Tag: barriers

Anyone who reads this blog knows my position on inappropriately prescribing antipsychotic medications to people who live with dementia. Risperdal (risperidone) and Seroquel (quetiapine) robbed my mother of her ability to live her life as fully as she would have wished for her last four years. Their use on her was cruel, abusive and completely unnecessary. I’ve written extensively on this issue here.

Unfortunately, the biomedical model and the concept of challenging behaviours behind prescribing these medications is deeply entrenched; so is the profit motive for selling them. Advocating against their use is an uphill battle. The good news is we are making headway.

I was heartened when a US News article headlined: “Should antipsychotics be used for people with dementia?” was reposted on the popular Alzheimer caregiver Facebook page “TheALZTeam” where  over 90% of the commenters answered the headline question with a resounding “No!”

Here’s what caregivers said:

1 ) A pacifier, not a cure. ~ G.B

No, because antipsychotics do not cure rather than they serve to pacify people. After taking antipsychotics, the damaged brain becomes the real problem not dementia. People with dementia do not need antipsychotics. If they are used by health care staff, it means that caregivers do not understand people with whom they work and do not know how to take care of persons with dementia. This is the staff’s problem not those who have dementia or others diseases.

2 ) Make things worse, not better. ~ D.R.

No! No! No! Absolutely not! They actually made my husband psychotic and manic, they were given to make him sleep, the longer he was on them the worse he became and so they kept increasing the dose. Completely irresponsible, thankfully the doctor listened to me .

3) Legislate against them. ~ T.K.

The government should legislate that they cannot be used for people with dementia then the Doctors couldn’t be put under pressure by the nursing homes to prescribe them.

4) Train staff instead. ~ G.O.

They make them more susceptible to falls and confusion. If what is needed is more funding for training staff in behaviour modification and extra staff so they could take more time to placate residents displaying aggressive behaviour that’s what should happen, the money saved from not having to subsidise drugs would probably go a long way to funding these kinds of things.

5) They ended Mom’s life. ~ J.B

My mum passed away in March this year. She had frontal temporal lobe dementia and she had no quality of life. Strapped into a cloud chair, drugged to the eyeballs. I don’t know exactly what medications they had her on. But I feel that in the end it was them that ended her life. No autopsy was done.

6 ) Training and understanding would be more beneficial. ~ C.P.

Our mum has been diagnosed with Vascular now for over 3yrs, she has never in her life (she’s 88yrs old) taken any drugs, won’t even take a paracetamol! She is still at home and between us all (8 of us -4 live away – plus excellent carers) she is happy happy singing all day long, yes, she gets moods but they are managed with loving care, patience and understanding! I believe a lot of ppl with this illness are needlessly treated with drugs! better training and understanding of the disease would be far more beneficial than any drugs!

7) My mother deserved better. ~ J.M.

I wish they would never have to use these drugs! My poor mother was never psychotic but just because of dementia at 59, she was given these drugs. She deserved something better. These drugs did not help really. I saw how before and after taking them did not help her. Heartbreakingly, a hospice was given permission to paralyze my mother with worse drugs that took her life faster. She went back to God this year in January. She wasn’t even allowed fluids in an I.V. which simply caused dehydration. It was horrifying. I had no power over this though. God will surely give her justice. I pray for all who are suffering because of dementia and because of diseases that cause it.

8 ) I threw them in the bin. ~ K.A.

As a daughter who cared for her mother who was afflicted by this insidious disease, no medication helped. Aricept made her much worse, extremely depressed, psychotic hallucinations, absolutely apathetic and wanting to end it all. Psychotic drugs were prescribed by the doctor and I ended up throwing them in the bin. After weaning her off Aricept, we never used any medication. Nutrition, comfort, safety, love and understanding is the best medication.

9 ) I had them stopped. ~ K.S.B.

This happened to my mom! I would visit her & she was drooling out of her mouth & overly sedated. Once I was granted guardianship I had it stopped!! She is not taking any meds other than cholesterol pill & Vit. D. Also, I moved her to group home. It has been an amazing change for her well being & safety.

10 ) Look for another job. ~ J.N.

If you work someplace where someone in authority demands you contact the Dr to request medication for a “difficult” resident (even after you’ve attempted to educate them) it’s time to start looking for another job.

11) No respect for the elderly. ~ H.G.B

They prescribed these meds to my mother because they said she was aggressive & trying to care for other patients in the nursing home. I explained to the Dr that my mother wasn’t aggressive, she was Ornery & liked to play around. The reason she was trying to care for the other patients, she lost her father at the age of 14, her mother was a mess so she had to become a care giver at an early age. She also cared for my Great Grandparents & Grandparents. Also she worked in a nursing home for Many years. Her mind was back in the day of caring for others around her, especially the elderly. The Dr did not care, he said she needed this to control her behavior. My opinion, they want them to be Zombies so they are easier to care for. There is No Respect for the elderly in this country.

12 ) A nightmare. ~ S.D.O.

Dr prescribed anti-d as a sleeping pill for my mother who had Alzheimers .. Being me I tried them first …. suffered most of the side effects and got about 3 hrs sleep in 5 days . No way would I give them to mum , & thank God I tried them first ..it was a nightmare week for me on one dose.

13 ) Replace with love. ~ C.A.

My opinion is, as a wife of an Alz. Pt, sometimes they give these drugs to knock them down if they are at all “combative.” That may only happen because of the lack of training of the caregivers non training of people with Alz. Don’t give me the excuse that they have a lot of other people. Also, someone that has been labeled “Combative” it is like a scarlet letter. Showing Love can make a huge difference.

14 ) Hell nooo. ~ P.G.

Hell nooo..they were doing that to my husband i had to get a lawyer…sickening..it makes him worse ..i was his poa they weren’t supped to be giving him anything..he almost died than twice..they are in effective.

15 ) My dad got worse. ~ M.L.

My dad became psychotic and they sectioned him and put him on those meds , we lost custody , he has just got so much worse from them.

16 ) Avoid at all costs. ~ D.W

They will turn your parents onto a polypharmacy if you let them. Antidepressants and antipsychotics I would avoid at all costs.

17 ) Reduced my husband to a zombie. ~ E.S.

No no. My hubby’s mind already in a fog . Reduced him to a living zombie!

18 ) Of no help. ~ C.B.

So many people try to guilt you into using medication. They didn’t help my late Mom at all.

19 ) PLWD have enough struggles as it is. ~ D.G.

Not unless there is a proven positive effect. People with Alzheimer’s disease have enough struggles without introducing more!

20 ) No. They do more harm than good.

 

I agree with all of the caregivers above, and this is what I commented:

Antipsychotics should absolutely not be given to people who live with dementia unless all other options have been tried and have failed. Even then, they should only be given at the lowest possible dose for the shortest possible time. In addition to all the hands-on caregiver experiences and stories in the comments, there is overwhelming research evidence that these drugs are largely ineffective in people who live with dementia. Further, there is growing evidence that supports the many comments in this thread indicating that taking people off these medications improves their condition. Check the results of a landmark pan-Canadian study here.

The use of these medications must be curbed, and we must also ensure they aren’t replaced by others that are equally ineffective and even more dangerous.

Image credit: annete / 123RF Stock Photo

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Antipsychotic medications are meant to treat psychosis, not dementia. Dementia care pioneer Dr. Allen Power explains:

“What happens in the brain chemically–even when people are labeled “delusional”–is not the same in diseases that cause dementia as in classical psychosis where dopamine activity is increased, causing hallucinations and delusions. The primary action [of antipsychotics] in that disorder is achieved by blocking dopamine activity.

But no form of dementia involves heightened dopamine activity; in fact many people, including those with Lewy body dementia, have decreased dopamine activity. So dopamine-blocking drugs not only have no chemical rationale, they also are particularly toxic for such people.”

The responsive behaviour sometimes expressed by people who live with dementia is more often than not the same kind of behaviour most people who don’t have dementia would express under similar circumstances. If you don’t believe me, take this four-minute survey and see for yourself.

Not only are antipsychotics unwarranted for the behavioural expressions listed below, they are ineffective in changing the behaviour for the reason stated above. In fact, they may exacerbate the behaviour they are being inappropriately given to treat (see the side effects for Seroquel/quetiapine and Risperdal/risperidone for example). Furthermore, administering these medications results in sedation that makes it virtually impossible to find and address the real cause(s) of the behaviour.

Here is a list of behavioural expressions for which antipsychotics SHOULD NOT be prescribed for people who live with dementia because they are largely ineffective in treating the root causes:

1. try to get out or away from wherever they are (note: often labeled as “wandering,” “exit seeking,” “elopement,” and other such terms)
2. decline help others may think they need (note: labeled as “resists care,” or “refuses care”)
3. go into places or try to go into places other people think they shouldn’t go (e.g. other residents’ rooms in institutions, locked rooms, private spaces, etc.; note: also often labeled as “wandering“)
4. mistake things for other things (e.g. think the TV remote is a telephone, that things that are not food are food, etc.)
5. use things in ways they are not intended to be used (e.g. put a wet towel in the microwave to dry it)
6. become unhappy or moody
7. see or hear things differently than others do and are not frightened by their differing perceptions (e.g. think shadows on the wall are people; note: may be called “hallucinations”)
8. get angry from time to time (as opposed to continuously flying into violent rages for no apparent reason)
9. not want to do things other people believe are “for their own good” (e.g. take medication, have a bath or shower, go to sleep, get up in the morning, eat what is put in front of them, change their clothes, etc. note: also often labeled as “resists care,” or “refuses care”)
10. believe things that are untrue (e.g. that a dead spouse, parent, friend, etc. is still alive even though they are long gone; note: these kinds of beliefs may sometimes be called “delusions”)
11. become mildly or moderately anxious
12. hoard or hide things
13. call out, scream, yell, or verbalize repeatedly in other ways
14. make noises such as clapping and tapping
15. be unable to sit still
16. want to stand up or walk
17. go to the bathroom in public and/or other inappropriate places (sometimes described as “voiding at will”)
18. take their clothes off in public
19. eat things that aren’t food (see 4 above)
20. curse and/or say socially inappropriate things that others may experience as being insulting or hurtful

This list is based on an excellent article by Dr. Allen Power (which also addresses the small number of situations in which the use of antipsychotics may be helpful), and a concise, practical, bullet-point fact sheet produced by Alberta Health Services  as part of their Appropriate Use of Antipsychotics (AUA) Toolkit.

Dr. Power is the author of Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, both of which I highly recommend. He is also the Schlegal Chair in Aging and Dementia Innovation at the Research Institute for Aging.

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

https://myalzheimersstory.com/2017/11/15/the-broken-lens-of-bpsd-why-we-need-to-rethink-the-way-we-label-the-behaviour-of-people-who-live-with-alzheimers-disease/

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Take my short survey on behaviour here.

Image copyright: alexraths / 123RF Stock Photo

I advocate against the inappropriate use of antipsychotics in treating people who live with dementia because I have seen first hand the devastating impact these drugs may have. Sadly, many dementia care partners are forced to turn to medication out of desperation. In order to be be able to make an informed decision, it’s important to know the side effects of the medication in question.

Antipsychotics risperidone (Risperdal) and quetiapine (Seroquel) carry black box warnings in the US because, like other antipsychotics, they increase the risk of mortality in elderly patients with dementia. Furthermore, recent research shows these medications are largely ineffective in treating behavioural expressions in people who live with dementia. Not surprisingly, geriatricians worldwide recommend against their use, saying they should only be given as a last resort after all non-pharmacological strategies have been tried. Unfortunately, too many people who live with dementia are still inappropriately prescribed these drugs, just as my mother was.

Risperidone (Risperdal) is an atypical antipsychotic drug that is meant to be used to treat schizophrenia and symptoms of bipolar disorder. In Canada, it is “restricted to the short-term symptomatic management of aggression or psychotic symptoms in patients with severe dementia of the Alzheimer type [who are] unresponsive to non-pharmacological approaches and when there is a risk of harm to self or others.” (Bolding mine.) More information on Canada’s position here.

The United States Federal Drug Administration includes this “black box warning” on its Risperdal information sheet:

In November 2013 pharmaceutical giant Johnson and Johnson was fined $2.2 billion by the United States Department of Justice for illegally marketing three drugs one of which was Risperdal (for use in people with dementia).

Risperdal may produce side effects similar to the very conditions it is meant to alleviate in people who live with dementia.

Here are 40 of the potential side effects of Risperdal (there are more here):

1. aggressive behaviour
2. agitation
3. anxiety
4. changes in vision, including blurred vision
5. difficulty concentrating
6. difficulty speaking or swallowing
7. inability to move the eyes
8. increase in amount of urine
9. loss of balance control
10. mask-like face
11. memory problems
12. muscle spasms of the face, neck, and back
13. problems with urination
14. restlessness or need to keep moving (severe)
15. shuffling walk
16. skin rash or itching
17. stiffness or weakness of the arms or legs
18. tic-like or twitching movements
19. trembling and shaking of the fingers and hands
20. trouble sleeping
21. twisting body movements
22. back pain
23. chest pain
24. speech or vision problems
25. sudden weakness or numbness in the face, arms, or legs
26. constipation
27. cough
28. diarrhea
29. dry mouth
30. headache
31. heartburn
32. increased dream activity
33. increased length of sleep
34. nausea
35. sleepiness or unusual drowsiness
36. sore throat
37. stuffy or runny nose
38. unusual tiredness or weakness
39. weight gain
40. vomiting

Giving risperidone (Risperdal) to people who live with dementia and who may be unable to report the side effects they are experiencing is cruel and in many cases completely unnecessary. Read more about why drugs like Risperdal are still inappropriately prescribed to elderly people who live with dementia.

https://myalzheimersstory.com/2016/07/26/40-side-effects-of-seroquel/

https://myalzheimersstory.com/2017/12/09/30-haloperidol-haldol-side-effects/

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Take my short survey on behaviour here.