Caregiver Advice for Frontal Temporal Dementia
Frontotemporal dementia is an umbrella diagnosis that covers the dementias that primarily affect the frontal and temporal regions of the brain.
It is considered a cortical dementia, affecting primarily the top layer of the brain.
It is often misdiagnosed as Alzheimer's Dementia or a number of psychiatric disorders. However, it begins much earlier in life, usually between the ages of 40 and 70.
Those at risk include family members of people who have been diagnosed with FTD. With that said, nearly half the cases occur in people with no family or genetic history of the disease.
Pick's Disease is a type of frontotemporal dementia with the specific characteristics of having Pick bodies present.
Symptoms of FTD
There are a group of symptoms that, clustered together, can indicate frontotemporal dementia. Because the frontal and temporal lobes of the brain control personality, behavior and language, these areas are adversely affected in this disease.
Personality and Behavior Changes
- Inappropriate actions
- Apathy and lack of empathy for others
- Declining personal hygiene
- Lack of inhibition
- Little awareness of inappropriate actions and other behavior changes
- Obsessive compulsive behaviors
Language Difficulties with FTD
- Expressive aphasia: not being able to find the correct word for an object or feeling
- Semantic aphasia: not understanding the meaning of a word
- Inability to follow and participate in a conversation
- Garbled speech
- Speaking sentences clearly that make no sense
Managing Frontotemporal Dementia at Home
When FTD strikes the young, it can be very frightening. It is a progressive disorder and will continue to worsen over time.
Eventually, most people with frontal temporal dementia will require full time, 24 hour a day care as they deteriorate.
The best thing you can do in the home setting is to be understanding of the behavior changes and realize that the person suffering from it has little control, but more important, very little understanding of their inappropriate behaviors.
Some behaviors are self destructive and need to be addressed with their physician for their own safety, and the safety of family members.
Lack of physical hygiene can be upsetting for family members. My recommendation would be to contact a home care agency and try to get some bathing assistance in the home.
There are some treatments available that can help with some of the obsessive compulsive issues and anti depression medications have helped some.
Often, these cases progress rapidly, with survival rates somewhere between 2 - 10 years. There is research being done, but at this time there is no treatment to slow the progression of the disease.
Some types of frontotemporal dementia, such as Pick's Disease, are highly hereditary and be tested for using genetic testing.
Whether or not to get tested if you have a direct family member with FTD is a personal decision that each person should make individually.
At this point, with some genes identified, research is working on a treatment and eventual cure.
There are some clinical trials being conducted but more time, energy and money needs to be spent on this type of dementia.
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