Linden Mueller's List: All About Alzheimer's

• And even if caregiving is something you think you do reasonably well, it can be hard to find satisfaction as a caregiver when your loved one's condition only declines.

• People with end-stage Alzheimer's disease can't recognize their loved ones. They can't control their bowels or bladders. They can't communicate verbally.
• The National Hospice and Palliative Care Organization has published guidelines to help doctors determine when hospice is appropriate for people with Alzheimer's disease.
• People with late-stage Alzheimer's experience the world through their senses, so use their senses to maintain a connection.
• Hold your loved one's hand. Brush his or her hair. Give a gentle massage to the hands, legs or feet.
• The person may enjoy the smell of a favorite perfume, flower or food.
• Videos can be relaxing for people with Alzheimer's disease, especially ones with scenes of nature and soft, calming sounds.
• Reading to the person also can be comforting, even if he or she can't understand the words. The tone and rhythm of your voice are soothing.

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• Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day when the person with AD is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
• Consider using adult day care or respite services to ease the day-to-day demands of caregiving. These services allow you to have a break while knowing that the person with AD is being well cared for.
• Choose simple words and short sentences and use a gentle, calm tone of voice.
• Avoid talking to the person with AD like a baby or talking about the person as if he or she weren’t there.
• Minimize distractions and noise
• Try to frame questions and instructions in a positive way.
• Give the person food choices, but limit the number of choices. Try to offer appealing foods that have familiar flavors, varied textures, and different colors.
• Encourage the person to drink plenty of fluids throughout the day to avoid dehydration.
• As the disease progresses, be aware of the increased risk of choking because of chewing and swallowing problems.
• Simple activities often are best, especially when they use current abilities.
• Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else.
• Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
• Try to include the person with AD in the entire activity process.
• Not only can it improve health, but it also can provide a meaningful activity for both of you to share.
• Local malls often have walking clubs and provide a place to exercise when the weather is bad.
• Encourage physical activities. Spend time outside when the weather permits. Exercise often helps everyone sleep better.
• Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every 3 hours or so during the day.
• Encourage exercise during the day and limit daytime napping,
• As the disease progresses, a person with AD may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes, or feels something that is not there. Delusions are false beliefs from which the person cannot be dissuaded.
• Sometimes hallucinations and delusions are a sign of a physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
• Avoid arguing with the person about what he or she sees or hears. Try to respond to the feelings he or she is expressing, and provide reassurance and comfort.
• Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help.
• Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
• Make sure that the person carries some kind of identification or wears a medical bracelet.
• Keep a recent photograph or videotape of the person with AD to assist police if the person becomes lost.
• • Use childproof latches on kitchen cabinets and anyplace where cleaning supplies or other chemicals are kept.  
  • Label medications and keep them locked up. Also make sure knives, lighters and matches, and guns are secured and out of reach.  
  • Keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall.
• Be alert to and address kitchen-safety issues, such as the person forgetting to turn off the stove after cooking.
• • Don’t tell the person about the appointment until the day of the visit or even shortly before it is time to go. Be positive and matter-of-fact.  
  • Bring along something for the person to eat and drink and any activity that he or she may enjoy.  
  • Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor.
• Limit the number of visitors at one time, and try to schedule visits during the time of day when the person is at his or her best.
• Be calm and quiet. Avoid using a loud tone of voice or talking to the person as if he or she were a child.
• If the person is confused, don’t argue. Respond to the feelings you hear being communicated, and distract the person to a different topic if necessary.
• Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.

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• Alzheimer's is going to affect how you think, what you feel, who you are, and what you do.
• Behavior changes you experience are caused by damage to the brain and are not something you can control or prevent.
• Alzheimer's makes it more difficult to learn, understand, reason, or remember.
• As you live with Alzheimer's, you might experience a progressively lowered stress threshold, meaning that the amount of stress you can handle before experiencing discomfort or emotional upset decreases over time.

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• Your loved one may have just as much trouble deciphering your words.
• Don't take it personally. It's the disease talking, not your loved one.
• Show interest. Maintain eye contact and stay near your loved one so that he or she will know you're listening and trying to understand.
• Communication is difficult, if not impossible, against a background of competing sights and sounds.
• Use short sentences and plain words
• When communicating a task or request, break it down into single steps. Following a multistep command will be a setup for failure in someone with Alzheimer's disease.
• Don't interrupt. It may take several minutes for your loved one to respond. Avoid criticizing, hurrying, correcting and arguing.
• Use props and visual cues to increase recognition. For example, take the person to where the toilet is visible, and point to it before asking if he or she needs to go to the bathroom.
• In this disease, reasoning and judgment capabilities decline over time. Avoid trying to convince them that they are wrong and you are right, in which case the most likely outcome will be increased anger and agitation.
• Even if you get frustrated, try to keep your voice calm and relaxed. If your words and the way you say them don't match, it may be confusing. Your nonverbal cues, including the tone of your voice, often send a clearer message than what you actually say.

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• Especially if they've recently moved to a new environment, wanderers may be searching for something or someone familiar. Or they may be trying to satisfy a basic need, such as hunger or thirst, but can't remember what to do or where the kitchen is located.
• Too much stimulation, such as multiple conversations in the background or even the noise of pots and pans in the kitchen, can trigger wandering. Because brain processes slow down as a result of Alzheimer's disease, people can become overwhelmed by all the sounds and start pacing or trying to get away.
• People with Alzheimer's often lose the ability to tell you when they're in pain. Instead, they may become restless or try to escape their pain by walking away.
• For example, a woman who was a busy homemaker throughout her life may be less likely to become bored and wander if a basket of towels is available for her to fold.
• Some people need to explore their immediate environment periodically to reorient themselves. Posting descriptive photographs on the doors to various rooms, including a photo of the individual on the door to his or her own room, can help with navigation inside the home.
• Providing a safe place to wander may help your loved one get more exercise, which can improve his or her ability to sleep through the night.

•  The Alzheimer's Association's Safe Return program is designed to help identify people who wander and return them to their caregivers. For a modest fee, you receive: 

   
   
  • An identification bracelet
   
  • Name labels for clothing
   
  • Identification cards for wallet or purse
   
  • Registration in a national database with emergency contact information
   
  • A 24-hour toll-free number to report someone who is lost
   
   

   You can register someone by filling out a form online at the Alzheimer's Association's Web page or by calling 888-572-8566.

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• If your loved one needs this type of care, balance the loss of privacy and independence with gentleness and tact.
• Time of day is often important as well. Experiment with morning, afternoon and evening bathing.
• • Help your loved one feel in control. Explain each step of the bathing process to help your loved one understand what's happening.
     
  • Be flexible. If daily bathing is traumatic, alternate tub baths or showers with sponge baths.
• Limit choices. Offer no more than two clothing options each morning. Clear closets of rarely worn clothes that may complicate the decision.
• Provide direction. Lay out pieces of clothing in the order they should be put on. Or hand out clothing one piece at a time as you provide short, simple dressing instructions.
• Be patient.
• Don't argue if your loved one doesn't want to wear a particular garment or wants to wear the same outfit repeatedly. You may even want to buy duplicates of a few favorite outfits.
• Eat at regular times. Don't rely on your loved one to ask for food. As Alzheimer's progresses, your loved one may not respond to hunger and thirst.
• varied textures, colors and spices .
• Choose foods that contrast with the color of the plate.
• Serve things one at a time. Putting only one item on the plate at a time can help keep meals pleasant and simple.
• Be careful when serving hot food. Your loved one may not recognize that a food is too hot to eat.
• Turn off the television or radio and the ringer on the telephone to help your loved one focus on the task at hand.
• Make meals an enjoyable social event so that your loved one looks forward to the experience.
• Make the bathroom easy to find. A sign on the door that says "Toilet" may be helpful. You can even use a picture of a toilet.
• Restlessness or tugging on clothing may signal the need to use the bathroom.
• Schedule bathroom breaks every two hours, before and after meals and before bedtime.
• Make clothing easy to open or remove. Replace zippers and buttons with Velcro. Choose pants with an elastic waist.
• Praise toileting success — and offer reassurance when accidents happen.

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• Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children
• Need help getting dressed properly
• suspiciousness and delusions
• compulsive, repetitive behaviors such as hand-wringing or tissue shredding

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