As dementia progresses, the care required becomes more complex and demanding. As a dementia caregiver, you might find yourself in more and more difficult situations, which you don’t necessarily feel ready or equipped to handle. These can be anything from hallucinations to mood swings to struggling to help your loved one to eat or move around.
Caring for a dementia patient certainly comes with its own unique set of challenges. Because dementia is a progressive disease, the type of care needed progresses with it, making for many unpredictable days and consistent learning and re-learning. Strategies of care that might have been affective in the early stages can stop working altogether. You’ll find yourself getting more creative, and possibly more desperate, as time goes on.
We understand that the middle and late stages of dementia require a lot from a caregiver – and that you might feel stuck in a never-ending learning curve. This care is intensive and around-the-clock. It demands a lot from us, and you might not always be sure that you’re handling everything right or might be at a loss of how to handle some situations altogether.
First of all, I want you to appreciate yourself for all that you’re already doing. No one goes into dementia caregiving with a step-by-step pamphlet to help them through every situation. You learn as you go, and this requires a ton of trial and error, infinite patience, and perseverance.
As long as you are acting in love and doing your best, you are not doing anything wrong (even when it feels like you might be). Still, I know that a little guidance and wisdom can help you to feel more supported, confident, and prepared. It never hurts to get some help, right?
On today’s episode of All Home Care Matters, we’re going to discuss ways to handle the most difficult situations with a dementia patient. These strategies can help to make tough situations a little bit easier, and to calm things down faster and more efficiently when necessary. These are proven strategies that have helped caregivers to better understand what their loved one is going through – so they can know how to handle it.
If your loved one is in the middle stages of dementia, you’ll notice drastic shifts in their behavior and function. Your loved one might be struggling more than ever to communicate or gather their thoughts. They might struggle to eat, dress, or do other activities of daily living.
Remember that while this is a huge transition for you, it’s an even bigger transition for your loved one. Life as they knew it no longer makes sense. They can no longer perform tasks that they used to do with ease. Even thinking has become a struggle.
Because of this, you’ll notice that your loved one’s mood and behaviors have changed. They might become more irritable, frustrated, or downright angry. They could refuse to eat, bathe, or get dressed. They could refuse any help whatsoever. They are trying to make sense of a warped reality and accept losing their independence – this is far from easy and is bound to lead to mood changes.
Of course, these mood changes do not make life easier for the caregiver. Your responsibility is increasing and at the same time, your loved one is making it harder for you to do your job. You may find yourself losing patience pretty easily, and possibly even snapping or crying in the middle of the day.
As the disease progresses, it’s more important than ever to find time for yourself, also. Listen to our episode on Caring for the Caregiver to learn more about destressing and self-care advice.
Now, when your loved one is struggling to communicate, you might struggle to know how to handle it. Maybe they aren’t responding to you anymore, so you don’t know how they feel about a certain situation, or maybe they try to speak to you, and you have trouble following their train of thought. What should you do?
You can assist with communication by speaking in a direct, gentle tone, and making eye contact. Use body language to further emphasize what you are saying. This can help your loved one to understand what you are saying, at least on some level.
At the same time, make sure to give your loved one time to respond – even if it’s a long time. It might take your loved one quite a while to put her thoughts together, but that doesn’t mean she isn’t trying. Don’t interrupt her when she does begin to speak and listen patiently while she gets the words out.
Make sure that when you communicate, it’s in a place with minimal background noise or distraction. Offer reassurance when your loved one is struggling – this can encourage them to keep going.
Don’t overdo the questions. Only ask one question at a time, and make sure the questions are yes or no. For example, instead of saying “do you want to wear the green shirt or the blue shirt?” ask, “do you want to wear the blue shirt?”
One of the biggest communications struggles a person might have at this time comes with your loved one’s lack of a filter. You might notice that as time goes on and the dementia progresses, your loved one is becoming increasingly brash with their words. They might say hurtful or embarrassing things, in public or in private.
The general rule is to let it be. If your loved one says something that you disagree with, don’t argue with them. Just move on to something else. I know this is easier said than done, but when you argue, you risk exacerbating the situation. This might lead to a full-on meltdown that is far more difficult to manage.
If your loved one says something inappropriate or offensive in public, deter from the situation. Bring your loved one’s attention to something else as quickly – and as calmly – as possible. For instance, if you’re at a coffee shop, you can have your loved one pick from the pastry situation.
If you’re at the grocery store, you can ask them if they would like a certain type of produce. It doesn’t matter what you say, just quickly and calmly change the subject. The best thing you can do in these situations is turn your loved one’s attention onto another subject matter.
If your loved one is experiencing a hallucination, you want to approach this in much the same way. You may feel tempted to shut down the hallucination, but this can actually lead to increased confusion and a worsened mood – and the hallucination can become more severe.
Instead of shutting it down, validate it, make it positive, then change the subject. For example, if your loved one says that there’s a stranger in the home, tell them “yes, that’s a nice stranger. He’s a friend. Do you want spaghetti for dinner?”
Again, bringing their attention somewhere else is usually enough to end the hallucination altogether. The last thing you want to do during a hallucination is deny it or make a huge deal out of it, because this can lead to a severe mood swing that can be almost impossible to manage or calm.
In general in any mood-heavy situation with a dementia patient, you don’t want to be rational or logical. While it might be tempting to calmly explain a reality to a person who is hallucinating or speaking out of term, this will not be affective with a dementia patient.
You see, dementia patients cannot think rationally at all. They don’t understand that what they’re saying is inappropriate, and they don’t understand that what they’re hallucinating is not real. If you try to change the way they perceive the world and themselves, they will only get sad and frustrated. That’s why validation, followed by distraction, is really the best method for these types of situations.
Along similar lines, if your loved one forgets that their parent is deceased, or that they’re divorced, or any other major life event – there is no need to remind them. Reminding them of their loss or heartbreak will recreate unnecessary pain and heartache. If your loved one is happily carrying on about visiting with their deceased mother later, instead of shutting this down, ask questions. Have your loved one describe the person they lost. This can calm them down.
Now, some families struggle with knowing what to do when their loved one asks to go home, if they are living in a nursing home or other facility. Rather than telling them that they won’t be returning home, redirect the conversation. Ask your loved one to tell you what they remember about home, or to describe home. This distracts from the situation while helping your loved one to engage in happy memories.
If your loved one wanders away or gets themselves in a dangerous situation, refrain from telling them never to do it again. This simply will not be affective. People in the mid and late stages of the disease will not remember to do it again, so it’s not worth telling them not to.
Instead, take action to prevent it happening in the future. Make sure the doors are locked. Get an automatic tea kettle that won’t light on fire if it’s left on. Listen to our episode on home safety tips to learn more about how you can prevent dangerous situations from happening.
One of the most difficult situation caregivers face with dementia patients is aggression. This aggression can sometimes become violent. Even though it is incredibly hard to do, it is important that caregivers handle these situations in a calm and patient matter. Responding to anger with anger will only make it worse.
Instead of responding with anger, try to understand the cause of the anger. Has your loved one recently switched medication? Have they eaten today? Could it be sundown syndrome? If you know the cause, you might able to step in and make a change.
Secondly, respond to your loved one with empathy, patience, and support. Try to distract them from their anger by introducing another activity or conversation. It might help to take your loved one into another room. Sometimes a change in surroundings is enough to change a train of thought, and combat anger.
If nothing else works, you can simply give your loved one space until they calm down. Make sure that they are safe and keep watch over them, but don’t involve yourself any further. They will calm down eventually – even if it’s in the form of falling asleep from exhaustion.
Many dementia patients lose the ability to distinguish between reality and fantasy. Because of this, they may become increasingly paranoid, and make huge statements that are completely false (like my daughter doesn’t love me, or my son is out to get me).
These delusions are difficult to witness. When they happen, it’s important to remember that it’s the disease speaking, not your loved one. You must separate the behavior from the person, or you will suffer.
Don’t tell your parent that they’re wrong, argue with them, or try to disprove what they are saying. This will only cause greater distress and agony for everyone involved. Again, you can deflect from the situation and turn your loved one’s attention somewhere else. Otherwise, you can step out and give your loved one space until they forget about it.
Difficult dementia behaviors can be overwhelming for caregivers to handle – but if you approach everything with a sense of calm and patience (even if you have to fake it), you’ll find that these situations are a little bit more manageable.
We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode and please make sure to share it with them.
Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Join us next time on All Home Care Matters where we will be welcome two very special guest, Dr. Lisa Taylor and Dr. Kristen Dillon. They are Geropsychologists who specialize in serving the senior population as well as the families of seniors. This is an interview you won’t want to miss if you are caring for a senior loved one.
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