Hoarding is a common yet often overlooked challenge in dementia care. As the disease progresses, many individuals with dementia may begin to collect, store, or hold onto items in ways that can overwhelm their caregivers. Understanding why this behavior occurs and knowing how to address it effectively can help ensure a safer and more comfortable environment for both the person with dementia and their loved ones. In this blog, we’ll explore practical strategies for addressing hoarding in dementia care and tips for caregivers on how to approach this sensitive topic with patience and empathy.

Understanding Hoarding in Dementia

What is Hoarding?

Hoarding is the excessive accumulation of items, often to the point where it disrupts a person’s living space. In dementia, hoarding can be driven by a variety of factors such as memory loss, confusion, anxiety, and a need for control. People with dementia may not remember that they’ve already kept certain items, or they might develop emotional attachments to objects that they associate with past memories.

Common Hoarding Triggers in Dementia:

• Memory loss: As memory fades, individuals may forget that they’ve already collected or stored items. They may feel the need to “keep everything” to ensure nothing is lost.
• Emotional attachment: Certain objects may have significant emotional value or reminders of the past, and the person with dementia may hoard these items to preserve these memories.
• Anxiety or fear: People with dementia may hoard as a response to anxiety, feeling a need to hold onto things they believe are essential or could be taken away from them.

Recognizing Hoarding Behaviors

Signs to Look For:

• Piling up items in unusual places: Hoarded items are often found in places like the kitchen, bedroom, or even bathrooms where they can cause clutter and safety hazards.
• Difficulty throwing things away: The person with dementia may become upset, resistant, or anxious at the thought of discarding items, even if they are no longer useful.
• Repeatedly collecting items: Whether it’s magazines, food, clothes, or personal items, hoarding can extend to various objects. This often becomes noticeable when things accumulate more than usual over time.

Example – Uncle Fred’s Tinkering: The WD-40 Collection

When we moved my Uncle Fred out of his house and into a senior community, we discovered a surprising collection in his garage—over 50 cans of WD-40. Uncle Fred had always loved tinkering, especially in his garage, where he spent hours fixing things, making small repairs, and keeping his tools in pristine condition. Menards was his favorite place to shop, and every time he visited, he’d buy another can of WD-40, thinking he might need it someday.

At first, we couldn’t understand why he had accumulated so many cans. But then we realized that, like many people with dementia, Uncle Fred’s decision-making process had become clouded by memory loss. He couldn’t remember the cans he had already bought, so each trip to Menards led him to pick up a new one. To him, it was a small way of holding onto the comfort of his familiar routine, but it had spiraled into a collection that was both overwhelming and unnecessary.

While sorting through his things, we gently helped him recognize the need to let go of some of the cans. We explained that there were plenty and that we would make sure he always had enough. Instead of focusing on the act of discarding, we framed it as an opportunity to simplify and organize his new space. This approach helped minimize his frustration; we worked through the clutter to create a safer, more manageable environment for him in the new place.

When Hoarding Becomes a Concern:

While hoarding can be relatively harmless, it can also present serious concerns if left unchecked:

• Safety risks: Piles of clutter can create tripping hazards, block pathways, and pose fire risks, particularly if items are piled near electrical outlets or appliances.
• Impact on living space: A home filled with unnecessary items can become cramped and difficult to navigate, affecting the person’s comfort and well-being.

Approaching the Subject of Hoarding

Addressing hoarding can be a delicate issue, especially since it often involves the emotional or psychological state of the person with dementia. Here are some tips for handling the situation:

Respecting Dignity:

The key to addressing hoarding behaviors is to maintain respect and dignity. Avoid shaming or criticizing the person with dementia for their actions. Hoarding is often beyond their control and a manifestation of the disease, not a deliberate choice. Approach the situation with compassion, understanding that they may feel insecure or frightened about parting with items.

Involving the Person with Dementia:

Where possible, involve your loved one in the process. Rather than immediately discarding items, offer them choices: “Would you like to keep this or would it be okay to donate it?” Donating the item to a meaningful  cause can help give them a Sense of Purpose and make parting with the items feel more positive. This approach helps preserve their sense of control, reducing anxiety and resistance.

Linda’s Story: Learning Patience with a Mother’s Collection

Linda had always known her mother, Alice, as a meticulous and organized woman. But when Alice was diagnosed with dementia, Linda began noticing changes. At first, it was just a few odd items being tucked away in drawers or closets. But soon, Alice started hoarding things—magazines, old receipts, clothing—sometimes in piles that made the house feel crowded and unsafe. Linda became frustrated, unsure of how to approach the situation.

One day, as Alice insisted on keeping a collection of worn-out shoes, Linda sat down beside her and gently asked, “Mom, do you remember these shoes? What do they mean to you?” Alice smiled, recalling that they were the shoes she wore on her honeymoon. Linda listened patiently, and together, they decided to place the shoes in a memory box rather than keep them scattered around the house. Saving the most important pair of shoes made it easier for her mom to let the others go.

Over time, Linda learned that hoarding wasn’t about defiance; it was Alice’s way of holding onto memories. By including her in the process and respecting her choices, Linda was able to help her mother declutter in a way that was gentle and non-threatening. It wasn’t always easy, but by focusing on one small task at a time, Linda made meaningful progress.

Practical Tips for Managing Hoarding Behaviors

Organizing and Sorting Together:

Start by tackling small areas at a time. Organize and sort items together, focusing on one room or category of things (e.g., clothes, magazines, etc.). Use this as an opportunity to reminisce about significant objects if possible, but gently encourage sorting through things without overwhelming the person. Keep sessions short to avoid fatigue or stress.

Setting Boundaries:

It’s important to set clear boundaries for what can be kept and where it should go. Create a designated “safe” space for sentimental items, but avoid letting hoarding spread throughout the entire home. Consider using storage bins or shelves to help contain items while keeping the living space organized.

Maintaining a Clean Environment:

While it may not always be possible to fully declutter, try to maintain a tidy home for safety reasons. Clear pathways and remove items that pose a fall risk or fire hazard. Encouraging daily routines that promote small organizational tasks, such as putting away dishes or folding clothes, can help keep the home organized. Additionally, for more safety tips, check out How to Dementia-Proof Your Home in 10 Easy Steps to ensure the environment remains safe and clutter-free for your loved one.

When to Seek Professional Help

If hoarding behaviors become overwhelming or dangerous, it may be time to seek help from a professional. Occupational therapists can provide strategies for decluttering safely, while geriatricians or dementia specialists can offer insights on managing behavioral changes. In some cases, a counselor or therapist can help address underlying anxiety or emotional issues that may be contributing to hoarding behaviors.

For more insight on common dementia behaviors, including hoarding, see Top 10 Dementia Behaviors Every Caregiver Should Know About

Coping Strategies for Caregivers

Self-care for Caregivers:

Hoarding can be incredibly stressful for caregivers. It’s important to take care of yourself physically and emotionally. Set aside time for self-care and seek support from friends, family, or a dementia caregiver support group. Remember, asking for help is a sign of strength, not weakness. Joining a supportive community of caregivers who understand what you’re going through can make all the difference. If you’re looking for additional support, join our private Facebook group where you can connect with others facing similar challenges, share experiences, and find encouragement.

Finding Balance:

Balancing the needs of your loved one with the need for a clean and safe environment can be challenging. Accept that there may be days when progress is slow, and focus on small victories. Be patient with yourself as well as with your loved one.

Conclusion:

Hoarding in dementia care is a complex issue that requires understanding, patience, and practical strategies. While it may be tempting to immediately intervene, it’s important to approach hoarding behaviors with empathy, focusing on gentle solutions that involve the person with dementia. By taking small, manageable steps and seeking professional help when necessary, you can create a safer and more comfortable environment for both you and your loved one.

Remember, caregiving isn’t about perfection; it’s about progress and compassion. Every step you take to address hoarding is a step toward making life a little easier for both you and the person you care for.

If you’re looking for additional support and resources for dementia caregiving, join our community of caregivers who understand what you’re going through. You don’t have to face this journey alone.