Tips for Caregivers: What is Hoarding and How to Manage It

Hoarding is a behaviour that can be seen in people with Alzheimer’s and other forms of dementia, where individuals collect and stockpile certain things. Sorting through things that are familiar to them can be reassuring for someone with dementia. For example, the person may want to keep piles of papers that are completely useless or stock up on food and refuse to dispose of it, even after it has gone off. Hoarding can also involve constant rummaging through drawers and belongings.  

When Does Hoarding Occur?

Hoarding is most common in the early and middle stages of Alzheimer’s disease. It is typically a response to a feeling of anxiety or worries about losing things. Hoarding can occur due to feelings of a loss of control, loss of memory or loss of a meaningful role in life. It can also occur as a result of a loss of social ability, where the person with dementia feels isolated and turns to things to replace interacting with others. 

In some cases, hoarding can develop from a previous interest that becomes amplified when dementia reduces the ability to control impulses. For example, someone who collected train sets for years may suddenly develop an interest again and start to expand their collection to the point where it starts to take over the house.  

Other difficulties associated with hoarding are that people with dementia tend to hide the items that they are hoarding, and with failing memory they may forget where they have put the items, and then accuse others of taking them. Sometimes this can lead to the person thinking that someone is going to steal their belongings.

What Items Are Commonly Hoarded?

Hoarding can occur with any item, but some of the most common things that people with dementia may hoard include:

• Food
• Rubbish and waste
• Plastic bags and garbage bags
• Old clothes
• Papers
• Collectable items like train sets

Why Should Hoarding Be Monitored?

Hoarding doesn’t seem like a major issue for someone caring for a person with dementia. If it’s not hurting anyone, and the person is happy to collect their things, then hoarding does not need to be monitored or managed. There are, however, some things that can be the result of hoarding that are a cause of concern. A carer or loved one may have to intervene in the following situations: 

• The house has a number of tripping hazards due to the piles of things
• The house is attracting pests due to poor food storage, or the food is unsafe to eat
• The person with dementia is becoming extremely distressed due to losing things 
• Bills are getting lost in piles of other papers, and as such are not being paid

How to Help with Hoarding 

If your loved one or the person you are caring for is experiencing hoarding and you feel like you should intervene, it’s important to remember that you shouldn’t try to clear everything out of their home all at once. The first step is to reorganise the piles of things and clear paths so that the person is less likely to trip over something.

Some of the other things you can do include the following:

• Choose a drawer that is designated for special belongings. You can remind your loved one to place items in there that they may lose otherwise. 
• If you are removing things from the home, it’s important to get them completely off the premises. If you leave the things in a bin in the house, you run the risk of the person with dementia taking it back out. This is particularly important for items like rotten food.
• In most cases, it’s best to remove any items discreetly to ensure you are not increasing or triggering anxiety in the person with dementia.
• Don’t try to persuade your loved one to change their behaviour with logical arguments. This is unlikely to be effective and will probably just cause you frustration and distress the person living with dementia.
• Always be compassionate. This goes without saying for any care that you provide for someone with dementia. Hoarding is a way of coping with changing memory and confusion, and it’s not something that can be easily controlled by someone living with dementia.
• Make sure you distinguish between hoarding behaviour that is harmful and poses a risk to the person and other hoardings that are more just a frustration for you. When caring for someone with dementia, it’s important to be flexible and understanding.

Caring for a loved one with dementia is not easy. However, you are not in it alone. There are a number of resources that can help, such as caregiver support groups. In addition, Brain Sparks offers a Dementia Live® course that immerses carers in the experience of living with dementia so that they can gain powerful insights for effectively communicating with patients.