Frequently Asked Questions About Alzheimer's Protection Planning

Agitation is defined as:

• The act of agitating, or the state of being agitated; the state of being moved with violence, or with irregular action; commotion[1]
• A stirring up or arousing; disturbance of tranquility; disturbance of mind that shows itself by physical excitement; perturbation.[2]

Agitation is a common emotion that every human experiences. To the person who is living with Alzheimer’s, agitation is often the result of unmet needs or frustrations they are unable to express. This article deals with five areas that contribute to agitation and provides suggestions on how to best assess what is going on and how to cope with the agitation in a positive manner.

The person

Many professionals working with individuals with dementia believe that behind every behavior exhibited, there is a cause or reason. Malcolm Goldsmith of the UK Journal of Dementia Care said, “If we spent as much time trying to understand behavior as we spend trying to manage and control it, we might discover what lies behind it is a genuine attempt to communicate.”

When agitation is displayed, stop and validate the person’s feelings:  “You seem upset, can you tell me what is wrong?”  This simple question could help de-escalate a difficult situation.

The most common time when agitation is evident is during personal care. The person with dementia may feel as if he or she has lost his or her sense of dignity. When providing personal care, start by briefly explaining what will happen:  “I am going to help you wash your hair, doesn’t it feel good to have clean hair?”  Be sure to give explanation in a gentle tone each step and do not rush. Rushing will almost always lead to agitation and make the day more difficult for both of you.

Be sure to offer affirmation throughout the day, such as:  “Thank you for helping me pick out those clothes. You look beautiful today.” “You did a great job at setting the table.”

Often agitation is sparked by fear. Use a gentle touch and soft-spoken and positive words throughout all tasks, reminding the person with dementia that he or she is in a safe place. Remember to:

• Validate the person’s feelings.
• Offer care with dignity.
• Do not rush.
• Offer affirming statements.

Communication

Good communication is an important part of any relationship. When caring for a person with dementia, the ability to communicate becomes more and more difficult. Both expressing and processing information becomes impaired. This inability to express and process can be frustrating and manifest itself as agitation. Agitation can include anything from pacing to lashing out. As caregivers, we want to prevent this reaction as much as possible by communicating effectively and allowing the person time to process and respond.

The following tips will improve communication:

• Approach from the front to prevent startling.
• Maintain eye contact.
• Lower the tone of your voice. A high pitch may indicate you are upset.
• Smile and be pleasant.
• Talk with a calm presence.
• Speak slowly, clearly, and directly.
• Identify yourself.
• Use short, simple sentences.
• Ask one question at a time.
• Eliminate background noise.
• Give plenty of time to respond.
• If he or she cannot find words, gently finish the sentence.
• Repeat information when needed – repetition is good.
• Frequently affirm/praise him or her, even for the smallest things.
• Allow choices when possible, for example, “Coffee or milk?” “Blue or yellow shirt?”
• Validate feelings.
• Use gentle touch.
• Give hugs many times a day.
• Don’t argue – you’ll never win.
• Laugh together.
• If your talk becomes “heated,” stop. Leave the room briefly and try again later.
• Don’t talk down.
• Don’t correct him or her.
• Don’t demand. Ask nicely.
• Don’t take adverse behavior personally.
• Slow down! Hurrying increases frustration.

Non-Verbal Communication

Non-verbal communication is important to be aware of, both what we are communicating to our loved ones, and what they are communicating to us. Non-verbal communication can be processed and expressed by persons with dementia through body language, facial expressions, and tone of voice. They are sensitive to how you communicate with them and able to determine if you are being sincere or not.

Interpreting non-verbal communication

When your loved one gets up and goes to the bathroom several times per hour…

He or she may be communicating pain, a possible urinary tract infection. Schedule an appointment with their physician.

When your loved one takes off their shirt in public…

He or she may be expressing that they are too warm. Try putting lighter clothing on and something difficult to take off independently.

When your loved one has a grimaced look on their face…

He or she may be experiencing pain somewhere. Look at their position and ask if they hurt anywhere.

When your loved one firmly holds her mouth closed when you’re feeding them…

He or she may not be hungry. Try feeding later.

When your loved one cries when you walk out of the room…

They may be expressing fear of being alone. Try giving them an object to hold, such as a stuffed animal when you leave the room and assure them you will be back.

Pain Management

Pain occurs in a cycle:

Pain…Anxiety…Fatigue…Depression…Pain…Anxiety… Fatigue…Depression…and so on.

If a person with dementia is in this cycle, and unable to communicate it, you may have to step in and figure out what the problem is. There are many causes to the pain, including infection, arthritis, joint and muscle problems, inflammation, headaches, etc. If your loved one has a history of any of these conditions, continue with treatment as ordered by a physician. Continue to have your loved one’s overall health assessed by routine exams to determine any condition that could cause pain or discomfort. Prior to the appointment, inform the physician about your observations. Dementia typically does not progress that rapidly. If your loved one takes medication, be aware of the possibility that some medications can cause agitation. Always consult your physician if you have questions or concerns. For the caregiver, the issue of overall care management is a constant guessing game of assessing and responding to needs of their loved one as well as possible.

Environment

Environment includes the circumstances and conditions that surround us. It plays a large role in human behavior. It is important to create a safe and comfortable environment for the person with dementia. The following areas need to be assessed for optimal comfort:

• Temperature: too hot or too cold.
• Lighting: too bright or too dim.
• Walkways/hallways: too cluttered.
• Noise: too loud, too much.
• People: comfort with those who are around.

Look for patterns of agitation, such as whether it comes on with time of day, particular activities or events, children visiting, or bathing. When you notice the pattern, readjust your schedule to meet the dementia person’s needs.

Agitation, Summary and Conclusion

Use “Behavior Acceptance” when dealing with the dementia person. This term means looking beyond the behavior to the core of the problem causing the behavior. Look to correct the problem, which typically will adjust the behavior. Always remember that as individuals, we all need to be loved. The person with dementia needs to feel loved, safe, secure, needed, useful, and a part of the environment. We must provide this for them by showing them love, including them whenever possible, and allowing them to help in whatever way they can.

The person with dementia is not able to change, so you as the caregiver must adapt. Constantly assess how you can better respond to a situation or behavior in a positive manner.

Call us at 919-443-3035. One of our friendly Client Welcome Specialists will be happy to tell you more about The Alzheimer’s Planning Center and our unique Memory Safeguard Planning, to help you determine the best path forward, and to help you take the next steps toward a more secure future and a better life.

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[1] “Agitation.“ Wiktionary, the free dictionary, 2018. https://en.wiktionary.org/wiki/agitation (May 7, 2018)

[2] “Agitation.“ Wiktionary, the free dictionary, 2018. https://en.wiktionary.org/wiki/agitation (May 7, 2018)

“Sundowning” is a term that describes increased confusion as the day progresses. The cause of sundowning is unknown, but there are factors that may contribute to the symptoms, such as fatigue, low lighting, and increased shadows. As the day progresses, the person with Alzheimer’s disease becomes more confused. Sundowning is predictable, beginning at about the same time each day. Due to the predictability, there are ways to help combat this difficult behavior.

• Keep a consistent routine.
• Provide a scheduled quiet time. This should be no more than one hour. If the person is unable to rest, try soft music, low lighting, and hand/back massages.
• After quiet time has ended, make sure there is adequate lighting throughout the house.
• As sundowning begins, keep the individual busy to distract them from the setting sun.

Remember that as the care provider, you are at risk of fatigue and burn out. Be sure to use whatever help is available to you so that you can continue to provide the level of care you desire to give your loved one.

Call us at 919-443-3035. One of our friendly Client Welcome Specialists will be happy to tell you more about The Alzheimer’s Planning Center and our unique Memory Safeguard Planning, to help you determine the best path forward, and to help you take the next steps toward a more secure future and a better life.

A frequent question at our office, particularly when a parent has dementia or Alzheimer’s, is along the lines of: I have power of attorney for my mother, but she keeps writing checks and making poor financial decisions when I’m not around. What do I do?

While Durable Powers of Attorney are an important part of a well-rounded estate planning, they do have one major shortcoming: A Durable Power of Attorney appoints an Agent to act on behalf of the Principal (e.g., mom or dad), but it does NOT stop the Principal from still conducting business on his or her own.

Set Up a Trust

If the Durable Power of Attorney authorizes you to do so, you may consider establishing a trust on your parents behalf and nominate yourself as trustee. As power of attorney you would transfer your parent’s assets into the trust and then manage the trust as trustee. Only a trustee can conduct business on behalf of a trust, therefore, your parent would not be able to write checks or conduct financial transactions for any assets that are in the trust.

We strongly recommend that you consult with an attorney regarding this option and whether you’re legally authorized to establish a trust on your parent’s behalf.

Adult Guardianship

The next step may be to consider an adult guardianship proceeding. A guardianship proceeding will include an incompetency hearing. If the court finds your parent to be incompetent, the clerk of court will issue an order of such finding and will appoint a guardian to manage your parent’s affairs. You can then give copies of the court order to all banks and financial institutions where your parent holds accounts to notify the bank or financial institution that your parent has been declared incompetent by the court and no longer has legal authority to conduct transactions on his or her own behalf.

Are You Caring for an Aging Parent or Family Member?

As a caregiver, you know better than anyone that good help and clear guidance is hard to find.

You may be struggling to find and pay for long-term care services, hitting roadblocks and waitlists in trying to get your loved one placed in an appropriate facility, or constantly fighting with doctors, hospitals (or even other family members) because you don’t have the necessary legal or financial authority to oversee your loved one’s affairs and/or care.

Solid legal and financial planning is your answer and can help you put an end to all of the confusion and overwhelm that you currently face.

Our free Caregiver’s Guide is here to help. Request your copy here or call us at 919-443-3035 to discuss how we can help.

Related Links: Series on Durable Power of Attorney, Incapacity, & Adult Guardianship What is a Financial Durable Power of Attorney and Are They All the Same? 10 Benefits of a Comprehensive Power of Attorney Is Your Durable Power of Attorney Powerful Enough? 2018 Law Update: North Carolina Uniform Power of Attorney Act 11 Reasons YoNot to Add Your Son or Daughter As Joint Owner On Your Bank Account or Home When Is an Adult Guardianship Needed? What’s the Process? How Do I stop Mom or Dad From Writing Checks?