Patient voices on Alzheimer's: 6 key findings from new survey

As the number of older adults around the globe increases, so do projected cases of Alzheimer’s and other dementias. But there is good news. Prevention can play a powerful role in reducing these cases, and treatment options — both pharmaceutical and lifestyle approaches — continue to evolve, with the recent accelerated FDA approval of a disease modifying treatment for Alzheimer’s disease (Leqembi) as well as a strong pipeline of drugs in development.

Of course, to treat early Alzheimer’s disease most effectively, a healthcare provider must identify a patient’s cognitive impairment early. The partnership between a patient and a primary care provider (PCP), who often serves as a patient’s first touchpoint when facing a new health concern, is crucial. Understanding the disposition of older adults towards early detection of dementia — knowledge of symptoms, awareness of modifiable risk factors, openness to dementia testing, and receptivity to treatment — is critical for PCPs to advance early detection and improve treatment outcomes for their patients.

To further understand the mindset of today’s older adults on the topic of cognitive healthcare, Linus Health sponsored a survey of 1,000 people aged 65 and older in the US, which Wakefield Research conducted in January and February of 2023. All participants had not been diagnosed with dementia before. The results are compiled in the Patient Voices on Alzheimer’s and Other Dementias Report.

The report shows that older adults overwhelmingly want to take more control of their cognitive health, but face gaps in awareness, coaching, and cognitive testing — underscoring the need for more proactive cognitive care and new ways to empower PCPs to deliver it. Key findings include:

Prevention

When it comes to preventing dementia and Alzheimer’s, many older adults are still unaware of evidence-based lifestyle strategies. PCPs have a crucial opportunity for much-needed patient education.

• Almost 25% of older adults surveyed believe that dementia is genetic and there’s nothing anyone can do about it; this is an outdated understanding of the nature of dementia.
• 75% would like to learn more about how to reduce their risk of dementia from their PCP.

Detection

The survey revealed an overwhelming preference for early detection and a major opportunity for PCPs to meet that preference by incorporating cognitive assessments into preventive care.

• 92% of older adults surveyed would prefer to know about Alzheimer’s early — even before symptoms occur, if possible. It’s especially interesting that the vast majority want to know as soon as they can given the hesitancy of many healthcare providers to disclose a diagnosis for fear of the negative effects stigma may have on a patient, according to an Alzheimer’s Association 2022 special report: More Than Normal Aging: Understanding Mild Cognitive Impairment.
• Despite this unanimous and strong preference, rates of cognitive assessment that would result in early diagnosis are very low — only 23% of respondents have ever had a formal cognitive assessment. As cited in the Alzheimer's Association special report The Patient Journey in an Era of New Treatments, PCPs have reported they don’t have enough time during a visit to perform a thorough cognitive evaluation and are not entirely comfortable using existing cognitive assessment tools. More efficient tools — like digital cognitive assessments — can facilitate more widespread testing in primary care.

Intervention

There’s widespread desire for early intervention and treatment. In addition to lifestyle-based changes, the majority of older adults are open to pharmaceutical treatment options, paying attention to news around new medicines and planning to take action.

• When a new drug treatment(s) become available, 60% of older adults plan to reach out to a healthcare provider for more information and/or testing.
• If diagnosed with Alzheimer’s, 9 out of 10 older adults indicate interest in taking a medication to potentially slow it.

This survey identified trends within dementia prevention and care that have a wide variety of possible implications for providers, patients, caregivers, and the healthcare system. To learn more about our findings, please read the Patient Voices on Alzheimer’s and Other Dementias Report.