Living With Someone Who Has Dementia? A Few Words of Advice

By Robert Irving Miller, June 8, 2020

Having a family member with dementia is usually very difficult and challenging. We often work with families of people with dementia, to assist with their legal needs. Over time, I have learned that there are ways to deal with the situation that might help, even if they do not necessarily make it any easier. Here are some of the things that I have learned over the years:

A new “behavior problem” in an elderly person is often actually a sign of a physical illness, or possibly a reaction to a medication. If an elderly person’s behavior changes significantly, you should bring the person to see a doctor. Examples of behavioral changes include increased anger, increased falls, yelling, lethargy, loss of appetite and aggressiveness. There are plenty of other ways in which behavior can change as well.

Often a person with dementia follows another person around everywhere they go. This can be extremely frustrating for the person being followed. It is not unusual behavior in dementia, because the individual is trying to understand what is happening and wants some assistance to know what to do next.

People fall. Elderly people fall more and are at greater risk of injury. However, keeping someone mobile is usually better than them being confined to a chair or a bed all day. Immobility may cause a rapid deterioration in a person’s condition and place her or him at risk of serious medical complications. It seems important to maintain mobility, even if there is a risk of a fall.

One of the best things a family living with a relative suffering from dementia can do is to become educated about how to communicate with and respond to that person. The federal Centers for Medicare and Medicaid Services (CMS) has a training program for nursing homes called “Hand in Hand Dementia Training.” If you search on the Internet for CMS Hand in Hand program, it will lead you to videos of the various training modules for the program. I have taken some of that training and find it very useful. Someone who is caring for a family member or living with a family member or friend who has dementia can benefit greatly from the Hand in Hand training. Of course, the person with dementia also benefits because he or she is assisted by more knowledgeable people. If you have a relative in a nursing home, it is also good to take the Hand in Hand training, to understand the disease process and reduce some of your stress as a result.

If the person with dementia is living at home or with relatives, there is always the possibility that he or she may wander off and become lost. Sometimes wandering cannot be predicted. It is important to anticipate that such wandering may occur. Experts advise having a “Safe Return Program” that includes notifying neighbors and nearby businesses about the possibility that the person will need assistance if he or she is seen walking around. Some people keep a log, noting the person’s clothing each day. Therefore, the police and neighbors can be told to be on the lookout for a person wearing a particular color shirt, a specified color pair of pants, and a certain color or style jacket. It is also useful to have printed photographs of the individual to hand out in the neighborhood in case the person with dementia disappears and later goes to a neighbor’s home or a nearby store. Showing someone the photo on your phone is okay, but there may be someone else on duty at the store, or someone else may be answering the door at a residence hours later, when the wandering person shows up. Of course, the paper with the photograph on it can also have the family telephone number and contact information, so that someone can come back and retrieve the wandering relative. However you do it, it is important to have a response plan for the possibility that your relative with dementia may disappear.

This blog is not intended to be specific legal or nursing advice for any particular situation. We strongly encourage you to communicate with your family physician and to develop a relationship with your county office for the aging, where you can obtain additional information about how to cope with the stress and difficulty of having someone in the household with dementia.

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