Caregiving Corner

My Loved One Has Dementia. What Do I Say or Do?

Dementia is a subject discussed in our homes and hospitals repeatedly and increasingly. This week we offer ways to communicate better with your loved one who is coping with memory loss or who has been specifically diagnosed with some form of dementia. 

The solution is not difficult, yet requires thought, preparation and compassion. 

To put it very simply, “we want our loved ones to smile,” says Susan I. Wranik, Speech-Language Pathologist. Smiling indicates some level of contentment. It’s a good signal to us as we communicate with our loved ones diagnosed with dementia.

“Every action has a positive or negative reaction,” adds Wranik. “You walk in with a smile. You look for a smile. You engage them and see what makes them happy. You know they are happy when they are smiling, and they are calm.” 


HINTS FOR A GOOD VISIT

People experiencing memory loss often have a limited conception of time. “Don’t guilt trip yourself if you cannot visit as planned,” says Wranik, who suggests that when planning visits, consider a timeframe and then double it. “Start a little early so you can stop for a few minutes, collect yourself, and prepare yourself for your time together.”

“Position yourself at eye level. Pull up a chair and sit with them, make eye contact, and smile. 

“Give information, do not seek it.” Wranik cautions against asking the question “Do you remember?” Communicating in the presence of dementia is about feelings, not facts. Pointing to a photograph, you can say things like, “Here is Jane, our neighbor. We went to elementary school together.”

Structure questions in a yes or no way: “Have you had a nice day?” not “What did you do today?” “If they understand your question, but cannot form an answer, they may feel challenged or frustrated, and you don’t want to put that burden on them.”

Sensory stimulation is beneficial. Bring lotions, creams or colognes, so they can enjoy a pleasing and perhaps familiar fragrance. Touch or massage their hands or arms. A picture of themselves or familiar people can evoke a smile. If they are animal lovers, bring a friendly animal to pet, or consider a robotic companion pet. A smile or pleasant look in response indicates we have made a positive connection.     


BEYOND VISITS — WHAT TO EXPECT

Besides developing a plan for pleasant visits, it is helpful to be able to recognize the progressive stages of dementia. 

People often say things like, “Where did I put my keys?” “Where did I put my phone?” “I can’t remember the name.” 

“The good news is we have a name for that,” says Wranik. “It’s called ‘normal aging!’ This is not dementia.” So, we can relax and take a deep breath on that. However, we may notice that they are getting to the point where they struggle with verbal expression and might not be able to complete their thoughts because they can’t find the words. 

Over time they may forget to take actions more consequential. They may not recall where the car is parked or they may forget to pay bills. Their behavior becomes more noticeable to others and they may begin to withdraw. At this point, they should not be alone.

Later we hear repetitive speech. “They are not seeking information; they are trying to maintain a conversational dialogue,” Wranik says. “The rule of thumb is to answer the question, over and over if necessary – with patience, with kindness, and yes, with a smile.”

Have you experienced your loved one making repetitive phone calls to you?

Answer the phone or do not answer the phone. You choose. If you choose to answer, be enthusiastic and leave them in a good frame of mind. Don’t reprimand them. If you feel irritated when you see their name pop up, again, on your caller ID, just don’t answer the phone.

Incontinence is common in the later stages.

Finally, as the disease gets closer to its final stages, our loved ones eat and drink very little.

Do not panic. Wranik refers to this as transitioning or cycling down. “They are not in pain, because when they don’t drink as much, the body becomes dehydrated and moves into a euphoric state, like a state of delirium,” Wranik explains. “There is no pain.”

Hospice professionals can be tremendously helpful. Do not delay having a conversation with hospice professionals. In more recent years we have also begun to learn about the importance of opening a discussion on palliative care at the first sign of dementia. The earlier the better for your loved one and for you. 

Meanwhile, for those visits, remember, walk in with a smile, plan plenty of time and help your loved one enjoy the time you have together.