Linda, who is in the early stages of Alzheimer’s, enjoys taking trips to the thrift store. Her intent is to find treasures and collectibles, such as teacups, which she has collected since she was a child. Once in a while, Linda brings home a teacup, but most of the time, she comes home with a lot more items, most of which she already has enough of and doesn’t need. Linda also participates in Buy Nothing and picks up all kinds of stuff each day, and has a new habit of keeping any piece of paper she has in her purse or ads she gets in the mail. Her home has gotten out of control, and her family is afraid that it’s just not healthy.
Clutter and Dementia
Often, people with Alzheimer’s and other dementias, such as frontotemporal dementia, gather and stockpile things. They might not be willing to part with useless papers, keeping them all piled on tables and around furniture. They also might stock up on food and store it continually until it’s rotten, and then still be unwilling to dispose of it.
When During Dementia Does Hoarding Occur, and Why?
Hoarding tends to happen in the early and middle stages of Alzheimer’s disease. Here’s why people with Alzheimer’s and other forms of dementia hoard and cause clutter in their homes:
- They feel isolated: Hoarding can sometimes be a response to feeling isolated. A person’s focus turns to things instead of interaction with others, or to the loss of control of memory functioning, friends, or a meaningful role in life.
- Anxiety that they might lose something: Unlike other hoarders, those with Alzheimer’s or another form of dementia may be hoarding itmes because of the anxiety of understanding that they might lose something.
- Sense of comfort: The presence of things around you might also provide you with a sense of comfort.
- Life-long tendency gets out of control: Hoarding can also develop from a life-long tendency that becomes more out of control when dementia reduces impulse control. For example, Linda in our example who collected teacups for many years may begin to expand that collection. It soon may become a collection that takes over the house and now contains many items that have no value.
A difference between people with Alzheimer’s or other forms of dementia who hoard and other hoarders is that those with dementia tend to hide the things they hoard, forget where they put them, and then accuse others of taking them. This sometimes goes along with delusions that someone is going to steal their belongings.
Why Is Hoarding and Too Much Clutter a Concern for Someone with Dementia?
In one sense, if someone is living in her own home, you could argue that he or she has the right to live the way they want. However, there are some concerns that make addressing hoarding and too much clutter in dementia a necessity at times. Consider intervening in these scenarios:
- There are multiple tripping hazards in the home because of piles of stuff;
- Food storage is attracting pests or is unsafe to eat;
- Lost things become a major source of distress for your loved one;
- Bills aren’t getting paid because they’re lost in piles of other papers.
Is Decluttering a Good Idea if a Loved One Has Dementia?
You might think de-cluttering would make it easier for people with dementia to do daily tasks. This is not always the case, according to a new study from the University of East Anglia (UEA) in the United Kingdom.
The UEA study included 65 people with either mild, moderate, or severe dementia. They were asked to carry out daily tasks such as making a cup of tea or a simple meal. Researchers studied whether these people with dementia were better able to carry out tasks, such as making a cup of tea, at home surrounded by their usual clutter or in a clutter-free environment. They were surprised to find that participants with moderate dementia performed better when surrounded by their usual clutter. This was not necessarily the case for those with mild and severe dementia, who were able to perform at the same level in both settings.
“It is generally assumed that a person with dementia will be better able to carry out daily tasks when their home space is tidy and clutter-free,” said Eneida Mioshi, a professor in the School of Health Sciences at UEA. “However, there has been very little research to really test this hypothesis,” Mioshi said.
Additional Findings from the Study
The ability of the participants to complete tasks was assessed in two locations: their own homes and in a fully furnished research facility meant to replicate a home setting. The research facility was free of clutter while the participants’ homes were left as they were and had varying amounts of clutter.
Occupational therapist Julieta Camino, a PhD student in the UEA School of Health Sciences, said “We thought that the complete absence of clutter in our research bungalow would play a beneficial role in helping people with dementia with daily living activities. But we were wrong. We were surprised to find that, overall, people with moderate dementia, in particular, performed daily tasks better at home — even though their homes were significantly more cluttered than our research bungalow. And it didn’t seem to make any difference how cluttered the participant’s home was. The only factor that contributed to how well they could carry out tasks at home was their level of cognition — with those with severe dementia encountering the same difficulties to perform the tasks at home and in the research bungalow.”
The study was published recently in the journal Alzheimer Disease and Associated Disorders.
A Tidy Environment Can Help People with More Serious Dementia
Experts said that unlike those with moderate dementia, a tidy environment may help people with more severe dementia. To study this, the researchers from the UEA asked participants at various stages of dementia to carry out daily tasks in different environments, noting that those who were more severely affected performed better in a tidy environment.
Making Sure a Home is Safe for a Loved One with Dementia
Whether it’s best that a home have a little bit of clutter or be completely tidy, these are some tips to ensure that a home is safe and livable for a loved one with dementia:
- Reorganize and create paths to avoid falls: Don’t try to clean everything out of your loved one’s home all at once. You’re better off reorganizing it and clearing paths so that there is a less of a chance of tripping over the clutter.
- Keep items that are special to the person: Designate a drawer for belongings that are special to the person. It may be possible to remind them to place items there that they might otherwise lose.
- Remove certain items right away: If you are removing things such as rotten food, take them off the premises right away. If you leave it there and just throw it in the garbage can, your loved one might spend much time undoing what you did and taking it all back out. Rather than ask their permission to remove it, do it discreetly in order to not increase anxiety.
- Don’t try to use lots of logic to persuade your loved one to change. This is rarely effective with someone who is living with dementia.
- Be compassionate: Understand that hoarding is a response to dementia. It’s a way of coping with changing memory and confusion, and it’s not something that can easily be controlled.
- Distinguish between harmful hoarding that poses a risk to the person and other hoardings that simply bother you or embarrass you.
- Be flexible: In dementia care, it’s important to be flexible when at all possible, recognizing that dementia already takes much control from those living with it.
Medicaid Asset Protection for Loved Ones with Dementia
Do you have a loved one who is suffering from Alzheimer’s or another form of dementia, who can no longer live at home? Persons with Alzheimer’s and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. Please call us when you’re ready to make an appointment for an initial consultation:
Fairfax Medicaid Planning: 703-691-1888
Fredericksburg Medicaid Planning: 540-479-1435
Rockville Medicaid Planning: 301-519-8041
DC Medicaid Planning: 202-587-2797
About Evan H Farr, CELA, CAP
