Research has made ground-breaking advancements in treating the early stages of Alzheimer's disease. But while treatments can be seen as a hopeful sign for people who catch their symptoms early on, a new report by the Alzheimer’s Association finds that too often people are not telling medical professionals about symptoms that could indicate neurocognitive decline.

“Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression and treat when appropriate,” Maria C. Carrillo, who holds a doctorate and is the association’s chief science officer, said in “2023 Alzheimer’s Disease Facts and Figures.”

“For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms,” she said.

While experts would prefer people to be diagnosed early in order to begin treatment, the association said many people have trouble determining what’s a normal sign of aging and what indicates memory decline.

Get the diagnosis

“Getting a diagnosis is essential for several reasons,” Stacie Kulp, executive director of the association’s Utah chapter, told Deseret News. She said about half of all cases of Alzheimer’s go undiagnosed, creating several problems. Without diagnosis:

  • Individuals with Alzheimer’s and their families “do not understand the changes they are experiencing,” per Kulp.
  • They don’t have possible access to new medications like aducanumab and lecanemab that could be helpful in changing the course of the disease or to other medications to help with symptoms.
  • Families don’t think to use resources available through the Alzheimer’s Association, including information, support groups and other assistance — all available for free.

She said families should start by meeting with their primary care physician. “That is the first step toward understanding what their loved one is experiencing. There are a number of medical conditions that can mimic the symptoms of Alzheimer’s and other forms of dementia, including depression, side effects of medications, chronic stress, thyroid disease, urinary tract infections, certain nutritional deficiencies and more, so it is important to know what medical condition the individual may be facing before proceeding,” said Kulp.

Family members play a vital role in starting the discussion of symptoms with physicians, the report said. “Almost all (primary care physicians) interviewed learned of their patients’ memory problems when a family member communicated concerns rather than hearing directly from the patients themselves. Many felt the issues were more serious when a relative provided an outside perspective.”

Kulp recommends that family members accompany the individual to the doctor’s appointment. “They know the individual better and can help guide the conversation with specific examples. If warranted, this may lead to a meeting with a gerontologist for more in-depth testing,” she said.

According to the report, the doctors said that the patients were “generally more accepting of their issues” and receptive to getting care when their relative or caregiver went to the doctor appointment with them.

The association said patients often mistrust healthcare professionals. Its survey found that most participants in the focus group would not have a discussion with a physician unless they knew their health was at great risk and would affect them or their loved ones.

“Concerns about receiving an incorrect diagnosis, learning of a serious health problem, receiving unnecessary treatment and believing symptoms might go away on their own also make people reluctant to broach the topic of cognitive impairment,” the survey found.

Most participants said they would rather talk to someone they were close with about their memory impairment than to a doctor.

Physicians’ view

Of primary care physicians, the survey reported:

  • Primary care doctors in the survey said that they prefer to wait for their patients to bring up cognitive issues rather than be proactive.
  • The doctors worry that specialist shortages and limited referral options will make finding care difficult if an assessment uncovers Alzheimer’s disease or other dementia.
  • The physicians said that family members are badly needed and influential partners in their loved one’s care. Those caregivers are more likely to bring memory loss and thinking problems to a doctor’s attention because they are more likely to spot it.

“Both physicians and patients need to make discussions about cognition a routine part of interactions,” said Dr. Nicole Purcell, a neurologist and a senior director of the Alzheimer’s Association. “These new treatments treat mild cognitive impairment or early-stage Alzheimer’s disease with confirmation of amyloid, so it’s really important that conversations between patients and doctors happen early or as soon as symptoms occur, while treatment is still possible and offers the greatest benefit.”

Pressure on caregivers

Unpaid family caregivers shoulder a large financial task to meet the demands of caring for someone who has dementia. According to the report, “In 2022, more than 11 million caregivers provided unpaid care for people with Alzheimer’s or other dementias, providing an estimated 18 billion hours of unpaid assistance — a contribution valued at $339.5 billion.”

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As the population of people with the disease increases, the association worries there won’t be enough caregivers to meet the need. And it’s a demanding job for caregivers. The report said the toll of caring for a person living with Alzheimer’s can cause a 59% increase in emotional stress along with other mental challenges, such as depression or anxiety for the care providers.

The report also finds racial/ethnic disparities among caregivers:

  • Black caregivers provide more hours of care than white caregivers each week.
  • Black male caregivers are “3.3 times more likely to experience financial burdens when compared to Black female and white male and female dementia caregivers.”
  • Black, Hispanic and Asian-American dementia caregivers face more caregiver demand, have less outside help and suffer great depression, compared to white caregivers.
  • Depression linked to discrimination is more common among Black dementia caregivers.

Future research

Although progress for Alzheimer’s research is expanding, many people don’t have access to the latest Food and Drug Administration-approved treatments.

“The unprecedented decision by the Centers for Medicare & Medicaid Services (CMS) not to cover payment for the drugs without patients enrolling in additional clinical trials continues to keep patients from accessing treatments. These are the only FDA-approved treatments to ever receive this restriction from CMS. The Alzheimer’s Association calls on CMS to change its decision and provide unrestricted coverage for current and future treatments to all who could benefit,” the report said.

There are more than 140 therapy studies being tested in clinical trials worldwide to pinpoint different issues regarding Alzheimer’s, many of them funded by the association. According to the report, “The Alzheimer’s Association is currently investing more than $320 million in over 1,000 active best-of-field projects in 54 countries, spanning six continents.”

The Alzheimer’s Association offers a free 24/7 helpline (800-272-3900) that is available 365 days a year.