Module 08

Managing Dementia-Related Challenging Behaviors

Sample Video:
“Compassionate Deception”

Topics Covered in This Module:

  • The Three “Don’ts of Dementia”
  • Stress, triggers, and sundowning
  • Compassionate deception
  • Responding to and de-escalating dementia behaviors

Caregivers who participate in this module will:

  • Become Aware of the types of stressful situations and events that contribute to “Sundowning” — a term that is used to describe increased confusion, restlessness, and agitation that frequently occurs late in the afternoon and into the evening. 
  • Accept that some of these behaviors are a response to physical and/or emotional “Triggers” that cause a person living with a dementia-related disease to repeatedly experience stress throughout the day. 
  • Take Action by: 
    • Accepting that the disease is in control. 
    • Becoming curious and looking for possible physical and/or emotional triggers that might be causing stress. 
    • Recognizing how the caregiver’s behavior, actions, attitude, and interactions could be emotional triggers that create stress. 
    • Distracting and redirecting the care receiver when 
    • Making adaptations to the environment to reduce physical triggers.

“Dementia – A Different Reality”

“Stress, Triggers, and Sundowning”

“Responding to Dementia Behaviors”

“Compassionate Deception”

Bonus Video:

“Personality Profiles – Birdie”

“Personality Profiles – Danny”

There are 120 different types of dementia. It is a general term used to describe memory loss and other impaired brain functions. Four common types are Alzheimer’s, Lewy body, Frontotemporal, and Vascular. 

Alzheimer’s is the most common. It causes problems with memory, thinking, and behavior. People who are living with Alzheimer’s can feel confused, disoriented, and depressed. It generally develops in older people, but approximately 200,000 under 65 have younger-onset Alzheimer’s. 

People with Parkinson’s Disease often develop Lewy Body dementia. According to the Alzheimer’s Association, up to 80% of people will develop this type of dementia about 10 years after getting an initial diagnosis of Parkinson’s. People with Lewy body dementia can have symptoms similar to Alzheimer’s, and they can also experience movement disorders, anxiety, irritability, delusions, hallucinations, and depression. 

Frontotemporal dementia involves the loss of nerve cells. It impacts a person’s behavior, their ability to relate to others, and it can also create problems with language and movement. 

Vascular dementia can occur after a person has a stroke. Bleeding or vessel blockage in the brain affects a person’s physical movements and their thinking processes, including their ability to organize, plan, and make decisions. 

How do you identify the different types of dementia? 

There is not a single test that can diagnose dementia. A neurological exam is necessary to evaluate a person’s cognitive function. Tests for memory, language, problem-solving, movement, balance, and reflexes need to be evaluated before a diagnosis can be made. 

Brain scans can also help identify specific types of dementia. An MRI or a CT scan will check for bleeding, which can show evidence of a stroke. PET scans show patterns of brain activity and can indicate whether the amyloid protein, which is associated with Alzheimer’s disease, is present in the brain.  

How do you maintain your own emotional balance when a loved one is diagnosed with dementia? 

There are some medications that help relieve the symptoms, but there is no known cure for any type of dementia. So once someone you love receives a diagnosis, the question is not, “What can we do to stop it?” Instead, the question becomes, “How can we live with the impact this disease is going to have on both of us?” 

Nothing will make it easy, but here are five steps that might make it a little less stressful for both of you: 

  1. Understand and accept that the disease is in charge. Your loved one is going to behave in ways that you don’t understand. As a caregiver, you will experience a wide range of emotions, including anger, fear, frustration, depression, and grief. It’s nobody’s fault. It can’t be fixed, and no matter what you do, the disease will progress. If you can get mad at the dementia rather than your care receiver, it will most likely reduce stress for both of you.  
  2. Get your end-of-life documents in order. Make sure your will or trust is updated. Appoint a durable power of attorney and a healthcare representative. Complete an advance directive. If you don’t have these documents in place yet, don’t put it off. Call now and make an appointment with an estate attorney or an elder law attorney. If you wait until your care receiver loses the cognitive ability to understand and sign his/her own documents, you might have to go through the court to get appointed as their guardian and conservator. It is an expensive and invasive process that you will want to avoid if at all possible. 
  3. Practice the Three Don’ts of Dementia: As a caregiver, you will most likely need to change the way you have communicated with your care receiver in the past. There are a lot of strategies for reducing stress and improving communication with a person who has dementia, but there are three things that will never work. 

The Three Don’ts of Dementia:  

  • Don’t argue! You will not win. Understand that their reality is as real to them as your reality is to you. Arguing with them will not change their mind. It will only increase their stress, anxiety, and feelings of frustration. 
  • Don’t try to talk them out of anything. If their mind is made up, no amount of empirical evidence will change it. Again, trying to persuade or dissuade them of anything will only create friction and frustration for both of you.
  • Don’t force them to remember.  When dementia steals a person’s   memories, those memories are gone. They will not return. Your care receiver may reach a point where they no longer recognize who you are or remember how you fit into their life. Don’t take it personally. It’s not their choice. Their brain is dying, and trying to force them to remember anyone or recall anything will only add to their agitation and feelings of inadequacy.   

Accept their reality as real. My friend Dorothy Tucker worked as a nurse in nursing homes and memory care communities for 30 years. When she  first started caring for people with dementia, she was taught that Reality Orientation would help keep people grounded in the current time and place. 

Reality Orientation got its start in the mid-1960s when the medical community believed that repeatedly informing and correcting people with dementia about things that had happened in the past and reminding them about what was real in the present, would help them retain memories and stay grounded in reality. 

Dorothy quickly learned that trying to make a person with dementia see the world through her eyes did not work. Ever.

If you tell someone with dementia who believes her husband is alive that he actually died 10 years earlier, you will be breaking the news to her for the first time. If you remind her every day that he is dead, she will experience the same shock and horror every time she hears it. 

If you can accept that the disease is in control, that your care receiver has no choice in which memories and skills will be stolen, and if you can allow yourself to join them wherever they are at any particular moment, release your attachment to who that person used to be, and focus your energy on helping them be comfortable, relaxed, and happy in their current state, the process will still be hard, but it may be a little less strenuous for both of you.

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