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A Patient’s Guide to Dementia

US News & World Report - Health logo US News & World Report - Health 4/30/2019 Michael O. Schroeder
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For those who develop dementia, the changes are often subtle at first – and symptoms vary. But the condition generally describes “the loss of cognitive functioning – thinking, remembering, and reasoning – and behavioral abilities to such an extent that it interferes with a person's daily life and activities,” according to the National Institute on Aging.

While the neurodegenerative disorder Alzheimer’s disease is far and away the leading cause, various other types of dementia are also common. And just as the number of Americans with Alzheimer’s is projected to rise from about 5.8 million today to nearly 14 million by 2050, the overall ranks of people with dementia is expected to increase sharply as well.

“This explosion is largely explained by the graying of America, where 10,000 people a day turn 65 in the United States,” says Dr. Jeffrey Keller, director of the Institute for Dementia Research & Prevention at Pennington Biomedical Treatment Center in Baton Rouge, Louisiana. “Not surprisingly as you have an explosion in elderly, you have an explosion in age-related diseases like dementia.”

In addition to advancing age – which is the No. 1 risk factor – genetics can also affect a person’s risk for developing dementia. If you have an immediate family member with dementia, such as a parent, brother, sister or child, that raises your risk, Keller points out.

What’s more, “If you have hypertension, high cholesterol or diabetes, you’re at increased risk for dementia,” he says. Given that some risk factors are modifiable, and lifestyle changes including following a heart healthy diet, as well as lowering high blood pressure or high cholesterol and managing diabetes may help lower one’s risk of developing dementia, Keller stresses the importance of taking a prevention mindset. “Being at risk doesn’t mean that you have dementia, it means that you are at advancing age or (have) any of these other risk factors.”

In addition to lifestyle changes, experts say it’s important to seek medical attention if you or a loved one exhibit possible signs or symptoms of dementia.

Signs and Symptoms of Dementia

While the ways in which dementia manifests varies by the type or cause of dementia, there are some common signs and symptoms to consider. According to Mayo Clinic, those include cognitive and psychological changes such as:

  • Memory loss, which is typically noticed by a partner or someone else.
  • Trouble communicating or finding the right words.
  • Struggles with visual and spatial abilities, like getting lost while driving.
  • Issues with reasoning or problem-solving.
  • Having difficulty with complex tasks, planning or organizing.
  • Problems with coordination and motor functions.
  • Experiencing confusion and disorientation.
  • Changes in personality.
  • Depression – which tends to be more common with conditions like Alzheimer’s.
  • Anxiety.
  • Behaving inappropriately.
  • Paranoia.
  • Agitation.
  • Hallucinations.

Dementia rates increase substantially with age. “One in 7 over 65, 1 in 2 over 85 develop a dementia,” Keller says. “So, of course, advancing age by definition puts you at increased risk.”

While some forgetfulness with aging is normal, experts stress that not all people go on to develop dementia. So as the National Institute on Aging describes in its “Forgetfulness: Normal or Not?” infographic, it’s important to make the distinction between mild forgetfulness and serious memory problems like Alzheimer’s disease. For example, while “making a bad decision once in a while” or missing a single monthly payment may happen as part of normal aging, “making poor judgments and decisions a lot of the time” and ongoing problems with taking care of monthly bills could be a sign of Alzheimer’s disease.

“The first thing for people to note is that while we all forget things from time to time, what we’re looking for is a change in pattern,” says Dr. Richard Caselli, a neurologist and a professor of neurology at Mayo Clinic in Phoenix.

When family members see that kind of change in pattern – “and it’s typically family members more than the patient themselves that start to notice things and become concerned – that’s when they should alert their physician,” he says.

Types of Dementia

There are a number of different possible types for dementia in addition to Alzheimer’s disease. Those include:

Vascular Dementia

Injury to the brain, like when a person has a stroke – whether a major one, or multiple small strokes – can significantly increase one’s risk for developing vascular dementia. This type of dementia involves “progressive loss of memory and other cognitive functions caused by vascular injury or disease within the brain,” according to the NIA. “Symptoms of vascular dementia may sometimes be difficult to distinguish from Alzheimer's disease.” Vascular dementia fits within the broader framework of what are called vascular contributions to cognitive impairment and dementia, or VCID. “Problems with organization, attention, slowed thinking, and problem solving are all more prominent in VCID, while memory loss is more prominent in Alzheimer's,” the NIA notes.

Lewy Body Dementia

While vascular dementia is the second most common type of dementia overall, Lewy body dementia – or what’s also called dementia with Lewy bodies – is the second most common form of progressive, or neurodegenerative, dementia after Alzheimer’s disease. As with Alzheimer’s, dementia with Lewy bodies is marked by protein deposits in the brain. People with this type of dementia experience not only progressive cognitive decline, but many patients also have recurrent visual hallucinations, explains Dr. Brendan Kelley, a memory disorders expert with the Peter O’Donnell Jr. Brain Institute at UT Southwestern Medical Center in Dallas, and vice chair for clinical affairs in the department of neurology at UT Southwestern. “Many patients will develop difficulties with parkinsonism – so some motor symptoms where they’re having difficulty with walking or tremor or increased difficulty with falls,” he says.

Generally speaking, it’s common for people with dementia to experience sleep problems; and many with Lewy body dementia, in particular, suffer from a sleep disorder called REM sleep behavior disorder, where people act out their dreams. It can even lead to the individual or the person’s bed partner getting injured – such as when a person falls out of bed or unwittingly flails and hits the person they’re sleeping with.

Frontotemporal Dementia

Frontotemporal dementia refers to a group of disorders that cause progressive nerve cell loss in the frontal and temporal lobes of the brain. While dementia is usually most common in older adults, FTD is often diagnosed in middle age. Most people with FTD are diagnosed in their 40s and early 60s, according to the Alzheimer’s Association, which makes a person’s age at diagnosis a potential key clue in distinguishing this from other types of dementia.


If you’re concerned that you or a loved one may be exhibiting the early signs or symptoms of dementia, it’s important to seek prompt medical attention. Proper diagnosis is key, clinicians say, to distinguish between various causes and move forward.

Although the most common forms of dementia are irreversible, for some people with dementia, the underlying causes can be treated or reversed. “Make sure first of all that it’s not something you can fix … that would be important – more important than anything else,” Caselli emphasizes.

Reversible causes of dementia and factors that may cause dementia-like symptoms include vitamin deficiencies like B12, thyroid problems and certain infections, as well as depression, medication side effects, drug interactions or drug or alcohol abuse.

That makes a thorough evaluation, including a physical exam, health history and tests such as brain imaging and bloodwork, important. While seeing your primary care doctor is a good place to start, frequently a referral to a neurologist is needed as well, along with testing, to confirm a diagnosis.

Treating Dementia

For the majority of people who do have an irreversible form of dementia – including Alzheimer’s, or vascular, Lewy body or frontotemporal dementia – unfortunately there is no cure.

Still, difficult as it may be, having a diagnosis of a particular type of dementia allows the individual and loved ones to plan for the future. Treatment focuses on managing some symptoms – to the extent possible – as well as considering lifestyle changes and other accommodations specific to the type of dementia a person has.

For example, for a person with Lewy body dementia, medications used to treat Parkinson’s disease may help in addressing motor symptoms, which can improve a person’s quality of life. “These medications, such as carbidopa-levodopa (Sinemet, Rytary, Duopa) may help reduce parkinsonian signs and symptoms, such as rigid muscles and slow movement,” Mayo Clinic notes. “However, these medications may also increase confusion, hallucinations and delusions.”

Separately, some drugs approved for people with Alzheimer’s disease are also sometimes prescribed “off-label” for individuals with other forms of dementia in hopes of easing cognitive symptoms like memory problems. But there’s debate about the usefulness of these medications for people who don’t have Alzheimer’s and concern about exposing patients to unnecessary drug risks, while clinicians and patients struggle to make do with a lack of other treatment options. “They’re fairly benign medications, and let’s say for argument’s sake, you have frontotemporal dementia and not Alzheimer’s disease. So your options are either try one of these medications or not,” Caselli says. “It’s not like there’s some alternative.”

But others see more potential downside than upshot with using Alzheimer’s medicines in patients with FTD. “The medicines that were developed for Alzheimer’s disease generally are not of any benefit in frontotemporal dementia,” Kelley says. What’s more, he adds, “There’s been some evidence that some of the treatment strategies we might try in Alzheimer’s disease actually increase the behavioral symptoms in frontotemporal dementia.”

In a different scenario, though, he notes “some of the medicines that were developed to treat Alzheimer’s disease can be helpful in some patients (who have) vascular dementia. From a clinical standpoint, we would be using those things off-label, but we don’t really have any medications that can successfully reverse those vascular changes in the brain.”

Apart from trying to address cognitive symptoms – where medications tend to have a modest effect, if they are effective in patients with dementia – health providers usually have a broad focus when it comes to working with individuals who have dementia and their families. That includes trying to manage associated behavioral problems, addressing sleep disruption or treating sleep disorders, managing other chronic diseases that can further diminish quality of life for people with dementia and helping patients with progressive dementia and their loved ones plan for the later stages of disease when a person needs continuous monitoring and care.

Experts stress the importance of patients with dementia and their caregivers knowing what to expect. That way needs for things like 24-hour care and fall prevention, difficulties like incontinence, personality changes and struggles with basic activities of daily living, such as bathing, dressing and cooking, are anticipated well in advance. By contrast, trying to react to issues as they arise is not only much more difficult for the caregiver, it can be dangerous for the person with dementia. “These things need to be planned for proactively,” Keller says.

Copyright 2019 U.S. News & World Report


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