When a patient has been diagnosed with frontal temporal dementia, how far should you go to treat other ailments such as high blood pressure?

This is a very interesting thread, and has revved me up for being a more vocal advocate. Sometimes the nursing homes make you feel like it's all so common, and they alone have all the answers. They don't! And they don't always listen to family. Reading this has fired me up, and heads are going to roll until I'm satisfied my dad's needs are better met. Feisty firstborn on alert once again. I would appreciate your prayers, as God really does work in mysterious ways. Thanks for sharing some of this info!

PROBLEM WITH DEMENTIA THAT KNOW DOES KNOW. EVEN YOU SAY SOMTHING TO THE DOCTOR HE MAY QUESTION YOU. WHY DO YOU ASK THAT QUESTION OF ME. BUT IF YOU ARE TAKING CARE OF SOMEONE AND CHECKING UP ON THEM YOU SEE THINGS AND HEAR THINGS THAT ARE SAID TO YOU. MY MOM HAD IT FOR AT LEAST TEN YEARS. THE MAIN ISSUE IS SOMETIMES THEY DON'T HAVE PAIN. EVEN SOME HOSPITAL STAFF DO NOT UNDERSTAND, I HAD TWO VERY NICE DOCTORS OF WHICH WERRRE TAKING CARE OF MY MOM, THIS LAST TIME. THE HEART DOCTOR HAD TO FIGHT WITH THE STAFF, THAAT THRE WAS NOTHING WRONG WITH HER HEART( FOUR TIMES) AND THEN THEIR WAS THIS DOCTOR ALL HE WANTED TO DO WAS RUN TEST. ONE WAS DONE, I TOLD TEM WHAT THEY WOULD FIND, I WAS RIGHT. AFTER THAT TEST WASS DONE, MOM WENT DOWN HILL. YOU HAVE TO BE THERE WITH A PATIENT WHEN THEY HAVE ALZTEIMERS/DEMENTIA TO MAKE SURE EVERYTHING GOES RIGHT. MY FATHER HADD ULCERS I KNOW EVERYTHING ABOUT THEM, BEFORE THE DOCTORS TOLD BOTH MY DAD AND MOM. WE AS PEOPLE NEED TO WATCH OUT FOR ONE ANOTHER AND TAKE CARE OF OUR LOVED ONES. LISTEN AND LOOK AT THINGS THAT MAY BE HAPPENING THAT WE SEE AND NO ONE ELSE WITH ADMIT. patrica61

Nobody, including doctors has a crystal ball that tells us when someone will pass. Some people with dementia live a long time - there is no way to tell. You might want to check out a blog called tangledneuron.dot.com

Its never easy to deal with any type of disability - and dementia sure sounds scary. Not everyone is the same, not every doctor is right. That is why it is called the "art of medicine". They learn new things every day. Remember when ulcers were thought to happen because of stress - now they know it is a bacteria H.Pylori. They are starting to learn things that point to the brain being much better at healing itself than we were led to believe. So if you can ask your doctors to continue treating her as if she was going to live to 100, you will never have any regrets no matter what happens.

dear snowbound, my thoughts and prays go out for you at this time. Everytime mom was in the hospital for an emergency fall or her last time at the hospital. she was in fear. A hospital or even a doctor office is hard on us, can you think how they must feel. they don't what is going on, sometimes they don't even have any pain, just by you looking at them we know. my heart goes out to you and your family. I was told, after I had taken a test for job. I had to get back to work money was gone, when I got back to the hospital I was told that hospice had to be involved. However the assisitng living and myself wanted mom to die with diginity. of which she did.sometimes people say things before they think or care about your feelings. If your father does want to die with diginity make sure there is a DNR. Or the hospital will try every thing to keep a live. They tried it on me, untill I spoke up. mom had a health epoxy and I was durable power of attorney, caregiver and legal rep. I place a note on the hospital room door not to run any more test, let her go in peace. She did in my arms at the assisitng living, three days after leaving the hospital. Bless you and hang in. No I am not at peace still it has only been a month. May GOD bless your family. patrica61

Thanks for all your comments. On Thanksgiving day, my father was very animated and actually ate two Thanksgiving meals a few hours apart because he was hungry and thought the staff had forgotten him. Then Friday at dialysis I get a report from my sister-in-law who sits for him that the whole four hours he was very distraught and fearful of the nurses and patients around him. It's so hard to know what to do in this case. God is my guide, but when will I know when enough is enough? The head nurse where he resides has said that when he has to start going to dialysis on a stretcher, then that will be an indication of not a good quality of life.

All of the person health issue should be taken care of, however if the condition does get worse make sure you can talk it over with your loved one about DNR, or get a heath epoxy. It is hard watching a person just go down hill, I had to do it, I was greatful that the attorney I had gotten, had my mom elect a leagl health epoxy. with a fulll DNR. I just lost my mom Oct 2009 after taking care of her for ten years. The last two years she was in a assisting living and I was their for her. She is at peace now but did suffer teh last week. patrica61

You've asked a tough question- actually two tough questions. For the first, why not continue the BP medication if you can afford the cost? It's not intrusive and keeping him on it will give you peace of mind. As for the inoperable brain aneurysim, this is out of your hands. I went through this with my Mom and any medications that would keep her stable I kept. When a person has end stage dementia- quality of life is subjective. At 88 one doctor said that she had cancer and another said she had glaucoma- both wanted to operate! Considering she had end stage dementia at this time my answer was no. Treating a problem an ongoing medical situation is different from having an invasive procedure that will cause more complications. Of coarse you will treat a bed sore- chemotherapy is something different. Your Dad has FTD. 2-6 years is a long time. He has hopefully a few more good years left. BP medication will only keep him stabalized- not extend his current condition. God works in mysterious ways.

To Snow Bound from Slowlygrieving
The diagnosis of FTD was made after 2 MRIs and EEG. It was initially to find out what was the cause of his not processing language. He couldn't find words that were common to him. The MRI should a Brain Aneurysm (non Operable at his age, 76) and shrinkage of the brain, along with past TIAs. The Neurologist is the one who made the diagnosis.
This is what I'm asking. If the prognosis is death in 2 to 6 years, where do you draw the line of trying to treat someone. If the quality of llife is still good I would say continue, but if the quality is at that terrible stage are we sure we are not just proloning their misery?

My father also has dementia and I've been doing quite a bit of reading about it. Did you have diagnosis of frontal temporal dementia made through a physician and how was it made? I was told by the nursing home doctor that a scan would only show his brain had shrunk and treatment wouldn't be any different than it is now. He has also been on dialysis for over five years and in the past month or so has seemed to decline both cognitively, as well as physcially. I want to make sure we haven't missed anything that could be causing this change such as a urinary tract infection, or a rare case of hydroencephaly in the aged that I've recently read about.

My mother had a boyfriend who was in his 90's, developed dementia and gradually went downhill. They were not monitoring his blood pressure in the nursing home and he had two strokes, the first one he almost died and went rapidly downhill afterwards, and the second one he never regained consciousness and died two weeks later. Seems to me that if he had been having his blood pressure monitored he wouldn't have gone downhill so rapidly. Maybe this is a common occurrence because they want these people to go quickly and not run about the medicare costs?

If it is a family member hopefully they will have made their wishes know to you or their MD, if not most MD's will be able to advise you of what their chances for recovery is and if you have to make that decision like I did -he did have a health care proxy which is legal in our state but I and the grown children made the decision together and in his case there was no hope of recovery so it was not a hard decision for us-but I would talk to others and hopefully you do not have to make that decision by yourself-I pray for strength and for God to give you much wisdom in this decision.