Archives for October 2013

Medicines to Treat Alzheimer’s Symptoms and Behaviors


“Dad was nervous and depressed at the same time. He couldn’t sit still, but he also didn’t sleep well. His doctor gave him medicine to help. At first, he was too sleepy. Then, the doctor adjusted the medicine, and Dad’s doing better.”

People with AD may take medications to treat:

  • The disease itself
  • Mood or other behavior changes
  • Other medical conditions they may have

Caregivers need to know about each medicine that a person with AD takes.

“Dad was nervous and depressed at the same time. He couldn’t sit still, but he also didn’t sleep well. His doctor gave him medicine to help. At first, he was too sleepy. Then, the doctor adjusted the medicine, and Dad’s doing better.”

Ask the doctor or pharmacist the questions below and write down the answers:

  • Why is this medicine being used?
  • What positive effects should I look for, and when?
  • How long will the person need to take it?
  • How much should he or she take each day?
  • When does the person need to take the medicine?
  • What are the side effects?
  • What can I do about these side effects?
  • Can the medicine be crushed and mixed into foods such as applesauce?
  • Can I get the medicine in a liquid form?
  • Can this medicine cause problems if taken with other medicines?

Reminders to take medicine

People with AD often need help taking their medicine. If the person still lives alone, you may need to call and remind him or her. It’s also helpful to buy a pillbox and put pills for each day in the box. That way all the pills for the day are in one place. You can get pillboxes at the drugstore. As the disease gets worse, you will need to keep track of his or her medicines. You also will need to make sure they take the medicine or you will need to give them the medicine. Ask the doctor or pharmacist about when to give the medications.

Medicines to Treat AD

Both caregivers and doctors need to remember that no two people with AD are alike. This means that medications may work differently in different people.

Many factors may play a role in the disease, such as:

  • Genes
  • Lifestyle
  • Earlier treatments
  • Other illnesses or problems
  • The person’s surroundings
  • Stage of AD

Work closely with the doctor to learn which medicines to use for AD, how much to use, and when to use them. Check with the doctor to see if Medicare or private insurance will cover the cost of the medicines. Also, find out if you can buy the non-brand, also called generic, type of the medicine. They often cost less than the brand name medicines.

When this guide was written, four medicines (see below) were approved to treat AD. Other promising new medicines are being tested.

It’s important to understand that none of the four medicines can cure or stop the disease. What they can do, for some people, is help them improve for a while from where they started. However, most of the time, these medicines work to slow down certain problems, such as memory loss. Slowing down memory loss can allow many people with AD to be more comfortable and independent for a longer time.

Medicines for mild to moderate AD

Three of the four medicines to treat AD are similar. They are used to treat mild to moderate stages of the disease. They may help delay or slow down some symptoms. One of the medicines, Aricept®, also may help people with severe AD.

The names of these three medicines are:

  • Aricept® (AIR-uh-sept), brand name; donepezil (doe-NEP-uh-zil), generic name
  • Exelon® (EKS-uh-lawn), brand name; rivastigmine (riv-uh-STIG-meen), generic name
  • Razadyne® (RAZZ-uh-dine), brand name; galantamine (guh-LAN-tuh-meen), generic name

A medicine for moderate to severe AD

Namenda®, the fourth medicine, is used to treat moderate to severe AD. For some patients, Namenda® (nuh-MEN-duh) may delay or slow the symptoms of AD. This may allow some people to do more things for themselves, such as using the toilet. The generic name of this drug is memantine (MEH-man-teen).

Sometimes doctors use a combination of medicines to treat moderate to severe AD. For example, they might use Aricept® and Namenda®. These two medicines work in different ways, so it is safe to take them together.

Ask the doctor about side effects

Check with the doctor or pharmacist about any possible side effects of medications. Some side effects can be serious.

Medicines to Treat Behavior Problems Related to AD

Examples of behavior problems that can occur in AD are restlessness, anxiety, depression, trouble sleeping, and aggression. Experts agree that medicines to treat these behavior problems should be used only after other strategies that don’t use medicine have been tried.

Some of these tips are listed in “Challenge: changes in personality and behavior”. If they don’t work and the person with AD continues to be upset, restless, depressed, or aggressive, he or she may need medicine. Talk with the doctor about which medicines are safest and most effective to help with these problems.

Remember the following tips about medicines:

  • Use the lowest dose possible.
  • Watch for side effects. Be prepared to stop the medicine if they occur.
  • Allow the medicine a few weeks to take effect.

Know about medicines

Information about medicines changes over time. Check with the doctor, AD specialist, or pharmacist about the latest medicines. The doctor may prescribe newer drugs with different names than those listed in this guide. Also, remember that some medicines have both generic and brand names.

Below is a list of medicines used to help with depression, aggression, restlessness, and anxiety.

Antidepressants are drugs used to treat depression and worry (also called anxiety).

Examples of these medicines include:

  • Celexa® (Sa-LEKS-a), brand name; citalopram (SYE-tal-oh-pram), generic name
  • Remeron® (REM-er-on), brand name; mirtazepine (MUR-taz-a-peen), generic name
  • Zoloft® (ZO-loft), brand name; sertraline (SUR-truh-leen), generic name

Anticonvulsants are drugs sometimes used to treat severe aggression.

Examples of these medicines include:

  • Depakote® (DEP-uh-cote), brand name; sodium valproate (so-DEE-um VAL-pro-ate), generic name
  • Tegretol® (TEG-ruh-tall), brand name; carbamazepine (KAR-ba-maz-ee-peen), generic name
  • Trileptal® (tri-LEP-tall), brand name; oxcarbazepine (oks-kar-BAZ-eh-peen), generic name

Medicines to be Used with Caution

There are some medicines, such as sleep aids, anti-anxiety drugs, and antipsychotics, that the person with AD should take only:

  • After the doctor has explained all the risks and side effects of the medicine
  • After other, safer medicines have not helped treat the problem

You will need to watch closely for side effects from these medications.

Sleep aids are used to help people get to sleep and stay asleep. People with AD should NOT use these drugs on a regular basis because they make the person more confused and more likely to fall.

Examples of these medicines include:

  • Ambien® (AM-bee-un), brand name; zolpidem (zole-PI-dem), generic name
  • Lunesta® (lu-NES-ta), brand name; eszopiclone (ess-ZOP-eh-klone), generic name
  • Sonata® (SO-nah-ta), brand name; zaleplon (ZAL-ee-plon), generic name

Anti-anxiety drugs are used to treat agitation. These drugs can cause sleepiness, dizziness, falls, and confusion. Therefore, doctors recommend using them only for short periods of time.

Examples of these medicines include:

  • Ativan® (AT-eh-van), brand name; lorazepam (lor-AZ-eh-pam), generic name
  • Klonopin® (KLON-uh-pin), brand name; clonazepam (kol-NAY-zeh-pam), generic name

Antipsychotics are drugs used to treat paranoia, hallucinations, agitation, and aggression. See “Challenge: changes in personality and behavior” for more about these conditions. Side effects of using these drugs can be serious, including increased risk of death in some older people with dementia. They should ONLY be given to people with AD when the doctor agrees that the symptoms are severe.

Examples of these medicines include:

  • Risperdal® (RISS-per-doll), brand name; risperidone (riss-PAIR-eh-dohn), generic name
  • Seroquel® (SAIR-o-kwell), brand name; quetiapine (KWE-tye-uh-peen), generic name
  • Zyprexa® (zye-PREKS-uh), brand name; olanzapine (o-LAN-zuh-peen), generic name

Medicines that People with AD Should Not Take

Anticholinergic drugs are used to treat many medical problems such as sleeping problems, stomach cramps, incontinence, asthma, motion sickness, and muscle spasms. Side effects, such as confusion, can be serious for a person with AD. These drugs should NOT be given to a person with AD. You might talk with the person’s doctor about other, safer drugs.

Examples of these drugs include:

  • Atrovent® (AT-row-vent), brand name; ipratropium (EYE-pra-troe-pee-um), generic name
  • Combivent® (COM-bi-vent), brand name; ipratropium and albuterol (EYE-pra-troe-pee-um and AL-bu-ter-all), generic names
  • DuoNeb® (DO-oh-neb), brand name; ipratropium and albuterol (EYE-pra-troe-pee-um and AL-bu-ter-all), generic names
  • Spiriva® (SPY-ree-vah), brand name; tiotropium (TEE-oh-tro-pee-um), generic name

Medicines to Treat Other Medical Conditions

Many people with AD also have other medical problems such as diabetes, high blood pressure, or heart disease. They may take different medicines for these problems. It’s important to track all the medicines they take. Make a list of their medicines and take the list with you when you visit their doctors.


New! Miracle Cure: Beware of Health Scams

(NIH) You see the ads everywhere these days—“Smart Drugs” for long life or “Arthritis Aches and Pains Disappear Like Magic!” or even statements claiming, “This treatment cured my cancer in 1 week.” It’s easy to understand the appeal of these promises. But there is still plenty of truth to the old saying, “If it sounds too good to be true, it probably is!”

Health scams and the marketing of unproven cures have been around for many years. Today, there are more ways than ever to sell these untested products. In addition to TV, radio, magazines, newspapers, infomercials, mail, telemarketing, and even word-of-mouth, these products are now offered over the Internet—with websites describing miracle cures and emails telling stories of overnight magic. Sadly, older people are often the target of such scams.

ucm341964The problem is serious. Untested remedies may be harmful. They may get in the way of medicines prescribed by your doctor. They may also waste money. And, sometimes, using these products keeps people from getting the medical treatment they need.

False Hopes

Why do people fall for these sales pitches? Unproven remedies promise false hope. They offer cures that appear to be painless or quick. At best, these treatments are worthless. At worst, they are dangerous. Health scams prey on people who are frightened or in pain. Living with a chronic health problem is hard. It’s easy to see why people might fall for a false promise of a quick and painless cure. The best way for scientists to find out if a treatment works is through a clinical trial.

These scams usually target diseases that have no cures, like diabetes, arthritis, and Alzheimer’s disease. You may see ads for:

  • Anti-aging medications. Our culture places great value on staying young, but aging is normal. Despite claims about pills or treatments that lead to endless youth, no treatments have been proven to slow or reverse the aging process. Eating a healthy diet, getting regular exercise, and not smoking are proven ways to help prevent some of the diseases that occur with age. In other words, making healthy lifestyle choices offers you the best chance of aging well.
  • Arthritis remedies. Unproven arthritis remedies can be easy to fall for because symptoms of arthritis tend to come and go. You may believe the remedy you are using is making you feel better when, in fact, it is just the normal ebb and flow of your symptoms. You may see claims that so-called treatments with magnets, copper bracelets, chemicals, special diets, radiation, and other products cure arthritis. This is highly unlikely. Ads where people say they have been cured do not prove that a product works. Some of these products could hurt you, aren’t likely to help, and are often costly. There is no cure for most forms of arthritis. Rest, exercise, heat, and some drugs help many people control their symptoms. Don’t trust ads where people say they have been cured. This kind of statement probably doesn’t tell the whole story. If you are thinking about any new treatment, such as diet, a device, or another arthritis product, talk with your doctor first.
  • Cancer cures. Scam artists prey on a fear of cancer. They promote treatments with no proven value—for example, a diet dangerously low in protein or drugs such as laetrile. Remember: there is no one treatment that cures all types of cancer. By using unproven methods, people with cancer may lose valuable time and the chance to benefit from a proven, effective treatment. This delay may lessen the chance of controlling or curing the disease.
  • Memory aids. Many people worry about losing their memory as they age. They may wrongly believe false promises that unproven treatments can help them keep or improve their memory. So-called smart pills, removal of amalgam dental fillings, and certain brain retraining exercises are some examples of untested approaches.
  • Dietary supplements. Americans spend billions of dollars each year on dietary supplements. These supplements are sold over-the-counter and include vitamins and minerals, amino acids, herbs, and enzymes. Most dietary supplements do not undergo government testing or review before they are put on the market. While some vitamins may be helpful, supplements may be bad for people taking certain medicines or with some medical conditions. Be wary of claims that a supplement can shrink tumors, solve impotence, or cure Alzheimer’s disease. Talk to your doctor before starting any supplement.
  • Health insurance. Some companies target people who are unable to get health insurance. They offer coverage that promises more than it intends to deliver. When you think about buying health insurance, remember to find out if the company and agent are licensed in your State.

Clinical Trials: Evaluating Treatments

A clinical trial is a research study that tests how well new medical approaches work in people. Studies try to find ways to prevent, screen, diagnose, or treat a disease. Clinical trials may also compare treatments.

How Can You Protect Yourself From Health Scams?

Be wary. Question what you see or hear in ads or on the Internet. Newspapers, magazines, radio, and TV stations do not always check to make sure the claims in their ads are true. Find out about a product before you buy. Don’t let a salesperson talk you into making a snap decision. Check with your healthcare provider first.

Remember the old stories about the snake oil salesman who traveled from town to town making wild claims for his fabulous product? Well, chances are that today’s scam artists are using the same sales tricks. Look for red flags in ads or promotional material that:

  • Promise a quick or painless cure
  • Claim the product is made from a special, secret, or ancient formula
  • Offer products and services only by mail or from one company
  • Use statements or unproven case histories from so-called satisfied patients
  • Claim to be a cure for a wide range of ailments
  • Claim to cure a disease (such as arthritis or Alzheimer’s disease) that hasn’t been cured by medical science
  • Promise a no-risk, money-back guarantee
  • Offer an additional “free” gift or a larger amount of the product as a “special promotion”
  • Require advance payment and claim there is a limited supply of the product

Two Federal Government agencies work to protect you from health scams. The Federal Trade Commission can help you spot fraud. The Food and Drug Administration protects the public by assuring the safety of prescription drugs, biological products, medical devices, food, cosmetics, and radiation-emitting products. If you have questions about a product, talk to your doctor. Getting the facts about healthcare products can help protect you from health scams.

For More Information

Here are some helpful resources:

Council of Better Business Bureaus 
4200 Wilson Boulevard, Suite 800
Arlington, VA 22203-1838

Federal Trade Commission 
FTC Complaint Assistant
1-877-382-4357 (toll-free)
1-866-653-4261 (TTY/toll-free)

Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993-0002
1-888-463-6332 (toll-free)

National Cancer Institute 
Public Inquiries Office
6116 Executive Boulevard
Suite 300
Bethesda, MD 20892-8322
1-800-422-6237 (1-800-4-CANCER, toll-free)

National Institute of Arthritis and Musculoskeletal and Skin Diseases 
Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
1-877-226-4267 (toll-free)
1-301-565-2966 (TTY)

U.S. Postal Inspection Service

For more information on health and aging, contact:

National Institute on Aging
Information Center 

P.O. Box 8057
Gaithersburg, MD 20898-8057
1-800-222-2225 (toll-free)
1-800-222-4225 (TTY/toll-free)

To sign up for regular email alerts about new publications and other information from the NIA, go to

Visit, a senior-friendly website from the National Institute on Aging and the National Library of Medicine. This website has health and wellness information for older adults. Special features make it simple to use. For example, you can click on a button to have the text read out loud or to make the type larger.


See more at:

National Institute on Aging


101 Activities You Can Enjoy from the Alzheimer’s Association

Dear Readers:

Here is a great list of 101 activities you can enjoy with your Alzheimer’s loved one. The list is published by the Alzheimer’s Association. You can print the list and go over a few ideas and see which activities are of interest. It’s a great way to spend a few hours over the weekend and have some fun.

~ Jennifer

101 Activities

  1. Listen to music
  2. Toss a ball
  3. Color pictures
  4. Make homemade lemonade
  5. Count trading cards
  6. Clip coupons
  7. Sort poker chips
  8. Read out loud chapters from Harry Potter books or other favorite stories
  9. Rake leaves
  10. String beads
  11. Bake cookies
  12. Take photos of the person and you and create a collage
  13. Brush or comb one another’s hair
  14. Participate in the Alzheimer’s Association Walk to End Alzheimer’s.
  15. Plant seeds indoors or outdoors
  16. Look at family photographs
  17. Wipe off the kitchen table
  18. Weed the flowerbed or tend to the garden
  19. Fold laundry
  20. Have a friend visit with a well-behaved pet
  21. Cut pictures out of greeting cards or magazines
  22. Play dominoes
  23. Ask the person about his or her favorite childhood books or cartoon characters (you can share yours too)
  24. Bake homemade bread
  25. Sort objects by shape or color
  26. Sing old songs
  27. Invite the person to tell you more when he or she talks about a memory
  28. Put silverware away
  29. Make a Valentine card
  30. Play favorite songs and sing
  31. Ask the person about his or her brothers or sisters
  32. Make a cherry pie
  33. Play with tops or jacks
  34. Make a scrapbook
  35. Take a walk around the yard
  36. Write a poem together
  37. Reminisce about the first day of school
  38. String Cheerios® to hang outside for birds
  39. Make a fresh fruit salad
  40. Sweep the patio
  41. Color paper shamrocks green
  42. Fold towels
  43. Have an afternoon tea party
  44. Talk about great inventions
  45. Look through the pages of a clothes catalog
  46. Look at a map of the United States and identify states and capitals
  47. Make a family tree poster
  48. Color a picture of our flag
  49. Eat a picnic lunch outside
  50. Water house plants
  51. Play horseshoes
  52. Dance
  53. Watch Sesame Street together
  54. Make homemade ice cream
  55. Make holiday cards
  56. Reminisce about favorite sports activities the person enjoyed while growing up
  57. Write a letter to a friend or family member
  58. Dress in your favorite football or soccer team’s color
  59. Pop popcorn
  60. Name the presidents
  61. Give a manicure
  62. Make paper butterflies
  63. Plant a tree
  64. Finish famous sayings
  65. Feed the ducks
  66. Model with play dough
  67. Look at pictures in a comic book
  68. Put a puzzle together
  69. Sand wood
  70. Rub in hand lotion
  71. Arrange fresh flowers
  72. Remember famous people
  73. Recite nursery rhymes
  74. Make peanut butter sandwiches
  75. Cut up used paper for scratch paper
  76. Blow bubbles
  77. Take care of a fish tank
  78. Bake cupcakes and decorate them
  79. Interview the person about his or her life using either a video camera or cassette recorder
  80. Play Hangman
  81. Finger paint
  82. Cut out pictures from magazines
  83. Put coins in a jar
  84. Put bird seed out for the birds
  85. Decorate a pumpkin
  86. Reminisce about a favorite summer
  87. Roll yarn into a ball
  88. Trace and cut out autumn leaves
  89. Cook a favorite family recipe together
  90. Gather a yellow sponge, crayons, paper and tape and make a SpongeBob SquarePants
  91. Wash silverware
  92. Give him or her a hug
  93. Ask the person to show you how to knit or sew (or another favorite hobby)
  94. Make a picture frame our of popsicle sticks and glitter
  95. Play a musical instrument
  96. Keep a journal together
  97. Ask the person to talk about his or her favorite sports hero
  98. Sort playing cards
  99. Ask the person about his or her favorite pet
  100. Wash windows together
  101. Ask the person about his or her first car

Copyright © 2016  Alzheimer’s Association®. All rights reserved.


Groundbreaking Project Looks at Dementia, Other Health Factors in the ‘Oldest Old’

(Medical News Today) UC Irvine’s trailblazing 90+ Study, launched in 2003 to learn more about the “oldest old,” the fastest-growing age group in the U.S., will continue for at least another five years, thanks to a $9.5 million renewal grant from the National Institute on Aging.

Previously funded by two five-year NIA awards totaling $20 million, the 90+ Study is the longest continuing research effort focused exclusively on the distinctive health and lifestyle issues of Americans in their 90s or older.

It’s among the largest studies of the oldest old in the world, with clinical, pathological and genetic research being conducted on more than 1,600 participants. Based at the Clinic for Aging Research & Education in Laguna Woods, Calif., the project is co-directed by Dr. Claudia Kawas, a geriatric neurologist and professor of neurology and neurobiology & behavior, and Maria Corrada, an epidemiologist and associate adjunct professor of neurology.

“We are fortunate in this time of sequestration that our comprehensive and robust study continues to receive federal funding,” Kawas said.

“There truly isn’t anything like the 90+ Study. Results obtained thus far have provided researchers across the globe with valuable information about aging.”

While there are currently nearly 2 million nonagenarians in the U.S., that number is projected to increase to 10 million to 12 million by the middle of the century, raising concerns that the current healthcare system may not be able to accommodate this population.

The UC Irvine study is among the few to look at dementia in people over age 90. The progressive brain dysfunction gradually curtails daily activities. The most well-known type of dementia is Alzheimer’s disease. Symptoms include memory loss, cognitive disorientation and behavioral changes. Dementia affects not only patients but also people surrounding them, as long-term care is often required.

Research conducted by the 90+ team has revealed that:

  • People who drink moderate amounts of alcohol or coffee live longer than those who abstain.
  • People who are overweight in their 70s live longer than normal-weight or underweight individuals.
  • More than 40 percent of people 90 and older suffer from dementia, while almost 80 percent are disabled. Both conditions are more common in women than men.
  • About half of those over 90 with dementia do not have sufficient Alzheimer’s-related plaque growth in their brains to explain their cognitive loss.
  • Individuals 90 and older who carry the APOE2 gene are less likely to have Alzheimer’s-like dementia but much more likely to have Alzheimer’s-related plaque growth in their brains.
  • Poor physical performance on activities such as walking is associated with increased risk of dementia.

With the renewed round of funding over the next five years, 90+ researchers plan to employ PET and MRI scans to address these questions: Why do many of the oldest old have Alzheimer’s or vascular pathology in their brains but not show signs of dementia? Are they in the preclinical stages of disease? Will their cognitive abilities eventually decline?

The researchers also intend to monitor blood pressure and oxygen saturation over 24-hour spans to see if dips in blood pressure, particularly during the night, or periods of fluctuation are associated with cerebral microinfarctions or other diseases of the brain that can cause dementia.

“We will continue to try to understand what makes the oldest old so unique,” Kawas said.

“This is an amazing population, and we can learn so much from them.”


University of California – Irvine

University of California – Irvine. (2013, October 21). “Groundbreaking project looks at dementia, other health factors in the ‘oldest old’.” Medical News Today. Retrieved from

© 2004-2013 All rights reserved. MediLexicon International Ltd, Bexhill-on-Sea, UK


Advanced Illness: Feeding Tubes and Ventilators

(Family Caregiver Alliance) Families caring for a chronically ill loved one may eventually face very difficult decisions regarding medical treatment for the person in their care. The progression of many conditions—Alzheimer’s disease, Parkinson’s disease, Amyotrophic Lateral Sclerosis or post-stroke, for example—may lead to two of the most common such decisions: whether to use feeding tubes when a chronically ill person can no longer chew and swallow his or her food, and whether to use a ventilator when someone can no longer breathe on his or her own.

Given that a person with a chronic illness may be ill for many years, caregivers might put off discussing and thinking about medical complications that are likely to happen in the future. When decline from an illness is gradual, it is easy to not notice the early warning signs of an impending medical crisis. But understanding and discussing these issues ahead of time can help avoid the need to make urgent decisions during a crisis.

Artificial Nutrition and Hydration

As many types of neurological illnesses progress, the muscles of the throat gradually cease to work properly. This can cause swallowing difficulties, gagging, choking, trouble coughing, loss of voice, or difficulty catching one’s breath. Receiving proper nutrition is difficult if someone is having trouble swallowing, which is usually accompanied by eating less. The danger of choking while swallowing is that the food can “go down the wrong pipe”—in other words, the food is aspirated into the lungs. Gagging can also cause vomiting, which may cause some of the stomach contents to enter the lungs. All of these possibilities can lead to an illness called aspiration pneumonia, which occurs when bacteria causes infection in the lungs which have been damaged by food or stomach material.

Treating aspiration pneumonia usually requires a hospital stay and a course of antibiotics. Patients may be fed during hospitalization with an NG Tube (naso-gastric tube, inserted through the nose and down the esophagus to the stomach), which allows the patient to receive liquid nutrition. If swallowing difficulties continue, physicians may discuss the use of a G-tube (gastric tube) with the family.

Surgery is required to insert a tube directly through the front of the belly into the stomach and the patient then receives all or most of his/her nutrition via frequent “feedings” during the day and/or night. This feeding can be done by hand using a syringe or by using a machine that will drip the liquid through the tube into the stomach. Either way, the patient must be sedentary for a period of time in order to receive the food.

With or without feeding tubes, patients can learn swallowing techniques to reduce the likelihood of aspirating. Caregivers can also help by preparing “thick liquid” diets (thin cream of wheat, mashed potatoes, thickened broths for example), that are easier to swallow, and by avoiding thin liquids and things that require chewing. Some people can enjoy eating small amounts this way, even when they are receiving their primary nutrition through a tube.

In many cases, feeding tubes help prevent illness and prolong life. In diseases like ALS, feeding tubes can be a normal part of treatment, as swallowing may be compromised before a person is in the end stages of the disease.

If someone has trouble swallowing and continues to eat or drink, the possibility of repeated incidences of aspiration pneumonia is high. The decision then becomes how to treat the resulting pneumonias (see “ventilators” below). Some patients truly miss the taste and experience of eating and find normal eating hard to give up. Patients with dementia and/or severe agitation may pull at the tube and/or pull it out, which might require sedation or restraints. And remaining sedentary for the time required to receive the feedings may be difficult.

There is some debate, for example, about whether feeding tubes actually extend life in end-stage Alzheimer’s disease. For many, this is a quality of life issue, and they would prefer to not to live this way. Depending on the situation, people receiving tube feedings may not be able to avail themselves of hospice services.

If the family chooses not to insert a feeding tube, the patient and family may have decided that this person is in the final stages of the illness, and that they are now willing to allow death to occur. If the person is totally unable to eat and does not use a feeding tube, the body will slowly shut down over a period of one to two weeks. Comfort measures are given, so the patient does not suffer, and hospice care can help the patient and family.

Artificial hydration is the process of giving intravenous fluids—i.e., fluid given using a tube in the veins. In the past, artificial hydration was used to prevent death from dehydration, which was considered a painful way to die. We now know that gradual dehydration is not painful; rather, it brings a lessening of awareness about discomfort, so that the person slides naturally toward death.

If the body is shutting down, it cannot rid itself of the excess fluids given by IV and thus the fluid builds up in the lungs and leads to shortness of breath. Dry mouth is treated more effectively with good mouth care than by IV fluids. With hospice care, it has been the practice not to give IV hydration when someone is close to death. Naturally, pain and other symptoms are still treated as they occur. As with a feeding tube in the advanced stages of an illness, IV hydration can prolong dying rather than prolong living.

How Does One Make These Decisions?

When a person is diagnosed with a chronic and degenerative illness, it is important for the patient and family members to discuss these topics early in the illness, while the patient is still in a position to let family members know what his/her wishes are regarding these decisions—it is much more difficult to make a decision under the pressure of an acute episode. If the ill person has begun to choke when swallowing, it is a good time for the family, the patient, and, if possible, the physician, to discuss the “what ifs,” and how to think about the choices, keeping in mind the patient’s values.

Consultation with clergy may also be helpful. (It is important that our loved ones know how we would come to a decision, remembering that decisions can be changed, if needed, as none of us knows what we will really want until the time comes. Unfortunately, these decisions most often need to be made at a time when we can no longer state our preferences.)

See the FCA fact sheets, End-of-Life Choices: Holding On and Letting Goand Holding a Family Meeting for additional help. [Note: Fact Sheet titles are being changed from “End-of-Life” to “Advanced Illness” as we revise and update them. -6/2013]

Pneumonia and Ventilators

One of the other choices a patient or family member faces is how to treat pneumonia. Many years ago, pneumonia was called “the old man’s friend,” as many people suffering from chronic illnesses ultimately died of it. This is no longer true, due to modern medicine’s techniques to prevent and treat pneumonias.

Pneumonia, an infection involving the lungs, makes it difficult to breathe, causes pain, confusion and progressive weakness. There are two kinds of pneumonia—bacterial and viral. Bacterial pneumonia can be treated by antibiotics; viral pneumonia cannot, but people can now get a vaccination to prevent many kinds of viral pneumonia. Aspiration pneumonia, the kind that can result from difficulty swallowing, is a bacterial pneumonia.

After a stroke or heart attack, or when a patient is in the final stages of an illness such as Alzheimer’s disease, family members and the patient can choose not to treat pneumonia if it occurs. In this case, comfort measures to reduce pain and the distress of labored breathing would be offered, but antibiotics would not be given. Some people recover spontaneously under these circumstances; others die within a week or two.

With bacterial or viral pneumonia, as with initial treatment for a stroke or heart attack or when breathing is compromised by illness, one of the possible treatments involves a ventilator, a machine that helps the person breathe. A ventilator requires a tube down a person’s throat or through a tracheotomy (hole in the throat), also called intubating.

When a person is put on a ventilator, it is not always known ahead of time whether it will be for the short or long term. Often a ventilator is used for a short time in treating pneumonia; the patient is then “weaned” off the machine and is able to breathe again on his/her own. Sometimes, however, people are too weak or their illness is so progressed that they will never be able to breathe again on their own.

The patient then faces the possibility of remaining on the machine for the rest of his/her life. Even people who have not discussed end-of-life issues may have expressed the desire to not be kept alive “on a machine;” generally, it is a ventilator they are referring to when they say this.

When someone cannot regain the ability to breathe on his/her own, the patient and family may have to decide whether or not to continue using the ventilator. The decision to stop is very difficult to make, particularly emotionally, and, in making it, you may feel as if you have chosen to “kill” the person, although it is, in fact, accepting the natural process of dying. However, like the use of artificial nutrition, use of a ventilator is also a quality of life decision. For some people, staying alive under these circumstances is not acceptable.

One way patients and family members can ease the difficulty of this decision is to choose not to use a ventilator as treatment in the first place. Patients can make their wishes known about this through Advanced Directives and discussions with their physicians and family members.

Even with the best advanced planning, patients and family members often must make decisions in a crisis situation. It is natural, even reflexive, to make decisions to prolong life. However, quality of life measures are also important considerations. Each illness has a different course, and being well informed about a loved one’s particular illness can help with the decision-making process. When you know what the choices and consequences are, you can make a decision consistent with a loved one’s wishes and values.


JAMA, October 13, 1999, Vol. 282, No. 14, Few Data on Tube Feeding for Patients with Dementia, A Review of Evidence, Thomas E. Finucane, M.D., Colleen Christmas, M.D., Kathy Travis, M.D., pgs. 1365-1370, 1380.

A Good Dying: Shaping Health Care for the Last Months of Life, Joan K. Harrold, M.D., Joanne Lynn, M.D., Haworth Press, Inc, New York, 1998. Co-published inThe Hospice Journal, Vol. 13, No 1, 2, 1998.

This Far and No More, Andrew H. Malcolm, Times Books, 1987.

Dementia Care Practice Recommendations, Phase 3: End of Life Care, Alzheimer’s Association,

Making Sacred Choices at the End of Life, Rabbi Richard Address, Jewish Lights Publishing, 2000.

Bioethics, Thomas Shannon, ed. Paulist Press, 2009

Swallowing Problems, Janis S. Lorman, Interactive Therapeutics, Inc, 1998,

Casebook on the Termination of Life Sustaining Treatment and the Care of the Dying
, Cynthia Cohen, ed. The Hastings Center, 2005.*.html

Artificial Nutrition and Hydration and End of Life Decision Making, 
Caring Connections, 2001,

When Alzheimer?s Steals the Mind, How Aggressively to Treat the Body, 
NewYork Times, 5/18/2004

The Feeding Tube Dilemma, 
The Center for Bioethics and Human Dignity, 1/27/06,

Handbood for Mortals: Tube Feeding

“Palliative Excellence in Alzheimer?s Care Efforts (PEACE)”, Journal of Palliative Medicine, 4/6/2003,


Family Caregiver Alliance 
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388 (800) | 445-8106 | “

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, head injury, Parkinson’s and other debilitating disorders that strike adults.

Alzheimer’s Association
(800) 272-3900

Compassion & Choices
(800) 247-7421

Hospice Foundation of America
(800) 854-3402

Improving Care for the Dying

National Hospice and Palliative Care Organization
(703) 837-1500 (Alexandria, VA)

Dying Unafraid

Finding Your Way and Talking it Over


Prepared by Family Caregiver Alliance. Updated 2013. Reviewed by John Neville, MD. Funding provided by the Stavros Nicharos Foundation © 2003 – 2013 All Rights Reserved.

© 2016 Family Caregiver Alliance


Behavioral Syndromes in Mild Cognitive Impairment and Alzheimer’s Disease

J Alzheimers Dis. 2013 Aug 20. [Epub ahead of print]

Behavioral Syndromes in Mild Cognitive Impairment and Alzheimer’s Disease.

Van der Mussele SMariën PSaerens JSomers NGoeman JDe Deyn PPEngelborghs S.

Reference Center for Biological Markers of Dementia (BIODEM), Laboratory of Neurochemistry and Behavior, Institute Born-Bunge, University of Antwerp, Belgium Department of Nursing and Midwifery Sciences, Faculty of Medicine and Health Sciences, University of Antwerp, Belgium.



Behavioral disturbances belong to the core symptoms of dementia and are also common in mild cognitive impairment (MCI). The identification of sets of symptoms is clinically interesting, as interventions targeting syndromes may be more effective than the management of individual symptoms.


This study aimed to identify, describe, measure, and compare the fundamental behavioral syndromes that underlie the observed behavioral symptoms in MCI and Alzheimer’s disease (AD).


A cross-sectional analysis of baseline data from a prospective, longitudinal study on behavioral symptoms in MCI and dementia was performed. The study population consisted of 270 MCI and 402 AD patients. Behavioral assessment was performed by means of Middelheim Frontality Score (MFS), Behave-AD, Cohen-Mansfield Agitation Inventory (CMAI), and Cornell Scale for Depression in Dementia (CSDD). Principal components factor analysis with Direct Oblimin rotation was carried out on the MFS score ≥5, seven cluster scores of the Behave-AD and the total scores of the CMAI and the CSDD.


We identified three factors explaining behavior in the MCI group: a depression, a psychosis, and an agitation syndrome. Similar factors were found in AD, but the order: an agitation, a depression, and a psychosis syndrome, respectively, and the structure differed slightly. Diurnal rhythm disturbances and frontal lobe symptoms loaded with the depression syndrome in MCI and in AD they loaded with the agitation syndrome. Behavioral syndromes correlated in AD, but not in MCI, and the prevalence and severity of the behavioral syndromes were higher in AD than in MCI, except for the severity of the depression syndrome.


In both MCI and AD, three similar behavioral syndromes exist, but behavior in MCI is more dominated by a depression syndrome, while behavior in AD is more subject to an agitation syndrome.


13 Essential Tips for Dementia Caregivers

(TheHuffingtonPost) The journey of dementia is never easy, and it can be made many times worse if family members do not have the internal tools to take care of themselves and their loved ones. Here, based on years of experience in successfully navigating the dementia care landscape, are 13 tips that may save you a lot of grief as a care partner (caregiver) of someone with dementia.

1. Start your day with a few minutes of sitting mindfulness practice, and end the same way.

Mindfulness practice, even for a few minutes a day, can reduce stress. It is also a good way to start your day from a calm, centered place, which is what your loved one needs most from you. If you’re not sure how to practice, simply find a quiet place, close your eyes, sit in an alert yet relaxed posture, take a few minutes to check in with yourself and then turn your attention to your breath. Let your body breathe, and simply watch the in and out flow of your breath. You will notice thoughts and sounds coming and going. That is a normal part of the experience. When that happens, simply return to observing the breath. Sit like this for a few minutes.

2. Incorporate mindfulness into your routines: walking, doing chores, caring for loved one, etc.

The same way you were observing your breath while sitting, you can also pay attention to the sensations of your feet on the ground while walking. You can practice while walking alone or with your loved one — the slower the better. While washing your hands, you can become aware of the sensations of the water running over your hands. While assisting your loved one with dinner, you can focus on the experience of filling up the spoon, bringing it to the person’s mouth and their experience of eating. Remember, it is about being present for the experience in the moment, all of it and regardless of what it is. You may do this as often as you want throughout the day.

3. Practice recognizing and being with your emotions, including difficult ones.

When caring for someone with dementia, you are bound to experience many — and sometimes difficult — emotions: grief, anger, boredom, tiredness, fear, anxiety, frustration. A very powerful and simple practice is to simply acknowledge the emotion and its physical manifestations in your body. Where am I feeling it? How does it feel? What are the sensations? Also, recognize whether it is pleasant or unpleasant and feel the whole extent of the pleasantness or the unpleasantness. And when you need a break, focus your attention on the breath and watch it come and go. Lastly, identify the thoughts that come with the emotion and see where you are getting caught. Are there changes you can make in the outside world, or do you need to change your attitude?

4. Practice loving kindness for yourself, and also for your loved one.

When the fear or the anger get to be too much, mitigate with some kind energy of your own. Think about someone, something or a place that is very dear to you. Feel the love and kindness emanating from your heart and send it to yourself. While you may not “believe” in it at first, trust that it will make its way through to you eventually. You are working on rewiring your brain, and it takes time! Quietly say something like this to yourself: “May I be at peace, may I be at ease,” and repeat a few times, wishing you well. You may then send that same kind energy to your loved one, this time repeating the words, “May you be at peace, may you be at ease,” wishing him or her well. This is a simple yet very powerful practice if you do it often.

5. Share your mindfulness practice with at least one other care partner.

When led into a sitting mindfulness practice for the first time, caregivers almost always report feeling incredibly at peace and say they wish they could start their days in that way. Then comes the question of: Why not? That’s the thing about mindfulness — simple in principle, yet very difficult to practice and sustain on one’s own. Unless you find at least one other person to practice with or who encourages you to practice every day, chances are you will not keep up with it. It could be another family member, the paid caregiver who is helping you or people in your local caregivers support group.

6. Put your emotions out, either in writing, collages or other expressive art forms.

When emotions run strong, and you don’t know what to do anymore, one practice is to put your emotions out through simple, expressive art techniques. No need for fancy supplies. You can journal, you can write poetry. You can do self-collages, tearing images that grab you in old magazines and placing them on a sheet of paper, without giving too much thought to it. You are turning off your rational brain and letting your heart speak through words or found images. The point is not to be a poet or an artist — it is about you literally “expressing” what is inside of you.

7. Share your joys and struggles with other care partners like you.

There are plenty of support groups out there, where you can find emotional relief in the telling of your story and the sharing of your joys and your struggles. You need to guard against the temptation of isolation, however. As a family caregiver, you are at high risk of depression and consequently are more likely to be tempted into retreating and not reaching out to others for emotional support. A good rule of thumb is this: The less you want to socialize, the more you need it for your own sanity and also the well-being of your loved one.

8. Get others to help you.

If it takes a village to raise as child, it takes a whole care team to provide good care to a loved one with dementia. It is not humanly possible for a single person to do this, particularly as the years unfold and your loved one requires more and more assistance cognitively, emotionally and physically. If you are someone who has always prided herself in being self-sufficient, you will have to shift your attitude. Getting the help you and your loved one need is a sign of psychological strength. There are many who are there to help you: geriatricians, neurologists, geriatric care managers, nurses, home health agencies, other family members, physical therapists, psychotherapists, financial planners, volunteers, etc.

9. Get enough sleep, eat well and exercise.

As important as your emotional health is keeping your body strong and healthy. With the stress from dementia caregiving, one may be tempted to eat not enough or too much, or stop exercising altogether. Worries about your loved one wandering or accumulated nervous fatigue from a long day of care may dampen one’s ability to sleep. Associated with these lifestyle changes are recent statistics from the Alzheimer’s Association showing that caregivers are at a substantial increased risk for hypertension and cardiovascular disease. You need to remember that your physical health comes first. Make it a point of having only healthy foods in the home and of walking as much as possible.

10. Validate the person’s reality.

The person’s experience of the world and their relation to it has changed, and there is nothing he or she can do about it. You, on the other hand, have it in you to make some adjustments. Not doing so will only cause more suffering for your loved one and more trouble for you, since your loved one will have to act out his or her suffering in one way or another. Yes, you may be attached to the idea of your loved one as your husband, but if he insists on calling you his daughter, go with the flow and remember that for him, you have fallen into the more general “love” category. The fine distinctions we usually make between various roles no longer apply.

11. Still see the person as a whole person, and behave accordingly.

Beware of falling into the trap of positioning the person as incompetent, as a child or someone who is no longer there. Holding these ideas will act as a self-fulfilling prophecy and influence your behavior in such a way as to cause the person to behave more and more as if there is no one there. Rather, operate from the premise that the person is still very much there, no matter what it may look like from the outside. Do not expect anything and welcome the surprises when they come, as they often times do with persons with dementia. A smile, a word, a sentence, singing an old song, dancing — you never know.

12. Meet the person’s five universal emotional needs.

Regardless of their cognitive, emotional, physical state, human beings all have five universal emotional needs: 1.) to be needed and useful, 2.) to have the opportunity to care, 3.) to love and be loved, 4.) to have self-esteem boosted, 5.) to have the power to choose. When caring for your loved one, make sure that each of these needs is being met. Failure to do so will negatively impact his or her well-being and will lead to either shutting down or agitation. For someone who no longer speaks or moves, honoring that person’s need to be needed may mean telling them how sitting next to them brings you a sense of peace.

13. View the person’s difficult behaviors as expressions of unmet needs.

Adopt the point of view that any behaviors, particularly difficult ones, are the person’s attempt to communicate distress, using the limited means of communication at their disposal. They are not being difficult, they are simply telling you that something needs to be attended to urgently. Too much noise or not enough, a brief that needs to be changed, being thirsty, not being “seen” for the person they are, pain somewhere in the body, temperature that’s too hot or too cold, a sense of personal space that’s being invaded, words that don’t come out as intended … so many possible reasons to get upset that may not be obvious to you. You need to become a detective and figure things out. But before you do, take your loved one’s distress seriously, not personally.

And remember, this is not just for you alone to practice. Instead, get the whole care team to join you, and together become more mindful and understanding. It will be good for you, and it will be good for your loved one.


Marguerite Manteau-Rao, LCSW, ATR

Copyright © 2013, Inc.


Caregiver Depression: Prevention Counts

(Mayo Clinic) Caregiver depression can take a toll on you and your ability to care for your loved one. Understand the signs of caregiver depression — and know how to prevent it.

Caregiving is often physically and emotionally stressful. In an effort to provide the best care possible, you might put your loved one’s needs before your own. In turn, you could develop feelings of sadness, anger and loneliness. Sometimes, these emotions can trigger caregiver depression.

What are the symptoms of caregiver depression?

Everyone has a bad day sometimes. However, to be diagnosed with depression — also called major depression — you must have five or more of the following symptoms over a two-week period. At least one of the symptoms must be either a depressed mood or a loss of interest or pleasure. Symptoms include:

  • Depressed mood most of the day, nearly every day, such as feeling sad, empty or tearful
  • Diminished interest or feeling no pleasure in all — or almost all — activities most of the day, nearly every day
  • Significant weight loss when not dieting, weight gain, or decrease or increase in appetite nearly every day
  • Insomnia or increased desire to sleep nearly every day
  • Either restlessness or slowed behavior that can be observed by others
  • Fatigue or loss of energy nearly every day
  • Feelings of worthlessness, or excessive or inappropriate guilt nearly every day
  • Trouble making decisions, or trouble thinking or concentrating nearly every day
  • Recurrent thoughts of death or suicide, or a suicide attempt

What can I do if I develop caregiver depression?

If you’re experiencing signs or symptoms of caregiver depression, consult your doctor or a mental health provider. Depression isn’t something you can simply “snap out” of — and left untreated, depression can lead to various emotional and physical problems. It can also affect the quality of care you’re able to provide for your loved one. However, most people who have depression feel better with the help of medication, psychological counseling or other treatment.

What can I do to prevent caregiver depression?

You can take active steps to prevent caregiver depression. For example:

  • Reach out for help. Don’t wait until you feel overwhelmed to ask for help caring for a loved one. If possible, get your whole family involved in planning and providing care. Seek out respite services and a caregiver support group. A support network can keep you from feeling isolated, depleted and depressed.
  • Remember other relationships. Caregiving can take time away from replenishing personal relationships — but showing loved ones and friends you care about them can give you strength and hope.
  • Start a journal. Journaling can improve your mood by allowing you to express pain, anger, fear or other emotions.
  • Take time for yourself. Participate in activities that allow you to relax and have fun. Go to a movie, watch a ballgame, or attend a birthday party or religious gathering. Physical activity and meditation also can help reduce stress.
  • Stay positive. Caregiving allows you to give something back and make a difference in your loved one’s life. Caregiving might also have spiritual meaning for you. Focus on these positive aspects of caregiving to help prevent depression.

Remember, if you think you’re depressed, seek help. Proper treatment can help you feel your best.


By Mayo Clinic staff

© 1998-2013 Mayo Foundation for Medical Education and Research (MFMER).