Frontotemporal Dementia Caregiver Support Center

If you are searching for information about Frontotemporal Dementia (FTD) for a loved one or a friend, hopefully you will find this checklist below helpful. While there is a lot of tasks that needs to be completed, you do not need to complete all the tasks at the same time. With this checklist you can work on one thing at a time. If you have siblings or in-laws that can help research get them to help. I have always believe KNOWLEDGE IS POWER. You are able to make better decisions when you have knowledge about FTD. For example, if the person with Frontotemporal Dementia (pFTD) is still working, why would you need to learn about nursing homes right now? The answer is that you need to learn how much they cost, which ones are good, which ones are inappropriate for FTD patients, and whether there is a waiting list. When that day comes and your pFTD is fine one week and the next week you need to get him or her into a nursing home, you will have some knowledge about the nursing homes to make an intelligent decision. Don't wait until the last minute to research, because you could make an inappropriate decision at the last minute.

Let's Start....

1. Everyone should do the following whether they have FTD or not.

Write a Living Will ( Click here for more info ) Write a Power of Attorney (Click here for more info)

2. Person has not be diagnosed by a doctor yet?

Look into getting some sort of long term care insurance. (Remember, you are not a doctor and cannot provide a diagnosis, only a doctor can provide a diagnosis. Once you get a diagnosis, you will likely not be able to get long term care insurance for your loved one) Look into getting some sort of life insurance. (Remember, you are not a doctor and cannot provide a diagnosis, only a doctor can provide a diagnosis. Once you get a diagnosis, you will likely not be able to get long term care insurance for your loved one. But there are some types of life insurance you can get. I still need to research this type of life insurance) Create a list of behaviors and/or symptoms. Write down everything your loved one does that you do not consider normal. Collect family history as far back as you can. Register for the National Do Not Call List ( click here for more information ) Reduce Junk Mail and Unwanted Solications ( click here for more information )

3. Person has been diagnosed by a doctor?

Setup an appointment with a neuropsychologist or neurologist with experience with FTD or Call one of the FTD research centers and see if you can join a research project. ( click here for more information)

Setup an appointment with a neuropsychologist or neurologist with experience with FTD or call one of the FTD research centers. See if you can join a research project. You need to verify the diagnosis. You will be surprised how many medical personnel have never heard of FTD. If you have started at an FTD Research center you probably do not need to take this step. If you started with a neuropsychologist or neurologist, I would ask how many FTD patients the doctor has worked with and whether the doctor has ever misdisgnosed a patient.

• Verify the the person does not have any of the following issues. It is like investigating the pFTD. You need to help eliminate other medical issues that can cause dementia-like symptoms. A lot of these can be eliminated via blood tests. When blood is drawn from the person make sure a check for Syphillis, B12 Level, and thryoid levels is accomplished. When a MRI, CAT, PET, or a SPECT is done, I believe the doctor can rule out Hydrocephalous, tumors, and other brain abnormalities. Good medical history, such as what medicines your loved one takes can help eliminiate medication abuse such as sleeping pills. Good life history of the person can help eliminate alcohol abuse.
  

Hydrocephalous ( click here for more information ) Frontal Meningioma (a benign tumor) Tuberculosis meningitis HIV ( click here for more information ) Sleeping Pills Medication Interactions Alcohol (Korsakov;s syndrome) ( click here for more information ) Severe untreated depression Vitamins Deficiencies (B12) Thyroid Abnormalities Lymes Disease

 

• Need to start thinking about safety issues

Driving ( click here for more information ) Weapons (Guns, i.e.) (click here for more information ) Cooking on the stove Hand tools, mowers Living alone or being left alone

 

4. Person has been diagnosed by a neuropsychologist, neurologist or FTD Research Center?

Once a diagnosis is made pertaining to FTD, caregivers will have several questions. Questions like:

• How many years does my loved ones have?
• Can you tell us what to expect?
• How can I afford to hire someone to take care of them while I am at work?

Unfortunately, there is no way any doctor or person can tell you exactly what is going to happen. There are to many variables to give a accurate time frame for any question.

These variables include:

• How long has your loved one had this disease. We can only estimate this.
• pFTD may deteriorate faster than others
• Health of the pFTD
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• Early Stage

Safe Return Bracelet ( click here for more information ) Limit Money Access Make sure bills are paid on time Read the book "What if it's not Alzheimer's" ( click here for more information) Research your Respite Care Research your Day Care Options Research Assisted Living Options Research your Nursing Home Options Research donating pFTD's brain to a Brain bank ( click here for more information )

 

• Middle Stage

 

• Late Stage