Rule number one: watch for gradual changes in this person’s ability to communicate, because dementia is a progressive disease.
Usually dementia affects the short-term memory first. And I am not referring to forgetting the title of a book or the name of the nurse at the doctor’s office, but memory loss that is consistent and begins to affect daily functioning.
- With my mother I noticed changes during phone calls. I would tell her exactly when I was coming for a visit, and during the preceding week she would ask me repeatedly the arrival day. When I told her again, I asked her to write it down, but she forgot before the phone call ended. For a while I mailed an itinerary, but as the disease progressed that didn’t help.
- Then I noticed that during our afternoon phone calls she would tell me about a friend’s visit, say around 4:00 pm and then at 4:05 she would start to repeat the exact same message. Sometimes I listened all the way through and sometimes I tried to gently move the conversation forward. It’s not a good idea to say, “You already told me that,” though I know I did in frustration.
- When I would visit her, I found many scraps of paper with phrases and words scribbled on them—her attempts to remember things.
Takeaway: be patient and kind.
The loss of long-term memory usually comes later on, but when it does you will find that this makes conversation with your parent or aunt or friend extremely difficult.
- Conversation relies on memory. It is a web of shared experience, common background and people. If your loved one can only remember what is right in front of her (you in your red sweater with that big black purse) there is no extended conversation. Or her end of it is a repetition of the same question over and over and you providing the same answer. Q Is that a new sweater? A. Yes, I just bought it. Q:When are you leaving? A:I’ll be here for three days.
- The loss of long-term memory occurs over time. It waxes and wanes. Often people with dementia can be more alert in the morning and yet very challenged at the end of the day. For about two years my mother and I could overcome the short-term memory loss and move right to the “old days.” I did much of the talking, but we could sit for an hour and remember my childhood, her parenting, and often memories of people in our extended family. Yes, I often had to coach her, “Mom, I’m talking about Tom. He’s Imelda’s son, you remember Tom.” And she would.
- Then came a day when I was visiting and she did not remember a major event in her life—my father’s death. This was startling and frightening.
Takeaway: be prepared. Know that someday this person you love might not even know you.
Rule number two: be creative, positive and upbeat when communicating.
Each dementia patient is different—some are sweet and docile, some are angry and irritated, some are almost catatonic. And it can change from day to day, even hour to hour—rollercoaster style. Medications are used to affect behavior and help a person cope with dementia. Here are a few tips that might facilitate a visit or daily encounters:
- Bring her something. A small gift is always appreciated and allows for conversation about that item—warm socks, skin lotions, of course candy (elder folks love sweets as their taste buds are failing too). A flower from your garden, a magazine filled with bright pictures or a prayer card.
- Bring props. My mother has photo albums in her room, but I now bring photos of my travels, grandchildren, even my home. We can both sit and look at the photo and talk about what we see in the photo (it replaces the red sweater and the black purse) and this can sometimes make for a happy time for at least an hour. But remember that dementia patients are often confused and if your loved one incorrectly identifies people in the photos, you might just have to let it go. You don’t want to increase confusion.
- Bring people. The last time I visited my mother my eldest daughter was there with her boyfriend. This was great. It allowed my mother to focus on them and ask them the questions she always asks me. Later, she got very quiet as the rest of us talked—and I don’t really know if she could follow the conversation. But I know she was happy just being with us.
- Create an experience; change the environment. Sharing a meal or taking your loved one outside in his or her wheelchair for a walk works well during a visit. There’s a café in my mother’s elder home and sitting there helps stimulate her. She talks about the decorations on the wall and what ice cream she wants.
- Finally, a few very basic hints: it always helps if your loved one has hearing aids in and glasses on. Speak slowly and distinctly. Always avoid frustration and anger and use words that he or she will understand. Overall, show this person respect. That will make your visit pleasant and provide the person with a positive, though fleeting, experience.
Takeaway: the present is precious—it’s all dementia patients have. If you prepare yourself for a meaningful visit with this person, you will be rewarded. For as dementia moves one toward the end of life, he or she truly lives in the present. There is little memory of the past and certainly none of what was eaten for breakfast or what’s in the morning paper. Life is an in-the-moment Zen experience. Help your loved one experience it.