Challenges for Caregivers of Someone Living with Frontotemporal Dementia

Frontotemporal dementia (FTD) is the most commonly diagnosed form of dementia for Americans under the age of 60. Still this dementia, caused by a loss in nerve cells in both the frontal lobes and temporal lobes of the brain, is relatively rare, accounting for around 2 percent of the estimated 7.2 million dementia diagnoses in the United States.

FTD, originally called Pick’s disease, can cause extreme personality changes and more impulsive tendencies. As it progresses, cognitive decline in the areas of the brain most impacted by this dementia worsens, affecting the person’s decision-making and impulse control.

The nuances of frontotemporal dementia coupled with the younger age at which many sufferers begin displaying symptoms poses some unique challenges for caregivers of  a person diagnosed with FTD.

An early, abrupt end to a career

The family of Hollywood box office star Bruce Willis recently disclosed his FTD diagnosis, nearly a year after announcing his retirement from acting due to his struggles with aphasia, a speaking and understanding disorder often connected with dementia. Reports have since come out describing the trouble Willis was having on the sets of some of his final films, likely due to his progressing FTD.   

Because frontotemporal dementia so often presents at a younger age, progression of the disease can start while the person is still actively working. Depending on the person’s job—tasks like organizing and planning, staying focused, and following through on projects will almost certainly become more difficult, if not completely unsustainable. Because this progression can happen suddenly, early retirement and/or loss of work is often the result.

This work status change can cause financial hardships for person and the caregiver, depending on the situation. For many, the loss of identity that can come from suddenly being out of work is just as devastating. Caregivers should be prepared to consider how this sudden loss of work will affect their loved one’s day-to-day routine, as well as their sense of purpose in life. Helping them to perform simpler tasks and activities related to their work could be a short-term solution.

Impaired decision-making can lead to public embarrassment

Changes in personality and behavior can be magnified in public settings, such as entertaining at home, eating out, or celebrating a family member or friend at a party or wedding. Progression of the disease commonly leads to the person struggling to communicate, which can cause frustration and embarrassment when in crowds or intimate social settings. Additionally, people living with FTD are known to “lose their social filter” and perhaps blurt out statements or thoughts they would normally keep to themselves as they lose judgement skills.  

Caregivers should plan for potentially awkward and embarrassing moments, particularly when around others who may not be familiar with FTD and the disease’s sometimes unique symptoms. If a decline in judgement is observed, it may be a good idea for caregivers to limit public appearances to small groups of people who understand your loved one’s dementia journey, though this can feel isolating. Adult day programs or similar group settings like support groups where other participants are experiencing similar day-to-day challenges can also be a consideration.  

Apathy is a hallmark of frontotemporal dementia

Lack of motivation is common throughout all stages of FTD. Even the most ambitious individuals stop taking interest in the things that were once important to them as part of the disease process. This loss of drive often includes caring for themselves and those close to them.

It is common for caregivers to react to this lack of interest—and even a lack of empathy for others—by taking this reversal in mood and new lack of initiative in a personal way. However, it is important for those caring for someone struggling with frontotemporal dementia to cope with this profound change without taking it personally.

Caregivers cannot convince someone with FTD to rekindle that positive interest in their family, their own affairs, or even themselves. As with any dementia, the key is to treat the disease in a way that provides as much comfort and joy as possible.  

Recent Posts