After the Diagnosis: A Guide to Alzheimer’s Disease

The most common cause of dementia in the U.S., Alzheimer’s disease afflicts an estimated 5.8 million Americans, according to the Alzheimer’s Association, and that number is only projected to grow.

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A difficult diagnosis for any individual and their loved ones, the progressive brain disorder “slowly destroys memory and thinking skills and eventually, the ability to carry out the simplest tasks,” the National Institute on Aging notes.

The disease gets its name from Dr. Alois Alzheimer who, in 1906, first noticed characteristic brain changes like abnormal clumps, or what are now termed amyloid plaques – aggregates of protein, a hallmark of Alzheimer’s disease. He discovered these changes in the brain tissue of a deceased woman who’d experienced symptoms that included memory loss, language problems and unpredictable behavior, the NIA details.

To date, despite ongoing study to better treat the disease, there’s no way to reverse neurologic changes at the root of the devastating disorder, including the appearance of tangled fiber bundles called tau tangles, a loss of nerve cell connections and the shrinking of brain tissue as Alzheimer’s progresses.

Alzheimer’s Causes

As the U.S. population ages, more people are developing Alzheimer’s disease. By 2050, it’s projected that nearly 14 million will be living with the disease, according to the Alzheimer’s Association.

“The No. 1 risk factor is age,” says Dr. Jeffrey Kaye, a professor of neurology and biomedical engineering and the director of the Layton Aging and Alzheimer’s Disease Center at Oregon Health & Science University in Portland. The majority of the people who have Alzheimer’s and those at highest risk for the disease are over the age of 80, Kaye says. Although, a still significant minority – about 200,000 people under 65 – have early-onset or younger-onset Alzheimer’s disease.

Genetics, or a person’s family history of the disease, can also affect one’s risk for developing Alzheimer’s. Having a particular form of the Apolipoprotein E, or APOE, gene – specifically APOE e4 – increases a person’s risk for developing Alzheimer’s, although the presence of this allele doesn’t mean a person will necessarily go on to develop the disease.

Apart from age and genetics, there are also some modifiable factors that may affect a person’s chances of developing Alzheimer’s disease. Initial data suggests those could include a sedentary lifestyle or lack of regular exercise, the presence of certain cardiovascular and metabolic conditions like heart disease, diabetes and obesity.

“What’s good for your heart is generally good for your brain as well,” says Dr. Zaldy Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program in Los Angeles. “While we don’t have as clear evidence that certain things like regular physical exercise, controlling your blood pressure, controlling your diabetes (and eating a) healthy diet can absolutely decrease one’s risk for dementia, we do know that from a cardiovascular standpoint and stroke risk factor standpoint that these confer beneficial effects,” he says. “That’s why I have no hesitation in recommending these interventions.”

Regular aerobic physical activity may decrease dementia risk based on observational research that finds a link but doesn’t proven a cause and effect association. “There’s a lot of suggestive evidence that people who are more active tend to have better brain health and survive without dementia perhaps longer,” Kaye says.

A low level of education is also associated with a higher risk for Alzheimer’s disease. And while the data is still limited on the impact of so-called “brain training” exercises designed specifically to optimize cognitive function, experts also advise continuing to engage in mentally stimulating activities, such as reading and doing crossword puzzles.

Staying socially plugged in is another area of focus for both individuals who have Alzheimer’s and those hoping to reduce their risk of developing the disease. “I encourage my patients to remain cognitively and socially engaged, because social isolation and cognitive stagnation may confer an increased risk as well,” Tan says.

Signs and Symptoms

There are some classic symptoms and subtler early signs that might indicate a person may have Alzheimer’s or another form of dementia. The Alzheimer’s Association suggestsscheduling an appointment with the doctor if you notice any of these signs or symptoms:

  • Disruptive forgetfulness or memory loss.
  • Challenges related to changes in one’s ability to plan or problem-solve.
  • Difficulty performing familiar tasks.
  • Confusion with time or place – e.g. losing track of dates or forgetting how you got somewhere.
  • Difficulty understanding visual images and spatial relations, like reading or judging distance.
  • Problems with language – speaking or writing – such as difficulty engaging in conversation.
  • Misplacing items, can’t retrace steps.
  • A decline in judgment or poor judgment, such as in money matters.
  • Withdrawal – pulling back from work or hobbies or avoiding being social.
  • Changes in mood – becoming depressed – or personality, becoming confused or anxious.

Diagnosis

As with the original discovery of Alzheimer’s, the most reliable way to determine if a person had the disease is still to evaluate the brain after an individual has died. “The gold standard for diagnosing Alzheimer’s is taking a look at a piece of the brain under the microscope postmortem,” says Dr. Chadwick Hales, an assistant professor of neurology at Emory University School of Medicine and a neurologist at Emory Brain Health Center in Atlanta. “But there are some tests you can do in living people,” he says.

While it can sometimes be difficult to make distinctions between certain types of dementia, Alzheimer’s can usually be diagnosed today with a very high degree of certainty by an experienced clinician. And a proper diagnosis is key to moving forward, experts say.

For those searching for an “Alzheimer’s test,” analysis for probable disease is typically more involved.

One commonly used test is an amyloid imaging study that involves scanning the brain for the telltale presence of amyloid in the brain. “The interesting thing about some of these changes is that they can actually occur many years prior to becoming symptomatic,” Hales says. So for someone who is showing some signs or symptoms, this can be used in confirming that Alzheimer’s disease is the cause.

Another test that’s sometimes done is a spinal fluid study which measures levels of proteins that are known to accumulate in brain of a person with Alzheimer’s, including amyloid beta as well as tau, Hales explains. Those levels in spinal fluid can be measured by performing a lumbar puncture, or spinal tap.

“This test is recommended to help clarify the underlying cause of a patient’s cognitive symptoms, especially when several diagnoses are being discussed.” While there may be some discomfort, local injections of pain medicine are used to manage this before the procedure begins. As with any time a needle passes through the skin, it carries risk of bleeding or infection; and there’s also a small risk of headache. The test isn’t typically performed when the diagnosis of Alzheimer’s is relatively clear based on other available data, such as a clinical history, brain imaging or neuropsychological testing, Hales says.

Treatment of Alzheimer’s Disease

Along with establishing a diagnosis, it’s very important to determine the stage of dementia, Tan says. This should be discussed along with the progression of the disease, as it’s central to setting expectations and managing Alzheimer’s disease.

People with early or mild dementia may have more problems with risk for depression and social isolation, for example. Memory issues or difficulties with certain aspects of social engagement may start to have an impact on a person’s life as well, even while one is still fairly independent. Whether a person is early in the disease course, where symptoms are still mild, or has late-stage, severe disease, this needs to be known and discussed in moving forward. “The challenges that come with each of the stages are distinct,” Tan says. “And the patient and the family needs to be able to anticipate them.”

Given that, to date, there is no cure for Alzheimer’s, the focus is on treating or managing symptoms to the extent that’s currently possible. “So if you’re talking about cognitive symptoms – i.e. forgetfulness, things like that – unfortunately our armamentarium is limited,” Tan says. Two Alzheimer’s drugs prescribed for that, donepezil and memantine, may help with memory and awareness, though response to the medications is highly variable, Hales notes. “Some patients see a nice boost; some patients just see kind of a plateauing of their symptoms, and then some patients don’t feel that it helps them at all.”

Besides medication for cognitive symptoms, people with dementia more commonly struggle with depression, and treatment of that with antidepressants may be recommended for those individuals. More difficult to treat are psychotic symptoms that can arise as Alzheimer’s disease progresses, such as hallucinations, delusions and paranoia. “That gets trickier because those types of symptoms are difficult to treat,” Tan says.

Antipsychotic medications that were originally approved by the Food and Drug Administration for schizophrenia and other psychiatric conditions are sometimes prescribed off-label to treat such symptoms in dementia patients. But Tan cautions that these have a black box warning – the strongest warning of its kind required by the FDA. “If they’re used to treat the behavioral problems of dementia, there is an increased risk of death and other complications,” he says. “But with that said, they’re still being used, especially in an acute setting when they end up in the hospital, for example, with confusion, agitation, but with the knowledge that they do increase the risk for dying.”

Especially given the current limitations in treating Alzheimer’s, individuals and their families are also encouraged to consider enrolling in treatment trials. It’s a way to do something proactive to try to move the needle forward to improve treatment of Alzheimer’s – and “it’s vitally needed,” Kaye says.

Non-Drug Approaches to Help With Symptoms

Similar to primary prevention, there are a number of lifestyle modifications that could improve anyone’s health. As with other treatments, these changes won’t reverse the progression of Alzheimer’s disease, but they provide some benefit in managing symptoms.

These include:

  • Exercising – such as regular walks.
  • Following a heart healthy diet, like the Mediterranean diet.
  • Socialization, staying engaged.
  • Getting adequate sleep.

While dementia can disrupt sleep, and have a negative cumulative effect on cognition, getting good sleep where possible may have a restorative impact. “We’re learning from basic research studies that sleep may be more important than we think for perhaps clearing some of the toxic proteins that may be accumulating in the brain in these neurodegenerative disorders,” Hales says.

In addition, he says, it’s important to avoid things that may negatively impact cognition, like alcohol use, particularly in excess. And of course don’t smoke or otherwise use tobacco, which can have an impact on overall cardiovascular health – or quit if you do.

Support for Caregivers

For loved ones of those diagnosed with Alzheimer’s, roles often shift in an effort to help that person remain at home as long as it’s safe to do so.

Given the changes that occur in the months and years following a diagnosis, experts say it’s important to keep a long-term perspective, and seek support not just for those with Alzheimer’s but for caregivers. That includes accessing resources on a local and national level through organizations like the Alzheimer’s Association.

“I try to tell the caregivers that this is a long journey. We’re talking about 10 years on the average. So it’s a marathon, not a sprint, so to speak,” Tan says. ”They need to be prepared for that.”

Where many caregivers – including partners and grown children – juggle other responsibilities ranging from work to raising kids, it’s all the more critical to make arrangements so that it’s possible to take regular breaks.

It’s also important to share what you’re doing with other friends and loved ones, since caregiving can be isolating – especially when a person isn’t able to do as much socially. In some cases, people may be reluctant to speak up or disclose that a loved one has dementia due to perceived stigma or concern about how others may react. “I think our society still has that sense of shame – that, ‘Oh my God, my father who was a professor or really smart now has dementia,” Tan says. However, experts encourage openness about Alzheimer’s to get support. The alternative – burning out – is bad for the caregiver and the person with Alzheimer’s and may lead to neither getting what they wish.

Along those lines, it’s important, too, to discuss particulars about a person’s wishes for care and preferences in general – like how to support the common wish to remain at home as long as it’s feasible to do so. Even though conversations can be difficult, it’s key to do this before the disease has progressed and such conversations become impossible.

Caregivers should also educate themselves about community-based resources that are out there, such as adult day care facilities, senior centers and geriatric care managers. That’s in addition to preparing for the latest stages of the disease, when round-the-clock monitoring and care and personal help – such as the level of care provided in a skilled nursing facility – is needed to help a person who has Alzheimer’s with all facets of life, including activities of daily living like bathing and dressing. “You can’t do this on your own,” Tan says. “There’s a lot out there in the community, but they need to find out what’s right for them and what they will have access to.”