Rapidly Progressive Dementia: Understanding Causes and Creating a Plan for Care


Most people equate the word dementia with Alzheimer's disease and its hallmark symptoms like memory loss and confusion. However, dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Alzheimer's is the most common and well-known cause of dementia, but there are many others.

Rapidly progressive dementia is another general term for dementias that cause a quick decline in memory, thinking, and behavior. Discover what to do if you believe your loved one is experiencing rapidly progressing dementia symptoms.

What is rapidly progressive dementia?

Rapidly progressive dementias or RPDs are characterized by dementia symptoms that develop quickly over days, weeks, or months. While memory loss is one of the earliest symptoms of dementia, other common symptoms include:

  • Forgetfulness
  • Confusion
  • Difficulties with everyday tasks
  • Personality changes
  • Social withdrawal

Rapidly progressive dementia symptoms begin affecting a patient’s abilities, behaviors, and routines soon after onset instead of gradually advancing over the course of several years. This is the most notable difference between slower progressing dementias like Alzheimer’s and rapidly progressive dementias.

Any sudden change in a loved one’s cognition, behavior, or functioning should be taken very seriously and addressed by a medical professional immediately. This applies to people of any age and health status, including seniors who have already received a diagnosis and experience a sudden worsening of dementia symptoms.

What can cause rapidly progressive dementia?

There’s a wide variety of reasons that people can develop rapid dementia. However, some causes can actually be treated and reversed if caught in time. An early diagnosis is critical to help ensure your loved one has an opportunity to change course.

Research published in Neurodegenerative Disease Management explains the separate categories for causes of RPDs:

  • Neurodegenerative. Conditions that affect the nervous system, such as Creutzfeldt-Jakob disease and prion diseases, are often incurable and are responsible for most RPD-related deaths. In rare instances, Alzheimer’s and Lewy body dementia may progress unusually quickly.
  • Autoimmune. Diseases that cause the immune system to attack healthy cells are classified as autoimmune illnesses. They include lupus, multiple sclerosis, and autoimmune encephalitis (a type of brain inflammation).
  • Vascular. Strokes or a severe head injury can cause damage to the brain.
  • Metabolic. These issues prevent the body from performing regular functions. Frequent concerns include liver failure, nutritional deficiency, and thyroid problems.
  • Toxic. Exposure to heavy metals, radiation, or medications can result in toxic illnesses.
  • Infectious. Bacteria, fungi, viruses, or parasites can cause infectious illnesses.

Causes of RPD that have the fastest rate of progression are autoimmune, metabolic, toxic, and infectious — but those causes also have the highest rate of potential for reversing. In the same study cited above, 18.8% of participants with RPD had treatable conditions that were causing their rapid onset dementia symptoms. This shows us that early detection is key.

How are RPDs diagnosed?

Depending on a person’s unique mix of symptoms and health status, the first medical screening tests will likely include a urine analysis, a blood test, and an imaging screen such as an MRI. These tests help doctors determine if specific factors, like medication, infection, or a cardiovascular event, may be causing changes in a patient’s cognition.

“The evaluation of a patient with an RPD can be challenging and time consuming,” said Dr. Michael D. Geschwind, professor of neurology at the University of California, San Francisco, Memory and Aging Center. “Because of their rapid decline, patients with RPDs necessitate urgent evaluation and often require an extensive workup, typically with multiple tests being sent or performed concurrently.”

While some RPDs are chronic and have no cure, a diagnosis will help you and your loved one determine how to plan for the future.

Creating a care plan for a senior with rapidly progressive dementia

Once your loved one receives a rapidly progressive dementia diagnosis, your role as a family caregiver will get even more intense. Care planning is urgent since the life expectancy for people with RPDs is likely less than two years.

“Safety, including for the patient’s mental, physical, and financial well-being, should be monitored by the caregiver, with attention to home safety,” according to research on dementia management published in the Journal of the American Medical Association. “The caregiver can assist in planning for health care and finances as soon as possible in the course of the illness, to determine advanced directives before late-stage dementia.”

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Get started organizing medical paperwork, evaluating living arrangements, and putting together a support system for your loved one and yourself. Trusted family members or a geriatric care manager can help you navigate tough decisions for the path ahead.

Be sure to care for your own physical and mental health, too. Seek out connections with other dementia caregivers, and find answers to your burning questions by joining an online support group.

Medical and legal documents

Before your loved one’s dementia symptoms worsen any further, you’ll want to ensure their important legal documents are in order. These documents require a certain level of mental capacity to be considered valid, so acting quickly is key.

Documents you’ll want to explore include:

  • HIPAA authorization form. The Health Information Portability and Accountability Act (HIPAA) authorization form gives doctors the ability to share your loved one’s health information with you.
  • Power of Attorney. A medical power of attorney allows your loved one to designate you or another trusted individual to make health care decisions on their behalf.

Home care options

Home care allows seniors to age in place for as long as possible, and a familiar environment can be less disorienting for dementia patients. There are a lot of options for in-home services, depending on what type of support you and your loved one need most. You can find reliable, professional caregivers to assist with:

  • Housekeeping
  • Transportation and running errands
  • Meal preparation
  • Activities of daily living
  • Medication management

Don’t forget to explore options for dementia-proofing your home. Even small modifications can minimize safety hazards for your loved one and make it easier for you to care for them.

Memory care communities

It’s best to research the full spectrum of elder care options early on as your loved one will likely need a higher level of care as their symptoms progress. Memory care communities are safe and secure environments with trained staff who specialize in supporting those with Alzheimer’s and other forms of dementia. As a caregiver, you’ll feel more at peace moving your loved one to senior care if you know that they’re in good hands.

Rapidly Progressive Dementia: An eight year (2008-2016) retrospective study (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0189832)
Stages of Alzheimer’s (https://www.alz.org/alzheimers-dementia/stages)

The information contained in this article is for informational purposes only and is not intended to constitute medical, legal or financial advice or create a professional relationship between AgingCare and the reader. Always seek the advice of your health care provider, attorney or financial advisor with respect to any particular matter, and do not act or refrain from acting on the basis of anything you have read on this site. Links to third-party websites are only for the convenience of the reader; AgingCare does not endorse the contents of the third-party sites.

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