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Debby - @tavi
@tavi

Posts: 33
Joined: Aug 19, 2016

Transitions..... Medications for Behavioral Symptoms

Posted by @tavi, Oct 6, 2016

Does anyone have experience with medications commonly used to treat behavioral and psychiatric symptoms of Alzheimer’s disease? Our home health nurse recommended (and Dr. prescribed) starting my husband on a very low dose of quetiapine (Seroquel) for agitation and depression. I think I understand why we are moving to the antipsychotic meds — He is depressed as well as becoming more and more anxious, agitated and upset. He is unaware of how his behavior changes throughout the day – most alert when he first rises leading to lots of confusion/anxiety from 4 pm to 8 pm. Also, when he finally settles in bed he does not sleep more than 2 hours at a time during the night without having night sweats requiring a complete change of clothes.

Regardless of the effectiveness of the medications, I’m facing some pretty tough issues and decisions. I can try to get more in home care but I am also questioning my original plan for home care. Is staying in our home the best for my husband or would he feel more secure and stable in a memory care setting (as well as get more social interaction that may help the depression) — I have not yet visited any facilities near our home but will be doing so in the next few weeks. I know that any transition will be hard on him – whether it is bringing more people here into our home or moving to a memory care facility ….. appreciate any and all perspectives.

REPLY

Good morning, @tavi. Short answer to the beginning of your post is ‘yes’. My wife suffered from many dementia-like symptoms. Her anxiety was one of the most difficult aspects of all those symptoms to get corralled. First, I am glad your husband’s doc is acting quickly. Our GP ignored it for too long, it got out of hand, and was far more difficult to address as a result. My wife was on Seroquel for a long time. I can look up the dose if it would help. Took us awhile to find the appropriate, medicinal level for her, but once we did it was a huge help. She stayed on that for years. Once at therapeutic levels it finally did help her sleep patterns too. For my wife it was a great pharmacological addition for her care, but also one the doctors were frequently adjusting in her cocktail.

From my time with the Alzheimer’s Association I know ‘sundowning’ is very common with dementia patients. It was also a factor with my wife all the time and my mother-in-law for a time early on in her diagnosis. It abated with my MIL, but for a time we had to adjust her interactions, med schedule, and account for some tougher afternoons.

The second part of your post is a really tough one. There are so many aspects to it and it comes down to a very personal decision, which you already know will be a challenging one. My MIL stayed home with care, but she was in a bigger urban setting where more help was available and fairly quickly became docile and unresponsive although that phase lasted for years, so care demands were far different.. My wife stayed home the whole time of her fight. I often wondered and wonder — today is the 3 month “anniversary” of her death and a tough day — if I made the right choice. In our case she specifically asked to stay home, so I have that comfort, but I did wonder about more stimulation, friendships, etc. at a facility. We are in a small town and I only had three options. Two would not take her (too care-intensive and not in their model of care) and one was not anywhere I would have put her.

You are wise to be thinking and addressing all your options!

SO wish I could be more helpful!

Peace and strength

@IndianaScott

Good morning, @tavi. Short answer to the beginning of your post is ‘yes’. My wife suffered from many dementia-like symptoms. Her anxiety was one of the most difficult aspects of all those symptoms to get corralled. First, I am glad your husband’s doc is acting quickly. Our GP ignored it for too long, it got out of hand, and was far more difficult to address as a result. My wife was on Seroquel for a long time. I can look up the dose if it would help. Took us awhile to find the appropriate, medicinal level for her, but once we did it was a huge help. She stayed on that for years. Once at therapeutic levels it finally did help her sleep patterns too. For my wife it was a great pharmacological addition for her care, but also one the doctors were frequently adjusting in her cocktail.

From my time with the Alzheimer’s Association I know ‘sundowning’ is very common with dementia patients. It was also a factor with my wife all the time and my mother-in-law for a time early on in her diagnosis. It abated with my MIL, but for a time we had to adjust her interactions, med schedule, and account for some tougher afternoons.

The second part of your post is a really tough one. There are so many aspects to it and it comes down to a very personal decision, which you already know will be a challenging one. My MIL stayed home with care, but she was in a bigger urban setting where more help was available and fairly quickly became docile and unresponsive although that phase lasted for years, so care demands were far different.. My wife stayed home the whole time of her fight. I often wondered and wonder — today is the 3 month “anniversary” of her death and a tough day — if I made the right choice. In our case she specifically asked to stay home, so I have that comfort, but I did wonder about more stimulation, friendships, etc. at a facility. We are in a small town and I only had three options. Two would not take her (too care-intensive and not in their model of care) and one was not anywhere I would have put her.

You are wise to be thinking and addressing all your options!

SO wish I could be more helpful!

Peace and strength

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@IndianaScott Just want to say thank you for your speedy response this morning and that I do hope today brought you some peace. I’m sure it was filled with many memories of your wife and the time you shared. The love and honor you gave your wife throughout her illness is very transparent and your ability to process and share your experiences provides many of us with strength. Thank you.

My 93 year old mother was diagnosed with dementia four years ago. Most recently her physician said he believed she had LBD due to her intense hallucinations, delusions and paranoia. She started out with 50 mg of Seroquel a day and stayed on that for approximately three years. Several months ago, her dosage was increased to 150 a day. I cannot really say it improved her condition significantly. I asked her geriatric physician if there was anything else she could take. Her said Seroquel is exactly the drug used to treat her type of dementia. Five weeks ago we moved her to an assisted center. She has now been increased to one 50 mg in the morning and 200 at night. Since this last increase, her hallucinations are now occurring any time she’s awake. She thinks everyone at the center is involved in a plot to kill her and remains terrified in her room. I have to think that this sudden spiral downward must be from the Seroquel. Looking for someone who may have experienced or has a loved one who had issues with Seroquel.

Hi @dgallen,
I moved your message to this discussion “Transitions….. Medications for Behavioral Symptoms” in the Caregivers group so you could meet other caregivers who are caring for someone with dementia, including Lewy Body dementia.

Please meet @tavi @IndianaScott @servette and @sandytoes14 who all have experience with Seroquel. You may also wish to read or take part in these discussions:

– Night time verbal and physical abuse http://mayocl.in/2iIWc81
– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO
– Seroquel for anxiety & PTSD http://mayocl.in/2iIA5uj

Welcome to our group. We look forward to getting to know more about you.

@dgallen

My 93 year old mother was diagnosed with dementia four years ago. Most recently her physician said he believed she had LBD due to her intense hallucinations, delusions and paranoia. She started out with 50 mg of Seroquel a day and stayed on that for approximately three years. Several months ago, her dosage was increased to 150 a day. I cannot really say it improved her condition significantly. I asked her geriatric physician if there was anything else she could take. Her said Seroquel is exactly the drug used to treat her type of dementia. Five weeks ago we moved her to an assisted center. She has now been increased to one 50 mg in the morning and 200 at night. Since this last increase, her hallucinations are now occurring any time she’s awake. She thinks everyone at the center is involved in a plot to kill her and remains terrified in her room. I have to think that this sudden spiral downward must be from the Seroquel. Looking for someone who may have experienced or has a loved one who had issues with Seroquel.

Jump to this post

Hello @dgallen Nice to e-meet you here. I am Scott. While I am in no way a medical professional of any sort, I was my wife’s primary caregiver for 14+ years while she battled brain cancer, which included many dementia-like symptoms. She was on Seroquel for years of her illness. I was also one of the secondary caregivers for my MIL who had frontal temporal dementia as well as having worked for the national Alzheimer’s Association fundraising for their research programs.

First let me say I wish you strength and courage as you continue your caregiving role. It is quite a journey as you already know.

My wife’s Seroquel dosage also went up through her illness. At the end she was taking 150 mg in the AM and 300 mg at bedtime. This in conjunction with more than eight additional medications daily. THIS IS ONLY THE DOSAGE SHE WAS ON and is NOT A SUGGESTION of any kind. The Seroquel was a huge help to her. HUGE and the only med that touched her extraordinary anxiety levels.

I will add that with my MIL, and many other dementia patients, any change in their routine, especially with medical ramifications, they can take a significant step down in their abilities and experience changes as a result. This began to happen with my MIL and my wife even on days the doctor would have a regular home hospice visit. I only say this since it might be the change in surroundings could be the cause of some of your mother’s changes.

I wish you peace and strength.

Colleen, thank you so much!

@dgallen

My 93 year old mother was diagnosed with dementia four years ago. Most recently her physician said he believed she had LBD due to her intense hallucinations, delusions and paranoia. She started out with 50 mg of Seroquel a day and stayed on that for approximately three years. Several months ago, her dosage was increased to 150 a day. I cannot really say it improved her condition significantly. I asked her geriatric physician if there was anything else she could take. Her said Seroquel is exactly the drug used to treat her type of dementia. Five weeks ago we moved her to an assisted center. She has now been increased to one 50 mg in the morning and 200 at night. Since this last increase, her hallucinations are now occurring any time she’s awake. She thinks everyone at the center is involved in a plot to kill her and remains terrified in her room. I have to think that this sudden spiral downward must be from the Seroquel. Looking for someone who may have experienced or has a loved one who had issues with Seroquel.

Jump to this post

Hello @dgallen Welcome – I look forward to sharing with you our respective journeys. I am the primary caregiver for my husband here in our home. His mix of medications and various dosages is always a concern for me — as you know, there is no silver bullet — our physician reminds me of that fact each time we discuss changes to my husbands current mix. He started last October on 50 mg of Seroquel and is still taking that dosage — I believe that it helped immediately with his agitation but did not really effect his lack of interest / sadness with life – nor was there a change in his restless sleep patterns. In mid-November I changed his primary physician to one that provides home visits and is very responsive (HouseCall Providers). She took him off a medication to help relieve his night sweats due to possible complications and suggested that he add to his mix Cymbalta 20 mg for depression as well as Exelon 1.5mg (in addition to his current donepezil 10mg) – our pharmacist said that we might not see a change for a few days/weeks. This was true but since mid-December he has been sleeping during the night for 6 to 8 hours without waking — truly remarkable after the months of not sleeping longer than 2 hours at a time. I do not know enough about the medications to know how they may be interacting or the effect of an increased dosage. I do know that his current balance could all change in a moment — the only control I have as his care giver is to observe and monitor how he is feeling and advocate directly with his physician. Unfortunately, I also agree with Scott that any change in routine also plays a major role in behavior. In the comfort of his own home, my husband often becomes confused and does not like having additional people around to help us. I’m currently working with our outside care givers to figure out ways to help my husband be more accepting of them in our home.
Wishing you strength on your journey with your Mother.

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