Report: Why families should talk about Alzheimer’s symptoms, seek help early

Research has made ground-breaking advances in the treatment of the early stages of Alzheimer’s disease. But while the treatments may be seen as a hopeful sign for people who catch their symptoms early, a new report from the Alzheimer’s Association says that too often people don’t tell medical professionals about symptoms that could indicate neurocognitive decline.

“Providing the best possible care for Alzheimer’s disease requires an early conversation about memory and a knowledgeable, accessible care team that includes medical experts to diagnose, monitor disease progression, and treat when needed,” said Maria C. Carrillo, Ph.D., who is the organization’s chief scientist. “2023 Alzheimer’s Disease Facts and Figures”.

“For the first time in nearly two decades, there are a number of treatments being developed to treat early-stage Alzheimer’s. It’s more important than ever that people act quickly if they have memory problems or symptoms,” he said.

While experts would like people to be diagnosed early to start treatment, the organization says many people struggle to determine what is a normal sign of aging and what indicates memory loss.

Get a diagnosis

“Getting a diagnosis is essential for a number of reasons,” Stacie Kulp, executive director of the organization’s Utah chapter, told the Deseret News. He said about half of all Alzheimer’s cases go undiagnosed, which creates a number of problems. Without diagnosis:

• People with Alzheimer’s disease and their families “don’t understand the changes they’re experiencing,” according to Kulp.
• They have no access to new drugs such as aducanumab and lekanumab that could help change the course of the disease or other drugs to relieve symptoms.
• Families don’t think about taking advantage of the resources available through the Alzheimer’s Association, such as information, support groups, and other help—all available for free.

He said families should start by meeting with their primary care physician. “It’s the first step toward understanding what their loved one is going through. There are many conditions that can mimic the symptoms of Alzheimer’s disease and other forms of dementia, including depression, medication side effects, chronic stress, thyroid disease, urinary tract infections, certain nutritional deficiencies, and more, so it is important to know what illness the person may have before proceeding,” said Kulp.

According to the report, family members play an important role in starting to discuss symptoms with doctors. “Nearly all of the (primary care physicians) we interviewed learned about patients’ memory problems when a family member shared their concerns, rather than hearing directly from the patients themselves. Many felt that the problems were more serious when a relative offered an outside perspective.”

Kulp recommends that family members accompany the person to the doctor’s office. “They know the individual better and can help guide the conversation with concrete examples. If warranted, this could lead to an appointment with a gerontologist for more thorough testing, he said.

According to the report, doctors said patients “generally accepted more about their problems” and were more receptive to treatment when a family member or caregiver accompanied them to the doctor’s office.

The association said that patients often do not trust healthcare professionals. Its survey found that most focus group participants would not talk to a doctor unless they knew their health was at great risk and would affect them or their loved ones.

“Concern about a wrong diagnosis, having a serious health problem, receiving unnecessary treatment and the fact that the symptoms disappear on their own also make people reluctant to talk about cognitive impairment,” the survey concluded.

Most participants said they would rather talk to a loved one about their memory loss than to a doctor.

Doctors’ point of view

In the survey of primary care physicians, it was reported:

• Primary care physicians who participated in the study said they preferred to wait for patients to bring up cognitive problems rather than being proactive.
• Doctors fear that a shortage of specialists and limited referral options will make it difficult to find treatment if the evaluation reveals Alzheimer’s disease or other dementia.
• Doctors said family members are much needed and influential partners in their loved one’s care. These caregivers are more likely to bring memory loss and thinking problems to the doctor’s attention because they are more likely to notice it.

“Physicians and patients alike need to make conversations about cognition a routine part of their interactions,” said Dr. Nicole Purcell, a neurologist and senior director of the Alzheimer’s Association. “These new treatments treat mild cognitive decline 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 appear, when treatment is still possible and offers the greatest benefit.”

Pressure on caregivers

Unpaid carers have a big financial task on their shoulders to meet the demands of caring for someone with dementia. According to the report, “In 2022, more than 11 million caregivers provided unpaid care to people with Alzheimer’s disease or other dementias, providing an estimated 18 billion hours of unpaid help—a contribution valued at $339.5 billion.”

As the population of sick people grows, the association fears that there will not be enough caregivers. And it is demanding work for nurses. According to the report, the toll of caring for someone with Alzheimer’s disease can increase emotional stress by 59%, as well as other mental challenges such as depression or anxiety for caregivers.

The report also notes racial/ethnic differences 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 burden compared to black women and white men and female dementia caregivers.”
• Black, Hispanic, and Asian dementia caregivers encounter more caregivers, have less outside help, and experience major depression than Caucasians.
• Discrimination-related depression is more common among black dementia caregivers.

Future research

Although advances in Alzheimer’s research are expanding, many people do not have access to the latest treatments approved by the Food and Drug Administration.

“The unprecedented decision by the Centers for Medicare & Medicaid Services (CMS) not to cover drug costs without enrolling patients in additional clinical trials continues to prevent patients from accessing treatments. These are the only FDA-approved treatments ever to receive this restriction from CMS: The Alzheimer’s Association is urging CMS to reverse its decision and provide unlimited coverage for current and future treatments to anyone who could benefit, the report said.

More than 140 therapy studies are being tested in clinical trials worldwide to investigate the various problems associated with Alzheimer’s disease, many of which are funded by the association. According to the report, “The Alzheimer’s Association currently invests more than $320 million in more than 1,000 active industry-leading projects in 54 countries on six continents.”

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