Re: Need your advice on a drug (Urgent)

February 19, 2012

Pamela -

Is your Dad's acting-out primarily at night? i.e. sundowning? Or is it

throughout the day?

I believe a low dose anti-anxiety medication is what is in order, such as

Ativan, Xanax, etc. These typically last for 4-6 hrs at a time and if your Dad

is on a routine dose throughout the day, he may sleep through the night w/o the

aggressive dreams.

Prescriptions like these can fairly easy to get, if his MD is in agreement. In

more extreme cases, Haldol can be used.

Besides Neurology, he may need a psych work-up (only for the purposes of

treating his behavior).

He needs sometime that will stay in his system and last through the night.

Good luck!

Jeff Nealy

Author & Clinical Social Worker

www.nursinghomehelpnow.com

>

> Hello Group,

>

> This is my second time to post. I need your advice. My father, Jim, has LBD

and mixed dementias. He is in a phase where he is hallucinating and acting out

his dreams. He is also in a stage of aggression and my mother, Pat, who is his

caregiver is having a difficult time controlling him. Dad and mom are in their

late 70's. When he gets like this you cannot convince him that it is his dreams

instead of reality.

>

> He currently has a psychiatrist from the VA that sees him every few months and

he has him on a drug for depression. His primary care has him on Aricept 10 mg.

Besides those drugs, he isn't taking anything else for LBD. He has Diabetes

Type II Insuline dependent, and a lot of other meds for his heart condition,

etc.

>

> I need your recommendation what type of drugs I can ask his doctor to try him

on for calmness, relaxation. He has been seen by a Neurologist, but that doctor

was not one that would work with us but against us. We are going to try to get

him referred to a specialist for LBD in the near future.

>

> Thank you,

>

> Pam Hutchins

> Daughter of Jim

> that was diagnosed with LBD 2011.

> Jim has had dementia onset longer

> than has been diagnosed with LBD.

>

February 19, 2012

Pamela -

Is your Dad's acting-out primarily at night? i.e. sundowning? Or is it

throughout the day?

I believe a low dose anti-anxiety medication is what is in order, such as

Ativan, Xanax, etc. These typically last for 4-6 hrs at a time and if your Dad

is on a routine dose throughout the day, he may sleep through the night w/o the

aggressive dreams.

Prescriptions like these can fairly easy to get, if his MD is in agreement. In

more extreme cases, Haldol can be used.

Besides Neurology, he may need a psych work-up (only for the purposes of

treating his behavior).

He needs sometime that will stay in his system and last through the night.

Good luck!

Jeff Nealy

Author & Clinical Social Worker

www.nursinghomehelpnow.com

>

> Hello Group,

>

> This is my second time to post. I need your advice. My father, Jim, has LBD

and mixed dementias. He is in a phase where he is hallucinating and acting out

his dreams. He is also in a stage of aggression and my mother, Pat, who is his

caregiver is having a difficult time controlling him. Dad and mom are in their

late 70's. When he gets like this you cannot convince him that it is his dreams

instead of reality.

>

> He currently has a psychiatrist from the VA that sees him every few months and

he has him on a drug for depression. His primary care has him on Aricept 10 mg.

Besides those drugs, he isn't taking anything else for LBD. He has Diabetes

Type II Insuline dependent, and a lot of other meds for his heart condition,

etc.

>

> I need your recommendation what type of drugs I can ask his doctor to try him

on for calmness, relaxation. He has been seen by a Neurologist, but that doctor

was not one that would work with us but against us. We are going to try to get

him referred to a specialist for LBD in the near future.

>

> Thank you,

>

> Pam Hutchins

> Daughter of Jim

> that was diagnosed with LBD 2011.

> Jim has had dementia onset longer

> than has been diagnosed with LBD.

>

February 19, 2012

Pamela,

Be careful of using Haldol in particular, it can make dementias much more

aggravated and have very bad effects on some people with LBD. Go slow and

start low with any new meds and watch for any bad side effects, such as

worsening anxiety and hallucinations, as some meds act in the lbd person

the opposite of what they do in other dementias. My husband had a very bad

paranoid psychotic reaction to Seroquel in 2009 where he had to be

hospitalized in a locked psych ward for weeks as they weaned him off of all

his meds.

Acting out his dreams is very common behavior at night for LBD. My husband

takes Melatonin over the counter 3mg. at bedtime and it helps some. You

can go to the online site for more information on their forums at

www.lbd.org and read about meds to help your Dad. Dr. Boeve from Mayo

Clinic recommends using Klonopin perhaps with Melatonin for sleep disorder

behavior in LBD. Does your Dad also have a diagnosis of post traumatic

stress disorder from the VA, as I noticed you wrote he is getting his care

and meds from the VA?

Good Luck,

Pat M.

58, Wife/caregiver of Bob, 75, dx PD 2003, LBD 2009, now in a rehab center

post hip fracture and hip replacement surgery 01/09/2012.

> **

>

> Pamela -

>

> Is your Dad's acting-out primarily at night? i.e. sundowning? Or is it

> throughout the day?

>

> I believe a low dose anti-anxiety medication is what is in order, such as

> Ativan, Xanax, etc. These typically last for 4-6 hrs at a time and if your

> Dad is on a routine dose throughout the day, he may sleep through the night

> w/o the aggressive dreams.

>

> Prescriptions like these can fairly easy to get, if his MD is in

> agreement. In more extreme cases, Haldol can be used.

>

> Besides Neurology, he may need a psych work-up (only for the purposes of

> treating his behavior).

>

> He needs sometime that will stay in his system and last through the night.

>

> Good luck!

>

> Jeff Nealy

> Author & Clinical Social Worker

> www.nursinghomehelpnow.com

>

> >

> > Hello Group,

> >

> > This is my second time to post. I need your advice. My father, Jim, has

> LBD and mixed dementias. He is in a phase where he is hallucinating and

> acting out his dreams. He is also in a stage of aggression and my mother,

> Pat, who is his caregiver is having a difficult time controlling him. Dad

> and mom are in their late 70's. When he gets like this you cannot convince

> him that it is his dreams instead of reality.

> >

> > He currently has a psychiatrist from the VA that sees him every few

> months and he has him on a drug for depression. His primary care has him on

> Aricept 10 mg. Besides those drugs, he isn't taking anything else for LBD.

> He has Diabetes Type II Insuline dependent, and a lot of other meds for his

> heart condition, etc.

> >

> > I need your recommendation what type of drugs I can ask his doctor to

> try him on for calmness, relaxation. He has been seen by a Neurologist, but

> that doctor was not one that would work with us but against us. We are

> going to try to get him referred to a specialist for LBD in the near

> future.

> >

> > Thank you,

> >

> > Pam Hutchins

> > Daughter of Jim

> > that was diagnosed with LBD 2011.

> > Jim has had dementia onset longer

> > than has been diagnosed with LBD.

> >

>

February 19, 2012

Pamela,

Be careful of using Haldol in particular, it can make dementias much more

aggravated and have very bad effects on some people with LBD. Go slow and

start low with any new meds and watch for any bad side effects, such as

worsening anxiety and hallucinations, as some meds act in the lbd person

the opposite of what they do in other dementias. My husband had a very bad

paranoid psychotic reaction to Seroquel in 2009 where he had to be

hospitalized in a locked psych ward for weeks as they weaned him off of all

his meds.

Acting out his dreams is very common behavior at night for LBD. My husband

takes Melatonin over the counter 3mg. at bedtime and it helps some. You

can go to the online site for more information on their forums at

www.lbd.org and read about meds to help your Dad. Dr. Boeve from Mayo

Clinic recommends using Klonopin perhaps with Melatonin for sleep disorder

behavior in LBD. Does your Dad also have a diagnosis of post traumatic

stress disorder from the VA, as I noticed you wrote he is getting his care

and meds from the VA?

Good Luck,

Pat M.

58, Wife/caregiver of Bob, 75, dx PD 2003, LBD 2009, now in a rehab center

post hip fracture and hip replacement surgery 01/09/2012.

> **

>

> Pamela -

>

> Is your Dad's acting-out primarily at night? i.e. sundowning? Or is it

> throughout the day?

>

> I believe a low dose anti-anxiety medication is what is in order, such as

> Ativan, Xanax, etc. These typically last for 4-6 hrs at a time and if your

> Dad is on a routine dose throughout the day, he may sleep through the night

> w/o the aggressive dreams.

>

> Prescriptions like these can fairly easy to get, if his MD is in

> agreement. In more extreme cases, Haldol can be used.

>

> Besides Neurology, he may need a psych work-up (only for the purposes of

> treating his behavior).

>

> He needs sometime that will stay in his system and last through the night.

>

> Good luck!

>

> Jeff Nealy

> Author & Clinical Social Worker

> www.nursinghomehelpnow.com

>

> >

> > Hello Group,

> >

> > This is my second time to post. I need your advice. My father, Jim, has

> LBD and mixed dementias. He is in a phase where he is hallucinating and

> acting out his dreams. He is also in a stage of aggression and my mother,

> Pat, who is his caregiver is having a difficult time controlling him. Dad

> and mom are in their late 70's. When he gets like this you cannot convince

> him that it is his dreams instead of reality.

> >

> > He currently has a psychiatrist from the VA that sees him every few

> months and he has him on a drug for depression. His primary care has him on

> Aricept 10 mg. Besides those drugs, he isn't taking anything else for LBD.

> He has Diabetes Type II Insuline dependent, and a lot of other meds for his

> heart condition, etc.

> >

> > I need your recommendation what type of drugs I can ask his doctor to

> try him on for calmness, relaxation. He has been seen by a Neurologist, but

> that doctor was not one that would work with us but against us. We are

> going to try to get him referred to a specialist for LBD in the near

> future.

> >

> > Thank you,

> >

> > Pam Hutchins

> > Daughter of Jim

> > that was diagnosed with LBD 2011.

> > Jim has had dementia onset longer

> > than has been diagnosed with LBD.

> >

>

February 19, 2012

Wow, that's a lot of medication to manage. Of course the specialist will give

you

their opinion, but my hunch would be to first stop the antidepressant. -muddies

the

waters without definite benefit. My dad responded well to increased Aricept. He

now

takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose of a

sleeping med that is often prescribed now for LBD patients. It helps him to have

more

consistent REM sleep at night without acting out. His confusion is in the

evenings,

mostly, and he reacts with less anger and paranoia. His hallucinations are a

rare

occurrence now. He is 80 on his 4th year of distinct symptoms. No other health

issues

or meds, though.

>

February 19, 2012

Wow, that's a lot of medication to manage. Of course the specialist will give

you

their opinion, but my hunch would be to first stop the antidepressant. -muddies

the

waters without definite benefit. My dad responded well to increased Aricept. He

now

takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose of a

sleeping med that is often prescribed now for LBD patients. It helps him to have

more

consistent REM sleep at night without acting out. His confusion is in the

evenings,

mostly, and he reacts with less anger and paranoia. His hallucinations are a

rare

occurrence now. He is 80 on his 4th year of distinct symptoms. No other health

issues

or meds, though.

>

February 19, 2012

Wow, that's a lot of medication to manage. Of course the specialist will give

you

their opinion, but my hunch would be to first stop the antidepressant. -muddies

the

waters without definite benefit. My dad responded well to increased Aricept. He

now

takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose of a

sleeping med that is often prescribed now for LBD patients. It helps him to have

more

consistent REM sleep at night without acting out. His confusion is in the

evenings,

mostly, and he reacts with less anger and paranoia. His hallucinations are a

rare

occurrence now. He is 80 on his 4th year of distinct symptoms. No other health

issues

or meds, though.

>

February 19, 2012

I meant to write www.lbda.org, sorry Pamela, I left off the 'a' in my first

post.

Pat M

> **

>

> Wow, that's a lot of medication to manage. Of course the specialist will

> give you

> their opinion, but my hunch would be to first stop the antidepressant.

> -muddies the

> waters without definite benefit. My dad responded well to increased

> Aricept. He now

> takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose

> of a

> sleeping med that is often prescribed now for LBD patients. It helps him

> to have more

> consistent REM sleep at night without acting out. His confusion is in the

> evenings,

> mostly, and he reacts with less anger and paranoia. His hallucinations are

> a rare

> occurrence now. He is 80 on his 4th year of distinct symptoms. No other

> health issues

> or meds, though.

>

> >

>

> >

>

February 19, 2012

I meant to write www.lbda.org, sorry Pamela, I left off the 'a' in my first

post.

Pat M

> **

>

> Wow, that's a lot of medication to manage. Of course the specialist will

> give you

> their opinion, but my hunch would be to first stop the antidepressant.

> -muddies the

> waters without definite benefit. My dad responded well to increased

> Aricept. He now

> takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose

> of a

> sleeping med that is often prescribed now for LBD patients. It helps him

> to have more

> consistent REM sleep at night without acting out. His confusion is in the

> evenings,

> mostly, and he reacts with less anger and paranoia. His hallucinations are

> a rare

> occurrence now. He is 80 on his 4th year of distinct symptoms. No other

> health issues

> or meds, though.

>

> >

>

> >

>

February 19, 2012

I meant to write www.lbda.org, sorry Pamela, I left off the 'a' in my first

post.

Pat M

> **

>

> Wow, that's a lot of medication to manage. Of course the specialist will

> give you

> their opinion, but my hunch would be to first stop the antidepressant.

> -muddies the

> waters without definite benefit. My dad responded well to increased

> Aricept. He now

> takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose

> of a

> sleeping med that is often prescribed now for LBD patients. It helps him

> to have more

> consistent REM sleep at night without acting out. His confusion is in the

> evenings,

> mostly, and he reacts with less anger and paranoia. His hallucinations are

> a rare

> occurrence now. He is 80 on his 4th year of distinct symptoms. No other

> health issues

> or meds, though.

>

> >

>

> >

>

February 19, 2012

Pamela,

> This is the recommended treatment plan for lbd from the www.LBDA.org

> website.

> Best Wishes,

> Pat M.

>

>> **

>>

>> -

>>

>> [image: Home] <http://www.lbda.org/>

>>

>> Emergency Room Treatment of Psychosis

>> *Developed in consultation with LBDA's Scientific Advisory

Council<http://www337.pair.com/lbda2007/node/27>

>> *

>>

>> Overview

>>

>> The term Lewy body dementias (LBD) represents two clinical entities –

>> dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).

>> While the temporal sequence of symptoms is different in DLB and PDD,

>> individuals with Lewy body dementias have a progressive dementia plus any

>> combination of the following symptoms: hallucinations, Parkinsonism,

>> fluctuating cognitive abilities, REM behavior disorder and severe

>> sensitivity to neuroleptics. Because DLB and PDD have essentially the same

>> symptoms and treatment issues, we will use LBD as an umbrella term

>> representing both clinical entities.

>>

>> Visual hallucinations occur in up to 80 % of patients with LBD (and are

>> considered a Core feature of DLB). If hallucinations are not frightening to

>> the patient, even if they are considered bothersome by the family, drug

>> therapy may not be needed. The goal of addressing behavioral disturbances

>> in LBD is to ensure the safety of the patient and others. If long term

>> treatment with cholinesterase inhibitors is ineffective, or more acute

>> symptom control of behavior is required, it may be difficult to avoid a

>> cautious trial of an atypical antipsychotic. The clinician should warn both

>> the caregiver and patient of the possibility of a severe sensitivity

>> reaction which occurs in an estimated 25-50% of patients administered

>> antipsychotic drugs in the usual dose range. This is characterized by by

>> worsening cognition, sedation, increased or possibly irreversible acute

>> onset parkinsonism, or symptoms resembling neuroleptic malignant syndrome,

>> which can be fatal. *Typical antipsychotics should be avoided.

>> Injectable administration which avoids first pass metabolism is likely to

>> be particularly hazardous.*

>>

>> There is no consistent evidence that any particular atypical

>> antipsychotic is safer than others in LBD and efficacy is not established

>> for any of them. *A survey of clinicians experienced in managing LBD

>> found a significant preference for quetiapine and trial data suggests that

>> clozapine might be used for control of psychotic symptoms such as

>> hallucinations and delusions in the non-acute situation. *If any

>> antipsychotic is administered to a person with LBD it is suggested that

>> dosing starts low, that the patient is regularly examined for the emergence

>> of side effects including parkinsonism, sedation, increased confusion or

>> autonomic dysfunction and that referral is made as soon as possible to a

>> specialist experienced in treating LBD (usually a geriatric psychiatrist,

>> neurologist or geriatrician).

>>

>> Key Considerations to Take BEFORE Treating Behavioral Disturbances in LBD

>>

>> 1. The first line measure in treating problematic behaviors such as

>> hallucinations should be to evaluate for physical ailments that may be

>> provoking behavioral disturbances (fecal impaction, pain, decubitus

ulcers,

>> urinary tract infection, bronchitis/pneumonitis, etc.).

>> 2. Avoidance of or reduction of doses of other medications that can

>> potentially cause agitation should also be attempted, such as OTC sleep

>> agents and bladder-control medications, and reducing dopaminergic drugs

>> used to treat Parkinson’s disease, if clinically indicated.

Benzodiazepines

>> are better avoided given their risk of sedation, increasing risk of falls,

>> and paradoxical agitation.

>> 3. If pharmacologic treatment of hallucinations, delusions or

>> agitated behavior is needed, *traditional antipsychotics (e.g.

>> haloperidol) should be avoided.*

>> 4. When other medications are needed urgently to modify behaviors,

>> they should be used for the shortest duration possible, and the clinician

>> should warn both the caregiver and patient of the possibility of a severe

>> sensitivity reaction.

>>

>> Treatment Options

>>

>> Although no evidence-based guidelines exist to guide specific

>> pharmacotherapy for hallucinations and behavioral symptoms in LBD, the

>> following background literature review is provided for reference and

>> guidance.

>>

>> *a. AChEI for behavioral symptoms*

>> Cholinergic deficits appear to be related to psychosis in LBD, which

>> correlates with low CHAT activity and increased muscarinic receptor

>> binding. Visual hallucinations may be predictors of a good response to

>> cholinesterase inhibitors (AChEIs), including donepezil, rivastigmine and

>> galantamine .

>>

>> A meta-analysis of 6 large trials in AD showed a small but significant

>> benefit of AChEI treatment in decreasing neuropyschiatric symptoms. There

>> also appears to be a differential effect of AChEI on different psychiatric

>> symptoms, with psychosis and anxiety being the most consistently

>> responsive.

>>

>> A few reports are available for behavioral improvement with the use of

>> the AChEI rivastigmine in LBD. In a large multicenter trial, rivastigmine

>> resulted in improvement by 30% from baseline in psychiatric symptoms. In a

>> recent case control study of rivastigmine, treatment was associated with

>> reduction in total behavioral scores, hallucinations and sleep disturbance

>> compared to AD. There were lower rates of apathy, anxiety, delusions and

>> hallucinations in the treatment group compared to controls.

>>

>> *Medication*

>> *Generic Name (Brand Name) *

>>

>> *Starting Dose *

>>

>> *Suggested Titrating Schedule*

>>

>> *Typical Therapeutic Range*

>> donepezil

>> 5 mg every morning Increase to 10 mg every morning 4 weeks later 5 mg

>> every morning to

>> 10 mg every morning

>> rivastigmine 1.5 mg every morning and evening;

>> with meals

>> Increase in 1.5 mg increments for both doses every 4 to 6 weeks, maximum

>> 6 mg every morning and evening. (The insert recommendation indicates

>> titrating in 2-4 week increments, but 2 weeks may be too rapid for many LBD

>> patients.)

>> 1.5 mg every morning and evening to

>> 6.0 mg every morning and evening

>> rivastigmine patch 4.6 mg/24 hr Change to 9.5 mg/24 hr 4 weeks later4.6

mg/24 hr

>> 9.5 mg/24 hr

>> galantamine

>>

>> 8 mg every morning Increase in 8 mg increments every 4 weeks, maximum

>> 24 mg every morning 8 mg every morning to

>> 24 mg every morning

>>

>> *b. Antipsychotics *

>>

>> Severe neuroleptic sensitivity affects up to 50% of the LBD patients who

>> are treated with traditional antipsychotic medications, and is

>> characterized by worsening cognition, sedation, increased or possibly

>> irreversible acute onset parkinsonism, or symptoms resembling neuroleptic

>> malignant syndrome, which can be fatal.

>>

>> AChEIs are a long term treatment strategy, and benefits are not observed

>> immediately. In situations where psychotic symptoms pose a significant

>> safety risk to the patient, caregiver or family, it may be difficult to

>> avoid a cautious trial of an atypical antipsychotic.

>>

>> The management of psychosis in DLB has been mostly based on results of

>> trials in AD and follows the general guidelines of pharmacotherapy in

>> geriatric populations. According to the FDA, “in analyses of seventeen

>> placebo-controlled studies of four drugs in this class (atypical

>> antipsychotics), the rate of death for those elderly patients with dementia

>> was about 1.6 to 1.7 times that of placebo. Although the causes of death

>> were varied, most deaths seemed to be either heart-related (such as heart

>> failure or sudden death) or from infections (pneumonia).”

>>

>> In addition, some recommendations for the use of antipsychotics in DLB

>> are based on studies in PD which has similar synuclein-based pathology.

>> This may be misleading given the extreme sensitivity of some DLB patients

>> to even low doses of antipsychotics, producing sedation, parkinsonism and

>> autonomic dysfunction with significantly increased morbidity and mortality.

>> Conversely, the use of antipsychotics in AD may also mislead physicians to

>> assume patients with LBD would respond to antipsychotics the same as AD

>> patients.

>>

>> The FDA’s ‘black box warning’ and the risks of sensitivity reactions

>> indicates that these drugs are not approved for the routine treatment of

>> mild to moderate behavioral symptoms in elderly patients with dementia.

>> Physicians should discuss the risks and benefits of these types of

>> medications, so that LBD patients and caregivers can consider issues of

>> quality of life against the risks associated with them.

>>

>> *NOTE: Typical antipsychotics (such as haloperidol) and atypical

>> antipsychotics with relatively strong D2 receptor antagonism (such as

>> olanzapine and risperidone) should be avoided due to the risk of

>> neuroleptic malignant syndrome, parkinsonism, somnolence and orthostatic

>> hypotension. *

>>

>> A survey of clinicians experienced in managing LBD found a preference for

>> quetiapine and trial data suggests that clozapine might be used for control

>> of psychotic symptoms in the non-acute situation. (The American Academy of

>> Neurology, in 2006, endorsed the use of quetiapine for psychotic symptoms

>> in PD, with clozapine as the second line choice.)

>>

>> - Quetiapine has become a popular treatment of psychosis in LBD given

>> the low incidence of motor deterioration and its ability to control visual

>> hallucinations with low doses. Efficacy and tolerability has been

>> documented in both PD and DLB, however most data is from unblinded,

>> open-label studies.

>> - Clozapine has been demonstrated to be effective for PD psychosis in

>> two randomized clinical trials on different continents. However, due to

the

>> potentially fatal adverse event of agranulocytosis in 1-2% blood

monitoring

>> is required, it is not first line.

>>

>> *Medication*

>>

>> *Starting Dose*

>>

>> *Suggested Titrating Schedule*

>>

>> *Typical Therapeutic Range*

>> quetiapine 25 mg before bed Increase in 25 mg increments every 3 days 25

>> mg before bed to

>> 100 mg every morning /

>> 400 mg every night

>> clozapine

>>

>> 12.5 mg before bed Increase in 12.5-mg

>> increments every 2 to 3 days

>> 12.5 mg before bed to 50 mg three times daily

>>

<http://www.linkedin.com/groups?mostPopular= & gid=1107077><http://www.youtube.com\

/user/LBDAtv><http://www.facebook.com/LewyBodyDementia>

>>

>> Lewy Body Dementia Association, Inc. 912 Killian Hill Road S.W., Lilburn,

>> GA 30047

>>

>> Wow, that's a lot of medication to manage. Of course the specialist will

>> give you

>> their opinion, but my hunch would be to first stop the antidepressant.

>> -muddies the

>> waters without definite benefit. My dad responded well to increased

>> Aricept. He now

>> takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose

>> of a

>> sleeping med that is often prescribed now for LBD patients. It helps him

>> to have more

>> consistent REM sleep at night without acting out. His confusion is in the

>> evenings,

>> mostly, and he reacts with less anger and paranoia. His hallucinations

>> are a rare

>> occurrence now. He is 80 on his 4th year of distinct symptoms. No other

>> health issues

>> or meds, though.

>>

>> >

>>

>> >

>>

>

February 19, 2012

Pamela,

I would like to jump in to add my support to the information provided by

.Â Please tread very carefully with the use of antipsychotics. I have

not yet had to deal with that issue for Kathy at this time, however, the

literature and personal experiences posted on this site as well as others are

replete with heart breaking events associated with inappropriate use of this

class of drugs. In the opinion of many, Haldol (generic name: haloperidol) seems

to be one of the major offenders.Â It is imperative to " start low and go slow "

regardless of the agent selected.

In addition to the Boeve MD, Mayo Clinic state of the art recommendations, I

would bring the following to your attention the following letter to the

editor.Â I don't recall where I got it, but I have it printed up in Kathy's

" Grab-N-Go " envelope.Â I have also added Haldol as drug allergy so she it is

not inadvertently administered by an uninformed healthcare provider.

Sunday,

July 02, 2006

Antipsychotics as deadly, dangerous, almost never advisable.

7 2 06

Â Neurology:

Volume 6(4) 21 February 2006 p 4

ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG'

[LETTER TO THE EDITOR]

Caplan, Louis R. MD

Professor Neurology, Harvard Medical School, Boston, MA

Regarding Increased Risk of Death with Antipsychotics for Demented Elderly

(Jan. 3, page 18), I believe that the adverse effects of these agents in this

group of patients are just the tip of an iceberg. The overuse and abuse of

antipsychotics (typical and atypical), especially haloperidol and risperidol,

may cause the death and morbidity of patients who have been admitted to a

hospital for an acute illness. These drugs, used to control agitation, are

often given in high doses to very sick patients in intensive care units or on

medical and surgical units.

Agitation is not a disease; it is a symptom of complex medical and neurological

problems. Unfortunately, the antipsychotics cause oversedation that impairs

speech

and other interactions making it difficult to take a history or perform the

neurological examination.

A neuropharmacological colleague called haloperidol and risperidol medical

straight-jackets. They make patients feel wooden and grossly diminish activity

and communication skills. When patients rebound and become more alert they

naturally become agitated and then they are knocked down again, often with high

doses of haloperidol. It may take weeks and months for the CNS effects of

haloperidol to wear off.

In two different studies, Dennis M. Feeney, PhD, and colleagues found that even

single doses of haloperidol in experimental animals and humans with strokes

retarded recovery by two weeks (Science 1982; 217:855-857); (Proc West

Pharmacol Soc 1985: 28:209-211). In later studies, Larry B. Goldstein, MD, and

the late Jim , MD, showed that these antipsychotic drugs adversely affect

recovery (Stroke 1990;21(Suppl 3):139-142); (Neurology 1988;38:1806-1809);

(Arch Neurol 1998;55:454-456).

In the 15 years that I chaired the Neurology Department at the New England

Medical Center, we forbade the use of haloperidol for neurology patients.

Originally, these antipsychotics were used for young schizophrenic patients.

Old sick people with abnormal brains do not tolerate these drugs well. In

patients with Lewy-body disease and some Parkinsonian syndromes, their use is a

disaster, setting patients back for weeks.

I know that most neurologists are circumspect about the use of haloperidol and

risperidol but psychiatrists, non-neurology intensivists, and surgeons are not,

and these drugs are grossly over-prescribed and overused. They cause symptoms

and neurological dysfunctions that are a common reason for neurological

consultations in the hospital.

Perhaps a collection of cases collaborated on by neurologists and a position

paper by the AAN will help to stem this large public health preventable

problem.

Louis R. Caplan, MD

Professor Neurology, Harvard Medical School, Boston, MA

Â

I have also attached an article of interest from the American Academy of FP

which was the subject of discussion on this site a while back.Â I have also

printed this and keep it with Kathy's info. It's value to me lies in the chart

which compares the various aspects of LBD with AD and PDD. It will provide me

with talking points to the HC providers if needed along with documented third

party support. Unfortuanely, for too many out there, a dementia is a dementia.

From a personal obersvation, I have dropped off literature from the LBDA at

several ER's at major hospitals.Â I was surprised that their awwarenes of Lewy

was very low and most treatment protocols called for a neuro consult when

possible. They would follow the recommendations of the neuro or resident on

call.

I, like others, send you our very best wishes.

God Bless

JeffÂ

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBDcaregivers

>Sent: Sunday, February 19, 2012 9:55 AM

>Subject: Re: Re: Need your advice on a drug (Urgent)

>

>Pamela,

>> This is the recommended treatment plan for lbd from the www.LBDA.org

>>Â website.

>> Best Wishes,

>> Pat M.

>>

>>> **

>>>

>>>Â Â -

>>>

>>> [image: Home] <http://www.lbda.org/>

>>>

>>> Emergency Room Treatment of Psychosis

>>> *Developed in consultation with LBDA's Scientific Advisory

Council<http://www337.pair.com/lbda2007/node/27>

>>> *

>>>

>>> Overview

>>>

>>> The term Lewy body dementias (LBD) represents two clinical entities â€“

>>> dementia with Lewy bodies (DLB) and Parkinsonâ€™s disease dementia (PDD).

>>> While the temporal sequence of symptoms is different in DLB and PDD,

>>> individuals with Lewy body dementias have a progressive dementia plus any

>>> combination of the following symptoms: hallucinations, Parkinsonism,

>>> fluctuating cognitive abilities, REM behavior disorder and severe

>>> sensitivity to neuroleptics. Because DLB and PDD have essentially the same

>>> symptoms and treatment issues, we will use LBD as an umbrella term

>>> representing both clinical entities.

>>>

>>> Visual hallucinations occur in up to 80 % of patients with LBD (and are

>>> considered a Core feature of DLB). If hallucinations are not frightening to

>>> the patient, even if they are considered bothersome by the family, drug

>>> therapy may not be needed. The goal of addressing behavioral disturbances

>>> in LBD is to ensure the safety of the patient and others. If long term

>>> treatment with cholinesterase inhibitors is ineffective, or more acute

>>> symptom control of behavior is required, it may be difficult to avoid a

>>> cautious trial of an atypical antipsychotic. The clinician should warn both

>>> the caregiver and patient of the possibility of a severe sensitivity

>>> reaction which occurs in an estimated 25-50% of patients administered

>>> antipsychotic drugs in the usual dose range. This is characterized by by

>>> worsening cognition, sedation, increased or possibly irreversible acute

>>> onset parkinsonism, or symptoms resembling neuroleptic malignant syndrome,

>>> which can be fatal. *Typical antipsychotics should be avoided.

>>> Injectable administration which avoids first pass metabolism is likely to

>>> be particularly hazardous.*

>>>

>>> There is no consistent evidence that any particular atypical

>>> antipsychotic is safer than others in LBD and efficacy is not established

>>> for any of them. *A survey of clinicians experienced in managing LBD

>>> found a significant preference for quetiapine and trial data suggests that

>>> clozapine might be used for control of psychotic symptoms such as

>>> hallucinations and delusions in the non-acute situation. *If any

>>> antipsychotic is administered to a person with LBD it is suggested that

>>> dosing starts low, that the patient is regularly examined for the emergence

>>> of side effects including parkinsonism, sedation, increased confusion or

>>> autonomic dysfunction and that referral is made as soon as possible to a

>>> specialist experienced in treating LBD (usually a geriatric psychiatrist,

>>> neurologist or geriatrician).

>>>

>>> Key Considerations to Take BEFORE Treating Behavioral Disturbances in LBD

>>>

>>>Â Â 1. The first line measure in treating problematic behaviors such as

>>>Â Â hallucinations should be to evaluate for physical ailments that may be

>>>Â Â provoking behavioral disturbances (fecal impaction, pain, decubitus

ulcers,

>>>Â Â urinary tract infection, bronchitis/pneumonitis, etc.).

>>>Â Â 2. Avoidance of or reduction of doses of other medications that can

>>>Â Â potentially cause agitation should also be attempted, such as OTC sleep

>>>Â Â agents and bladder-control medications, and reducing dopaminergic drugs

>>>Â Â used to treat Parkinsonâ€™s disease, if clinically indicated.

Benzodiazepines

>>>Â Â are better avoided given their risk of sedation, increasing risk of

falls,

>>>Â Â and paradoxical agitation.

>>>Â Â 3. If pharmacologic treatment of hallucinations, delusions or

>>>Â Â agitated behavior is needed, *traditional antipsychotics (e.g.

>>>Â Â haloperidol) should be avoided.*

>>>Â Â 4. When other medications are needed urgently to modify behaviors,

>>>Â Â they should be used for the shortest duration possible, and the

clinician

>>>Â Â should warn both the caregiver and patient of the possibility of a

severe

>>>Â Â sensitivity reaction.

>>>

>>> Treatment Options

>>>

>>> Although no evidence-based guidelines exist to guide specific

>>> pharmacotherapy for hallucinations and behavioral symptoms in LBD, the

>>> following background literature review is provided for reference and

>>> guidance.

>>>

>>> *a. AChEI for behavioral symptoms*

>>> Cholinergic deficits appear to be related to psychosis in LBD, which

>>> correlates with low CHAT activity and increased muscarinic receptor

>>> binding. Visual hallucinations may be predictors of a good response to

>>> cholinesterase inhibitors (AChEIs), including donepezil, rivastigmine and

>>> galantamine .

>>>

>>> A meta-analysis of 6 large trials in AD showed a small but significant

>>> benefit of AChEI treatment in decreasing neuropyschiatric symptoms. There

>>> also appears to be a differential effect of AChEI on different psychiatric

>>> symptoms, with psychosis and anxiety being the most consistently

>>> responsive.

>>>

>>> A few reports are available for behavioral improvement with the use of

>>> the AChEI rivastigmine in LBD. In a large multicenter trial, rivastigmine

>>> resulted in improvement by 30% from baseline in psychiatric symptoms. In a

>>> recent case control study of rivastigmine, treatment was associated with

>>> reduction in total behavioral scores, hallucinations and sleep disturbance

>>> compared to AD. There were lower rates of apathy, anxiety, delusions and

>>> hallucinations in the treatment group compared to controls.

>>>

>>> *Medication*

>>> *Generic Name (Brand Name) *

>>>

>>> *Starting Dose *

>>>

>>> *Suggested Titrating Schedule*

>>>

>>> *Typical Therapeutic Range*

>>> donepezil

>>>Â 5 mg every morning Increase to 10 mg every morning 4 weeks later 5 mg

>>> every morning to

>>> 10 mg every morning

>>>Â rivastigmine 1.5 mg every morning and evening;

>>> with meals

>>>Â Increase in 1.5 mg increments for both doses every 4 to 6 weeks, maximum

>>> 6 mg every morning and evening. (The insert recommendation indicates

>>> titrating in 2-4 week increments, but 2 weeks may be too rapid for many LBD

>>> patients.)

>>>Â 1.5 mg every morning and evening to

>>> 6.0 mg every morning and evening

>>>Â rivastigmine patch 4.6 mg/24 hr Change to 9.5 mg/24 hr 4 weeks later4.6

mg/24 hr

>>> 9.5 mg/24 hr

>>>Â galantamine

>>>

>>>Â 8 mg every morning Increase in 8 mg increments every 4 weeks, maximum

>>> 24 mg every morning 8 mg every morning to

>>> 24 mg every morning

>>>

>>> *b. Antipsychotics *

>>>

>>> Severe neuroleptic sensitivity affects up to 50% of the LBD patients who

>>> are treated with traditional antipsychotic medications, and is

>>> characterized by worsening cognition, sedation, increased or possibly

>>> irreversible acute onset parkinsonism, or symptoms resembling neuroleptic

>>> malignant syndrome, which can be fatal.

>>>

>>> AChEIs are a long term treatment strategy, and benefits are not observed

>>> immediately. In situations where psychotic symptoms pose a significant

>>> safety risk to the patient, caregiver or family, it may be difficult to

>>> avoid a cautious trial of an atypical antipsychotic.

>>>

>>> The management of psychosis in DLB has been mostly based on results of

>>> trials in AD and follows the general guidelines of pharmacotherapy in

>>> geriatric populations. According to the FDA, â€œin analyses of seventeen

>>> placebo-controlled studies of four drugs in this class (atypical

>>> antipsychotics), the rate of death for those elderly patients with dementia

>>> was about 1.6 to 1.7 times that of placebo. Although the causes of death

>>> were varied, most deaths seemed to be either heart-related (such as heart

>>> failure or sudden death) or from infections (pneumonia).â€

>>>

>>> In addition, some recommendations for the use of antipsychotics in DLB

>>> are based on studies in PD which has similar synuclein-based pathology.

>>> This may be misleading given the extreme sensitivity of some DLB patients

>>> to even low doses of antipsychotics, producing sedation, parkinsonism and

>>> autonomic dysfunction with significantly increased morbidity and mortality.

>>> Conversely, the use of antipsychotics in AD may also mislead physicians to

>>> assume patients with LBD would respond to antipsychotics the same as AD

>>> patients.

>>>

>>> The FDAâ€™s â€˜black box warningâ€™ and the risks of sensitivity reactions

>>> indicates that these drugs are not approved for the routine treatment of

>>> mild to moderate behavioral symptoms in elderly patients with dementia.

>>> Physicians should discuss the risks and benefits of these types of

>>> medications, so that LBD patients and caregivers can consider issues of

>>> quality of life against the risks associated with them.

>>>

>>> *NOTE: Typical antipsychotics (such as haloperidol) and atypical

>>> antipsychotics with relatively strong D2 receptor antagonism (such as

>>> olanzapine and risperidone) should be avoided due to the risk of

>>> neuroleptic malignant syndrome, parkinsonism, somnolence and orthostatic

>>> hypotension. *

>>>

>>> A survey of clinicians experienced in managing LBD found a preference for

>>> quetiapine and trial data suggests that clozapine might be used for control

>>> of psychotic symptoms in the non-acute situation. (The American Academy of

>>> Neurology, in 2006, endorsed the use of quetiapine for psychotic symptoms

>>> in PD, with clozapine as the second line choice.)

>>>

>>>Â Â - Quetiapine has become a popular treatment of psychosis in LBD given

>>>Â Â the low incidence of motor deterioration and its ability to control

visual

>>>Â Â hallucinations with low doses. Efficacy and tolerability has been

>>>Â Â documented in both PD and DLB, however most data is from unblinded,

>>>Â Â open-label studies.

>>>Â Â - Clozapine has been demonstrated to be effective for PD psychosis in

>>>Â Â two randomized clinical trials on different continents. However, due to

the

>>>Â Â potentially fatal adverse event of agranulocytosis in 1-2% blood

monitoring

>>>Â Â is required, it is not first line.

>>>

>>> *Medication*

>>>

>>> *Starting Dose*

>>>

>>> *Suggested Titrating Schedule*

>>>

>>> *Typical Therapeutic Range*

>>> quetiapine 25 mg before bed Increase in 25 mg increments every 3 days 25

>>> mg before bed to

>>> 100 mg every morning /

>>> 400 mg every night

>>>Â clozapine

>>>

>>>Â 12.5 mg before bed Increase in 12.5-mg

>>> increments every 2 to 3 days

>>>Â 12.5 mg before bed to 50 mg three times daily

>>>

>>>Â Â

<http://www.linkedin.com/groups?mostPopular= & gid=1107077><http://www.youtube.com\

/user/LBDAtv><http://www.facebook.com/LewyBodyDementia>

>>>

>>> Lewy Body Dementia Association, Inc. 912 Killian Hill Road S.W., Lilburn,

>>> GA 30047

>>>

>>> Wow, that's a lot of medication to manage. Of course the specialist will

>>> give you

>>> their opinion, but my hunch would be to first stop the antidepressant.

>>> -muddies the

>>> waters without definite benefit. My dad responded well to increased

>>> Aricept. He now

>>> takes 20 mg daily of Aricept. -but also Namenda and an EXTREMELY low dose

>>> of a

>>> sleeping med that is often prescribed now for LBD patients. It helps him

>>> to have more

>>> consistent REM sleep at night without acting out. His confusion is in the

>>> evenings,

>>> mostly, and he reacts with less anger and paranoia. His hallucinations

>>> are a rare

>>> occurrence now. He is 80 on his 4th year of distinct symptoms. No other

>>> health issues

>>> or meds, though.

>>>

>>> >

>>>

>>> >

>>>

>>>Â

>>>

>>

>

February 19, 2012

In my post this morning, I mentioned a VERY low dose of a 'sleeping med'. I

should have done a little more research to refresh my memory and records. It is

actually this, about which posted within her helpful post:

" A survey of clinicians experienced in managing LBD found a preference for

quetiapine and trial data suggests that CLOZAPINE (caps mine) might be used for

control of psychotic symptoms in the non-acute situation. (The American Academy

of Neurology, in 2006, endorsed the use of quetiapine for psychotic symptoms in

PD, with CLOZAPINE as the second line choice.) "

Dad takes maybe 1/2 to 1/4 of the lowest dose available by prescription. The

neurologist told them it was a pill to help him sleep, which it does. It also

has addressed his increasingly agitated behavior in response to confusion and

not knowing/recognizing who my mother is (and therefore, where his wife could

be. -How could we all be keeping her from him? -A tragically sad and

all-to-familiar scenario for him.)

I did the research and found how and why the CLOZAPINE is used and was satisfied

we'd started with it, but at a very low dose.

-Just wanted to clarify and give you more " combat zone " experience.

Ida

February 20, 2012

Pamela,

From your message, your dad is seeing a psychiatrist in addition to his

primary care doc. You weren't happy with the previous neurologist.

Based on my experience with my husband Larry (age 73, diagnosed with LBD

November, 2007), a knowledgeable neurologist can be your dad's best

resource and advocate. My husband is fortunate to see Dr. Growdon, ,

an internationally-known expert on LBD, at Mass. General Hospital -- but

most neurologists exercise the exquisite care needed with LBD patients, who

may react unpredictably to even the slightest change in meds.

I hope that you find a neurologist you trust to manage his care, soon. The

neurologist, in my opinion, should be consulted before making *any *meds

changes the others may recommend. It's very reassuring to our family that

one specialist with the proper expertise and with our full confidence is

ultimately in charge of all Larry's drugs.

Larry had to be hospitalized last summer and then placed in a nursing home.

Especially now that so many people are involved in his care, which means

lots of people with different opinions and agendas, it's good to be able to

insist that no changes are to be made without the neurologist's approval.

From my perspective, this makes Larry much less vulnerable to drug

recommendations based on incomplete knowledge or on the desire of some

nursing home staff to medicate away Larry's behaviors for their own

convenience.

Also, I may be alone in this, but I always find myself uncomfortable with

long-distance drug recommendations. Yes, it's good to know about the

experiences of others and to have a basic knowledge of drugs commonly

prescribed for LBD.. But your dad is an individual and his particular needs

are unique to him. If you can find a doctor you trust, I think his or her

recommendation is the place to start.

Wishing you all the best,

Lois

64, wife/caregiver of Larry, 73, diagnosed with LBD 11/07

February 21, 2012

Lois,

Â

Thank you for your advice.Â That is why I turned to the group, because I know

ya'll are either going through it or have gone through the various phases and

conditions of LBD with your loved one.Â Â

PamelaÂ HutchinsÂ

________________________________

To: LBDcaregivers

Sent: Monday, February 20, 2012 5:48 PM

Subject: Re: Need your advice on a drug (Urgent)