Q: Hello Ms. Posvar, My second sister is only 41. She has not been herself for a few years and the medication she’s taking is not helping her. Doctors diagnosed her with Frontotemporal Dementia. Is this the same as Alzheimer’s? Her memory is all over the place. Her behavior is embarrassing and she sometimes says inappropriate things to people. I want to help her. My family wants me to put her in a mental home. Is there help for people like her?
A: This is information I have addressed before and warrants repeating. Frontotemporal Dementia (FTD) is not Alzheimer’s; although the symptoms of FTD towards the end of the disease will be the same as end stage Alzheimer’s. FTD is caused by progressive nerve cell loss in the brain’s frontal lobe or temporal lobes. Early symptoms of this type of dementia are usually behavioural changes that are not characteristic to the person experiencing them.
Most doctors do treat this type of dementia with psychotropic (behavioural management) medications. This approach is not my favourite and often the very last resort and temporary. Working with doctors and families to manage behaviours to reduce medication is the goal. Most doctors I have worked with really want to help. It is vital that families work with the doctor when dealing with medication to manage behaviours. Doctors are not God and need your support and input to help them manage. It is a team effort.
Most traditional medication for this type of dementia does not work nor do behavioural medication. Families will need to be more informed on managing behaviours by understanding what their loved one is experiencing. Often, we as family and caretakers provoke the behaviour without realizing it. FTD is one of the few dementias that we have so far with behaviours that are not provoked by the caregiver.
However, experts do say that most negative behaviours are an unmet need and many times it is an emotional need. So the person with FTD may be experiencing the frustration of not being able to communicate, doesn’t understand why no one understands them, and unable to express their needs will cause abnormal behaviours that are inappropriate, embarrassing and upsetting to families and caregivers.
I really recommend support groups that understand what you and your sister are going through. Learn all you can about this. If your doctor is not supportive, then find one that is.
More information about FTD at http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp
You can also contact your local Alzheimer’s association.
Facts about Alzheimer’s
The research with Alzheimer’s just in America is staggering. The Alzheimer Disease International reports that this one disease kills more people than breast cancer and prostate cancer combined and other studies show that HIV continues to decline and have more survival rates each year and no survival rate with Alzheimer is clinically-proven. It is also the only disease in the top 10 that cannot be slowed, stopped or prevented.
From 2000 to 2013, deaths from other diseases have decreased significantly while Alzheimer’s increased 71%. As of 2016, every 3 seconds someone develops dementia worldwide, according to Alzheimer Disease International. Millions of people will develop Alzheimer’s but only half of them will actually be diagnosed. Patients are not diagnosed and there are many different reasons for this. This lack of diagnosis has caused a delusion of reality of this disease. It is a world epidemic.
Alzheimer’s affects 68% women and 38% men and almost two-thirds of the caregivers are women in the USA. Globally, women are at a higher risk than men — not to mention that women are the majority of caretakers of people with dementia.
Most of us know that the disease is growing rapidly here in the Caribbean. The support in our region is severely lacking. We do encourage others to contact their local associations to find out how you can help bring more awareness and support to your country or territory. Putting intelligent minds together and collectively work on what will help your area for those living with dementia and those who care for them. When one person has dementia, everyone in the family is living with dementia. It affects every aspect of life for the person with dementia and the people who care for them.
Send questions or stories to firstname.lastname@example.org or text 758-486-4509.