Caring for loved one with any form of dementia is challenging, stressful and at times overwhelming. It is like a giant puzzle that seems to have no solution. However, families that hear the diagnosis of fronto-temporal dementia are sadly in for even more challenges. So what is Fronto-temopral dementia?
Fronto-temporal dementia (FTD) is an umbrella term for a group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain. These areas are generally associated with personality, behavior, socialization, and language.
Caregivers may notice the following changes in their loved one:
• Using the wrong word or having problems expressing needs
• A slow, delayed, or overall lack of response to basic questions and conversation
• Using ‘filler’ words, such as “thingy” "thingamabob" or “whatsit” "whosit"
• Becoming pushy, bossy, inflexible, resistant to change, or with sudden outbursts, abrupt anger -like hitting a switch.
• Eating inedible items or not comprehending very basic dangers
• Getting information in the wrong order or piecing facts together incorrectly or illogically
• Reduced speech, one word answers, no initiation of conversation and social withdrawal
• Minimal response to questions and lack of elaboration
• Spontaneous, loud, or socially inappropriate comments or outbursts
• Repetitive sayings, jokes, phrases, or stories said abruptly , at times inappropriately, and regardless of situation
• Repeated comments, themes, or mantras
• Specific extemporaneous monologues produced, without real interaction, appropriateness, or social connection
• Appearing emotionally blank or showing inappropriate emotional responses or connections to others
• Lack of an understanding of single very common word and/or of simple concepts
• Lack of an understanding of and connection with the world around them. Inability to understand common items such as what key is for or a hair brush.
The effects of this type of dementia on one's ability to communicate presents numerous challenges for caregivers. Having an education and understanding of the disease process, however, can make caring for and managing challenging behaviors a little easier.
Due to the significant behavioral issues and unpredictable nature of this disease process, sadly placement in a facility can be very difficult to impossible for many patients. I often recommend smaller group home situations or if the client is in a larger memory care facility or at home they often benefit from having consistent private duty care to supplement due to their processing time and inflexibility.
So what exactly causes these type of symptoms in FTD patients? Since clearly the frontal and temporal lobes are effected by this disease process let's begin there...
The frontal lobe is responsible for regulating our communication with others including the social and emotional aspects of our interactions.
The temporal lobe is responsible for our general knowledge and the understanding of words and concepts. So damage to these areas will produce a variety of results depending upon the individual. There are of course common themes and situations, but everyone's path is clearly a little different.
Some approaches to take in managing these behaviors:
1. Be patient and never rush! Giving time to process is very important and often times why individuals have difficulties in some facilities when rushed due to the demands of care.
2. Keep wording simple and provide visual cues.
3. Maintain a specific schedule to provide comfort and support. Change can be disruptive and upsetting.
4. Be realistic and proactive with behavior management. Do not allow visitors at difficult times of the day and ensure that a rest period is maintained on their terms to limit late day fatigue and further behavioral issues.
5. Ensure that your loved one is followed by a Geriatric Psychiatrist specializing in dementia care. This is critical for proper medication management if / when needed.
If you or your loved one has fronto temporal dementia and you require guidance please feel free to contact me through the contacts tab. I am always happy to assist and to help you in putting the pieces together!
Jackie Kindell, Specialist Speech and Language Therapist, Penine Care NHS Trust