Knowledge and Attitudes Towards New Disease-Modifying Treatments for Alzheimer’s Disease Among Nursing Home Directors

Abstract

Objectives:

Nursing home (NH) administrator perceptions regarding the utility of Alzheimer’s disease (AD) disease-modifying medications in NHs are important since many short and long-stay residents have mild AD. This study examined Directors of Nursing’s (DoNs’) interest in using new AD disease-modifying treatments, changes in attitudes based on differences in costs to the NH, and characteristics (DoN and NH) associated with such changes.

Design:

This is a cross-sectional study.

Setting and participants:

This study is based on a 2022 nationally representative survey of 340 NH DoNs, which drawn from a stratified random sample of U.S. NHs with ≥30 beds and with a 26.6% response rate.

Methods:

We conducted descriptive analysis to assess the awareness of new Alzheimer’s disease (AD) disease-modifying treatments and the support for their use. We applied logistic regression models to explore the associations between the Directors of Nursing’s (DoN) interest in utilizing these new AD treatments and various characteristics.

Results:

Most (86%) DoNs stated that they would at least sometimes support the usage of a new disease-modifying medication if there were no NH costs. This percentage was lower if the NH costs per resident were $2,000 per year (51.3%) and $20,000 per year (14%). NHs with moderate shares of dual eligible residents were more sensitive to cost.

Conclusions and implications:

Our findings indicated that DoNs’ interest in using disease-modifying treatments for dementia varies widely according to the cost to the NHs. The uptake of new AD medications in the NH setting should be monitored, and targeted efforts may be needed to mitigate inequities in access for less-resourced NHs.

Brief summary

86% of Directors of Nursing supported new disease-modifying dementia drugs if there were no costs to nursing homes. Support dropped to 51% at $2,000 per resident/year and 14% at $20,000.

Introduction

Among adults aged 65 years and older, about 6.7 million currently have Alzheimer’s disease (AD), and it was the 6th-leading cause of death in the US in 2019. Approximately 5 to 7 million have mild cognitive impairment (MCI), which is considered for many to be the preclinical stage of AD.⁽¹⁾ Approximately 75% of AD patients will live in nursing homes (NHs) by the age of 80 years, and two-thirds of the deaths caused by dementia occur in NHs.^{(2, 3)} One in four nursing home (NH) residents have MCI or early-stage dementia and may qualify for treatment with disease-modifying therapies. ^{(4, 5)} Despite the substantial burden of disease and the debilitating nature of NH residents with MCI and AD, few treatments have been available historically to treat these conditions. For more than 20 years , acetylcholinesterase inhibitors (AChEIs) and memantine were the only FDA-approved treatments for AD. AChEIs and memantine do not modify the neurodegenerative disease process; both are symptom-relieving and have small effect sizes.^{(3, 6)} Since 2021, the FDA approved three disease-modifying medications, lecanemab, aducanumab (discontinued by the manufacturer in Nov. 2024) and donanemab; all have been reported to reduce amyloid pathology in AD patients with MCI or mild dementia and have shown modest effects on rates of functional decline.^(7–9) According to prescribing guidelines, NH residents with MCI or mild dementia may be appropriate candidates for treatment with these disease-modifying therapies,^{(4, 5, 10)} but the interest in these therapies on the part of health care professionals in the community is currently unknown. Current anti-amyloid therapies, which carry a small but meaningful risk for brain hemorrhages and edema, require intravenous administration, expensive baseline imaging and biomarker assessment by specialists, ongoing monitoring by specialists, enrollment in a study or registry, and are much more costly than generic AChEIs and memantine.^(11–13) Fewer than 20% of NHs report regular involvement of neurologists or other dementia care specialists in medication changes at the time of admission for residents with dementia,⁽¹⁴⁾ and among those with a pre-admission history of neurology visits, more than 40% had no such visits in the year following admission.⁽¹⁵⁾ This suggests that limited access to the outpatient specialist care that is needed for initiation and ongoing monitoring of care for those receiving anti-amyloid therapies may limit their use in NHs.

Several disease-modifying therapies for AD with fewer care-related barriers for NH residents are in the pipeline and could receive FDA approval.⁽¹⁶⁾ However, their cost may still limit uptake. Launch prices of aducanumab, lecanemab-imrb and donanemab exceeded $25,000 annually, and the total cost for lecanemab therapy including medical visits, brain scans, lab tests and infusion center costs have been estimated to be as high as $90,000 per year.⁽¹⁷⁾

For all stays, NHs must ensure residents have access to necessary and appropriate medications.⁽¹⁸⁾ For short rehabilitation stays, NHs receive bundled payments by Medicare for skilled nursing facility (SNF) stays up to 100 days to cover the cost of the drug, drug administration, and monitoring.⁽¹⁹⁾ More broadly, NHs may be responsible for drug costs when drugs receive accelerated approval, and when a drug is not fully covered by other sources. For long-stay residents, such costs may be incurred over extended durations (lecanemab is being considered for long-term maintenance treatment).⁽²⁰⁾ Accordingly, both high costs and limited access to outpatient specialist care and imaging may limit the future use of disease-modifying drugs in NHs.

Directors of nursing (DoNs) typically manage both nursing services and administration duties at the NH level, have regular interactions with caregivers, residents, family members, and prescribers,⁽²¹⁾ and are expected to be aware of the facility protocols, managing costs and quality, and be involved in formulary decision-making.⁽¹⁹⁾ Therefore, DoNs are especially well-positioned to integrate clinical, administrative, resident, and family perspectives into their own assessment of the value of a new treatment.

To inform the potential uptake of high-cost disease-modifying antidementia drugs in NHs, this report aims to analyze data from a nationally representative survey of DoNs to examine 1) their awareness of the new AD disease-modifying treatments, 2) their potential support for using these new AD therapies, and 3) changes in their attitudes toward utilization based on differences in costs to the NH and related to DoN and NH characteristics. We hypothesized that increasing costs of the new antidementia medication would result in a decrease in willingness to use these medications among DoNs. Ours is the first study, to our knowledge, to survey NH administrators about their awareness and attitudes towards disease-modifying antidementia drugs.

Methods

This cross-sectional study used data from a 2022 nationally representative survey (The Dementia Treatment Survey) of NH DoNs.⁽²³⁾ A stratified random sample of US NHs with ≥30 beds was drawn from the Centers for Medicare and Medicaid Services provider of services (POS) file, oversampling NHs with a dementia care unit. A total of 340 DoNs completed the self-administered questionnaire, which was disseminated by email and regular mailed survey packets, for a response rate of 26.6%.⁽²⁴⁾ Three five-point Likert-scale questions were asked about how often the respondent would support the usage of a hypothetical AD-modifying drug with a small incremental benefit and a small risk of serious side effects at varying levels of annual cost to the NH (no cost, $2,000, and $20,000 (Supplement 1.)).⁽²⁴⁾ The $20,000 amount was selected to approximate the cost of aducanumab (which was the only approved new antidementia drug when the survey was conducted) for one year of treatment. We constructed two binary outcomes measuring changes in the level of interest in supporting the usage of new antidementia medications when the annual cost increases from $0 to $2,000 (Outcome #1) and from $2,000 to $20,000 (Outcome #2), respectively.

We explored variations in attitudes towards using the new antidementia drugs by DoN and NH characteristics. DoN characteristics collected on the survey included age, race/ethnicity, years working in this facility, years working in a leadership position in any NHs, and familiarity with the beta-amyloid hypothesis. NH characteristics from the 2022 Nursing Home Compare data included quality rating, facility size, and occupancy rate. The presence or absence of a dementia unit was drawn from the 2022 POS. Other NH characteristics were based on aggregated short and long-stay resident data including any non-Hispanic Black residents, any Hispanic residents, and the percentage of residents with Medicare and Medicaid dual eligibility from the merged Medicare Beneficiary Summary File and MDS 3.0 data in 2018 (the most recent year of data available for the study).

Descriptive statistics including frequencies and percentages summarized the distributions of covariates and outcomes. Modified Poisson regression models estimated prevalence ratios (PRs) (i.e., the ratio of the percentage of DoNs with a particular characteristic reporting a change in attitude to the percentage of DoNs in the reference category for that characteristic reporting a change in attitude) between covariates and outcomes.⁽²⁵⁾ Out of 340 participants who completed the survey, 317 and 270 DoNs were eligible for analysis for Outcomes #1 and #2 after exclusion of those who would “never” use the new drug at lower costs to mitigate floor effects. DoNs with missing data for covariates were excluded from only the relevant bivariate models (reducing the sample for that model from the total possible 317 or 270); the numbers excluded due to missingness by covariate are reported in the footnote to Table 1. In all analyses, weights were applied from the parent study to account for the stratified random sampling design (60% for NHs without dementia care units and 40% for NHs with dementia care units) and non-response to achieve nationally representative estimates.⁽²⁴⁾ Analyses were performed using SAS, version 9.4 (SAS Institute, Inc., Cary, NC).

Table 1.

Association between DoN and NH characteristics and changes in DoN interest in using hypothetical new antidementia medications when costs increase.

			Outcome 1	Outcome 2
			Decreased willingness to use a new AD drug when cost increases
			from no cost to $2,000 (N = 317)	from $2,000 to $20,000 (N=270)
	Covariate (reference group)	Comparison group	PR (95% CI)	PR (95% CI)
DoN Characteristics	Gender (Ref: women)	Men	1.07 (0.80-1.42)	0.96 (0.73-1.25)
	Ethnicity (Ref: non-Hispanic white)	Non-white	1.04 (0.87-1.26)	0.91 (0.77-1.09)
	Age (Ref: 30 – 50 years old)	50+	0.91 (0.78-1.06)	0.97 (0.86-1.09)
	Years of working in this NH (Ref: < 2 years)	3–9 years	0.91 (0.75-1.11)	0.98 (0.85-1.13)
		>10 years	1.14 (0.97-1.34)	1.07 (0.94-1.21)
	Years of working in a leadership position (Ref: <10 years)	> 10 years	1.01 (0.87-1.18)	1.00 (0.89-1.12)
	Familiarity with the beta-amyloid hypothesis (Ref: No familiarity)	Any familiarity	1.10 (0.95-1.27)	1.01 (0.90-1.13)
Nursing Home Characteristics	NH Overall Rating (Ref: 1–2 stars)	3–5 stars	1.01 (0.86-1.18)	1.03 (0.91-1.17)
	Presence of a dementia care unit (Ref: Yes)	No	1.11 (0.95-1.29)	1.02 (0.91-1.13)
	Facility size (Ref: Medium)	Large	1.07 (0.93-1.24)	1.05 (0.94-1.17)
	Any non-Hispanic black residents (Ref: No)	Yes	0.94 (0.79-1.10)	0.95 (0.84-1.08)
	Any Hispanic residents (Ref: No)	Yes	1.00 (0.86-1.16)	1.00 (0.89-1.12)
	Occupancy Rate (Ref: 2:>80%)	1:65%-80%	0.99 (0.82-1.20) 1.05 (0.88-1.25)	1.01 (0.88-1.16)
		0:<65%		1.00 (0.87-1.15)
	Percentage of dual eligible residents (Ref: 0:< 38.99%)	2:>52.69%	1.15 (1.01-1.32)	1.05 (0.90-1.24)
		1:38.99%-52.69%	1.12 (0.94-1.34)	1.02 (0.84-1.24)

^§Nursing Home (NH); Director of Nursing (DoN).

^**Counts of DoNs with missing data for the following covariates (N1 for outcome 1, N2 for outcome 2): age (N1=5, N2=4), familiarity with the beta-amyloid hypothesis (N1=2, N2=2), percentage of dual eligibility residents (N1=4, N2=4).

Results

Among all participants who answered the survey (N=340), 52.8% of the DoNs were not familiar with the amyloid hypothesis of AD. The full distribution (all five response options: never, rarely, sometimes, usually, always/almost always) of DoN’s interest in using the new disease-modifying antidementia drugs at $0, $2,000, and $2,000 is presented in Figure 1.To briefly summarize, the majority (86.4%) stated that they would at least sometimes support the usage of the new medication if there were no cost to the NH. At a cost of $2,000 per resident per year to the NH, 51.3% would support the usage of a new drug at least sometimes. When the cost to the NH was $20,000 per resident per year, 85.5% of the DoNs said they would rarely or never support usage.

Figure 1. DoNs’ interest in using a new antidementia medication at varying levels of cost to the Nursing Home.

* Nursing home (NH).

** Sample size N = 340.

The 340 responses to the survey were weighted to represent the 14,455 NHs in the sample frame; in the weighted data 66.1% of NHs had overall quality ratings of at least 3 stars, 14.2% had a dementia care unit, and 42.0% were large NHs. The median occupancy was 71.9% and the median percentage of dual eligibility was 45.5%. DoNs were mostly women, non-Hispanic White, and 57.2% between 30–50 years old.

The associations between DoN and NH characteristics with changes in DoNs’ interests in using new antidementia medications when costs increase is presented in Table 1. The prevalence of DoNs reporting decreased willingness to use the new AD drug when the cost increases from no cost to $2,000 was 14% higher among DoNs with more than 10 years working experience in their NH compared to DoNs with less than 2 years (PR 1.14, 95% CI: 0.97–1.34), but this result was not statistically significant. Compared with NHs that have the lowest percentage of dual eligible residents, DoNs from NHs in the middle tertile had a statistically significant 15% higher prevalence of reporting decreased interest in using a new drug when the cost increased from no cost to $2,000 (PR: 1.15, 95% CI: 1.01–1.32). DoNs who were familiar with the beta-amyloid hypothesis and those in NHs with a dementia care unit appeared more sensitive to cost, though associations were not statistically significant.

Discussion

When asked to consider a hypothetical scenario of a new disease modifying treatment for AD with a small margin of benefit and risk of side effects, most DoNs of US NHs would support its usage for at least some residents with AD, if there were no cost to the NH. These generally positive attitudes towards new AD treatments were observed despite few DoNs reporting familiarity with the AD pathology targeted by recently approved therapies.

Attitudes towards a new drug were highly sensitive to cost. Both the cost-effectiveness and clinical efficacy of currently approved disease-modifying antidementia medications have been challenged by researchers.^(26–30) To meet commonly accepted thresholds for cost-effectiveness, future market entrants for AD will likely need to be more effective, less costly, or both.

Our findings indicate that, if NHs are required to cover some of the costs for expensive antidementia drugs, they may be hesitant to support their usage. NHs receive bundled payments during SNF stays and are responsible for all costs of care during such stays, including medications and monitoring. A related concern is that NHs have a financial incentive in this bundled payment model to extend administration or monitoring intervals which could result in missed or delayed doses, or delays in detecting emerging adverse events (e.g., brain hemorrhages or edema) during a SNF stay.

NHs present a unique opportunity to use novel drugs, once approved, in an environment with continuous clinical oversight for older adults with dementia at all levels of severity, which may be a setting with ample numbers of people with AD willing and able to take the medication. However, disparities in NH resources and quality are well documented, which raises concerns that access to expensive new therapies in NHs will vary by the level of resources available to a facility.^(33–36) NHs with worse financial health such as those with a larger share of Medicaid as the source of payment, which usually have disproportionately non-White residents, may be less willing or able to absorb the costs of expensive therapy, causing socioeconomic and racial and ethnic inequities in accessing these medications. Although DoNs in NHs with larger shares of dual eligible residents were more sensitive to cost, it was reassuring that we did not observe similar associations for other NH characteristics including occupancy, size, quality, and racial/ethnic composition of residents.

Our study has limitations. The hypothetical scenario explored in our survey was intentionally succinct and non-specific to support the generalizability of findings across the multiple emerging AD therapies. To address non-response bias, we used weighting to align the characteristics in our population with those of all medium-large NHs in the US. Finally, the attitudes of physicians and other direct care prescribers in NHs may differ from the DoNs whom we surveyed, but we lacked data to study these other perspectives. This is an area worthy of future survey research.

Conclusions and implications

NHs care for a large segment of the older adult population with MCI and mild dementia due to AD who may be eligible for new disease-modifying AD therapies. Findings from our study indicate interest in using these emerging treatment options, although such interest was greatly diminished with increasing costs to the NH. NHs with moderate shares of dual eligible residents were more sensitive to cost. The uptake of new medications in the NH setting should be monitored, and targeted efforts may be needed to mitigate inequities in access for less well-resourced NHs. Future mixed methods research is needed to examine utilization trends once more therapies enter the market and to better understand attitudes towards new treatments and decision-making by residents, their caregivers, and other members of the health care team.