The first step in planning care is getting an accurate diagnosis. Seek out a dementia clinic at a university hospital or ask your doctor to refer you to a neurologist with expertise in FTD. Once you have a diagnosis, creating and updating a plan for caregiving will help you determine what care you can and cannot provide. It will also help you come up with an answer when someone asks “How can I help?”
While every person’s experience is unique, FTD begins with changes in mood, personality, morals, belief systems, social conduct and language that are often mistaken as a "mid-life" crisis. People with FTD experience radical behavioral changes that are easily perceived as psychological crises. The parts of the brain that inform social interactions, assess consequences and allow for self-reflection fail. As the disease progresses patients engage in bizarre behaviors. These behaviors may be very stressful for you and may make you angry. The first step is to recognize that these behaviors are part of the changes in the brain.
Tips for daily routines
Activities of daily living are divided into two major categories. The first, often called instrumental activities, are more complex types of activities. Examples include paying bills, shopping, managing medications, working, and driving.
The second category are activities related to personal care and include eating, bathing, dressing, getting in or out of bed or a chair and using the toilet. In the beginning of the disease, the person with dementia will have trouble completing the instrumental, complex activities. As the disease progresses, the person will have difficulty managing the more basic functions. They will need help from their caregivers.
What to Expect
Behavioral symptoms like moodiness, apathy, changes in personality, unsocial behaviors and language difficulty are part of the disease. The person has little or no control over them and they aren't behaving this way on purpose. Try not to take these behavioral symptoms personally. Although everyone differs, many people have no insight into their illness or their behavioral symptoms and also have no empathy for you or your efforts. This can make you feel very lonely. You may feel that you have lost the intimacy and trust you once had with the person with FTD. Build emotional support for yourself from other people.
Anger toward you and stubbornness are often part of the disease process. Keep a log and note what happened just before the person got angry. This will help you identify things that trigger angry outbursts so that you can avoid them in the future. Angry outbursts also happen when the person is feeling stressed or over-stimulated.
Pushing a person to do something or trying to make them stop can lead to angry outbursts that are difficult to manage. Arguing or explaining is likely to make the symptoms worse, or at best, they won't remember or care that you argued. People with FTD often lack insight that their behaviors are different and problematic. Arguing with them logically typically does not work.
Try to divert the person rather than force him to stop a behavior. Try to redirect problem behaviors rather than force the person to stop. If a behavior is just odd but not dangerous, consider letting the person continue. If the person's behavioral symptoms occur in public, consider giving other people a small card which says, "Please excuse my family member. He has frontotemporal dementia which affects the way he acts." or "My loved-one has an Alzheimer's-like disorder. Thank you for your patience." (Download cards that can be printed.)
Elicit assistance in dealing with your concerns. If overspending is a problem, you can consider getting legal and financial advice. Make contacts with family members who have similar experiences and find out what successful strategies they used in managing all the changes. And don't forget to take care of your own emotional and physical health.