Dementia prevention and diagnosis: the patient point of view

June 13 2023

The treatment landscape for Alzheimer’s disease and other dementias is evolving around us. These days, there is frequent news from companies, researchers, and reporters on the topic. But a voice less often heard is that of older adults themselves.

In partnership with MGMA, we recently held a webinar on the findings of a survey of 1,000 older adults about dementia prevention, detection, and care, featuring Dr. Soo Borson of USC (developer of the Mini-Cog) and Dr. Alvaro Pascual-Leone of Harvard, the Wolk Center for Memory Health at Hebrew SeniorLife, and Linus Health.

In addition to sharing key survey findings, the presenters also explored the opportunities they present for patients and providers to get further ahead of cognitive decline and how recent advancements in cognitive assessments can empower primary care providers (PCPs) as they seek to enhance cognitive care.

Understanding how older adults view early detection of dementia

The aim of the cognitive health-focused survey of people 65 years and older was to get a good understanding of:

  • What knowledge older adults have of the signs and symptoms of cognitive impairment
  • How much they are aware of modifiable risk factors for dementia
  • Their preferences for and their experience of cognitive care
  • How receptive they are to dementia interventions - lifestyle and pharmaceutical

Six key themes transpired from the survey. We’ll dig into each in turn.

1. Unspoken, but common concerns

Dementia is top of mind for many older adults. 81% responded that they’re concerned they will develop Alzheimer’s disease or another form of dementia. Yet, the majority–68%–rarely or never raise the subject of cognitive health with their PCPs.

Why the discrepancy?

Well, there’s still a stigma around the subject of cognitive impairment and dementia. While many older adults are willing to discuss their cognitive health, the idea that it might be waning is one they tend to avoid. Therefore, positive language is key.

“Decatastrophize the problem…that’s one of the most important take-homes here. Explain how we all have strengths and weaknesses in how our brains work.” - Dr. Soo Borson

For example, rather than asking if patients are experiencing symptoms of cognitive impairment, ask if they have any concerns about their brain health instead.

2. A lack of awareness of the basics of dementia

Despite news of advancements in the area of cognitive health becoming more prevalent, there remain myths and knowledge gaps around the subject. For example, one in five older adults still believes that dementia is a normal part of aging. Furthermore, only 22% say they are confident they know the signs of cognitive impairment.

When presented with a list of cognitive impairment symptoms, many responded correctly to the more obvious signs. For example, 89% recognized memory loss as a symptom, while 77% correctly identified trouble with familiar tasks as a symptom. But nearly half of respondents were unaware that cognitive impairment could affect their personality or be related to anxiety and depression. And 51% didn’t identify social isolation as a symptom, either.

3. A lack of knowledge of preventative measures

The medical and research community are well aware of the power of prevention when it comes to promoting cognitive health and delaying dementia. But among older adults, significant knowledge gaps remain. In fact, almost a quarter of older adults believe that dementia is genetic and that there’s nothing anyone can do to prevent it.

To explore knowledge of prevention possibilities, the survey presented respondents with a list—this time of lifestyle interventions—and asked what measures could lower someone’s chances of developing Alzheimer’s and other dementias. Again, there was a high success rate in identifying more obvious behaviors, with 84% recognizing that challenging mental activities could help, for example. However, when it came to the impact of sleep, alcohol, and social interaction, there was relatively low awareness.

Even more interesting was the fact that, when asked if they’d be willing to amend their lifestyle to enhance their cognitive health, respondents were nearly unanimous: 95% said they’d make one or more changes if they were directly tied to cognitive health – clearly showing that older adults want to take a more proactive approach.

4. Demand for early detection

“We can empower primary care teams to do population screening, to enable and lead early detection so that early intervention can take place. In doing so, it’s possible to empower patients to allow for longitudinal monitoring and appropriate coaching.” - Dr. Alvaro Pascual-Leone

When asked if they would prefer to know if they had Alzheimer’s or other dementias early on, 92% of the older adults survey replied in the affirmative - a staggering statistic that runs counter to major misconceptions that prevail today. Digging deeper, three top reasons emerged:

  • 73% percent want the ability to plan for their long-term healthcare needs
  • 71% percent would want to begin drug treatments if possible
  • 71% would pursue positive lifestyle changes to protect their cognitive health

However, these aren’t the only motivations. Quality of life plays its part too, with older adults wanting the chance to assess their finances while they still can, as well as reprioritize their life plans, such as spending more time traveling.

5. A gap between care preferences and the reality

75% of older adults say they would like more information from their PCPs on how to prevent dementia. But only 16% report that their PCP has recommended lifestyle changes specifically to support their cognitive health in the last few years.

Furthermore, cognitive assessments are still a rarity, with only 23% of respondents having had one before. So, although older adults want early detection of cognitive impairment, their signs of it could go unnoticed until overt symptoms appear. As Dr. Soo Borson says, “If you don’t measure cognitive impairment prevalence in your system, you can’t manage your population.”

6. A willingness to undergo emerging drug treatments

We all know that, when it comes to treating symptoms of dementia, it’s the sooner the better. This is true of lifestyle interventions that can mitigate the symptoms of cognitive impairment too. As we’ve learned, this is also true regarding emerging pharmaceutical treatments.

In January of 2023, the FDA granted accelerated approval to the drug Leqembi and it will decide on full approval by July 6, 2023. This treatment is targeted at early-stage Alzheimer’s disease and other dementias. As such, as these conditions progress, patients will miss the window of opportunity to benefit from these treatments.

The good news is that older adults again want to be proactive – 60% said they would reach out to their PCP for more information or to obtain cognitive testing if they learned of a new Alzheimer’s drug being approved. And, overwhelmingly, 90% of older adults said they would take medication to potentially slow the progression of the disease.

However, given that there’s evidence that both older adults and PCPs don’t regularly broach the subject of cognitive health and proactive cognitive assessments are few and far between, these sorts of timely treatments might not have the desired impact. This indicates the need for a new, earlier conversation between providers and their patients—one that could save lives.

Conversations to save and improve lives

In a survey conducted by public health departments across the country on subjective cognitive decline, many respondents said they’d noticed cognitive issues in the last 12 months. But less than half of these people told their doctors of their concerns.

This very much aligns with the results from our survey, with older adults worried about developing Alzheimer’s and other dementias but not discussing it with their PCPs. If we treat brain health in the same way as we do physical disorders, we can make inroads.

“Bring cognition into everyday conversation with your patients, the same way you do blood with blood pressure, the same way you do routine lab tests on people you don’t think have a problem. Bring cognition in even if you don’t think there’s an issue.” - Dr. Soo Borson

From lifestyle interventions to drug treatments, there’s hope for millions of patients, but it heavily relies on a shift in the status quo.

Empowering primary care providers with the right tools

“There is a lack of time, a lack of equipment, a lack of awareness of what we can really do in primary care. For truly transformative brain healthcare, we need to empower PCPs to take the lead.” - Dr. Alvaro Pascual-Leone

While it's vital that patients disclose their cognitive issues to receive treatment, other major challenges remain. In a survey conducted by the Alzheimer’s Association, it transpired that those who have the most exposure to patients with dementia–PCPs and emergency care physicians–feel the least equipped to manage it.

It’s clear we need to change the approach to cognitive health from reactive to proactive. We need to provide PCPs with digital tools that replace outdated paper-based tests and:

  • fits easily into workflows, with tests that are efficient to administer
  • allows PCPs to identify patients with cognitive impairment symptoms early on
  • supports PCPs to prioritize the patients needing specialist attention

The right tool should also enable personalized intervention plans for all patients, including those whose needs aren’t as pressing, so they can begin pursuing better cognitive health straight away. A tool like this can empower PCPs to effectively and efficiently support patients with cognitive impairment – and give patients more chances of pursuing treatments and slowing symptoms, alongside greater control over how they live their lives.