The authors investigated the factors influencing patient demand for cognitive testing and dementia care. They conducted a survey in the RAND American Life Panel to estimate the percentage of those ages 50 to 70 who would (1) undergo a cognitive assessment, (2) take an early-detection test for Alzheimer's disease, (3) follow up with a brain specialist if recommended, and (4) enroll in disease-modifying treatment for Alzheimer's if eligible.

Individuals' Interest in Cognitive Screening, Dementia Diagnosis, and Treatment

New Estimates from a Population-Representative Sample

Susann Rohwedder, Peter Hudomiet, Michael D. Hurd

ResearchPublished Dec 3, 2024

Recent advances in the development of early-detection tests and treatments for Alzheimer's disease have raised the prospect of their integration into routine health care in the near future. To prepare for the implementation of these advances in dementia care, new data are needed to inform estimates of anticipated demand for testing and specialist follow-up and treatment, as well as to gain a deeper understanding of individuals' motivations or potential reservations.

The authors designed and conducted a survey in the RAND American Life Panel of a population-representative sample of individuals ages 50 to 70 to estimate the percentage of the population who would (1) undergo a cognitive assessment, (2) take an early-detection test for Alzheimer's disease, (3) follow up with a brain specialist if recommended to do so, and (4) enroll in disease-modifying treatment for Alzheimer's if eligible. The authors also investigated the extent to which these four outcomes vary with individual characteristics and beliefs and whether outcomes are sensitive to the cost and mode of testing or to aspects related to treatment availability.

The rapid developments in medical research on Alzheimer's disease and related dementias in terms of testing and treatment options will lead to increased benefits from early testing. The results in this report can provide guidance about which testing protocols would be most effective in increasing testing in the population overall and how to promote equitable access to dementia care.

Key Findings

  • If the out-of-pocket costs were zero, about 80 percent of 50–70-year-old Americans would take a cognitive assessment, and 77 percent would take an early-detection test for Alzheimer’s disease.
  • The out-of-pocket cost of testing is the strongest factor determining demand: If testing cost were $300, just 40 percent would take a cognitive assessment and 35 percent would take an early-detection test for Alzheimer's disease.
  • About 72 percent would see a brain specialist if advised, and 60 percent would enroll in a disease-modifying treatment that would help maintain independence and ability to participate in daily life for an additional three years.
  • Treatment availability is an important driver of demand: The availability of modestly effective disease-modifying treatment raises the likelihood of taking a cognitive assessment by 5 percentage points, a treatment without side effects raises the probability of taking an early-detection test for Alzheimer's disease by 11 percentage points, and a treatment that helps maintain independence for three additional years would increase the enrollment rate in treatment by 14 percentage points (compared with a treatment that adds only six months of independence).
  • The most often affirmed reason for testing is to increase the chance of better treating the disease, and the most mentioned barrier is a concern that the cost of long-term care insurance might increase with a positive test result.
  • More-educated, higher-income, and homeowner individuals reported higher probabilities for testing and treatment, and there were additional variations by age, health status, the individual's support network for navigating the emergence of memory problems, and the availability of potential caregivers.

Recommendations

  • Make testing affordable or free and easily accessible, especially for low-income households.
  • Develop treatments that do not have serious side effects and are effective in helping maintain independence for a meaningful time.
  • Establish policies that would expand and strengthen individuals' support networks to relieve the economic and time burden on family caregivers — for example, through expanded support of home and community-based services.
  • Strengthen confidentiality protections and regulatory frameworks to reduce the chances of the disclosure of test results and diagnosis, and reassure patients by discussing confidentiality protections at the time of offering testing.
  • Provide information to help individuals and families better understand the value of testing, including (1) how best to plan ahead should a loved one be assessed to be at risk and (2) what actions individuals can take to reduce the chances of developing dementia or to mitigate the negative consequences of this condition.

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Citation

RAND Style Manual

Rohwedder, Susann, Peter Hudomiet, and Michael D. Hurd, Individuals' Interest in Cognitive Screening, Dementia Diagnosis, and Treatment: New Estimates from a Population-Representative Sample, RAND Corporation, RR-A2643-2, 2024. As of April 30, 2025: https://www.rand.org/pubs/research_reports/RRA2643-2.html

Chicago Manual of Style

Rohwedder, Susann, Peter Hudomiet, and Michael D. Hurd, Individuals' Interest in Cognitive Screening, Dementia Diagnosis, and Treatment: New Estimates from a Population-Representative Sample. Santa Monica, CA: RAND Corporation, 2024. https://www.rand.org/pubs/research_reports/RRA2643-2.html.
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This research was funded by Genentech and carried out within the Access and Delivery Program in RAND Health Care.

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