Engaging Caregivers to use an Evidence-Based Intervention for Medicaid Beneficiaries with Alzheimer’s Disease: A Pilot Study

doi:10.21203/rs.3.rs-1901975/v1

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Research Article

Engaging Caregivers to use an Evidence-Based Intervention for Medicaid Beneficiaries with Alzheimer’s Disease: A Pilot Study

https://doi.org/10.21203/rs.3.rs-1901975/v1

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Background

Difficulty with physical and cognitive function occurs in those with Alzheimer’s Disease, and most have an informal caregiver. Caregivers were engaged to assist clinicians with use of an intervention to manage function. The aims were to determine clinician knowledge uptake/satisfaction with training; feasibility, acceptability of and satisfaction with the intervention by caregivers; and intervention effect (pre/post) on outcomes of beneficiaries with Alzheimer’s Disease.

Methods

A 5-month qualitative/quantitative methods pilot study was conducted in 3-Medicaid Home and Community-based Services sites in Michigan. Clinicians were trained to engage caregivers to use a toolkit to assist with providing the intervention used in our Parent trial to beneficiaries. Socio-demographic characteristics of participants; clinician knowledge and satisfaction; caregiver self-efficacy, feasibility, acceptability, usability, and satisfaction with intervention; and beneficiary activities of daily living, pain, depression, falls, emergency department visits, and hospitalizations (pre-/post-intervention) were collected. Descriptive statistics, counts, proportion comparisons, paired t-tests, matched pairs t-tests, McNemar’s tests, and thematic analyses were used to examine data.

Results

116 clinicians, 50 informal caregivers, and 52 beneficiaries consented. Socio-demographic characteristics of participants were as expected. Clinician knowledge and satisfaction were high. Caregiver self-efficacy increased significantly from pre- to post-intervention, and feasibility, acceptability, and usability mean scores ranged between 8 and 9 on a 0–10 scale throughout intervention period. There were no significant changes in beneficiary outcomes over the 5-month time period.

Conclusions

Engaging informal caregivers to assist with providing an established intervention to those with dementia was successful.

Trial registration: ClinicalTrials.gov, NCT03634033; date registered August 16, 2018. https://clinicaltrials.gov/ct2/show/NCT03634033

Informal Caregivers

Engagement

Medicaid Home and Community-based Services

Alzheimer’s Disease

Dementia

This pilot study added care tailored to the needs of those with Alzheimer’s Disease or other dementias to an evidence-based intervention (CAPABLE) to inform future studies, clinical care, and health policy.
Clinicians in a Medicaid Home and Community-based Services (HCBS) program were trained to engage informal caregivers to assist with providing an evidence-based intervention (CAPABLE) to those with Alzheimer’s Disease or other dementias.
Engaging informal caregivers to assist clinicians with providing an evidence-based intervention to those with Alzheimer’s Disease or other dementias was feasible and acceptable; and the adapted intervention (CAPABLE) was usable.

There are over 55 million people age 65 and older living with Alzheimer’s Disease (AD) or other dementiasand the number is projected to reach 139 million by 2050. [1-3] Those with dementia develop difficulty with physical and cognitive function over the course of the disease, necessitating the need for unpaid care. [1] As a result, there are 16.3 million informal caregivers who care for someone with dementia in the United States. [1, 4, 5]Engaging informal caregivers to assist with the use of interventions known to be effective at managing the care of those with AD or other dementias should be viewed as a public health priority.

Parent trial

This pilot study was conducted as part of a parent trial [6, 7]that implemented an intervention statewide in a Medicaid Home and Community-based Services (HCBS) program.The parent trial’s outcomes were adoption and sustainability of the intervention at the waiver sites; clinician’s self-efficacy and attitude toward evidence-based practice and deployment of an implementation strategy bundle on adoption and sustainability of the intervention; and beneficiary outcomes (instrumental activities of daily living [IADLs], activities of daily living [ADLs], depression, pain, falls, emergency department [ED] visits, and hospitalizations).

Medicaid Home and Community-based Services Program

Medicaid HCBS 1915(c) programs support low-income, disabled, or older adults who are living in the community. [8] The Michigan HCBS program cares for 12,000 beneficiaries who are eligible for nursing home admission, need assistance with IADLs or ADLs, have income less than 300% of the Federal poverty level, and have an informal caregiver. [9] Usual care includes registered nurse (RN) and social worker (SW) care management and 19 services (e.g., transportation, counseling, meals, personal care, and medication management). [9] More than 15% of beneficiaries in the Michigan HCBS program have a diagnosis of AD or dementia, which is likely to be underreported. [10]

Intervention

The intervention used in the parent trial is described in detail in our protocol paper. [6] The intervention evolved from ABLE (Advancing Better Living for Elders), which included 5 occupational therapy (OT) home visits over 12-weeks to install assistive devices, modify the home, and teach energy conservation and one physical therapist visit to address functional concerns. [11, 12] CAPABLE (Community Aging in Place, Advancing Better Living for Elders) expanded on ABLE, increased to 6 OT visits, added 4 RN visits to address health issues that impact function, and used a handyman for home alterations (e.g., installs devices and environmental modifications) over 16-weeks.[13, 14]CAPABLE was modified to fit the Michigan HCBS program, added SW to address social and emotional needs and an aging-in-place toolkit (e.g., topics on bathing, constipation, and depression) to support self-management; allowed flexibility in the number and type of home visits based on need; and limited home alterations modifications to what was medically necessary (Medicaid policy). [15]

Beneficiary Participation

Of beneficiaries who were eligible to receive the intervention in the parent trial, 20.1% did not participate due to poor cognition or inability to follow directions. [6, 7] Cognitive decline with worsening or more frequent confusion or memory loss is one of the earliest signs of dementia. [1]

Problem

To the best of our knowledge, the parent trial intervention had not been tested in those with AD or other dementias, nor was engagement of informal caregivers a component of the intervention. [6, 7, 11-15] Consequently, the intervention needed to be modified.

Purpose

The purpose of this paper is to describe the engagement of informal caregivers to assist clinicians in providing the intervention from our parent trial to beneficiaries with AD. Objective one was to add AD content and informal caregiver engagement to the intervention. Objective two was to train clinicians how to engage informal caregivers to assist with providing the intervention. Objective three was to examine feasibility, acceptability, usability, and satisfaction of informal caregiver assistance with the intervention. Objective four was to examine beneficiary outcomes.

Study design

A 5-month qualitative and quantitative methods pilot study was conducted. For objective one, descriptive statistics and qualitative design were used to collect data from content experts and 5 consecutively enrolled informal caregivers of beneficiaries with AD in the HCBS program to modify the intervention. Consecutive enrollment is known to be effective in practice-based research. [16-18] For objective two, descriptive statistics and open-ended question design were used to examine clinician knowledge (pre-/post-test) and satisfaction with training. For objective three, descriptive and pre-/post-intervention design were used to examine feasibility, acceptability, usability, and satisfaction of caregivers with the intervention. For objective four, pre-/post-intervention design was used to examine beneficiary outcomes. Internal Review Board (IRB) approval of the study protocol were obtained.

Study setting and participants

The setting for our study were three HCBS sites in Michigan from the parent trial. A convenience sample of clinicians, beneficiaries who had an AD diagnosis, and their informal caregivers were included.

Eligibility

Three groups were eligible to participate: clinicians, informal caregivers, and beneficiaries. First, clinicians (RNs, SWs, and OTs) were eligible if they were employed at the waiver sites. Second, informal caregivers of a beneficiary with an AD diagnosis were eligible if they were 18 years of age or older. Finally, beneficiaries were eligible if they were 65 years of age or older with an AD or Dementia diagnosis.

Intervention modification

Three caregiver engagement strategies that are effective are use of short and succinct evidence-based interventions, use of high-quality clinicians, and use of supporting materials that are tailored to the needs of the person being cared for. [19]The parent trial intervention was evidence-based and used high-quality clinicians, however, the supporting materials (toolkit) were not tailored for those with AD or dementia. [6-7, 11-15] Another problem is that older adults’ needs (44.3% of ADLs [e.g., bathing and grooming] and IADLs [e.g., shopping and banking]) are often not met by an informal caregiver. [20]This may be occurring due to an incongruence between caregiver training and competencies needed to perform care. Caregiver competency domains include medical and nursing skills, assessment, collaborating, and communication; [21]however, most training programs focus on problem solving, use of community resources, and communication. [22]This indicates caregivers may need training on assessment, nursing skills, home exercises, and planning. Powell and colleagues [23] recommend use of a toolkit when implementing an intervention; and use of a toolkit is known to increase adherence when using an evidence-based intervention. [24]To address gaps in the toolkit, content tailored to care of those with AD or other dementias and additional nursing skills (e.g., assessment) were needed prior to engaging caregivers to assist with providing the intervention.

Procedures

For objective one, study staff added content to the toolkit from the Alzheimer’s Disease Education and Referral (ADEAR) Center website [25]and the literature. [26]The toolkit was emailed to content experts and mailed to informal caregivers (after consent) for review. Study staff collected data (e.g., edits, additions, deletions, suggestions, and items needing clarity) in an Excel sheet. Data were shared with content experts and an iterative process was used to finalize the toolkit. The revised toolkit was reviewed and approved by the IRB and printed (color, wire bound, with tabs denoting each section) at a cost of $25.32 per toolkit (see Additional file 1).

For objective two, study staff prepared the training module (1-hour, online, see Additional file 2) and surveys in Qualtrics (baseline and pre-test and post-test and satisfaction) for clinicians. An email that included links to the consent, baseline, and pre-test survey; training module; toolkit; and post-test and satisfaction survey was sent to clinicians asking them to participate. If interested, the clinician clicked on the link and completed the informed consent prior to data collection, then completed the training and surveys.

For objectives three and four, beneficiaries with AD and their informal caregivers were identified by managers at the sites, then the manager called the caregiver and beneficiary to explain the study. If both were interested, the manager completed a screening form and notified study staff. After receipt of the screening form, study staff mailed the consent forms and a toolkit to the caregiver, waited a week, then called the caregiver and/or beneficiary to conduct informed consent. If interested, the caregiver and/or beneficiary signed the forms and mailed them to the study staff. For beneficiaries who did not have the capacity to understand informed consent, the caregiver acted as the surrogate, which is common practice in AD trials. [27-29]After receipt of the signed consent forms, study staff informed the site that the caregiver and beneficiary were enrolled and the clinician should provide the intervention. Study staff then completed the baseline, monthly (2-4), and exit surveys via phone and obtained pre-intervention Minimum Data Set-Home Care (MDS-HC) data from the electronic health record.

Measures and data collection

Data on toolkit modifications from content experts and caregivers were collected in field notes. Feasibility data were collected on the screening form (caregivers/beneficiaries) and in online surveys (clinicians). Clinician age, sex, race, ethnicity, discipline, knowledge (pre-/post-test), and satisfaction were collected via online surveys. Caregiver age, sex, race, ethnicity, education level, and relationship to beneficiary (baseline); self-efficacy (baseline/exit); and acceptability, usability, and satisfaction with the toolkit (months 2-4/exit), measured on a scale of 1 to 10, with 10 being the highest, were collected via phone. Beneficiary age, sex, race, ethnicity, and health status (ADLs, IADLs, pain, depression, and falls), ED visits, and hospitalizations were collected from the MDS-HC assessment completed just prior to consent (pre-intervention) and via caregiver phone calls at exit (post-intervention). The General Self-efficacy (GSE) [30] and MDS-HC [31] are described in the parent trial protocol paper. [6]Briefly, the GSE is a 10-item tool (Cronbach’s alpha .79-.90) [30] and the MDS-HC is a self-reported, person-centered assessment for the collection of beneficiary minimum essential nursing data, with reliability and validity, and used in the HCBS program since 1993. [31] Cronbach’s alpha at baseline was .91 for the caregiver self-efficacy scale.

Statistical analyses

Data were summarized using qualitative and quantitative methods. Thematic analysis was used to examine field notes. Descriptive statistics were used to examine socio-demographic characteristics and satisfaction. Feasibility was reflected by the proportion of consenting caregivers and beneficiaries out of those who were eligible and approached. A proportion of caregivers who completed the exit assessment out of those who consented was also used. Counts of toolkit use reported by caregivers (months 2-4 and exit) were summarized to reflect acceptability. Self-efficacy of caregivers at baseline and exit were compared and was summarized using paired t-tests. Preliminary efficacy of the intervention delivered via engagement of informal caregivers to use the toolkit for AD or dementia beneficiaries were summarized from matched pairs t-tests for continuous variables and McNemar’s tests for binary variables.

Intervention modifications (Objective 1)

Two AD content experts and study staff added 9 new sections on AD to the toolkit (advanced care planning; assessment; AD; agitation & aggression; delirium; hallucinations, delusions, & paranoia; physical activity & AD; rummaging & hiding things; wandering); and added additional content to 6 existing sections (bathing, fall prevention, home safety, medication management, pain, and sleep disruption). The 5 informal caregivers who reviewed the toolkit were mean age of 46.4 years (range 33–61; standard deviation [SD] 6.60), 4 (80%) were female and 1 (20%) was male, and 4 (80%) were White and 1 (20%) was African American. Three (60%) had an associate degree and 2 (40%) were high school educated. Caregivers identified 131 edits, items that needed clarification, or suggested changes. Content experts and study staff reviewed the caregiver data, made 30 modifications, and finalized the toolkit.

Clinician Outcomes (Objective 2)

Of the 135 clinicians recruited, 106 (78.5%) agreed to participate (Fig. 1). Mean age were 45.78 years (SD 10.48), 103 (97.2%) were female, 99 (93.4%) were White, and 5 (4.2%) were Hispanic (Table 1). Of those who participated, 58 (55.2%) were RNs and 45 (42.9%) were SWs. Clinician knowledge did not change following training (12.33 [SD 1.80] to 12.28 [SD 2.84]; -0.52 [SD 1.95]). Satisfaction with training content (8.09 [SD 1.60]) and format (7.55 [SD 2.06]), newness of content for caregivers (8.35 [SD 1.50]) and clinicians (7.85 [SD 1.92]), and intent to use the new information (8.23 [SD 1.71]) were high (scale of 1 to 10, with 10 being the highest).

Table 1

Clinicians’ characteristics, training satisfaction, role clarification, newness of content and intent to use, and knowledge.
	N (%) or mean (SD)
Age	45.78 (10.48)
Sex
Female	103 (97.2)
Male	3 (2.8)
Race
White	99 (93.4)
Black or African American	2 (1.9)
Other	5 (4.7)
Ethnicity
Hispanic	5 (4.8)
Discipline
Social Worker	58 (55.2)
Registered Nurse	45 (42.9)
Other	2 (1.9)
	Mean (SD)
Satisfaction with training*
Content	8.09 (1.60)
Format	7.55 (2.06)
Clarification of clinician’s role*	8.35 (1.50)
Newness of training content*	7.85 (1.92)
Intent to use new information*	8.23 (1.71)
	Pre-test Mean (SD)	Post-test Mean (SD)	Change pre-/post-test Mean (SD)
Knowledge score	12.33 (1.80)	12.28 (2.84)	-0.52 (1.95)**
Range of 1–10 *Knowledge score lower on post-test than pre-test; (p < 0.05)

Differences among completers and drop-outs

Differences among caregivers who completed the exit survey and those who dropped out are shown (see Additional file 3). At baseline, there were 50 caregivers and 52 beneficiaries (1 caregiver cared for 3 beneficiaries). At exit, there were 36 caregivers and 37 beneficiaries, as beneficiary attrition occurred but caregiver attrition did not. No differences were found between caregivers who dropped out and those who completed the exit assessment (p > 0.05). Male caregivers had a higher rate of drop out (chi-square(1) = 3.00, p = .08) than female caregivers.

Caregiver outcomes (Objective 3)

There were 58 caregivers recruited and 50 (86.2%) agreed to participate (Fig. 1). Mean age were 63.28 years (SD 11.29), 40 (80%) were female and 10 (20%) male, 44 (88%) were White, 4 (8%) African American, 1 (2%) each Native American or Alaskan Native and more than one race, and 1 (2%) was Hispanic (Table 2). Of those who participated, 26 (52%) completed high school and 23 (46%) were college educated. Over half, or 29 (58%), were a son or daughter, 8 (16%) were a spouse, and the remainder varied (e.g., sibling, niece, and nephew). Self-efficacy improved (baseline 2.67 [SD 0.62], exit 3.42 [SD 0.38], change 0.81 [SD 0.62]; t(34) = 7.70, p < .01) over 5-months. There was high satisfaction with the toolkit content (range: 8.60–9.07) and format (range: 8.95–9.07) and caregivers found the toolkit to be helpful (range: 7.98–8.81).

Table 2

Caregivers’ characteristics, self-efficacy (baseline, exit; change baseline to exit); and satisfaction and helpfulness of toolkit.
	N (%) or mean (SD)
Age	63.28 (11.29)
Sex
Female	40 (80)
Male	10 (20)
Race
White	44 (88)
Black or African American	4 (8)
Native American or Alaskan Native	1 (2)
More than 1 race	1 (2)
Ethnicity
Hispanic	1 (2)
Education (highest level)
High School	26 (52)
College	23 (46)
Middle School	1 (2)
Relationship to beneficiary
Daughter/Son	29 (58)
Other*	13 (26)
Spouse	8 (16)
	Baseline Mean (SD)	Exit Mean (SD)	Change Baseline to Exit Mean (SD)
Self-efficacy	2.67 (0.62)**	3.42 (0.38)	0.81 (0.62)***
	Month 2 Mean (SD)	Month 3 Mean (SD)	Month 4 Mean (SD)	Exit Mean (SD)
Satisfaction with toolkit
Content	8.78 (1.70)	9.03 (1.65)	9.07 (1.44)	8.60 (2.27)
Format	8.95 (1.77)	9.58 (0.84)	9.28 (1.25)	9.33 (1.71)
Helpfulness of toolkit	7.98 (2.16)	8.81 (1.79)	8.79 (1.88)	8.23 (2.34)
One caregiver cared for 3 beneficiaries (“other” relationship with all three). Caregiver self-efficacy scale Cronbach’s alpha .91 at baseline. **Change in self-efficacy is statistically significant t(34) = 7.70, p < .01.

Each section of the toolkit was used more than once (Fig. 2). Caregivers used the toolkit to help care for the beneficiary with AD 813 times: 433 (range 12–21) times the second month, 189 (range 4–11) the third month, 74 (range 3–7) the fourth month, and 117 (range 20–42) at exit (see Additional file 4). On average, caregivers used the toolkit 3.1 times the second month, 4.2 times the third month, 2.7 times the fourth month, and 3.1 times at exit.

Beneficiary Outcomes (Objective 4)

Of the 60 beneficiaries recruited, 52 (86.7%) agreed to participate (Fig. 1). Mean age were 81.23 years (SD 9.27), 40 (77%) were female and 12 (33%) male, 46 (88%) were White, 4 (8%) African American, and 1 (2%) each Native American or Alaskan Native and Asian, and 1 (1.9%) was Hispanic (Table 3). Beneficiary outcomes did not improve nor decline significantly (p > 0.05) after use of the intervention (see Table 3). Falls (15 [29%] and 14 [38%]), ED usage (12 [23%] and 12 [32%]), and hospitalization (7 [13%] and 8 [12%]) were high at baseline and exit. Summed depression (5.52 [SD 8.75] to 4.54 [SD 4.47]), IADL (42.69 [SD 9.67] to 42.22 [SD 11.40]), ADL (22.44 [SD 17.09] to 23.49 [SD 19.56]), and pain (2.85 [SD 2.91] to 5.56 [SD 3.36]) scores did not change significantly (p > 0.05) after use of the intervention.

Table 3

Beneficiaries’ characteristics, ADLs, IADLs, pain, depression, falls, ED use, and hospitalizations at baseline and exit.
	N (%) or Mean (SD)
Age	81.23 (9.27)
Sex
Female	40 (77)
Male	12 (23)
Race
White	46 (88)
Black or African American	4 (8)
Native America or Alaskan Native	1 (2)
Asian	1 (2)
Ethnicity
Hispanic	1 (2)
	Baseline Mean (%)	Exit Mean (%)	Change Baseline to Exit Mean (%)
Falls
None	37 (71)	23 (62)	(-9)
One or more	15 (29)	14 (38)	(-9)
ED usage	12 (23)	12 (32)	0 (+ 9)
Hospitalizations	7 (13)	8 (12)	(-1)
Depression summed score	5.52 (8.75)	4.54 (4.47)	-1.46 (9.92)
IADL summed score	42.69 (9.67)	42.22 (11.40)	-1.00 (7.86)
ADL summed score	24.44 (17.09)	23.49 (19.56)	-1.05 (11.55)
Pain summed score	2.85 (2.91)	5.56 (3.36)	2.69 (3.75)

The intervention used in the parent trial (CAPABLE) [13, 14] in the Michigan HCBS program [15] was modified to support informal caregiver engagement. Content on known gaps in caregiver competencies [21] (e.g., assessment, nursing skills, home exercises, and planning) and care tailored to the needs of a person with AD or other dementias (e.g., managing behavioral symptoms) were added. [19, 21] Acceptability of the intervention was high among clinicians (78.5 to 63.9%), caregivers (86.2 to 60%), and beneficiaries (86.7 to 65%) compared to other trials. [32, 33]

A ceiling effect on clinician knowledge (pre-/post-test 82.2 to 81.9%) may have occurred due to prior training on the intervention, as multiple respondents scored near the upper limit. [34] As in prior work, clinicians were highly satisfied with the training and intended to use the knowledge gained. [7]

Similar to other studies, [35] informal caregiver self-efficacy improved over the course of the study. Informal caregivers used the toolkit often (≥ 3 times a month) and for a prolonged period of time (5-months), comparable to other trials examining use of toolkits for caregivers of those with AD. [36, 37] Notably, caregivers used every section of the toolkit, not just those related to AD.

No difference in beneficiary outcomes were found (pre-/post-intervention) over the course of the trial nor did they decline. However, pain scores increased, although not significantly, given the size of the sample. This may have been due to caregiver report of pain (post) compared to an in-person assessment of the MDS-HC (pre) with a clinician, similar to other studies. [38]

Limitations

One limitation on use of a toolkit may be the cost of printing ($25.32), which may be prohibitive in settings that are financially constrained. Limitations of this study include a pilot pre- to post-design. As beneficiaries age, their outcomes worsen, but this study did not include a control group for a comparison. Also, use of different reporters, clinicians at baseline and caregivers at exit, could have influenced the results as caregivers’ perception of beneficiaries’ function may differ from that of clinicians.

Despite our study limitations, in this sample in the Michigan Medicaid HCBS program, use of the modified intervention was feasible, acceptable, usable, and all users (clinicians, caregivers, and beneficiaries) were highly satisfied. These findings begin to suggest that use of an evidence-based intervention (CAPABLE) may be feasible in those with AD and other dementias when informal caregivers are engaged to assist clinicians in providing care, and further testing is needed.

ADL Activities of daily living

ABLE Advancing Better Living for Elders

AD Alzheimer’s Disease

ADEAR Alzheimer’s Disease Education and Referral

CAPABLE Community Aging in Place, Advancing Better Living for Elders

ED Emergency Department

GSE General Self-Efficacy

HCBS Home and Community-based Services

IADL Instrumental activities of daily living

IRB Internal Review Board

MDS-HC Minimum Data Set-Home Care

OT Occupational Therapist

RN Registered Nurse

SW Social Worker

SD Standard Deviation

Acknowledgements: We are indebted to the many older adults and their informal caregivers, who have given us so much through their participation. We are grateful to the State of Michigan, Michigan Department of Health and Human Services, Long-term Care Services Division, in particular, Elizabeth Gallagher, MPA, for their support in the efforts. Many thanks to the supervisors and staff at the 3 sites, who without their enthusiasm and dedication this study would not have been doable.

Funding: The study was funded by the National Institutes of Aging as an Administrative Supplement (1 R15 AG058193-01A1S1; 7/1/2020 to 8/30/2022) to a Parent Trial (1 R15 AG058193-01A1, 9/1/2018-8/31/2022

Conflicts/competing interests: The authors declare they have no conflict of interests.

Availability of data and materials: Datasets will be available upon request.

Code availability: Not applicable.

Ethics approval and consent to participate: Protocol described here was approved by the University 20-213-H Institutional Review Board. Participants were informed about aims of study and methods for protection of data privacy. Informed consent was obtained from clinicians, caregivers, and beneficiaries. Reports will contain aggregate data allowing no identification of individual participants.

Author Contributions: SS (study concept and design, acquisition of subjects and/or data, analysis and interpretation of data, and preparation of manuscript); AS (study concept and design, data, analysis and interpretation of data, and preparation of manuscript); MS (study concept and design, acquisition of subjects and/or data, analysis and interpretation of data, and preparation of manuscript); VB (analysis and interpretation of data, and preparation of manuscript); AB (data collection, analysis, interpretation of data, and preparation of manuscript).

Alzheimer’s Association. 2022 Alzheimer’s disease facts and figures. https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf. Accessed 8 Feb 2022.
Zhu Y, Chen Y, Crimmins EM, Zissimopoulos JM. Sex, race, and age differences in prevalence of dementia in Medicare claims and survey data. J Gerontol B Psychol Sci Soc Sci. 2021;76:596–606.
Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology. 2007;29:125–32.
National Alliance for Caregiving (NAC) and AARP Public Policy Institute. Caregiving in the U.S. 2015. Washington, DC: NAC and AARP Public Policy Institute; 2015.
Michas F. Alzheimer and other dementia caregivers’ unpaid care in the U.S. 2011–2021. https://www.statista.com/statistics/216673/alzheimer-and-dementia-caregivers-unpaid-care-in-the-us/. Accessed 8 Feb 2022.
Spoelstra SL, Schueller M, Sikorskii A. Testing an implementation strategy bundle on adoption and sustainability of evidence to optimize physical function in community-dwelling disabled and older adults in a Medicaid waiver: a multi-site pragmatic hybrid type III protocol. Implement Sci. 2019;14:60.
Spoelstra SL, Schueller M, Basso V, Sikorskii A. A physical function intervention in community-dwelling disabled and older adults in a Medicaid waiver: results of a multi-site pragmatic hybrid type III cluster randomized trial comparing two implementation strategies. Implement Sci (submitted).
Centers for Medicare & Medicaid Services. Home & Community-Based Services 1915(c). https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html. Accessed 8 Feb 2022.
State of Michigan. MI Choice Waiver Program. https://www.michigan.gov/mdhhs/assistance-programs/healthcare/seniors/michoicewaiver/mi-choice-waiver-program. Accessed 8 Feb 2022.
Stokes AC, Weiss J, Lundberg DJ, Xie W, Kim JK, Preston SH, et al. Estimates of the association of dementia with US mortality levels using linked survey and mortality records. JAMA Neurol. 2020;77:1543–50.
Gitlin LN, Winter L, Dennis MP, Hauck WW. Variation in response to a home intervention to support daily function by age, race, sex, and education. J Gerontol A Biol Sci Med Sci. 2008;63:745–50.
Gitlin LN, Winter L, Dennis MP, Corcoran M, Schinfeld S, Hauck WW. A randomized trial of a multicomponent home intervention to reduce functional difficulties in older adults. J Am Geriatr Soc. 2006;54:809–16.
Szanton SL, Leff B, Wolff JL, Roberts L, Gitlin LN. Home-based care program reduces disability and promotes aging in place. Health Aff (Millwood). 2016;35:1558–63.
Szanton SL, Wolff JW, Leff B, Thorpe RJ, Tanner EK, Boyd C, et al. CAPABLE trial: a randomized controlled trial of nurse, occupational therapist and handyman to reduce disability among older adults: rationale and design. Contemp Clin Trials. 2014;38:102–12.
Spoelstra S, Sikorskii A, Gitlin L, Schueller M, Kline M, Szanton SL. Dissemination of CAPABLE model of care in a Medicaid waiver program to improve physical function. J Am Geriatr Soc. 2009;67:363–70.
Francis NA. Single subject trials in primary care. Postgrad Med J. 2005;81:547–8.
Janosky JE. Use of the single subject design for practice based primary care research. Postgrad Med J. 2005;81:549–51.
Moloney ED, Smith D, Bennett K, O’Riordan D, Silke B. Do consultants differ? Inferences drawn from hospital in-patient enquiry (HIPE) discharge coding at an Irish teaching hospital. Postgrad Med J. 2005;81:327–32.
Morelli N, Barello S, Mayan M, Graffigna G. Supporting family caregiver engagement in the care of old persons living in hard to reach communities: a scoping review. Health Soc Care Community. 2019;27:1363–74.
Beach SR, Schulz R. Family caregiver factors associated with unmet needs for care of older adults. J Am Geriatr Soc. 2017;65:560–6.
Harvath TA, Archbold PG, Stewart B, Mongoven J, Bettega K. Assessing family caregiver preparedness: competencies for the caregiving role. Innov Aging. 2018;2:194.
Sousa L, Sequeira C, Ferré GC, Neves P, Lleixà -Fortuño M. Training programmes for family caregivers of people with dementia living at home: integrative review. J Clin Nurs. 2016;25:2757–67.
Powell BJ, Waltz TJ, Chinman MJ, Damschroder LJ, Smith JL, Matthieu MM, et al. A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project. Implement Sci. 2015;10:21.
Hempel S, O’Hanlon C, Lim YW, Danz M, Larkin J, Rubenstein L. Spread tools: a systematic review of components, uptake, and effectiveness of quality improvement toolkits. Implement Sci. 2019;14:83.
National Institute on Aging. About the ADEAR Center. https://www.nia.nih.gov/health/about-adear-center. Accessed 11 May 2022
UK Oncology Nursing Society (UKONS). Oncology/haematology 24-hour triage rapid assessment and access toolkit. https://www.ukons.org/site/assets/files/1134/oncology_haematology_24_hour_triage.pdf. Accessed 16 May 2022.
Hartlieb KB, Jacques-Tiura AJ, Naar-King S, Ellis DA, Jen KC, Marshall S. Recruitment strategies and the retention of obese urban racial/ethnic minority adolescents in clinical trials: the FIT families project, Michigan, 2010–2014. Prev Chronic Dis. 2015;12:140409.
Quinn C, Dunbar SB, Clark PC, Strickland OL. Challenges and strategies of dyad research: cardiovascular examples. Appl Nurs Res. 2010;23:e15–e20.
Sygna K, Johansen, Ruland CM. Recruitment challenges in clinical research including cancer patients and their caregivers. A randomized controlled trial study and lessons learned. Trials. 2015;16:428.
Schwarzer R, Jerusalem M. Generalized Self-Efficacy scale. In: Weinman J, Wright S, Johnston M, editors. Measures in health sychology: a user’s portfolio. Causal and control beliefs. Windsor, UK: NFER-NELSON; 1995. p. 35–37.
Fries BE, Shugarman LR, Morris JN, Simon SE, James M. A screening system for Michigan's home- and community-based long-term care programs. Gerontologist. 2002;42:462–74.
Oldenkamp M, Wittek RP, Hagedoorn M, Stolk RP, Smidt N. Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction. BMC Public Health. 2016;16:480.
Nuño MM, Gillen DL, Dosanjh KK, Brook J, Elashoff D, Ringman JM, et al. Attitudes toward clinical trials across the Alzheimer's disease spectrum. Alzheimers Res Ther. 2017;9:81.
Salkind NJ. Encyclopedia of research design (Vols. 1 – 0). Thousand Oaks, CA: SAGE Publications, Inc.; 2010.
Hendrix CC, Bailey DE Jr, Steinhauser KE, Olsen MK, Stechuchak KM, Lowman SG, et al. Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being. Support Care Cancer. 2016;24:327–36.
Duggleby W, Swindle J, Peacock S. Self-administered intervention for caregivers of persons with Alzheimer's disease. Clin Nurs Res. 2014;23:20–35.
Horvath KJ, Trudeau SA, Rudolph JL, Trudeau PA, Duffy ME, Berlowitz D. Clinical trial of a home safety toolkit for Alzheimer's disease. Int J Alzheimers Dis. 2013;2013:913606.
Bullock L, Bedson J, Jordan JL, Bartlam B, Chew-Graham CA, Campbell P. Pain assessment and pain treatment for community-dwelling people with dementia: a systematic review and narrative synthesis. Int J Geriatr Psychiatry. 2019;34:807–21.

No competing interests reported.

Additionalfile1ToolkitTableofcontents.docx
Additional file 1 (.pdf) Toolkit table of contents (figure)
Additionalfile2CliniciantrainingmodulePowerPoint.pdf
Additional file 2 (.pdf) Clinician training module (PowerPoint)
Additionalfile3Caregiverdroppedoutcompleted.docx
Additional file 3 (.pdf) Caregiver characteristics/self-efficacy and beneficiary characteristics/outcomes of those who dropped out and completed trial (table)
Additionalfile4Numbertimestookitused.docx
Additional file 4 (.pdf) Number of times a toolkit section was used during study by a caregiver (figure)

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Editorial decision: Major revision
18 Aug, 2022
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Reviewers agreed at journal
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Reviewers agreed at journal
30 Jul, 2022
Reviewers invited by journal
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Editor assigned by journal
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Editor invited by journal
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Submission checks completed at journal
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You are reading this latest preprint version

Engaging Caregivers to use an Evidence-Based Intervention for Medicaid Beneficiaries with Alzheimer’s Disease: A Pilot Study

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Abstract

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Contributions To The Literature

Background

Methods

Results

Intervention modifications (Objective 1)

Clinician Outcomes (Objective 2)

Differences among completers and drop-outs

Beneficiary Outcomes (Objective 4)

Discussion

Conclusions

List Of Abbreviations

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References

Additional Declarations

Supplementary Files

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Version 1