In-home sedation, or sooner move to care home?

[Adelaide]

65 yr old brother has AD. No longer recognizes any of us. His wife is the care giver. We tried a carer yesterday and it was a disaster. My SIL desperately needs regular breaks. If he's moved to a home he would be sedated daily due agitation. I suggest in-home sedation once a week, with carer present, so SIL can have a regular break (they are in NI but we visit as often as possible from England and Canada. That's no longer enough.)
His medical team seems reluctant to either increase his sedation (risperdal) or to use it PRN. Difficult for me as his daughter is a GP who is not his GP but who makes recommendations to the professor "GP" who is doing (another) drug trial on my brother.
It just seems to me that once a week sedation at home would be preferable to daily sedation in a care home.
Has anyone any experience of this dilemma? TIA

 

[Beate]

What makes you think people in care homes are sedated daily? Surely every case is different? Yes, there are medications to help with aggression etc, but some of them are antipsychotics which should only ever be used as a short-term solution. Getting medication right is important but it should be to help people stay calm, not to sedate them into zombies. Please tell me that this is what you mean! Also, a care home or day care centre worth their salt who have experience with dementia, should find other methods to deal with agitated people.

 

[Kevinl]

Hi Adelaide, welcome to TP
I don't understand why should he go into care he would get daily sedation, use of the "chemical cosh" is very much frowned down on these days, have you been told daily sedation would happen?
K

 

[Canadian Joanne]

Hello Adelaide and welcome to Talking Point (TP).

It seems your brother is already receiving sedation, as you say the GP is reluctant to increase it. I agree that a close eye must be kept on any sedation given. I do understand why the GP may be reluctant, as it can be very much a tightrope walk to give enough but not over or under to achieve the wanted goals.

Sedation once a week wouldn't do anything, in my opinion. As for PRN, as far as I'm aware that isn't an effective method. It would have to be another med to work PRN, but those tend to be 'pams, which are addictive.

How agitated is your brother? Is he verbally and/ or physically aggressive? How was the carer introduced? Sometimes introducing the carer as a friend works better, as the carer can start helping once the PWD becomes accustomed to them.

I do agree that your SIL needs regular breaks. Keep us posted.

 

[jaymor]

My husband had challenging behaviour and entered a nursing home with CHC in place and 1:1 care 24 hours a day. He never received medication for his challenging behaviour it was well managed by dementia trained staff. I would not have allowed them to sedate, I had health and welfare POA.

His medication for Alzheimer's which was Aricept was all he had apart from a weekly pain patch in the last 18 months of his nursing care.

Like everyone else I can't see a home administering drugs for sedation every day. If they are then they need reporting.

 

[Shedrech]

Hi Adelaide

welcome from me too

I wonder whether the introduction of a new routine with a carer will just take some time to settle in - it can take some adjustment for the carer, as well as lead to some anxiety in the person with dementia - so maybe it wasn't a complete disaster? and would be worth continuing
Was the carer to act as a sitter while your brother's wife had some time for herself? or to support with personal care?
Is there any possibility of your brother spending time in a day centre where he may join in activities - which would give your SIL a break?

These days, I don't think medics are happy to sedate people as you are considering - there are repercussions for their safety, and the safety of the carer, especially as the person's mobility will be affected. So, as others have said, this isn't in any way the 'norm' in care homes. Certainly the staff in my dad's care home work hard to get to know each resident and how to support them when their behaviour is challenging - only rarely is dad given any prn meds, and then it is for his welfare to settle him before his agitation becomes extreme, not for the benefit of the staff.

If this is a worry preventing your family from accessing a respite stay in a care home, to give your SIL a much needed break, then maybe a visit to some local homes to chat over their policy and routines will put your minds at rest.

 

[chrisdee]

Dear Adelaide, I doubt if anyone has experienced this exact dilemma, as I think you have got hold of the wrong end of the stick. At mid-late stage, the problem, it is true, is often that of behaviour management. If behaviour can be managed with the occasional sedative, and your SIL can garner some support at home, then the person might be able to remain at home. Day-care/respite could also give SIL a break. If however, its all gone beyond this, and most sedatives are only short-acting, then the other solution of permanent care might be the only one. In England, homes are regularly inspected, Doctors and CPN's [mental health] should be involved. This prevents the scenario you describe. I know of no one, including my mother, who has been subjected to this harsh treatment. By the way, I think you will find that there is no quick fix to any of this.

 

[Adelaide]

What makes you think people in care homes are sedated daily? Surely every case is different? Yes, there are medications to help with aggression etc, but some of them are antipsychotics which should only ever be used as a short-term solution. Getting medication right is important but it should be to help people stay calm, not to sedate them into zombies. Please tell me that this is what you mean! Also, a care home or day care centre worth their salt who have experience with dementia, should find other methods to deal with agitated people.

Thank you for your response. Yes, I am talking antipsychotics. He's already on s very small dose of risperdal at night.

I have to go back and forth .... my neighbour is a nurse and after ten years of isolation with her 80+ AD husband, he was able to get into a care home here in Canada. And he wanted out. And he's a big man, and he had to be sedated with Ativan. (As you know, an - azepam.)

I do know there is a PRN sublingual version of risperdal. (I foster high risk teens.). I had been thinking of that as "sedation" but I've since talked to my neighbour again and while her husband was on seroquel (as you know, similar to risperdal) three times a day, Ativan was used for his agitation as required.
She had him taken off the seroquel asap.

No, not talking zombie. I should have been more clear. What I'm thinking is that having a carer is a trigger (he tried to jump out of the moving car) so while she won't take him in a car again (she quit, anyway) surely we can predict the triggers and avoid them? By either Ativan or sublingual risperdal?

 

[Adelaide]

Hi Adelaide, welcome to TP
I don't understand why should he go into care he would get daily sedation, use of the "chemical cosh" is very much frowned down on these days, have you been told daily sedation would happen?
K

Thank you, Kevini. I assume when 6'3" strong and fit men like my brother become a danger to themselves or others (trying to jump out of carers moving car) and a care home is on the agenda at some point, there must be some measures in place to protect the staff. My SIL can manage, I've booked to go over in a week and again in a month, but eventually a care home is on the agenda. While wife and big sis know how to cajole and manage him, staff won't. And he will want to break out and go home. I don't know how that is handled. In his case it will be s private care home, in my neighbours case it's s gov't one .... but the same regulations would surely apply? If my brother is out of control, how can they manage except through chemistry?
If he stayed at home with either Ativan or sublingual risperdal PRN, would that not be better, one day a week, then whatever they might have to administer daily in the care home?

 

[Adelaide]

Hello Adelaide and welcome to Talking Point (TP).

It seems your brother is already receiving sedation, as you say the GP is reluctant to increase it. I agree that a close eye must be kept on any sedation given. I do understand why the GP may be reluctant, as it can be very much a tightrope walk to give enough but not over or under to achieve the wanted goals.

Sedation once a week wouldn't do anything, in my opinion. As for PRN, as far as I'm aware that isn't an effective method. It would have to be another med to work PRN, but those tend to be 'pams, which are addictive.

How agitated is your brother? Is he verbally and/ or physically aggressive? How was the carer introduced? Sometimes introducing the carer as a friend works better, as the carer can start helping once the PWD becomes accustomed to them.

I do agree that your SIL needs regular breaks. Keep us posted.

Thank you, Joanne. I'm a bit north of you.
Would Ativan be addictive if used once a week? I know many of the azepams are, probably all, if used daily.
He's on a small dose of risperdal at night. All that's on the table right now is perhaps some risperdal in the morning.
I thinking more along the lines of something when a trigger is anticipated, like the carer.
She was introduced as a friend. His daily routine is going out for a coffee and a scone. With his wife. Wife and carer did it together. Then carer took him. He tried to jump out of her moving car. She quit.
SIL now looking for a male carer.
I'm thinking "sedation" either sublingual risperdal or Ativan. Once a week.
He's not ready for a home BUT my SIL needs a break. I'm going over on 3rd June and again on 29 July.

 

[Adelaide]

Dear Adelaide, I doubt if anyone has experienced this exact dilemma, as I think you have got hold of the wrong end of the stick. At mid-late stage, the problem, it is true, is often that of behaviour management. If behaviour can be managed with the occasional sedative, and your SIL can garner some support at home, then the person might be able to remain at home. Day-care/respite could also give SIL a break. If however, its all gone beyond this, and most sedatives are only short-acting, then the other solution of permanent care might be the only one. In England, homes are regularly inspected, Doctors and CPN's [mental health] should be involved. This prevents the scenario you describe. I know of no one, including my mother, who has been subjected to this harsh treatment. By the way, I think you will find that there is no quick fix to any of this.

Yes, I believe his behaviour can be managed with an occasional sedative, prior to a trigger, like a carer.
There is no way he will accept day care/respite (unless he was sedated!). We've been to see all the local ones and we will try, we won't rule them out, but his anchors are his wife, his home, and his daily coffee and scone. Day after day after day.
Yes, permanent care is on the agenda but he's not ready for that yet.
Yes, aggression, agitation, "danger to himself or others" are all a very real concern.

 

[Amy in the US]

Adelaide, I am not a medical professional so take this with a grain of salt, please, but I'd be having a very long conversation with his neurologist about his medications. I understand you have a GP in the family but they are not necessarily an expert on managing dementia. My mother's neurologist has stated time and again that it's very important to be careful with anti-psychotics, as some patients with some types of dementia and some anti-psychotics don't mix well.

When you say "drug trial," do you mean, they are trying a medication that is new (in type or dosage) to your brother, or do you mean, an experimental drug that is in a clinical trial?

I am sorry to hear about what must a very difficult situation for your family. I appreciate that you are exploring options as it must be very hard for your SIL to be on duty every day, and of course you need a backup plan for when she is ill/out of town/unavailable to care for him, for whatever reason.

I wonder if perhaps a male carer might be more acceptable than a female carer, who might be seen as a a threat (in terms of "replacing" SIL)? Oh, wait, I've just read where you say you're looking for one. Apologies.

If he won't accept personal care, and I understand that some PWD (persons with dementia) never do, then is it possible to get some help or support for your SIL, in the form of cleaners, gardening, chores, shopping, laundry, cooking, whatever? Does she have a carers' cafe or support group in her area?

I do think some people have some success identifying triggers and then finding ways to avoid them or compensate for them. It's perfectly reasonable for you to take this approach. My mother (74, Alzheimer's, no short term memory, now in a care home) gets horribly distressed and agitated talking about money and bills, for example, so I never raise the subject with her, reassure/distract her if she raises it, and have all the mail sent to me so she never sees a bill or bank statement. While this didn't solve the problem completely, it's reduced her anxiety/distress on the subject significantly. For your brother, it seems that the coffee and scone routine is important right now, and so you run with that.

I do hope that if or when the time comes for a care home (whether that's for day care, short-term respite, or a longer placement) that a solution can be find with the right combination of carers, environment, and medication, that will work for your brother. It's so challenging. (I never thought my mother would respond well to the staff in her care home, particularly in the matter of taking medications, as she was always, er, tricky about that. Definitely a "trigger" subject. While it's true that there is one nursing staff member who seems to spark delusions/conflict, generally, my mother does much better than I ever expected. I'm not saying there is a magic solution for your brother, just that I hope it could work out somehow.)

Very best wishes to you and your family.

 

[Ellaroo]

My mother who lives with me has periods of agitation, around receiving assistance with personal care. We have care 4x day specialist dementia carers and psychiatrist at hosptal didnt rec sedation as it would compromise mums mobility making her more risk of falling.
She is triing memantine but needs to be on it for month to see any benefits.

Sw has applied for CHC funding as feels mums behaviour is exceptional, not routine .
Mum has passed stage one and awaiting district nurse and sw ro come and assess stage 2.
I dont think there is an easy solution , just hope itbpasses quickly and younhave enough support when you need it .
Xxx

 

[Adelaide]

Adelaide, I am not a medical professional so take this with a grain of salt, please, but I'd be having a very long conversation with his neurologist about his medications. I understand you have a GP in the family but they are not necessarily an expert on managing dementia. My mother's neurologist has stated time and again that it's very important to be careful with anti-psychotics, as some patients with some types of dementia and some anti-psychotics don't mix well.

When you say "drug trial," do you mean, they are trying a medication that is new (in type or dosage) to your brother, or do you mean, an experimental drug that is in a clinical trial?

I am sorry to hear about what must a very difficult situation for your family. I appreciate that you are exploring options as it must be very hard for your SIL to be on duty every day, and of course you need a backup plan for when she is ill/out of town/unavailable to care for him, for whatever reason.

I wonder if perhaps a male carer might be more acceptable than a female carer, who might be seen as a a threat (in terms of "replacing" SIL)? Oh, wait, I've just read where you say you're looking for one. Apologies.

If he won't accept personal care, and I understand that some PWD (persons with dementia) never do, then is it possible to get some help or support for your SIL, in the form of cleaners, gardening, chores, shopping, laundry, cooking, whatever? Does she have a carers' cafe or support group in her area?

I do think some people have some success identifying triggers and then finding ways to avoid them or compensate for them. It's perfectly reasonable for you to take this approach. My mother (74, Alzheimer's, no short term memory, now in a care home) gets horribly distressed and agitated talking about money and bills, for example, so I never raise the subject with her, reassure/distract her if she raises it, and have all the mail sent to me so she never sees a bill or bank statement. While this didn't solve the problem completely, it's reduced her anxiety/distress on the subject significantly. For your brother, it seems that the coffee and scone routine is important right now, and so you run with that.

I do hope that if or when the time comes for a care home (whether that's for day care, short-term respite, or a longer placement) that a solution can be find with the right combination of carers, environment, and medication, that will work for your brother. It's so challenging. (I never thought my mother would respond well to the staff in her care home, particularly in the matter of taking medications, as she was always, er, tricky about that. Definitely a "trigger" subject. While it's true that there is one nursing staff member who seems to spark delusions/conflict, generally, my mother does much better than I ever expected. I'm not saying there is a magic solution for your brother, just that I hope it could work out somehow.)

Very best wishes to you and your family.

Amy, thank you and others who have responded for your comprehensive answers.
The trials he has been on are for new AD meds. The first one .... it reversed his hair from grizzled grey to the lovely blond curls he used to have. But the trial was stopped. This one makes him pee bright turquoise blue. A hard stain to remove but it's ok. We know this one is too late for him but might help others.
He is of course on Arocept, and on small doses of perhaps one -azepam, and risperdal at night. What's being debated right now is a bit more risperdal in the morning.
The issue that I haven't emphasized enough is his relative youth and physical health. He's a very fit, large, strong man. His personality has softened, generally, with the AD but the an original underlying aspect is always just under the surface ..... irritability and at least verbal aggression, but I fear if thwarted strongly enough (we generally walk on eggshells) he could be a danger to himself or others.
Of course he has the usual AD behaviours, wandering off, night wandering, etc. not knowing any of us. But he loves his wife, his home, has dogs and cat and his wee walks round the garden.
How can we take him away from that and close him in somewhere? He won't go to group day care. We've tried. He will be a raging bull and the "chemical cosh" would be the least of our worries, I fear.
I'm sorry ..... perhaps it's because it was early onset. But my neighbours husband wasn't early onset, he was in his 80s when he went into a care home, was physically and verbally violent and if he hadn't been given seroqurl three times a day, and Ativan PRN, how would the staff have coped? She had been shut in with him for ten years, suffering the verbal abuse.
I wish I could see it as going gently into the good night, softly and lovingly managed .... but I can't. Sorry, not sure where I'm going with this.
So I'll just say thanks again, what will be will be.