One of the main reasons the quetiapine (Seroquel) is “black boxed” in the United States and Canada for elderly people living with dementia is that it increases their risk of mortality. Some people who say “So what? They have dementia, they’re better off dead.” I don’t particularly agree with with that view, but I understand the rationale, and why some people would make the argument.
But the higher mortality rate is not why I’m opposed to the inappropriate used of antipsychotics to “treat” people living with dementia. I’m opposed to their inappropriate use because of the life-sucking effect they had on my mother while she was still alive. She was given both quetiapine (Seroquel), and risperidone (Risperdal) over a period of four years in doses that significantly affected her well being and her ability to enjoy life – and not in a good way! Never mind the increased risk of death, what about the increased of being “dead to the world” while you’re still alive?
I wonder if the doctors who prescribe these drugs fully understand the impact they may have on someone such as my mom? Reading about a side-effect on a warning leaflet, and seeing the reality are two different things. The three-minute clip below shows the difference between my mom being awake and alert, and being in a deep sedated sleep. It was filmed throughout a single day in the autumn of 2013.
https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/
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My Alzheimer's Story 
If you love your parent, you are careful not to give Seroquel. I took care of my mom until the end and I too became very nervous with what Seroquel can do. However, as a geriatric care manager, I’ve had clients who took it and had no problems. Go figure!
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Well, I loved my mom and fought tooth and nail to get her off it, but I was not in legal control of her care, and so I failed. I think these drugs are often given out of ignorance. Many people who love their parent, spouse or whatever, feel they are doing the best thing by giving them such meds. Many people are convinced by doctors, nurses and care workers that antipsychotics are a must, families are threatened with having their family members evicted from care if they are taken off the drugs etc. And yes, some people may tolerate them, even benefit from them. That said the recommendation from geriatricians worldwide is the lowest dose possible for the shortest amount of time as I’m sure you know 🙂
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my husband was misdiagnosed with age related anxiety when he actually had an undiagnosed strep based uti. he was put on various anxiety drugs over a three month period of time by his primary care physician. after three month he was hospitalized with symptoms of bad dementia( which he never had), the hospital treated the uti and detoxed him, hospital staff misdiagnosed him as having non-alcoholic chirrosis and inoperable stenosis of both carotid arteries which were both wrong again, and advised me he should be in hospice or a facility. I took him home and hired the hospice suggested by the hospital staff, had him in hospice for 7 weeks. the hospice at the end advised me to give him higher and higher doses of haldol, seroquel and risperidone, with me telling them i thought it would kill him if i did so. they insisted he needed these high doses as well as tramadol because he was in pain. when i refused because i could not awaken him they insisted. i fired them and rushed him to the hospital. he was there for 3 and 1/2 weeks and has been in and out of the hospital for the last 2 months since as we try to wean him off of these drugs. in september when this all started we were running two successful businesses, he was functioning like a 40 year old, sharp as a tack. all the doctors and hospitals we have dealt with have just gone with the assumption ” he is 84 so he must be losing it” without any testing to verify anything unless i insist they do so and many times not even then.
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everyone has a unique reaction to medication. Risperdal did make me drowsy and reduced estrogen.
but I’ve taken high dose quetiapine for more than 20 years and it changed me from years of extreme depression and uncontrolled behavior and turned me into a loving functional person. I’m 66 and if Doctors took me off quetiapine it would ruin my life. Doctors should understand that people react differently to medication and not make sweeping decisions.
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