Category Archives: Caregiving – Dementia

“Learn to Manage Common Behavior Problems” (anger, hallucinations, nighttime wakefulness)

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This will be of interest to those dealing with dementia (not only Alzheimer’s Disease) and related behavioral problems.

This guide is titled “Learn to Manage Common Behavior Problems.”  The problems addressed include:

  • wandering
  • rummaging around or hiding things
  • belligerence,  anger or aggressive behavior
  • hallucinations, illusions and paranoia
  • nighttime wakefulness and other sleep problems
  • refusing to eat

Though the guide is focused on Alzheimer’s caregivers, Lewy body dementia and other caregivers are challenged by these same problems.

You can find the guide online here:

www.helpguide.org/elder/alzheimers_behavior_problems.htm

I’ve copied some excerpts below.  (I read about this online resource tonight on a caregiver discussion group.)

Robin

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Excerpts from

Alzheimer’s Behavior Management:
LEARN TO MANAGE COMMON BEHAVIOR PROBLEMS
HelpGuide
December 19, 2007

…Most behavior problems pose serious difficulties for the person trying to provide care. Management of this behavior will require the caregiver to modify the home environment and change communication styles.

In This Article:
Management of wandering
Management of rummaging around or hiding things
Management of belligerence, anger or aggressive behavior
Management of hallucinations, illusions and paranoia
Management of nighttime wakefulness and other sleep problems
Management of refusing to eat
Related links

 

Management of belligerence, anger or aggressive behavior
Following are some ideas about caring for an aggressive Alzheimer’s patient. Consider each idea independently of the others.

Don’t confront the person or try to discuss the angry behavior. The person with dementia cannot reflect on their unacceptable behavior and cannot learn to control it.

Do not initiate physical contact during the angry outburst. Often, physical contact triggers physical violence in the patient.

Provide the person with a “time-out” away from you. Let them have space to be angry by themselves. Withdraw in the direction of a safe exit.

Distract the person to a more pleasurable topic or activity.

Look for patterns in the aggression. Consider factors such as privacy, independence, boredom, pain, or fatigue. Avoid those activities or topics that anger the person. To help find any patterns, you might keep a log of when the aggressive episodes occur.

If the person gets angry when tasks are too difficult for them, break down tasks into smaller pieces.

Minimize stress and novelty.

Maintain calm within yourself. Getting anxious or upset in response may escalate the aggressiveness.

Let the person play out the aggression. Just be sure that you are safe and that they are safe themselves.

Get help from others during the activities that anger the patient.

Don’t take the aggressiveness personally.

Management of hallucinations, illusions or paranoia
Hallucinations can be the result of failing senses. Unidentifiable sounds, shadows, and highly contrasting colors all can become the basis for fantasy. Decrease the number of things in the environment that can be misinterpreted as something else, such as patterned wallpaper or bright, contrasting surfaces or objects. Increase lighting so that there are few shadows while avoiding glare, and remove or cover mirrors if they cause problems. Maintaining sameness in the environment may also help reduce hallucinations. Also, violent movies or television can contribute to paranoia – avoid letting the patient watch disturbing programs.

When hallucinations or illusions do occur, don’t argue about what is real and what is fantasy. Discuss the patient’s feelings relative to what they imagine they see. Respond to the emotional content of what the person is saying, rather than to the factual/fictional content.

Medications can sometimes help to reduce hallucinations, so seek professional advice if you are concerned about this problem.

Management of nighttime wakefulness and other sleep problems
Brain disease often disrupts the sleep-wake cycle. Alzheimer’s patients may have wakefulness, disorientation, and confusion beginning at dusk and continuing throughout the night. This is called “sundowning.” There are two aspects to sundowning. First, confusion, over-stimulation, and fatigue during the day may result in increased confusion, restlessness, and insecurity at night. And second, some Alzheimer’s patients have fear of the dark, perhaps because of the lack of familiar daytime noises and activity. The patient may seek out security and protection at night to alleviate their discomfort.

Following are some strategies to reduce nighttime restlessness:

Improve sleep hygiene

Physical activities will help the person feel more tired at bedtime. Walk with the person during the day. If the person seems very fatigued during the day, give them a short rest in the afternoon to regain their composure. This can lead to a better night’s sleep. But don’t let them sleep too long – too much daytime napping can increase nighttime wakefulness. Also, limit the patient’s caffeine intake.

Be consistent with the time for sleeping, and keep a routine for getting ready for bed.

Create a calm atmosphere for sleeping

Give the person a bath and some warm milk before bed. Provide a comfortable bed, reduce noise and light, and play soothing music to help them get to sleep.

Close the curtains and leave a night light on all night. Some people with dementia imagine things in the dark and become upset. Stuffed animals or a pet may soothe the patient and allow them to sleep.

Have the person use the toilet right before bedtime. Place a commode next to the bed for nighttime urination. Walking to the bathroom in the middle of the night may wake the person up too much, and then they can’t get back to sleep.

The person may prefer to sleep in a chair or on the couch, rather than in bed. Furniture must be designed so that the patient won’t fall out while sleeping.

Resolve common problems
If the patient paces during the night, make sure that the primary daytime caregiver can sleep. This requires either a very safe room for the patient to pace in, or else another caregiver who takes over at night. You need your rest, too. Do not restrain the patient in bed, but consider a hospital bed with guard rails in the later stages of Alzheimer’s.
If night wakefulness has gotten too hard for you to manage, consult with a doctor if you wish to try administering sleeping pills.

 

Doug Russell, L.C.S.W., Suzanne Barston, and Monika White, Ph.D., contributed to this article. Last modified on: 12/19/07.

“Antipsychotics Dangerous for Elderly With Dementia”

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This post will be of interest to those dealing antipsychotics (such as Haldol, Seroquel, or Risperdal) in the elderly with dementia.  Many with Lewy Body Dementia take this type of medication.  I have heard of a few people with Progressive Supranuclear Palsy, Corticobasal Degeneration, and even Multiple System Atrophy taking this type of medication.

HealthDay News (at everydayhealth.com) published a news article earlier this week on a new study showing that:

“Elderly people with dementia who are given antipsychotics, even for a very short period of time, are more likely to end up in the hospital or even die, new research shows.”

This is some follow-up to Canadian research published in June ’07 on the same subject (PubMed ID#17548409).  (Many of the researchers are the same on the two studies.)

The news article included reference to an Alzheimer’s Association (alz.org) publication on using antipsychotics in those with AD.  This publication is worth reading:

www.alz.org/national/documents/statements_antipsychotics.pdf

There is an FDA “black box” warning on the atypical antipsychotics.  You can find the April ’05 FDA warning on fda.gov at:

www.fda.gov/cder/drug/advisory/antipsychotics.htm

The HealthDay News article follows.  Below that is the abstract of the medical journal article.

Robin

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tinyurl.com/5xuj95

Antipsychotics Dangerous for Elderly With Dementia
HealthDay News
Published: 05/27/08

MONDAY, May 26 (HealthDay News) — Elderly people with dementia who are given antipsychotics, even for a very short period of time, are more likely to end up in the hospital or even die, new research shows.

However, the problems underlying the need for such medications, behavioral problems such as aggression and agitation, are very real, and the alternatives to antipsychotics are limited, the researchers added.

“A misreading of the findings would be we don’t need to do something for these nursing home residents,” said study author Dr. Gary J. Kennedy, head of geriatric psychiatry for Montefiore Medical Center in New York City.

Many experts feel behavioral interventions should be tried first and antipsychotics used as a last resort, “when the behavior or the psychiatric symptoms are really out of control and causing complete distress not only for the person suffering from Alzheimer’s, but for caregivers all around them,” said Maria Carrillo, director of medical and scientific affairs at the Alzheimer’s Association in Chicago. “It’s important to work these things out with the physician and, of course, do follow-up very closely together, so you can make sure these antipsychotics are having the effect you want and, if not, discontinue them immediately.”

The findings were published in the May 26 issue of the Archives of Internal Medicine.

Antipsychotic drugs are commonly used to treat some of the behavioral complications of dementia, including delirium.

Newer antipsychotic medications such as Zyprexa (olanzapine) and Risperdal (risperidone) have been available for about a decade and have largely replaced their older counterparts.

Researchers from the Institute for Clinical Evaluative Sciences in Ontario, Canada, compared 20,682 older adults with dementia living in the community with 20,559 older adults with dementia living in a nursing home between April 1, 1997, and March 31, 2004.

Each group was divided into three subgroups: those not receiving any antipsychotics, those taking newer antipsychotics, and those taking older antipsychotics such as Haldol (haloperidol).

According to information gleaned from medical records, community-dwelling adults who had recently received a prescription for a newer antipsychotic medication were 3.2 times more likely than individuals who had received no antipsychotic therapy to be hospitalized or to die during 30 days of follow-up.

Those who received older antipsychotic therapy were 3.8 times more likely to have such an event, relative to their peers who had received no antipsychotic therapy.

A similar pattern, albeit less dramatic, emerged in the nursing home group. Individuals taking older antipsychotics were 2.4 times more likely to be hospitalized or die, while those taking newer drugs were 1.9 times more likely to die or be hospitalized during the 30 days of follow-up.

The study does, however, have its limitations. “It’s a carefully done study,” Kennedy said. “One flaw is that the [participants] weren’t randomly administered antipsychotics. There was some reason they were given an antipsychotic, such as aggression or agitation. It may have been done if they were recently admitted to the nursing home as part of the adjustment process.

Indeed, the authors acknowledged that about 17 percent of patients entering nursing homes start taking an antipsychotic within 100 days.

“For any of us, moving is like being sick. It takes a while to recover,” Kennedy said. “We need other sets of interventions besides medications. What that implies is more staffing and better training for staff, and that may not be a whole lot more expensive than medicines.”

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Here’s the abstract of the medical journal article:

Archives of Internal Medicine. 2008 May 26;168(10):1090-6.

Antipsychotic therapy and short-term serious events in older adults with dementia.

Rochon PA, Normand SL, Gomes T, Gill SS, Anderson GM, Melo M, Sykora K, Lipscombe L, Bell CM, Gurwitz JH.
Department of Medicine, University of Toronto, Canada.

BACKGROUND: Antipsychotic therapy is widely used to treat behavioral problems in older adults with dementia. Cohort studies evaluating the safety of antipsychotic therapy generally focus on a single adverse event. We compared the rate of developing any serious event, a composite outcome defined as an event serious enough to lead to an acute care hospital admission or death within 30 days of initiating antipsychotic therapy, to better estimate the overall burden of short-term harm associated with these agents.

METHODS: In this population-based, retrospective cohort study, we identified 20 682 matched older adults with dementia living in the community and 20 559 matched individuals living in a nursing home between April 1, 1997, and March 31, 2004. Propensity-based matching was used to balance differences between the drug exposure groups in each setting. To examine the effects of antipsychotic drug use on the composite outcome of any serious event we used a conditional logistic regression model. We also estimated adjusted odds ratios using models that included all covariates with a standard difference greater than 0.10.

RESULTS: Relative to those who received no antipsychotic therapy, community-dwelling older adults newly dispensed an atypical antipsychotic therapy were 3.2 times more likely (95% confidence interval, 2.77-3.68) and those who received conventional antipsychotic therapy were 3.8 times more likely (95% confidence interval, 3.31-4.39) to develop any serious event during the 30 days of follow-up. The pattern of serious events was similar but less pronounced among older adults living in a nursing home.

CONCLUSIONS: Serious events, as indicated by a hospital admission or death, are frequent following the short-term use of antipsychotic drugs in older adults with dementia. Antipsychotic drugs should be used with caution even when short-term therapy is being prescribed.

PubMed ID#: 18504337  (see pubmed.gov for the abstract)

“Compassionate Communication” – do’s and don’ts

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Recently I attended a workshop on dementia caregiving.  This wonderful handout on compassionate communicate was shared.  Though written by an Alzheimer’s support group leader and addressed to caregivers of those with “memory impairment,” the suggestions of “do’s” and “don’ts” apply to all dementia types, even without memory impairment.

Here’s a link to the handout:

www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf

Compassionate Communication with the Memory Impaired
Liz Ayres, Alzheimer’s Support Group Leader, former Caregiver, Orange County, CA
Copyright 2008

[Editor’s Note, 2013: handout link from 2008 no longer working.]

I’ve copied much of the handout below.  Page 2 of the handout contains lots of examples.

Robin

Compassionate Communication with the Memory Impaired
Liz Ayres, Alzheimer’s Support Group Leader, former Caregiver, Orange County, CA
©1995, 2001, 2005, 2007, 2008

DON’T

Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

DO

Give short, one sentence explanations.

Allow plenty of time for comprehension, then triple it.

Repeat instructions or sentences exactly the same way.

Eliminate ‘but’ from your vocabulary; substitute ‘nevertheless.’

Avoid insistence. Try again later.

Agree with them or distract them to a different subject or activity.

Accept the blame when something’s wrong (even if it’s fantasy.)

Leave the room, if necessary, to avoid confrontations.

Respond to the feelings rather than the words.

Be patient and cheerful and reassuring. Do go with the flow.

Practice 100% forgiveness. Memory loss progresses daily.

My appeal to you: Please elevate your level of generosity and graciousness.

REMEMBER

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life. They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them…always. For example: they don’t hide things; they protect them in safe places…and then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame or insist.

Reminders are rarely kind. They tell the patient how disabled they are––over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not.” Ouch! Refer only to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days they seem normal, but they’re not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind…don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ___. How did you meet?” or you might try, “He’s gone for a while. Let’s take our walk now.”

Open ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

 

“Avoid confusion in the hospital – Ten tips”

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A Yale Medical School publication lists ten tips to avoid confusion in the hospital.  These tips certainly apply to those with dementia as well as the elderly, and this is probably helpful for anyone (neurodegenerated or not!) in the hospital.

Robin
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elderlife.med.yale.edu/public/prevention.php

Avoid Confusion in the Hospital – Ten Tips

Do you have an elderly relative in the hospital?

By taking these ten steps, you may be able to reduce the risk of delirium:

1. Bring to the hospital a complete list of all medications (with their dosages), as well as over-the-counter medicines. It may help to bring the medication bottles as well.

2. Prepare a “medical information sheet” listing all allergies, names and phone numbers of physicians, the name of the patient’s usual pharmacy and all known medical conditions. Also, be sure all pertinent medical records have been forwarded to the doctors who will be caring for the patient.

3. Bring glasses, hearing aids (with fresh batteries), and dentures to the hospital. Older persons do better if they can see, hear and eat.

4. Bring in a few familiar objects from home. Things such as family photos, a favorite comforter or blanket for the bed, rosary beads, a beloved book and relaxation tapes can be quite comforting.

5. Help orient the patient throughout the day. Speak in a calm, reassuring tone of voice and tell the patient where he is and why he is there.

6. When giving instructions, state one fact or simple task at a time. Do not overwhelm or over stimulate the patient.

7. Massage can be soothing for some patients.

8. Stay with the hospitalized patient as much as possible. During an acute episode of delirium, relatives should try to arrange shifts so someone can be present around the clock.

9. If you detect new signs that could indicate delirium — confusion, memory problems, personality changes — it is important to discuss these with the nurses or physicians as soon as you can. Family members are often the first to notice subtle changes.

10. Find out more about delirium. The American Psychiatric Association’s “Patient and Family Guide to Understanding and Identifying Delirium” is available on line.
[Robin’s note:  the link to this APA document doesn’t work and a search of that website revealed nothing by this name.]

Adapted from onlinehealth.com, May 02, 2000

Another WSJ article on antipsychotics (12/20/07)

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The Wall Street Journal is really hitting hard on this topic — nursing home use of antipsychotics. They’ve had two front page articles in 2 weeks. Here are some excerpts from today’s article:

* “Use of a new generation of antipsychotic drugs to control the behavior of dementia patients has surged in recent years, despite the Food and Drug Administration’s ‘black box’ warning labels that these drugs can increase the risk of death for elderly dementia sufferers.”

* “About 30% of nursing-home residents are on antipsychotic drugs, according to the Centers for Medicare & Medicaid Services, most of them on newer ones called atypical antipsychotics.”

* “The challenge of caring for rising numbers of seniors who suffer from dementia and the behavior problems that can stem from it has provoked a wrenching debate among nursing-home operators, regulators and families. There are few effective medicines to manage the outbursts of Alzheimer’s patients — behavior that can overwhelm family members trying to care for a loved one at home, and strain the resources of those trying to maintain order in nursing facilities.”

* “Medicaid in 2005 spent $5.4 billion on atypical antipsychotic medicines — more than it spent on any other class of drugs… Atypical antipsychotics are approved for schizophrenia and bipolar disorder. But in what is known as ‘off label’ use, doctors often prescribe the drugs to elderly people with dementia.”

* “According to CMS, nearly 21% of nursing-home patients who don’t have a psychosis diagnosis are on antipsychotic drugs. A 2005 study, published in the Archives of Internal Medicine, found antipsychotics were prescribed not only for psychosis, but for depression, confusion, memory loss and feelings of isolation, says the study’s author Becky Briesacher.”

* “Family members can object to the use of such drugs. But they risk having the facility threaten to discharge their relative on grounds that they pose a danger to themselves or others.”

Here’s the link to the article:

http://online.wsj.com/article/SB119811286789841083.html

ALTERNATIVE MEDICINE
Nursing Homes Struggle To Kick Drug Habit
New Therapies Sought For Dementia Sufferers;
Music and Massages
Wall Street Journal
By Lucette Lagnado
December 20, 2007; Page A1

Robin