How to Handle Hoarding
Has your loved one, before Alzheimer’s was diagnosed, always been a bit of a pack rat, someone who believed in “saving for a rainy day” or “waste not want not?” Or, as younger versions of themselves, did they like to collect things, such as dolls, coins, and other items considered valuable and enjoyable? If so, you could start to see the “collector” take that behavior to the extreme, which is sometimes called hoarding.

It’s important to know what may trigger the behavior, things you may be able to do when you see an escalation, and precautions to take for the safety of your loved one and family.


Possible Triggers

Compulsive hoarding is a psychological disorder often seen in obsessive-compulsive personality disorder. If hoarding begins to interfere with everyday activities and life, it is considered pathological hoarding.

Dr. M. Reza Bolouri, board certified neurologist who specializes in behavioral neurology in Alzheimer’s and dementia doesn’t consider most collecting/saving/hoarding seen in Alzheimer’s patients as pathological. He also does not classify as hoarding activity such as hiding food, clothing, watches and other personal items. Instead, he reminds us the individual may simply no longer know what to do with the item, is embarrassed, and will hide something instead of asking someone why they have it. Dr. Bolouri says it is important to always keep in mind that someone’s pre-Alzheimer’s personality may trigger hoarding behavior in the disease. For example, someone who was already prone to experiencing anxiety, when faced with aging and the possibility of outliving their resources, may begin to collect and save against the onslaught of feeling overwhelmed by what lies ahead.

And according to Susan London, LMSW, QDCP with the Alzheimer’s Foundation of America, many times hoarding does demonstrate a need for comfort because of the deep fears and anxiety experienced by some patients.

Others will hold on to items because they fear their memories will be lost without that tangible evidence of the past. As Alzheimer’s patients lose track of what is going on in the present, those items could become more and more important.

Dr. Bolouri says hoarding behavior is most likely due to insecurity, anger, and confusion as brain function is decreasing. And London, at the Alzheimer’s Foundation, agrees, adding that a loved one may take things that aren’t theirs because they like it for the comfort, memories, or because it calms those fears and anxieties.


Preventatives

When faced with extreme collecting/saving/hoarding habits, family counseling could make a big difference in how you cope and manage. The Alzheimer’s Foundation and other organizations can answer your questions on help lines and assist you in finding information, resources, and support groups in your area.

When appropriate, Dr. Bolouri tells us you can try to reason, and even talk about items to throw out and give away. With help from the family, if your loved one is still at a stage in the disease where he or she can make that connection through reasoning, they may be able to give up much of what they have collected.

AlzOnline suggests that due to frontal lobe deficits, your loved one may need more intensive, interesting and distracting activities to help curb the hoarding habit, such as organizing a drawer, helping you label old photographs, etc. The time you spend with a loved one will also create good memories for you, which will help sustain you as you make the journey together.

London has seen successes with families who create a memory box, a special place to keep “special things.” She suggests you pick out and decorate the box together and put it in the same place all the time. If your loved one likes to collect bread ties, for instance, they can keep them in the box and you’ll be able to periodically “police” the box as those bread ties accumulate. Important items such as eyeglasses, wallets, etc. can be labeled and put in the box for safekeeping, and as place to know where things are. When your loved comes to you looking for that item, you can help them by saying, “Why don’t you take a look in your box?”

If medically indicated, Dr. Bolouri adds that anti-psychotics and anti-depressants, when those conditions exist, may also curb the need to save and keep everything around them. As a member of research team that conducted studies leading to development of Alzheimer’s drugs such as Aricept, Cognex, Exelon, Razadyn, and Namenda, he doesn’t believe this behavior is alleviated by use of these medications.

And, keep in mind, as the disease progresses, you will see most likely see this behavior begin to decrease and end.


Precautions

A study of elderly hoarders found that hoarding constituted a physical health threat to 81% of them, including threat of fire hazard, falling, unsanitary conditions, and inability to prepare food. (Treatment of Compulsive Hoarding, Sanjaya Saxena, and Karron M. Maidment, Summer 2007)

So make sure food is stored properly. Someone may accidentally put milk in the pantry instead of the refrigerator and then drink it, causing illness. Improperly stored food may attract insects and rodents. Approach these situations with an attitude of helping, and not blame.

And before hoarding results in piles, which could cause falls and fractures, it’s time to intervene. As advised in the book, I’m Still Here, by Dr. John Zeisel, a good rule of thumb is to “do as little as possible to help the person to be successful, but leave nothing undone.”

If you find medicines tucked away, remember that your loved one probably didn’t hoard on purpose, but more out of a confusion of what do to, or fear they could run out of the medicine or money to buy it. Don’t let these potentially dangerous or fatal conditions continue.

As a licensed social worker, Susan London emphasizes that what looks like a messy pile of mail may be the result of your loved one losing the capacity for sequential tasking. It’s important for their well being to sit with them and go through those stacks. Don’t let things such as utility bills go unpaid. Help them with the process of looking at bills, writing the checks, and getting them mailed.
And though it’s hard at times, don’t use harsh language or tone of voice, and try to be patient. Remember, your loved one is not doing any of this on purpose, but is only reacting to the decreased functionality of the brain. Check with their doctor if you believe the behavior is extreme.

Other tips, from AlzOnline include:

* Lock away anything of value to you, such as money or jewelry
* Check the trash before throwing it out
* Find favorite hiding places, which might include drawers, underneath cushions and beds, pockets, or closets.
* Check hiding places periodically
* Secure certain rooms of the house

London tells the story of Doris, a nursing home resident who liked to collect tissues (because they were soft) and stuff them in her pocketbook that she carried around the home. One day, she told a nurse that the pocketbook, which wouldn’t close because it was filled to capacity with tissues, was “broken.” The quick-thinking nurse replied, I see what you mean, but I think I can fix it.” Doris gave her the pocketbook, and taking it into a different room, the nurse took the tissues out, went by Doris’s room and retrieved a soft stuffed teddy bear that was a gift from Doris’s daughter, and handed Doris the “fixed” pocketbook and the soft, comforting teddy as a reward for trusting her with the pocketbook.

Although it’s hard at times, screaming and yelling will not help with hoarding behavior. It takes patience, creative thinking, and reasoning when applicable. This behavior is neither on purpose nor a way to “push your buttons.”

It’s all about your approach, and remember, as you reassure your loved one with an “it’s okay,” remind yourself the same. When you are sad and exhausted, and tired of bread ties and tissues – really – it is okay.

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By Aprill Jones
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