Caring for a Person With Dementia

Dementia is a progressive loss of mental function due to certain diseases that affect the brain.

The losses are substantial. Over time, all types of dementia will lead to loss of memory, loss of reasoning and judgment, personality and behavioral changes, physical decline, and death.

But the course dementia takes can vary widely from person to person. It's influenced by many factors, including age and other conditions a person may have.

Sixty to 80 percent of U.S. dementia cases are caused by Alzheimer's disease. That's about 5.3 million people. The next most common dementias are vascular dementia, or tiny strokes in the brain, and Lewy Body dementia where alpha-synuclein protein lodges in certain regions of the brain.

The Three Stages of Dementia

After dementia is diagnosed, it usually follows a three-stage, downward trajectory.

In mild dementia, people may have difficulty remembering words and names, learning and remembering new information, and planning and managing complicated activities such as driving. They may also be experiencing sadness, anxiety, loss of interest in once pleasurable activities, and other symptoms of major depression.

In moderate dementia, judgment, physical function, and sensory processing are typically affected. This can cause problems with personal hygiene, inappropriate language, and wandering. This stage -- when your loved one is able to get around but has poor judgment -- is physically and emotionally challenging for the caregiver.

"My dad went from being Mr. Nice Guy to Mr. Obsessed. And things were always worse at night. He was energized and I was physically exhausted," says Robert Matsuda, a Los Angeles musician who worked full-time and cared for his father with Alzheimer's Disease for three years before recently placing him in a nursing home.

As a patient moves from mild to moderate dementia, some home modifications that may include removal of throw rugs, installation of locks and safety latches, and the addition of a commode in the bedroom often need to be made.

This is also the time when the palliative care team should be brought in to support the caregiver and help manage behaviors.

"I was anxious at first, but when they showed me how to manage my dad's behaviors and started bringing services into our home -- the nurse, the home health aide -- it was like the cavalry arrived," says Matsuda.

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In severe dementia, there may be extensive memory loss, limited or no mobility, difficulty swallowing, and bowel and bladder control issues. There may be a need for around-the-clock care. At this stage, the patient may have difficulty recognizing family members and caregivers.

Caregivers experiencing high stress levels during the moderate and severe stages may also be dealing with anticipatory grief associated with a feeling of impending loss of their loved one. Talking with the palliative care team's social worker can help caregivers understand these feelings and develop strategies for dealing with them.

Experts warn that caregivers who do not get such help may be more likely to experience a prolonged, complicated period of grief after their loved one dies.

Resources for Dementia Caregivers

There are many resources available to caregivers of a person diagnosed with dementia. The Alzheimer's Association (800-272-3900) will refer you to your local chapter for information, resources, and their hands-on caregiver training workshops.

"I've been to our local association's caregiver workshops and to their monthly support groups, too. Every time, when I leave, I've learned something -- techniques, strategies, things like that -- and that I'm not alone in this," says George Robby who is caring for his wife with Alzheimer's in their Chagrin Falls, Ohio, home.

Other good sources of information, assistance, and support include your local Area Agency on Aging (800-677-1116) and, for those caring for veterans, the Veterans Administration's Caregiver Support Program (855-260-3274). Some senior care companies, including Silverado Senior Living and Home Instead Senior Care, offer programs and skill-building workshops at their facilities.

WebMD Medical Reference Reviewed by Smitha Bhandari, MD on August 17, 2017

Sources

SOURCES:

Ursula Braun, MD, MPH, director, inpatient palliative care unit, Michael E. DeBakey Veterans Administration Medical Center, Houston.

Karen Hirschman, PhD, professor of social work, University of Pennsylvania School of Nursing

Jeremy M. Hirst, MD, assistant director of psychiatry programs, Institute of Palliative Medicine at San Diego Hospice, San Diego, Calif.

Greg Sachs, MD, chief of geriatrics, Indiana School of Medicine and lead researcher, IU Center for Aging Research, Indianapolis

Robert Matsuda, Los Angeles

George Roby, Chagrin Fall, Ohio

AARP Caregiver Resource Center

Alzheimer's Association.

National Institute on Aging: "Caregiver Guide."

Family Caregiver Alliance: "Caregiver's Guide to Understanding Dementia Behaviors."

Alzheimer's Association, Caregivers Notebook, Meredith Corporation, 2010.

Broyles, F. Coach Broyles' Playbook for Alzheimer's Caregivers: A practical guide.

Glenner, J.A., When Your Loved One Has Dementia: A simple guide for caregivers, Johns Hopkins University Press,  2005.

Gruetzner, H., Alzheimer's: A caregiver's guide and sourcebook, 3rd edition, John Wiley & Sons, Inc., 2001.

Legacy Caregiver Services, The Caregiver Helpbook: Powerful Tools for Caregivers, 2nd Edition, Legacy Health System, 2006.

Mace, N. L. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th edition, Johns Hopkins University Press, 2006.

Meyer, M. M.The Comfort of Home for Alzheimer's Disease,  CareTrust Publications, 2007.

Marcell, J. Elder Rage -- or -- Take My Father .. Please!, Impressive Press, 2001.

 

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