If you’re a caregiver to someone with dementia or another form of memory loss, you understand that it’s necessary to learn new ways of providing assistance and support to your loved one. You’re prepared for that, and you quickly adapt as your loved one’s needs change. But all of a sudden, he or she is refusing your help. They’re acting stubborn and making it incredibly difficult to help, if not downright impossible.
When someone with dementia refuses to do something, such as changing their clothes, brushing their teeth or anything else, this is called “resistance” or “refusal.” This can quickly derail a caregiver’s best laid plans and cause great tension and strain to the relationship.
“Surprisingly, resistance can be one of the behaviors that’s most shocking to caregivers because it seems so counter to what we would expect,” says Amanda Jillson, Executive Director at Bridges® by EPOCH at Nashua, a memory care assisted living community in Nashua, NH. “The caregiver can’t understand why their loved one is refusing assistance or not wanting to do things they’ve happily done in the past. However, as with any other issue related to dementia, it’s important to look past the refusal and instead focus on what the person is really trying to tell us.”
By understanding why the person is refusing and what is causing the resistance, she says, caregivers can more easily get to the root of the issue and find alternate ways to get their loved ones to cooperate.
The Reasons for Resistance
A stubborn dementia patient and a tantrum-throwing toddler have a lot in common when it comes to resistance and refusal. When individuals with dementia are refusing to do something, there’s always a reason why, whether it’s due to fear, embarrassment, guilt, stubbornness or a variety of other feelings. Here are just a few of the reasons why individuals with dementia become resistant:
- The request is confusing – Your loved one doesn’t understand what you’re asking or why you’re asking. Dementia can often make it difficult to think logically, and can also make it hard to interpret even the most simple-sounding requests.
- Your request changes their routine or their preferences – Your loved one is being asked to do something that doesn’t fit with what they want to do. For example, your loved one may resist eating their peas because they don’t enjoy the texture, or they refuse to go to bed at 9 p.m. because they’re used to staying up late.
- Your loved one feels like they’re losing control – Losing their independence is one of the biggest fears for seniors. Being told what to do could be making them feel out of control. By refusing to cooperate, your loved one is simply trying to retain as much control as possible.
- They’re misinterpreting the environment or situation – Dementia messes with our senses and perceptions, making it easy to become overwhelmed by sensory information. Your loved one may think the shiny floor is covered with water, for example, or they may think their reflection in the mirror is a stranger.
- He or she is depressed – Depression makes it difficult for anyone to accomplish tasks or feel excited, not just dementia patients. If your loved one’s mental health is low, they may refuse to do things just because they’re feeling miserable.
- Your loved one doesn’t trust you – Delusions and suspicion are common symptoms of dementias like Alzheimer’s disease. If your loved one refuses to do something you’re asking them to do, it could be because they don’t recognize you and are fearful.
Whatever the reason for resistance, it’s possible that your loved one won’t be able to explain why they’re refusing (again, much like a temper-tantruming toddler). While you, as a caregiver, want to honor their preferences as much as possible, you also want to make sure they’re not harming themselves. So how can you get them to listen to you, follow your instructions and reduce their resistance? In most cases, you’ll need to be patient, open-minded and more than a little creative when it comes to problem-solving.
If the refusal is routine-driven…
That’s actually a positive sign! It means your loved one still has a sense of autonomy and personal identity. You may need to look at the dementia patient’s previous life to gain some perspective. For example, if your dad always worked nights, it probably feels more natural for him to be active at that time.
If the refusal is about personal care…
Be sensitive, because this is a very personal and intimate activity and it’s embarrassing and hard when a person needs help. Does your mom prefer taking a bath to a shower? Or has she always brushed her teeth before washing her face? It’s important to maintain a system that’s as close to a recognizable routine as possible.
If the refusal revolves around food…
It could be because your loved one is having difficulty using silverware, recognizing what’s on their plate or doesn’t like the texture of what you’ve prepared.
If the refusal is about medication management…
This is tough, because it’s essential that dementia patients take their prescribed medication. However, refusal may be because there are unpleasant side effects, or is making them feel ill. Give a clear explanation as to why they need their medication every time it’s offered, and be sure to visit their doctor when necessary.
Tips for Caregivers
- Stay positive and remain calm. Individuals with dementia can pick up on your body language and nonverbal communication, and if you’re stressed, they become stressed. Stay calm, explain things clearly and remind your loved one of the benefits of what you’re asking.
- Be patient. Your loved one may be confused about what you’ve asked, meaning you may have to repeat yourself several times or speak more slowly. Keep explanations simple and short, which are easier for dementia patients to understand.
- Show respect. Individuals with dementia deserve respect and dignity as much as we all do. By treating them kindly and respecting who they are as people, your loved one will be more likely to cooperate with you.
- Flexibility is key – Sometimes your request is just coming at a bad time. Try asking again later, and your loved one may be more willing.
- Ask forgiveness instead of begging permission – Unfortunately, you may just have to take Dad to the doctor even if he doesn’t want to go. In that case, remain as calm and patient as possible and go about your business. Oftentimes, once you put things into action, your loved one will go along.
Always remember that, like all of us, people with dementia have the right to say “no.” So if your loved one is refusing you, ask yourself three things: What will happen if I don’t get cooperation at this moment? Will my loved one be harmed by refusing? Will others be at risk because of refusal? These questions may allow you to reassess the situation and find alternate solutions to turn that “no” into a “yes.”
If you would like more information about sharing your dementia diagnosis with loved ones, contact us at 603.594.0581.
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