Alzheimer's DiseaseUnderstanding Alzheimer’s Disease & Assessing Pain in People with Dementia

Understanding Alzheimer’s Disease & Assessing Pain in People with Dementia

Alzheimer’s disease is the most prevalent form of dementia, a term that encases the symptoms of degenerative brain diseases that impair the cognitive functioning of those affected. The disease can progress slowly over time, but the cognitive decline that accompanies Alzheimer’s and other forms of dementia are debilitating enough to distress a person’s daily life. While dementia and Alzheimer’s are often used interchangeably to describe a person suffering from a disease that causes this cognitive impairment, dementia is actually the symptom that results from the nerve damage in the brain caused by Alzheimer’s or some other neurological impairment.

Alzheimer symptomsDementia and Alzheimer’s

Approximately 5.8 million adults in the United States over the age of 65 are living with Alzheimer’s disease, a number expected to more than double within the next 30 years. While Alzheimer’s disease is the most common cause of dementia, it is not the only condition that produces symptoms of dementia.

Other forms of dementia include:

  • Vascular Dementia
  • Lewy’s Body Dementia
  • Frontotemporal Dementia
  • Mixed Dementia

Conditions such as traumatic brain injuries and Parkinson’s disease may also result in symptoms of dementia. The shared element in each ailment is damage to the part of the brain that manages memory and cognitive abilities. Alzheimer’s, dementia, and the memory problems associated with these conditions are common in older adults, but are not considered a normal part of aging.

Alzheimer’s and the BrainAlzheimer’s and the Brain

The knowledge of how Alzheimer’s disease affects the brain is constantly evolving but it’s generally accepted that the degenerative nature of the disease is due to the presence of plaques and tangles that contribute to the damage, death, or malfunction of nerve cells.
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  • Plaques – Plaques refer to the buildup of a protein called beta amyloid which becomes stuck and interrupts cellular function.
  • Tangles – Tangles reference tangled fibers of the protein known as tau, which clusters and impairs communication between neurons.

It is not unusual for older people to have a small amount of plaques and tangles within the brain as they age. People with Alzheimer’s, however, have a much larger amount of these damaging deposits or structures which results in memory loss and reduced reasoning ability.

Stages of Alzheimer’s Disease

Symptoms of Alzheimer’s are highly individualized and are often not detectable until they reach a later stage of the disease’s progression. Generally, there are seven stages of Alzheimer’s disease that range from mild to severe:

  • Stages 1-3: Normal Behavior to Mild Decline.
    • The beginning stages of Alzheimer’s are mild. Symptoms are often not noticed until stage three, when a person may begin asking the same question repeatedly or exhibit signs of a declining short-term memory.
  • Stages 4-5: Moderate to Severe Decline.
    • Stages four and five mark more noticeable decline indicated by a general lack of awareness of current conditions (i.e. time of day or current season) or of personal details (i.e. phone number).
  • Stages 6-7: Severe to Very Severe Decline.
    • Stages six and seven of Alzheimer’s disease are detrimental to a person’s independence and lifetime memory. In these stages family may not be recognizable and tasks imperative to survival, such as eating, become difficult.

Risk factors for developing dementia and Alzheimer’s disease generally include older age, genetics, family history of dementia, and head or heart injuries. Family history is one of the stronger determinants of developing Alzheimer’s, and the likelihood of developing the disease increasing with the more family members affected.

Pain and Alzheimer’s

Unfortunately, pain among people with Alzheimer’s is a common condition and one that’s difficult to detect in later stages of Alzheimer’s due difficulties in communication.

Common causes of pain in older persons with Alzheimer’s are often the same as noted in the rest of the elderly population, and can include joint pain, pain from injuries, skin conditions, or discomfort resulting from other medical conditions such as chronic illnesses or cancer.

Because of this, it is important that caregivers of those with dementia or Alzheimer’s develop a system for assessing the well-being of the patient or loved one. If possible, it is recommended that caregivers establish a baseline of normal behavior before attempting to determine behavior that’s out of character.

How to Assess Pain Among People with Alzheimer’s & Dementia

First and foremost, simply asking the person if they feel pain and where the pain is located will provide the most direct insight in how to help someone with Alzheimer’s. If the person is incapable of communication, as is often the case in later stages of dementia, using a pain scale could help discern the person’s condition.

Alzheimer pain scaleUsing Pain Scales to Evaluate Pain

A reliable pain scale to use with dementia sufferers is the Pain Assessment in Advanced Dementia Scale (PAINAD). The PAINAD scale encourages the observers to perform the following assessments and to rate the behavior on a scale from 0 (normal) to 2 (notable difference in behavior):

  • Breathing: Is breathing normal, occasionally labored, or heavily labored?
  • Negative Vocalization: If there is any negative vocalization, is it occasional or repeated?
  • Facial Expressions: Is the facial expression normal/happy, sad/frightened, or grimacing/wincing?
  • Body Language: Is body language relaxed, tense, or rigid?
  • Consolability: If the person needs to be consoled, are they easily comforted or inconsolable?

The score will range from zero to 10 points, with 10 indicating severe pain. Deciphering the root cause of the behavior presented by a person with Alzheimer’s disease will facilitate the understanding of what the most appropriate solution is, whether it’s pharmaceutical pain management or an alternative approach.

The Future of Understanding Alzheimer’s Disease

With the aging of America’s sizable Baby Boomer population researchers are working feverishly to understand the degenerative brain diseases that affect so many individuals in the United States.

In regards to assessing pain among elderly with Alzheimer’s, technological assistance in the form of smartphone apps represent an innovative way that caretakers can get help ascertaining if a person is feeling pain.

Clinical trials also offer an opportunity for individuals affected by the disease to volunteer for treatment trials, diagnostic studies, and quality of life reviews that could assist both those diagnosed with Alzheimer’s disease and their caregivers.

In all cases, advancements in the understanding of dementia and Alzheimer’s will continue to be a collaborative effort between patients, caregivers, medical professionals, and researchers.

Find more information on how to become involved in clinical trials for Alzheimer’s disease here.

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  1. Achterberg, Wilco et al. “Pain in dementia.” Pain reports vol. 5,1 e803. 25 Dec. 2019, doi:10.1097/PR9.0000000000000803. Accessed September 28, 2020.
  2. Alzheimer’s Association. Dementia vs. Alzheimer’s Disease: What is the Difference? 2020. Accessed September 28,2020.
  3. Alzheimer Society. How does pain affect people with dementia? April 2017. Accessed September 28,2020.
  4. Husebo, Bettina S et al. “Identifying and Managing Pain in People with Alzheimer’s Disease and Other Types of Dementia: A Systematic Review.” CNS drugs vol. 30,6 (2016): 481-97. doi:10.1007/s40263-016-0342-7.  Accessed September 28, 2020.
  5. National Institute of Aging (NIDA). What Is Dementia? Symptoms, Types, and Diagnosis. December 2017. Accessed September 28,2020.
  6. National Institute of Aging (NIDA). What Happens to the Brain in Alzheimer’s Disease? May 2017. Accessed September 28, 2020.

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