8 Things Caregivers Should Know About Dementia

I found my 88-year-old mother reading her Bible. “I didn’t know Cain killed Abel,” she said. “I guess that’s why Abel never visits us.”

This made me chuckle and yet grieved my heart at the same time. Three years ago, doctors diagnosed my mother with Alzheimer’s, the most common type of dementia. My father, who died last year, suffered from vascular dementia for many years.

Dementia is a loss of cognitive ability severe enough to interfere with daily life. There are more than 100 types of dementia, with Alzheimer’s, vascular, Lewy body, and frontotemporal being the most common. Each comes with unique challenges.

For example, my mother can become convinced she’s paraplegic when she walks just fine. In contrast, my dad honestly believed he could still safely drive to the grocery store, despite failing a driver’s test at the DMV and leveling a waist-high concrete mailbox with his minivan.

Dementia can drive a caregiver either to exasperation or to the cross.

It’s important to remember dementia is a physical disease that causes psychological symptoms. Dementia patients can’t always control their behavior. But for the more than 11 million U.S. adults caring for someone with dementia, it can be hard to remember that when a parent lashes out, empties every kitchen cabinet, or wanders outside at 3:00 a.m. It can be hard for me to remember, and I’ve spent my career in the medical field.

Dementia can drive a caregiver either to exasperation or to the cross. When I confessed before the Lord my utter helplessness to care for my parents, he gave me the faith to know he was near and the strength to offer empathy to my folks (Rom. 8:26–27). Along the way, God kindly provided both the resources and knowledge I needed to care for them.

Here are eight things to know as you care for a loved one with dementia.

1. Planning is crucial.

An estimated 70 percent of people turning 65 will require nursing-home care at some point in their lives. Most of us live as though we know for certain that we and our loved ones will be in the remaining 30 percent.

While it’s impossible to anticipate every need that will come with aging, we must have frank conversations with our loved ones. And in the face of a dementia diagnosis, time is of the essence. Consider these questions: What are your loved one’s expectations and desires for care? Are you willing and able to provide that? What steps do you need to take to ensure his or her care?

2. You’ll need the help of an attorney, not just a medical team.

Putting measures in place to enable appropriate care often involves legal documentation. Obtaining a power of attorney (POA) for both financial and health care decisions is wise in many situations, but it’s essential when caring for someone with dementia. A POA is a legal document that appoints someone to manage your affairs if you become incapacitated, allowing them to act on your behalf if necessary.

Having both documents for my parents allowed me to intervene when they made bad decisions due to dementia.

3. There are many false assumptions about financial resources for aging.

My job as a nurse case manager often involves helping a family find placement for an aging loved one in a long-term care facility. When I ask them how they’ll pay for the care, families often respond with “We know there must be some agency that pays for this.”

The reality is that Medicare doesn’t pay for long-term care, which can cost upward of $9,000 a month. Medicaid will pay for long-term care at selected facilities, with precise coverage depending on the state you live in. Even then, you must qualify financially, which can take five years.

4. Caring for a dementia patient requires patience and wisdom.

Our normal assumptions about how to navigate conversations and disagreements often don’t apply when it comes to someone with dementia.

For example, my mother asks us to buy her a cell phone every day. She can no longer operate one (even one made for seniors), but that makes no difference to her. I don’t give explanations as to why she can’t use a cell phone because laying out all the reasons gets us nowhere. She receives any disagreement from me as a threat, and that can make her anxious and even combative.

In this situation, I’ve learned it’s more helpful to ask, “Is there someone we can call right now, Mom? We can use my phone.” 

5. Reminders of reality can cause repeated grief.

When doctors first diagnosed Mom with dementia, I told myself I’d never lie to her. Then my dad died. Mom had trouble remembering he was gone. If I reminded her that Dad was dead every time she forgot, she’d experience each of those reminders as if we were telling her for the first time. Instead, we’ve told her that Dad cannot be with us right now. When she demands to know where he is, we tell her he’s getting rehab.

Though Scripture exhorts us to truthfulness, the example of the Hebrew midwives who deceived Pharaoh to protect newborn babies seems relevant here (Ex. 1:15–21). While each person must follow his or her conscience, in situations where telling the full truth to a dementia patient would cause unnecessary grief, a lie may be a form of compassionate protection.  

6. Dementia care is a marathon, not a sprint.

Alzheimer’s can last more than 10 years, depending on the patient’s overall health. Educate yourself about the disease to understand what’s ahead. John Dunlop’s book Finding Grace in the Face of Dementia provides an informative and compassionate look at this disease. Be Light Care Consulting offers seminars on dementia for a nominal fee. They can be viewed at your own pace in short snippets of time.

As you care for a loved one, get help when you need it; if possible, it’s wise to divide responsibilities. For example, my brother provides day-to-day care for Mom, and I manage the endless phone calls and related paperwork about her care. Several times a year, I swap places with my brother so he can have a much-needed break.

7. Even as cognitive abilities decline, the capacity for knowing Christ may still exist.

A dementia patient may forget, for example, that Cain killed Abel but remember old hymns right down to the fifth stanza. Don’t discount the importance of continuing to share the gospel with an unsaved loved one or of using Scripture and hymns to comfort a believer. God’s Word is powerful and effective regardless of our limitations.

8. God still uses dementia patients.

When an aged friend, Marcy, passed away, her neighbor, Renee, asked me for a ride to the funeral. Imagine my shock when 89-year-old Renee told me about her recent conversion.

God’s Word is powerful and effective regardless of our limitations.

“It’s Marcy’s fault,” Renee explained. “Every day for months, she would come over and tell me how Jesus loved me and died for me. Marcy kept forgetting she had told me about Jesus the day before, and the day before that. You get the picture. After the umpteenth time hearing about it, I realized it must be true. God loved me and died to save my soul! I don’t think anyone but Marcy could help me understand.”

For many of us, becoming incapacitated by dementia is one of our greatest fears. And caring for a loved one who has it is an incredibly difficult road. But I find comfort in knowing that nothing—dementia included—can separate us or our loved ones from God’s love (Rom. 8:35–36). As we care for those with dementia, may we be conduits of his love.