What Families Need to Know About Dementia

A dementia diagnosis is manageable

/ Author:  / Reviewed by: Joseph V. Madia, MD

Your mother is getting older, and she's starting to forget things. You're worried that she might have dementia. If you go to the doctor and get that diagnosis, do you know what to ask?

Your first question should be, 'What kind of dementia?' That's according to Tam Cummings, MS, a gerontologist based in Austin, Texas. Cummings studies aging, and helps families understand the process of dementia.

Cummings told dailyRx that many of the families she works with are not aware that there are many different kinds of dementia, and they are rarely well prepared to handle a long and difficult disease.

“I see families that are absolutely angry. They feel that no one prepared for this, no one really explained what losing your memory means,” said Cummings.

She said that most doctors do not have time to counsel patients personally on how to deal with the diagnosis. But having the information can make a big difference to families.

“You've got to find out which dementia it is, you have to find your specialist, you need to know how it's going to progress, and you're going to have to figure out how to set up the next several years of your life to handle this.

So families who have prepared simply deal with process better than someone who is caught off guard by every change that their loved one goes through.”


Many patients get their diagnosis from a general practitioner, who does not specialize in memory loss. Cummings advises families who are concerned about a loved one's cognition to seek out a neurologist who specializes in dementia.

A proper diagnostic workup includes cognition tests, blood tests, and brain scans. Testing could go as far as the patient spending a day with a neuropsychologist.

When you do receive the diagnosis of dementia, Cummings says, it's important to take an active role in planning treatment and care.

“In the case of dementia it's very, very common that families say, 'Mama has dementia' and go home,” she said.

She said you should ask the same questions you would as if you had received a diagnosis of cancer.

Cummings suggests asking, “Who is going to help me plan out my method of attack against this disease process? Where will I get my medication? How am I going to handle this disease from now on?”

Although most types of dementia are progressive and irreversible, medications and cognitive exercises can make modest improvements in quality of life and care.

Types of dementia

Alzheimer's disease is the most common cause of dementia. Over 5.4 million Americans are living with dementia, according to the Alzheimer's Association.

That number is expected to increase exponentially, as the baby boomer generation ages. By 2050, it's estimated that 16 million Americans will have the disease.

Vascular dementia can come about as the result of multiple strokes, or disease that causes reduced blood flow to the brain. It's the second most common form of dementia.

Dementia with Lewy bodies (DLB) affects 1.3 million people in the U.S. It's related to Alzheimer's and Parkinson’s diseases, and characterized by abnormal proteins that develop within nerve cells called Lewy bodies.

Patients with Parkinson's disease may develop a form of dementia associated with the primary disease, which may prove more debilitating than the loss of motor skills. It's distinct from dementia with Lewy bodies.

Frontotemporal dementia affects the frontal lobes of the brain, which controls insight, reasoning, and social behaviors. One of the symptoms is a patient behaving in strange or out-of-character ways.

There are many more less common forms of dementia.

Knowing which dementia is affecting your loved one may determine your course of action in treating and caring for the disease, said Cummings.

Caregiver preparedness

Over 15 million people are considered caregivers for Alzheimer's alone. Caregiving can take a powerful physical, emotional and financial toll on family members.

“As human beings, we all do better when the crisis is coming if we understand the crisis and can prepare for it. We don't feel such a loss of control,” Cummings told daily Rx. “For families, understanding how their person is going to decline, I think, is critical. It leaves them in better physical, mental, and emotional shape at the end.”

She said that when families receive a diagnosis, they need to get prepared financially and know what their options are for support. Long-term memory care can be expensive, especially in the final stages of the disease when the patient requires around-the-clock monitoring and care.

She warns that caregivers can easily let themselves become so defined by caregiving that they get isolated, and cut off from their social networks.

Cummings strongly recommended that family members get connected to support groups, in order to receive the emotional care they need, and to create relationships with people going through the same experience.

There are many resources for people dealing with dementia, especially those with Alzheimer's. The first step is getting the information, Cummings said.

Review Date: 
January 31, 2012
Dementia Guide