Caregiver Speaker, Elaine K Sanchez, incorporates real-life caregiving stories with practical, applicable strategies for managing the emotional stress of caregiving. 

In this article, she describes some of the various types of dementia. 

The Dos and Dont’s of  Dementia 

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

Alzheimer’s is the most common. It causes problems with memory, thinking, and behavior. People 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 ten years after getting an initial diagnosis of Parkinson’s. People with Lewy body dementia can have symptoms similar to Alzheimer’s and experience movement disorders, anxiety, irritability, delusions, hallucinations, and depression. 

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

Vascular dementia can occur after a person has a stroke. Bleeding or vessel blockage in the brain affects a person’s physical movements and 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 must 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 emotional balance when a loved one is diagnosed with dementia? 

Some medications help relieve the symptoms, but there is no known cure for any 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 will 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 will behave in ways 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 the disease will progress no matter what you do. 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 their documents, you might have to go through the court to get appointed as their guardian and conservator. It is an expensive and invasive process you will want to avoid if 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 with 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 started 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 ten 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 complicated. Even so, it may be a little less strenuous for both of you.

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People of all ages and stages of life become caregivers. Most of them are not prepared to manage the emotional stress of caring for individuals who are aging, disabled, or living with Alzheimer’s, Parkinson’s, Huntington’s, and other progressive and degenerative diseases. 

People of all ages and stages of life become caregivers. Most of them are not prepared to manage the emotional stress of caring for individuals who are aging, disabled, or living with Alzheimer’s, Parkinson’s, Huntington’s, and other progressive and degenerative diseases. 

When caregivers have access to the CaregiverHelp Support Group Program, they will recognize that they are not alone. 

The CaregiverHelp Support Group Program can be offered at live, in-person events. It can also be led on Zoom, as a hybrid model, or as a self-paced program. 

Organizations that provide employee support through their Caregiver ERG programs love being able to offer CaregiverHelp Support Group as a self-paced program. 

Also, as baby boomers age, most HR managers are becoming aware that many of their employees are caring for spouses and aging parents. These employees don’t know what to do or where to turn when they are faced with taking over the healthcare and finances of loved ones who can no longer care for themselves. When offered through an Employee Assistance Program, such as a Caregiver EAP, companies may see reduced stress, fewer absences, and a decreased turnover.  

CaregiverHelp Support Group Program will never make caregiving easy. However, it does provide people with the tools and support they need to make sound decisions, manage their stress, and care for themselves as they try to balance family responsibilities, work, and caregiving.