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  • Writer's picturePenn FTD Center

Dear Nurse: Diagnosis denial in loved ones with FTD

Updated: Feb 21

Written by Gillian Bradley MA, BSN, RN

Dear Nurse,

Why doesn’t my loved one with FTD understand their difficulties? Why can’t they see how they’ve changed? Are they in denial?

Loss of insight into one’s illness is a common symptom of early-stage Frontotemporal dementia (FTD), especially in individuals with behavioral variant FTD (bvFTD). This loss of insight can look like your loved one not understanding their new limitations or not being aware of their symptoms, even when these changes appear obvious to you and others. For example, your loved one may adamantly state they do not need help with the bills or with cooking dinner, even though they are unable to successfully complete either task on their own. They may refuse medications or medical treatment. Lack of insight can also mean they cannot understand that their impulsivity is socially unacceptable, or that it affects those around them.

It’s important to know that loss of insight is different than denial of one’s disease. Denial describes a defense mechanism of someone who does not want to accept a change or diagnosis, while lack of insight describes the inability of an individual to understand or fully grasp these changes. This is due to physiologic changes in the brain, particularly in the frontal and right parietal lobes.

Unfortunately, reasoning with an individual at this stage is often ineffective, as they are unable to comprehend their illness. We recommend the following:

  1. Maintain a calm demeanor whenever possible. Avoid responding in anger or frustration, although these are natural emotional responses. It may appear that your loved one is being intentionally difficult, they are in denial, or they are simply lying. However, these changes are symptoms of a disease and secondary to physical changes in the brain.

  2. Be creative in finding ways to establish goals. Your loved one may not understand why they must shower or brush their teeth. However, they may be able to grasp that this is a required activity prior to leaving the house to go get ice cream, for example, especially if this is an activity that they enjoy.

  3. Provide supervision for safety. Observe financial accounts and financial decisions, as a person with FTD may not realize that excess spending is causing financial hardship, or they may be more susceptible to scams or gambling. Consult an elder law attorney for assistance with filling out legal forms such as a power of attorney or advanced directive in early disease stages if possible.

  4. Find support from the individual’s health care team, friends and family. Please reach out to your loved one’s healthcare provider if symptoms are not well managed or you are concerned for their health or safety. Caregiver support groups are an excellent place to find others who can validate and understand the struggles you are experiencing. Other caregivers may have additional unique ideas or resources to address these problems.



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