Alzheimer’s disease and other dementias affect the brain in different ways. Memory loss is one of the most well-known hallmarks of the disease, but if you speak to caregivers and professionals, you’ll soon hear about “challenging behaviors.”
“Challenging behaviors are symptoms that can appear suddenly or gradually, and often are completely out of character for what you know of your loved one,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “Because of the way these diseases affect the brain, your loved one may experience them all – or may not. Oftentimes, caregivers may have difficulty because the behaviors are so seemingly random or illogical, causing anxiety, frustration and stress.”
Andrea says knowing how to respond to these challenging behaviors will greatly help you be a better caregiver for your loved one, as well as help improve your quality of life. “It can be hard, especially when challenging behaviors are directed at you, but it’s important to remember that these are symptoms of a disease and not because of who your loved one is as a person,” she says.
In this four-part series, we’ll explore some of the more challenging behaviors you may have to address as a caregiver to someone with dementia. We’ll begin with one of the behaviors that tends to manifest itself in early dementia: hoarding.
There’s nothing wrong with saving for a rainy day. Perhaps your loved one has always had a bit of the “collector” mentality, reusing aluminum foil or washing out zippered plastic bags because they’re “still good.” Perhaps you’ve noticed that this behavior has increased as of late, and your mother or father is suddenly holding on to things more and more, even if they’re broken or unusable. This can be especially jarring if it’s a new behavior for your loved one.
Dementias such as Alzheimer’s can amplify aspects of your loved one’s personality, which is why “collectors” can quickly become “hoarders” due to the disease. The behavior can also be a result of increasing anxiety, causing your loved one to save items because they’re worried about getting older and “running out” of things.
There’s really no one reason as to why those with dementia become hoarders. For some, it’s because they need reassurance and to feel secure, like someone who collects tissues because they’re comforting and soft. Others may hold on to things because of their declining memory and a belief that they need those things in order to remember. It could also be due to confusion and inability to handle tasks (this is often seen with huge piles of mail or a stockpile of medications – the person simply doesn’t know how to sort out what’s important from what’s not).
This hoarding behavior goes beyond simple annoyance to caregivers – it can actually be hazardous and dangerous to both your loved one and yourself. If items are piled up around the house, it increases the chance that your loved one can trip or fall. Stockpiles of medication can lead to overdosing (or underdosing, which can be just as bad). Unopened mail can lead to utilities being shut off and other consequences of unpaid bills.
Caregivers, naturally, will try and explain the situation to their loved ones in order to help alleviate the behavior. However, because hoarding is a symptom rooted in the way the brain is changing, using logic to approach the situation doesn’t work. Fortunately, by understanding why your loved one is hoarding and getting to the root of the emotions, you can find ways to manage and mitigate the challenging behavior.
Tips for dealing with hoarding behaviors.
Be compassionate and kind.
Do your best to remain calm and keep a positive tone. It’s easy to get angry and frustrated at your loved one, but remind yourself: he or she isn’t doing this on purpose. It’s a symptom of their disease, and they can’t control it. Understand that this stems from a desire to regain some sort of control in their life, and that they’re seeking a form of comfort – no matter how annoying it may be.
If your loved one is hoarding little things that aren’t harmful to their health, you may just want to let it go. It’s possible that, as the disease progresses, the compulsion will go away. If necessary and if your loved one still has the ability to listen to reason, you can try and reason with them and work together to get rid of some of their stash. However, if your loved one is holding on to things that could be harmful, like spoiled food, you may have to take matters into your own hands and slowly get rid of things without attracting notice.
Provide options for stimulation and entertainment.
Compulsive habits like hoarding could be a sign that your loved one needs more activities and interesting things to do in order to redirect their attention. As you’re spending time with your loved one, make sure that he or she has something they can do like going through pictures, organizing a drawer, doing simple crafts and the like. This will draw their attention to something productive and reduce their focus on disruptive behaviors like collecting. Spending time together is also beneficial in many ways, not the least of which is creating memories that you can cherish as you progress along the dementia journey.
Create a place to store “special things.”
The idea of a memory box – a place where your loved one can keep the things they collect – is a technique that experts have shown to be successful. If your loved one enjoys collecting buttons, for example, you could get them a special box. This keeps everything in one place and also allows you to keep an eye on how their compulsion is progressing. While this approach can take up a lot of space depending on what your loved one is collecting, at least you’ll know everything is in one place (and you can quietly get rid of some if it is necessary).
Keep an eye on your loved one’s hiding places.
Your loved one will have specific places where they choose to squirrel things away. Discover where they are and check them on a regular basis. This can help you keep the stashes somewhat contained, but also help you find items that may be lost or misplaced (those with dementia will often hide possessions – theirs and other people’s – to keep them “safe”). One note of warning: many dementia patients choose to hide items in garbage bins, so check the trash before you throw anything out for good (or replace your bins with options that have secured lids).
Speak to their physician.
It’s always good to connect with your loved one’s doctors when challenging behaviors arise, especially if you feel the behavior is dangerous or interfering with their quality of life. It’s possible that your doctor can prescribe medications that can help quell anxiety or fear and thus keep the behaviors to a minimum.
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