feasibility of this novel method
for collecting the financial and time costs of caregiving.

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Yet, some of the care partners in our study did not complete all
weekly surveys, and some only completed a few, suggestingthat the surveys may need some revision to ensure they can fit
into the multiple demands on care partner time. In a follow-up
study, a more formal usability acceptance analysis is warranted.
In addition, some type of post-participation stipend (eg, giftcard) may also help with survey adherence. In Table 2, 92%(n=12) of study participants ever endorsed some level ofout-of-pocket care expenses during the monitoring period,
confirming that out-of-pocket expenses are a common part ofthe experience of caring for someone living with ADRD as otherprevious studies have similarly demonstrated [23-25]. Most
care partners (n=11, 85%) ever endorsed paying for prescription
medications and 69% (n=9) ever endorsed paying for OTC
medications or care items, while 62% (n=8) of care partners
ever endorsed paying for assistance or respite care. This alsoaligns with previous ADRD cost-focused studies, which showthat the largest share of annual ADRD out-of-pocket costs isincurred by paying for medications and in-home care assistance[25]. Using weekly cost queries, we showed that this cost burden
can be observed within a period of less than a year.
Not only are ADRD care–related activities costly for carepartners, but also they are often highly time-consuming andincrease in duration along with disease progression [8,26].
Moreover, previous studies have demonstrated that more carepartner time devoted to caring is associated with higher rates
of care partner depression and other poor health outcomes [27].
In terms of our measurement of care partner time dedicated tocare-related activities, that 70% (7/10) of care partner
participants in our study spent 3 or more hours assisting with avisit to an ED or hospitalization for their care recipient is not
surprising given these events are often complex, highly
disruptive, and time-consuming events. Furthermore, existing
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research shows that there is an increased rate of hospitalization
among people living with ADRD compared to people without
ADRD, while the number of potentially avoidable
hospitalizations of people living with ADRD is also increasing[28,29]. This finding reinforces the argument for betterinterventions that are able to reduce the need for ED visits andhospitalizations among persons living with ADRD. Further, interms of weekly reports on the amount of time devoted toprimary care provider visits, 63% (n=5) of respondents spent 1
hour or more assisting with the visit. This also aligns withexisting expectations given that health care visits for a person
living with ADRD are often complex, disruptive, and take a lotof care partner (and health care provider) time in preparationand in attendance [30]. Of all reports on OTC medications, 52%(37/71) of care partners spent 1 hour or more on this activity.
While providing assistance with medications may be a routine
part of the caregiving experience, these findings demonstratethat considerable time is dedicated to this activity on an ongoingbasis. Interventions that can help to minimize the amount oftime dedicated to this activity may be helpful, such as
medication training for care partners.
Of the 13 care partners who participated in STELLA, 8 (62%)
ever endorsed paying for assistance or respite care during thestudy period and 5 (38%) did not. We found no differences
between these 2 groups by baseline care recipient or care partner
age, or years spent caregiving. Care partners who paid for someassistance or respite care were relatively younger and more
highly educated than those who did not. Care partners who paid
for some assistance or respite care had care recipients withhigher dementia severity as measured by Clinical Dementia
Rating Scale-Sum of Boxes Scores. BPSD behaviors and carepartner reactivity, as measured by RMBPC-F and RMBPC-R
total scores, were relatively higher among those who paid forassistance or respite care [12,13,17]. Care partner burden as
measured by the 4-item ZBI score was also relatively higher
among those who paid for assistance or respite care [18].
Despite the small sample size, the results of this study suggestthat the frequency of BPSD behaviors, care partner reactivity,and care partner burden are associated with the decision offamilies to pay for assistance or respite care. This in turnsuggests that telehealth-based interventions such as STELLA
may lower the out-of-pocket costs experienced by families whendementia caregiving, specifically in-home assistance and respite
care costs, which are particularly burdensome for families andhave limited coverage under existing programs or insurance[25]. While new programs such as Medicare’s Guiding an
Improved Dementia Experience Model seek to provide dementia
care partners with much needed support, the out-of-pocket costsof dementia care are likely to remain high for many families[31,32]. Continued use and evaluation of interventions that can
reduce the out-of-pocket costs of dementia is needed.

Limitations
There were several limitations of this study. One limitation is
the small sample of family care partners (n=13). Therefore, any
comparisons made based on the reported P values should bemade with caution. A roller-coaster of events related to the
SARS-CoV-2 (COVID-19) pandemic greatly affected participant
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enrollment in this study, a common challenge faced by many
clinical trials during this time frame including those in ADRD
research [33-35]. These pandemic-induced challenges included
health system restrictions regarding being seen or assessed inhome or in clinic settings (although the STELLA intervention
and web-based queries were all delivered remotely) as well as
when relaxed, contact requirements became available potential
study participants remained hesitant to engage in research [36].
Reduced mobility, increased telehealth usage, and reductionsin in-person caregiving during the COVID-19 pandemic could
also have affected this study’s results [37-39]. The results ofthis study are thus to be interpreted in the context that some ofthe expenses being reported were incurred under pandemic
conditions. Future studies will need to examine thismethodology, and the data collected under different conditions
and with larger numbers of participants.
Further, all study participants were based within a small
geographic area: Oregon, United States. Sociodemographic
characteristics of participants including race, ethnicity, andeducation were also highly homogenous as all 13 care partners
and their care recipients were White, non-Hispanic, and not
representative of the wider population of older adults in the
United States. Using a digital survey may have resulted in amore digitally connected and internet savvy sample of older
adults therefore contributing to a homogenous sample [40].
Taken together, these limitations make the generalizability ofthese results beyond the regional context difficult. A larger
study, one that uses weekly surveys of ADRD care partners
engaged in this type of intervention that can assess feasibility
across diverse populations is needed. The data collected in thisstudy can help in the design of that larger study. Indeed, theresults from this study may help prepare for effective future
scaling of the STELLA intervention as well as the efficacy ofthis intervention [41]. As this study shows that the collectionof weekly cost data through a web-based survey-based approachis possible, future studies could implement this approach to datacollection, demonstrating how costs may shift over time andwhen costs may increase or decrease based on a broad set ofcare and support needs of people living with ADRD. In addition,
this methodology could readily be implemented in all types ofintervention studies, including pharmacologic interventions, todetermine the cost efficacy of an intervention in potentiallyreducing the expenditures and effort of care.
Another limitation of this study was the collection of cost data
through the use of cost estimate brackets (ranges). While thisapproach was intended to reduce the potential burden on
participating care partners so they would not have to recall exact
figures, we were unable to capture exact costs of care. A further
limitation of this study is that it did not collect data on incomeor the insurance status of participants. Collecting income data
would help to elucidate the financial impacts out-of-pocket
dementia care costs have on families across socioeconomic
groups and the decision to seek paid support. Further, while it
is likely that Medicare is the primary source of health coverageof study participants due to an average participant age of 77
years, Medicaid status (dual eligible) or whether they received
Veterans Administration (VA) services is not clear. While somecoverage of in-home care and respite is covered through
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Medicaid and the VA (ie, VA Caregiver Support Program),
both have strict eligibility requirements. A more detailed
understanding of gaps in coverage and out-of-pocket care costs
is important for future program and policy development to bettersupport dementia care partners and care recipients.

Conclusions
A longitudinal weekly survey-based approach to quantifying
care partner out-of-pocket costs and care partner time dedicatedto care activities is a novel approach to assessing real-world
costs related to caring for someone living with ADRD. The

Dawson et al
preliminary findings of our study correspond with the existing
literature and general understanding of ADRD that highfamily-related out-of-pocket costs are a typical part of the
caregiving experience, and those costs likely increase withdementia severity. Both the challenges and benefits of thissurvey-based approach can offer lessons for designing andimplementing future ADRD cost–focused studies. The results
may also offer potential insights to health systems and policy
makers as they seek to implement telehealth-based and related
interventions that seek to better support people living with
ADRD and their family care partners.

Acknowledgments
Financial support for the conduct of the research reported in this manuscript was supported by multiple grants, including thosefrom the National Institute on Aging (P30AG024978, R01AG024059, P30AG008017, and P30AG066518).

Data Availability
The data sets generated during and analyzed during this study are available from the corresponding author on reasonable request.

Conflicts of Interest
WDD reports grant funding and contracts from the Alzheimer's Association/Global Brain Health Institute (GBHI ALZ
UK-20-640170), Latin American Brain Health Institute (BL-SRGP2021-03), American Nurses Foundation (Izumi: PI), Oregon
Health Authority (Interagency Agreements #171319, #18151, #181488, and #179517), and Health Resources & Services
Administration (Byerly: PI; U1Q53044), all outside of this work. JK has (in the past 2 years) received research support awarded
to his institution, Oregon Health & Science University (OHSU), from the NIH, NSF, and AbbVie. He has been directly compensatedfor serving on a Data Monitoring Committee for Eli Lilly, as a consultant to Boston Scientific, and as an external Advisory
Committee member for the Rush and Stanford University Alzheimer's Disease Research Centers. He receives reimbursement
through Medicare or commercial insurance plans for providing clinical assessment and care for patients. He serves on the editorialadvisory board and as review editor of the journal, Alzheimer's & Dementia and as associate editor for the Journal of Translational
Engineering in Health and Medicine. OHSU and has a financial interest in Life Analytics, Inc, a company that is developing
remote monitoring software technology not used in this research study. The nature of this financial interest relative to this study
has been reviewed by the Research Integrity Office at OHSU. A plan is in place to help ensure that this research study is notaffected by financial interest. No other authors have interests to declare.
JK has (in the past 2 years) received research support awarded to his institution, Oregon Health & Science University (OHSU),
from the NIH, NSF, and AbbVie. He has been directly compensated for serving on a Data Monitoring Committee for Eli Lilly,
as a consultant to Boston Scientific, and as an external Advisory Committee member for the Rush and Stanford University
Alzheimer's Disease Research Centers. He receives reimbursement through Medicare or commercial insurance plans for providing
clinical assessment and care for patients. He serves on the editorial advisory board and as review editor of the journal, Alzheimer's& Dementia and as associate editor for the Journal of Translational Engineering in Health and Medicine. OHSU and has a financial
interest in Life Analytics, Inc, a company that is developing remote monitoring software technology not used in this researchstudy. The nature of this financial interest relative to this study has been reviewed by the Research Integrity Office at OHSU. A
plan is in place to help ensure that this research study is not affected by financial interest.
No other authors have interests to declare.

Multimedia Appendix 1
Weekly survey cost-focused questions.
[DOCX File , 20 KB-Multimedia Appendix 1]

Multimedia Appendix 2
STELLA (Support via Technology: Living and Learning with Advancing Alzheimer Disease) pilot intervention efficacy results.
[DOCX File , 15 KB-Multimedia Appendix 2]

Multimedia Appendix 3
Prevalence (count) of types of care expenses during weeks before an after the STELLA (Support via Technology: Living and
Learning with Advancing Alzheimer Disease) pilot intervention.
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Dawson et al[PNG File , 15 KB-Multimedia Appendix 3]

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Dawson et al

Abbreviations
ADRD: Alzheimer disease and related dementias
BPSD: behavioral and psychological symptoms of dementia
ED: emergency department
ORCATECH: Oregon Center for Aging & Technology
OTC: over-the-counter
RMBPC-F: Revised Memory and Behavior Problems Checklist-Frequency
RMBPC-R: Revised Memory and Behavior Problems Checklist-Reaction
STAR-Caregiver: Staff Training in Assisted Living Residences-Caregivers
STELLA: Support via Technology: Living and Learning with Advancing Alzheimer Disease
VA: Veterans Administration
ZBI: Zarit Burden Interview

Edited by A Mavragani; submitted 31.01.24; peer-reviewed by S Marzouk, C Tsou; comments to author 18.04.24; revised version
received 28.06.24; accepted 25.07.24; published 25.09.24
Please cite as:
Dawson WD, Mattek N, Gothard S, Kaye J, Lindauer A
Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility Study of a Web-Based Weekly Survey
JMIR Form Res 2024;8:e56878
URL: https://formative.jmir.org/2024/1/e56878
doi: 10.2196/56878
PMID:©Walter D Dawson, Nora Mattek, Sarah Gothard, Jeffrey Kaye, Allison Lindauer. Originally published in JMIR Formative
Research (https://formative.jmir.org), 25.09.2024. This is an open-access article distributed under the terms of the Creative
Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The
complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright andlicense information must be included.

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