Frontotemporal Dementia: Spotting Signs and Addressing Symptoms
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The are various forms of dementia and not all are alike. They all reveal themselves differently. Alzheimer's disease has received the most attention, but it turns out that Frontotemporal dementia (FTD) is the most common type of dementia in the 40-65 age group and affects as many people as Alzheimer’s does. The most common form of FTD is behavioral variant Frontotemporal dementia (bvFTD).

What is Frontotemporal dementia (FTD)?

Most people do not know about this form of dementia unless they know someone who has it. Frontotemporal dementia (FTD), also known as Pick’s Disease, was first noticed in the last years of the 19th century. It is a dementia which presents earlier in life and can take years to be adequately diagnosed. It is estimated that there are approximately 70,000 people in the U.S. who are currently diagnosed with FTD. This illness is distinct from Alzheimer's disease (AD) in many ways, for example:

  • FTD appears earlier in life than AD.
  • Memory loss is a prominent symptom in early AD, which is not necessarily the case in FTD.
  • Behavior changes seem to mark the start of the most common form of FTD, while this tends to occur later in AD.
  • AD patients have more problems with orientation, for example getting lost in familiar places. This is less so with FTD.
  • Problems with speech differ. People in the more advanced stages of FTD have trouble remembering words or being able to make sense when they speak. They also can have difficulty understanding concepts or recognizing basic objects.

The cause of FTD is unknown. It is believed by some to be a hereditary illness. This is due largely in part to anecdotal references in testimonials of grandparents who suffered from Pick’s. There are those diagnosed who show no familial connection.

On MRI and CT scans, FTD shows up as a loss of nerve cells in the frontal and temporal lobes of the brain, which cause these lobes to shrink. This is the area responsible for behavioral executive function and discernment. Diminished nerve cells lead to unpredictable behavioral issues.

Stages of Frontotemporal dementia

Pre-diagnosis: The Early Signs

When caregivers, mostly spouses, of those afflicted with FTD tell their stories, they say it usually begins with subtle and odd shifts in behavior. For example, one who has a devoted history of reading on a daily basis suddenly stops and begins to play online video games without explanation. This is a mild and seemingly simple change, but it is significant when paired with other changes in behavior.

Increasingly bizarre and consequential behaviors can show up like car accidents, excessive spending, eating or drinking far beyond normal, changes in emotions, or feeling too much or too little. All of these changes in behavior, when strung together, form the beginnings of a possible diagnosis.

It can take years of experiences and mishaps before caregivers are able to get the verification and validation from the medical community that their loved one suffers from FTD. Many caregivers have to navigate doctors for years until they find their way to someone who has FTD on their diagnosing radar and can effectively test for it.

It is also worth mentioning that the patient often will deny the early signs of dementia. They feel fine and don’t think that there is anything odd about their behavior. The primary caregiver has many obstacles to contend with during the early stages, which in many ways can prove to be the most challenging and emotionally trying.

The early stages of FTD can include the following signs and symptoms:

  • Antisocial behavior
  • Loss of concern for others
  • Overeating or eating odd foods
  • Compulsive behaviors
  • Exceedingly poor judgement
  • Apathy concerning activities and interests that they used to enjoy
  • Overly friendly attitude and loss of social filters

Moderate FTD

Once a diagnosis is given, it is vital to create a network of people familiar with the issues related to FTD. Healthcare specialists who may play a role in caregiving are home caregivers, speech and language therapists, physical therapists and neuropsychologists. Social workers can aid the caregiver and patient in connecting with community resources, nursing care, support groups and respite care. Attorneys and financial advisors can help secure and protect assets and provide guidance for how to prepare for the long haul.

When a patient is diagnosed in the moderate stage of FTD there are lifestyle changes that may be able to slow the progression of the disease. Current treatments, though very limited include:

  • Behavioral management. Having family and friends or even local merchants, know about the illness so that they can interact with the individual appropriately.
  • Working with a speech therapist. This can help the person adjust to how they process language as FTD progresses.
  • Change of environment. Making the home safe and secure for all involved. All circumstances vary, but it may include locking certain doors, setting up alarms, moving, or getting rid of certain items in the home.This should all be done while maintaining the dignity of your loved one and as much independence as possible.
  • Medical interventions. Depending on the circumstances, SSRI drugs are proving helpful in reducing anxiety and depression in patients. In some cases, anti-psychotic drugs are prescribed for paranoia from dementia.

Advanced FTD

As the disease progresses, there often seems to be progressive aphasia. Aphasia is defined as one having difficulty communicating. It can begin with not being able to recognize a lemon, instead calling it a “yellow thing”, and devolve into being unable to speak at all.

As the disease progresses many become mute. FTD is a disease that requires the one afflicted, the caregiver and extended care team to master the art of adapting. It seems that to manage this disease, everyone involved needs to:

  • Learn how to adapt and enhance communication during dementia
  • Explore the essence of declining function and activity and find alternatives
  • Develop plans for future care needs and desires regarding financial, legal and medical decisions
  • Balance dignity and self-direction of the person suffering from FTD with safety concerns

Future Treatments

FTD has no cure. It is a disease that progressively worsens. People may engage in dangerous behaviors putting themselves and others at risk. Most reach the point where they are unable to care for themselves. These people require 24 hour nursing and often lead to a person moving to an assisted living facility or nursing home.

Moving forward, researchers are looking to molecular medicine for possible effective treatments for those diagnosed with FTD. There are also some studies being done concerning antioxidants and other supplements such as vitamin E, vitamin C, and the array of B vitamins to support brain health. However, there is little solid evidence to suggest that these can diminish or do away with the symptoms of FTD. Frontotemporal dementia deserves much more attention. Whether it be researchers or the media, this is a disease should be able to be diagnosed much more swiftly.


Frontotemporal Dementia Signs and Symptoms

Frontotemporal dementia

Frontotemporal Dementia Information Page

Caring for a spouse with frontotemporal dementia - Sheri's Story

About the Author(s)

As a Volunteer Caregiver to the Zen Hospice Project and a Course Manager at the CareGivers Project, Audrey Meinertzhagen is passionate about improving the standards of care for older adults and educating caregivers on the principles of mindfulness and self-care.

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