If you are a caregiver for a senior loved one living with dementia, you have likely witnessed their progressive loss of memory and coherent thought, changes in their personality, and their diminished abilities to navigate life. So what do you do to best care for your senior?
“You meet them where they are,” says Grace LeRoux, Staff Development Coordinator at Bethesda. As best you can, she says, you enter their life where thoughts, emotions, words, and memories may not seem ordered by reality but make sense to the person with dementia. Because dementia can take so many twists and turns in the course of a day, what you do and don’t do will require, in Grace’s words, “going with the flow.”
In the process, you may discover a person who still has ideas and interests, who loves you even though he or she may not be able to recall your name, and who still retains the desire to express thoughts and reach out to others.
Let’s look at three challenges dementia may present, and how to best care for your loved one through these challenges.
Challenges in Caring for a Senior with Dementia
Perhaps the most shocking symptom of dementia is aggressive and abusive behavior. It may appear suddenly as a physical assault or abusive language. Words you have never heard your senior loved one speak may come pouring out.
Do understand that aggression may be caused by physical pain. “That is a main source of aggression,” Grace says. “If they have lost the ability to express what they feel, the violence and verbal abuse communicate it for them. Also, the overall frustration with dementia, such as forgetting the function of a common item like a spoon, may trigger aggression.”
Don’t react with anger, it will make things worse. Tell the senior you understand that he or she is upset.
Do remain calm. Speak in gentle tones, but if you must defend yourself, another person in the room, or the loved one from physical harm, do so.
Do reassure your senior. If he or she is frustrated and depressed about not understanding the function or name of an object, tell them you’re here to help them.
Do use humor, if appropriate, to deflate their anger for things like getting your name wrong or not knowing what day it is. “If they realize they got your name wrong, you could smile and say, ‘I’ve been called a lot worse.’ If they don’t know what day it is, just make a joke: ‘I hope it’s Saturday,’” Grace says.
Grace cautions that you need to know if humor has a positive effect on the senior. The idea is to defuse the situation, not demean the senior.
People with dementia sometimes believe that a day from the past is the current day. They may ask to see people no longer living, mistake a daughter for their mother or ask to be taken home even though they are living in their home.
According to Grace, people in the early stages of dementia may appreciate a mild correction if they are simply off about what day of the week it is. In the latter stages of dementia, Grace recommends meeting them where they are in their reality.
Do try to figure out why someone asks to go home even when they are home. “Think about the meaning the word ‘home’ provides,” Grace says. “Are they looking for comfort? Familiarity? A place to lay down and rest?”
Don’t overcorrect a senior with dementia. “It’s best to say whatever makes them feel safest,” Grace says. “If they think their parents are still alive, let them talk about it. Even if what they say is not grounded in our truth, it is grounded in their truth.”
The well-intentioned desire of a caregiver to keep a loved one oriented by constant reality reminders becomes exhausting and frustrating for the caregiver and the senior. Continually saying. “Don’t you remember, we talked about this several times?” The simple answer is they wouldn’t keep asking you if they remembered. Just give your senior the answer that seems to satisfy them. “You can’t reverse or correct the damage caused by dementia,” Grace says.
Do keep your conversations with your senior simple in the sense that you don’t use complex sentences with several options. If you ask a senior with dementia if they want coffee, tea, milk, or water in a single sentence that will be difficult to process. But never use baby talk. “Remember they are still adults,” Grace says.
Don’t lose patience when talking with your senior loved one. “It may take several seconds or upwards of a minute for them to process the answer to a question you’ve asked, Grace says. “If you repeat the question before they have answered, the response they were creating will lose its place in line, and the process has to start all over again.”
In the latter stages of dementia, conversation may almost cease, but your presence still has meaning. You don’t have to fill up the quiet moments with words. In some instances, your senior loved one may only respond with sounds. According to Grace, even these can be partially interpreted by their inflection and tone, as well as the body language used to express them.
3. Poor Judgement
Poor judgement in a senior with dementia can begin with something as small as missing a bill payment, getting lost while driving in an area they should be familiar with, or, more dangerously, losing the ability to discern speed and distance while driving.
In the latter stages of dementia, seniors might accuse someone of stealing objects from them simply because the item has gone missing.
“Accusations are common because they are trying to cope with this missing piece of time in their mind,” Grace says. “It makes sense to them that somebody took their shoes because they can’t remember what they did with them.”
Don’t directly refute the accusation. “Instead, tell them that what they are saying could be true,” Grace says. “But then suggest looking for the shoes once again just to make sure. The belief that someone is stealing also compounds the problem when seniors begin hiding objects to keep them from being stolen, and then have no memory of where they are hidden,” she says.
Do encourage your senior to do all he or she can do and make decisions they are capable of making. “Let them control what they can control,” says Grace. “Encourage them to pursue the hobbies and tasks they have always loved.”
Don’t be concerned about the quality of the task or craft produced. It’s the journey, not the results.
Do give them a task or activity that is appropriate to their physical and cognitive ability, and not so simple as to be insulting or boring.
When You are at Your Limit
At some point, you may reach the limit of your ability to provide the care mom or dad need. And that realization may be accompanied by guilt.
Don’t beat yourself up. There are memory support communities that provide medical care, 24-hour security, companionship, and daily activities for seniors living with dementia. And you can still be a part of their lives.
Do take comfort in the fact you did your best. You reached deeply into the mind and heart of someone you loved and touched something they may not have been able to express but felt at a different level. “Even when they don’t know your name, they still know warmth, they still know love when they feel it,” Grace says.
If you become unable to care for your loved one living with dementia, it may be time to consider Memory Support at an Assisted Living community. Bethesda’s memory care communities across the St. Louis area feature dedicated Memory Support neighborhoods to keep your senior loved one safe. Schedule a tour at a community near you to learn more.