Dementia is a devastating debilitating disease that affects over 46 million people across the globe, with many people worried that dementia prevalence is increasing. The toll that this condition takes on not only the patient but also caregivers, friends, and families is high.

The basics of dementia prevalence

Dementia is defined as a decline in mental ability that is severe enough as to impact daily life. Alzheimer’s disease and its accompanying memory loss are just two of the most common types of dementia.

Contrary to what many people think, dementia itself is not a disease. It is a collection of symptoms that can include some or all of the following:

  • Memory loss
  • Inability to communicate
  • Inability to focus
  • Loss of sound reasoning or judgment

Those affected by dementia may have short-term memory loss that impacts their ability to pay their bills, take physical care of themselves and their surroundings, and generally handle the day-to-day concerns of life. Patients who have chronic pain can have even further difficulties simply getting by every day.

Current rates of dementia prevalence

As the population ages in the U.S., there are conflicting reports as to the status of dementia prevalence in this country. The World Alzheimer Report released in 2015 cites the following evidence that the dementia rate is rising:

  • Nearly ten million people are diagnosed with dementia annually
  • Based on the aging population, the number of people diagnosed with dementia is projected to be nearly 75 million by 2030 and just over 131 million by 2050

But these numbers are extrapolated based on current dementia rates among the elderly and the fact that the elderly population across the globe is estimated to increase by 56% in high- income countries (and as much as 239% in low-income countries). Additionally, life expectancy is increasing which means that there could be a higher rate of chronic, long-term age-related illness like dementia.

While it is true that the elderly population is increasing worldwide and that longer life expectancies raise the possibility of conditions that largely affect the elderly, other research indicates that dementia rates are declining.

A new study out of Bostin University Medical Center and based on data from the Framingham Heart Study (FHS) has found that although the numbers of dementia patients is expected to grow in the U.S., it is not expected in increase out of current proportions.

Participants in this study have been monitored continuously since 1975 for cognitive decline, with major date collection points in the four decades between the start of the study and 2016. Researchers found that, especially among more educated participants, the dementia rates have decreased approximately 20% each year of the study.

While this is encouraging news, study authors recognize several potential pitfalls in this data:

  • The majority of study participants are of European ancestry, and the results may not be applicable to other groups
  • Some of the decline in dementia rates may be attributable to decline in other types of conditions that could be comorbid to dementia, such as stroke and heart disease
  • Researchers did not examine diet and exercise as factors in the decline in dementia rates

Dementia rates and chronic pain

Even with this conflicting evidence about whether are not dementia prevalence is on the decline or increase, researchers, doctors, and patients agree on one thing: a chronic pain diagnosis on top of dementia make both exceedingly difficult to treat. In fact, diagnosing chronic pain is the first major hurdle in treatment, often leaving dementia patients unable to communicate what they need.

Donna Schempp, licensed clinical social worker and the daughter of a dementia patient who is also suffering from chronic pain, points out the extraordinary hurdles in just diagnosing chronic pain in elderly patients with dementia.

Sometimes doctors of dementia patients who are not trained to recognize the signs of pain in elderly patients with dementia can miss them in their brief visits. Physicians may look for obvious illness and move on. Considering that it often takes years for a cognitively “normal” person to receive a chronic pain diagnosis, non-verbal elderly patients with dementia have a lot to overcome.

Many older people were also raised in the era of the stiff upper lip. Pain should not be expressed, and composure is important. Meanwhile, they may be suffering terribly from chronic pain and feel unable to get the help they truly need.

Signs of pain in dementia patients can be different from pain in others. Trying to figure out where the pain is coming from can be as simple as lightly touching an area of the body and asking if it hurts can work. Looking at facial expressions is another way to tell if a non-verbal person is in pain, as is noticing if the person is favoring a particular part of the body. For other non-verbal or confused dementia patients, changes in personality such as restlessness or agitation can also be an indication of pain.

Treating dementia patients with chronic pain

For dementia patients with chronic pain, pain management needs to be an integral part of treatment. As many as 50% of patients with dementia suffer from pain as well, and this cannot be ignored when managing cognitive decline. Many studies indicate that in patients with all types of dementia, pain is inadequately managed.

For example:

Much of this under-management of pain can be explained by a lack of education as to what pain looks like in the elderly with dementia. Specific, targeted training seems to improve outcomes in both pain diagnosis and management for patients with dementia. This training should include recognizing signs of pain in those with dementia as well as specific training on how to separate behavioral issues from pain.

Whether dementia prevalence is rising or falling, it is important to be watchful for signs of pain in dementia patients so that they can be addressed. Read more on the signs and symptoms of dementia, and talk to your doctor about any concerns you might have if you feel your loved one is suffering.

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