Report: Why Families Should Talk About Alzheimer’s Symptoms and Seek Help Early

Research has made groundbreaking advances in treating the early stages of Alzheimer’s disease. But while treatments can be seen as a sign of hope for people who catch their symptoms early, a new report from the Alzheimer’s Association reveals that too often people don’t talk to healthcare professionals about symptoms that could indicate neurocognitive decline.

“Providing the best possible care for Alzheimer’s disease requires conversations about memory from the first point of concern and a knowledgeable and accessible care team that includes medical specialists to diagnose, monitor disease progression and treat the case. appropriate,” Maria C. Carrillo, who has a Ph.D. and is the association’s scientific director, said in “2023 Alzheimer’s Disease Facts and Figures.”

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

While experts would prefer people to be diagnosed early in order to begin treatment, the association said many people struggle to determine what is a normal sign of aging and what indicates memory decline.

Get the diagnosis

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

  • People with Alzheimer’s disease and their families “don’t understand the changes they’re going through,” according to Kulp.
  • They don’t have access to new drugs like aducanumab and lecanemab that might be helpful in changing the course of the disease or other drugs to relieve symptoms.
  • Families don’t think to use the resources available through the Alzheimer’s Association, including information, support groups and other forms of assistance, all available free of charge.

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

Family members play a vital role in initiating the discussion of symptoms with doctors, according to the report. “Nearly all (primary care physicians) interviewed learned of their patients’ memory problems when a family member raised their concerns rather than hearing directly from the patients themselves. Many felt that problems were more serious when a parent brought an outside perspective.

Kulp recommends that family members accompany the person to the doctor’s appointment. “They know the person best and can help guide the conversation with specific examples. If warranted, it may lead to a meeting with a gerontologist for further testing,” she said.

According to the report, doctors said patients were “generally more accepting of their problems” and were receptive to receiving care when their parent or carer went with them to the doctor’s appointment.

The association said patients were often suspicious of medical professionals. His survey found that most focus group participants would not have a discussion with a doctor unless they knew their health was in serious danger and would affect them or their loved ones.

“Worries of receiving an incorrect diagnosis, learning of a serious health condition, receiving unnecessary treatment, and believing symptoms might go away on their own also make people reluctant to bring up the topic of cognitive impairment,” revealed the survey.

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

Doctors’ point of view

Among primary care physicians, the survey reported:

  • Primary care physicians in the survey said they preferred to wait for their patients to bring up cognitive issues rather than be proactive.
  • Doctors fear that the shortage of specialists and limited referral options will make it difficult to seek care if an evaluation reveals Alzheimer’s disease or another dementia.
  • Doctors said family members are indispensable and influential partners in the care of their loved one. These caregivers are more likely to bring memory loss and thinking problems to a doctor’s attention because they are more likely to spot them.

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

Pressure on caregivers

Unpaid family carers take on a heavy financial burden 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 approximately 18 billion hours of unpaid assistance – a contribution valued at $339.5 billion”.

As the population of people with the disease grows, the association fears there may not be enough carers to meet the needs. And it’s a demanding job for caregivers. The report states that the cost of caring for someone living with Alzheimer’s disease can lead to a 59% increase in emotional stress as well as other mental problems, such as depression or anxiety for those living with Alzheimer’s disease. care providers.

The report also finds racial/ethnic disparities among caregivers:

  • Black caregivers provide more hours of care than white caregivers each week.
  • Black caregivers are “3.3 times more likely to experience financial burdens than black caregivers and white male and female caregivers.”
  • Black, Hispanic, and Asian American caregivers face greater demand for caregivers, have less outside help, and suffer from severe depression, compared to white caregivers.
  • Discrimination-related depression is more common among black caregivers with dementia.

Future research

Although research advances in Alzheimer’s disease 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 payment for drugs without patients enrolling in additional clinical trials continues to prevent patients from accessing treatments. These are the only FDA-approved treatments to have received this restriction from CMS. The Alzheimer’s Association calls on CMS to reverse its decision and provide unlimited coverage for current and future treatments to all who may benefit,” the report states.

There are more than 140 therapeutic studies being tested in clinical trials around the world to identify different issues regarding 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 cutting-edge active 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.

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