Clutter Management for Individuals with Multiple Sclerosis

Multiple sclerosis (MS), a chronic and usually progressive autoimmune disease of the central nervous system, presents with a wide variety of symptoms and follows an unpredictable disease course.¹ When managing the multitude of MS-related problems, clutter is rarely addressed. Clutter has been defined as scattered or disordered belongings that impede movement or reduce effectiveness.² Clutter becomes problematic if it interferes with daily functioning; an example is misplacing important documents or medications. The literature contains no reports of studies on the prevalence of clutter among people with MS or its impact on functional performance in this population.

Many common MS symptoms, such as decreased mobility, visual or cognitive impairment, fatigue, and depression, may contribute to clutter accumulation. It is more difficult for people with impaired physical functioning or extreme fatigue to tidy their belongings than for those without a disability. Individuals with visual or cognitive impairment may keep items visible to serve as reminders or to enable their easy location. People with depression may lack the motivation to organize their home, thus exacerbating the clutter.

Clutter may have a pervasive effect on daily functioning, including physical, financial, emotional, cognitive, and social aspects. Socially, individuals with MS often experience a decrease in interpersonal interaction¹; clutter can worsen this situation because embarrassment about a messy home may prevent people from inviting friends or family to visit. Moreover, clutter can cause people to decline outside invitations (out of fear of having to reciprocate). This may lead to social isolation, which may worsen depression. Cognitively, clutter may exacerbate confusion of an individual with MS and may have a deleterious effect on the person's mental status. Clutter may place individuals in potentially dangerous situations by increasing risks of falls and misplacing medications or important documents, affecting both basic and instrumental activities of daily living (ADLs). Clutter can contribute to an unhealthier lifestyle: if countertops are covered with items, the person may choose to microwave an unhealthy frozen dinner rather than make room on the countertop to chop vegetables for a healthy salad. An individual may also be dissuaded from exercising if an inordinate amount of time must be spent locating sneakers or workout gear.

Individuals with MS often experience a generalized sense of “loss of control” due to the unpredictable symptoms and nature of the disease.³ Clutter exacerbates this sense of loss of control by creating a feeling that one's physical environment is being “taken over,” which may lead to a sense of helplessness. It is critical for rehabilitation practitioners to address clutter management by suggesting concrete ways of regaining control over one's environment in order to improve patients' overall functional independence and participation in life roles.

A clutter management protocol for individuals with MS has been developed and implemented, involving participation in a group program. The program addresses psychosocial issues preventing organization and offers practical strategies for clutter removal and management to improve performance in ADLs. The theoretical framework for the protocol is based on the Transtheoretical Model for Behavior Change.⁴ This theory involves a slow process of helping a person contemplate a desired change and then guiding him or her through taking action as well as maintaining the change. This powerful model is often used to effect major lifestyle changes, such as smoking cessation; in our program, the model was used as a general guide for making changes on a much smaller scale. For example, in the clutter management group, by attempting to slowly weaken ties to “beloved” inanimate objects, such as a coffee mug collection, individuals learn how to “let go” of unnecessary items. Each group typically enrolls 6 to 10 individuals with MS and runs for six weekly 2-hour sessions. We have been offering this group program for over 8 years. This article describes the protocol and conveys practical tips for running “clutter groups” that can be implemented by clinicians specializing in the care of MS patients.

Protocol for Clutter Management Group

An occupational therapist (or other MS clinician) begins the program by reviewing the importance of addressing clutter management and the extent to which clutter can interfere with functional performance. The therapist administers a clutter questionnaire to all participants at the beginning and end of the program (Appendix 1). This questionnaire, developed in our center, has not been validated but provides the therapist with useful information on changes reported by group participants.

The program consists of four steps for managing clutter: 1) make the time, 2) prioritize, 3) set easily accomplishable goals, and 4) reward clutter removal.

Step 1: Make the Time

Trying to find an hour to remove clutter may be too difficult; however, most people can spare 15 minutes daily. The point of this short time frame is to incorporate clutter removal into one's daily routine. Fifteen minutes 7 days a week, totaling almost 2 hours of clutter removal time per week, can result in significant progress. To transform a tedious task into an enjoyable one, we recommend that patients play three to four songs on a music player or radio—usually totaling about 15 minutes—instead of looking at a clock or using a timer to count the 15 minutes.

It must be emphasized that the 15 minutes devoted to clutter removal are in addition to time usually spent on daily chores, such as doing laundry or sweeping floors. Although these tasks may reduce the number of visible items in the home, this is not part of decluttering time. Decluttering time is devoted to special tasks that are not usually done daily, such as going through a closet and preparing to donate unworn clothing.

Step 2: Prioritize

Many people with clutter problems report that initiating the clutter removal process is the most difficult part. Because attempting to eliminate clutter too rapidly can create anxiety and prevent long-term progress, it is critical to introduce changes slowly and incrementally. The thought of organizing an entire home, or even a room, can be overwhelming and the task can seem insurmountable, which is why many people give up before they even begin. Prioritizing what is most important can help get the process started. Therefore, it is important to determine where in the home the clutter removal process should begin. The occupational therapist can help the individual determine which small area he or she should begin decluttering—for example, a part of a countertop or one shelf within a closet.

Step 3: Set Easily Accomplishable Goals

Many people are enthusiastic when they decide that they are going to conquer their clutter. However, the therapist should emphasize the importance of making changes slowly and incrementally in order to prevent the task from becoming too burdensome, which may lead to giving up. For example, a task that may take 3 hours, such as cleaning out a closet, requires time, energy, endurance, and patience that an individual with MS may not have in a single attempt. However, by working only 15 minutes a day, the person will be able to accomplish the task within 2 weeks and more easily move on to the next project. Spending short intervals of time decluttering each day is more productive and conserves time, patience, and energy. Therefore, instead of starting the decluttering process by tackling an entire closet, the patient is better advised to choose a small area such as a shelf or drawer.

One easily accomplishable goal that may serve as an initial step is sorting items into different categories. Final decisions do not need to be made at the initial point of sorting. If the idea of sorting is overwhelming, the person can first walk through the space and, if possible, remove some of the larger items. In order to sort, it is helpful to choose and label five containers. Next, each item in the designated area should be assigned to one of the five categories: Trash, Good Homes, Selling, Storage, or Keeping.

The Trash category should contain any item that can no longer be used and cannot be sold or donated, such as damaged or broken items. The Good Homes category contains items that others—such as a friend, a charity, or a children's hospital—might benefit from or enjoy. The Good Homes category facilitates “letting go” of items by reminding oneself that the item will be put to better use than it will be by being buried in a cabinet or closet. The Selling category consists of valuable items that may be sold, but it is critical to set a short time frame in which to sell these items. If they are not sold within the short time period allotted, they should be sorted to another category. The Storage category consists of items that serve a functional purpose but are not used on a regular basis, such as a sleeping bag needed for an annual camping trip. This container should be labeled on the outside with the items retained inside. Organization is facilitated by grouping similar items together. In determining whether an item should be placed in the Storage category, it is useful to think about whether its use or purpose is more or less valuable than functional, clutter-free space. Finally, the Keeping category should contain items that have a functional purpose or a selected few items with sentimental value, which will be further addressed.

When determining whether an item should be kept or stored, verbalizing its importance may serve as a catalyst for its assessment and ultimately the decision to discard. It is essential to keep in mind the bigger picture: a clutter-free, functional space. When sorting through clutter, five important questions should be considered before an item is “stored”:

1) Is the item still functional (not broken)?

2) Will the item actually be used in the future?

3) Will a person remember that he or she owns the item?

4) Will a person know where the item is located?

5) Does a person have the physical space for the item?

If the answer to one or more of these questions is “no,” the occupational therapist should encourage the individual to consider how discarding the item will affect his or her life.

Step 4: Reward Clutter Removal

As discussed, the clutter removal process should be a positive experience. Clearing an area or a room has natural intrinsic rewards, such as a feeling of accomplishment or pride. However, the occupational therapist should encourage extrinsic rewards as well, such as taking a warm bubble bath, getting a manicure, or any other special treat designed to reinforce the positive behavior.

General Concepts

In the process of devising the clutter removal protocol, some general concepts were found to be helpful by many participants. Most people have traveled at some point using a suitcase (or two) filled with all of the items needed for a trip. A suitcase can be considered analogous to a home in that there is a limited amount of space available for the items required for a trip. Airlines will charge fees for overweight or extra baggage, and that charge could be thought of as the price of a cluttered home.

Stores strive to make products appealing and spend significant amounts of money on marketing. “Thinking Twice” before purchasing an item (or even accepting a complimentary item) can decrease impulsive purchases. This strategy prescribes refraining from purchasing an item immediately. Wait a day or two, and if you are still thinking about buying that item, then it is permissible to go back to the store and purchase it. Try to determine whether the item is necessary and practical (based on the five questions listed above). If the answer is yes, is there anything you currently own that could be replaced? For example, if you wish to return to the store and purchase a sweater, think about which sweater you currently own that could be discarded or donated in its place. In many instances, people forget about the item they were intending to purchase or, once home, realize that the item is not needed or not as appealing as it appeared in the store.

General tasks that take “30 Seconds or Less” should be completed immediately. Examples include taking out the trash, hanging up a coat when returning home, washing a dirty dish instead of placing it in the sink, and throwing away food found in the refrigerator that has passed its expiration date. If a sink piles up with dirty dishes, that becomes a chore requiring a block of time to accomplish. It is much easier to spend 30 seconds washing an individual dish and not allow them to accumulate. This tip can help prevent clutter buildup.

In recent years, people have started to use electronic records more frequently. This is an excellent way to minimize the accumulation of papers. Scanning documents or photographs is a great way to preserve them without retaining a physical item. A concept that can be helpful is condensing items such as photo albums or collections. Choose a “collection representative” (eg, 5 pictures from over 40 in a photo album of a specific trip) as favorites, and discard the rest.

If an object is not used, it should be discarded—the concept of “Use It or Lose It.” Some may find it helpful to work with an “outsider,” another person who can come into the home and help identify items that could be discarded. This may help someone reconsider whether an item truly has an essential purpose. A time limit should be set for using items with an intended purpose; if the deadline is not met, the items should be discarded, as in the case of reading a newspaper article of interest. The most important news stories will likely be continued on subsequent days. It should be kept in mind that some of what was written is not likely to be valid days or weeks later. For magazines, 2 weeks or a month is a reasonable time frame. If the magazine contains a particular article or recipe of interest, that page can be torn out and retained while the rest of the publication is thrown away. Finally, a deadline should be set for fixing broken items that are not functional, because when that item is needed, it will likely have to be purchased again. It is important to discard items that are not functional or not being used, instead of trying to rearrange or organize them.

As for clothing, the general rule of thumb is to discard unworn clothes after 6 months to a year. If an article of clothing has not been worn in a year (encompassing all four seasons), the chances of wearing it in the future are remote. Many people own a favorite item of clothing retained from an earlier stage of life—for example, a pair of “skinny jeans” from thinner times. After losing weight, however, people tend to feel better about themselves and want to purchase a new wardrobe. Moreover, styles and trends change; despite the cyclical nature of fashion, patterns and shapes are usually slightly different from in previous eras. People should also not become accustomed to keeping complete suits of clothing if only a top or bottom piece is worn.

Items that have sentimental value are the most difficult to part with. Sorting through objects to which one has an emotional attachment can be very challenging. It should be carefully considered whether retaining the item is critical to retaining the cherished memory. If it is unclear, the item could be placed with another family member for safekeeping. If the item is retained, it should be incorporated into a decorative display or organized storage. Taking a photograph of the item or collection may help to retain the memory of it while allowing the physical object to be discarded. Such a photo could even be enlarged and hung on a wall. Members of the clutter management group are encouraged to discuss the value of inanimate objects and think about why there may be such a strong emotional attachment to them.

Difficulties occur when many items of sentimental value accumulate and interfere with the person's ability to function. The therapist should encourage the group participant to differentiate between a physical object and the emotions it may elicit. Those feelings can still exist in the absence of the item. Dealing with emotions in a healthy manner can allow a person to make more objective decisions about what can be discarded. Certain strategies for dealing with items of sentimental value have been reported to be beneficial. For example, if a person is holding onto dozens of art or school projects from a child's early years or numerous items of clothing belonging to a deceased loved one, choosing one or two favorites and discarding the rest should be encouraged.

If the therapist believes that a group participant's clutter may be a manifestation of a more pervasive personality disorder or psychiatric condition such as obsessive-compulsive disorder or hoarding, a referral to a mental health professional should be considered. A handout that summarizes many of these clutter management tips has been published as supplemental online-only material with the online version of this article at ijmsc.org and is available for downloading and distribution.

Mail

Mail can be viewed as a constant influx of clutter. Various strategies can be adopted to control it. Junk mail should be immediately weeded out and discarded to prevent it from accumulating. A time limit should be set for sorting mail, such as every 2 days, with immediate separation of important documents from less critical or “pleasurable” ones. A filing system is needed, with folders labeled appropriately to allow easy categorization of important documents. The label “miscellaneous” should be avoided, as it is no different from having an unorganized pile. There may be instances in which a single document fits into multiple categories, but consistency in filing documents is important. More recently, similar systems for organizing electronic mail have also been discussed.

Limitations

The instrument used in our center to assess change in clutter-related incidents and habits (Appendix 1) is not a validated measure. Although this protocol provides practical strategies for reducing clutter that interferes with daily activities and functioning, a clinical study would be useful to assess changes more objectively.

Conclusion

Health-care practitioners running clutter management groups for people with MS should encourage group participants to persist with their clutter removal efforts after the program has ended. Although people with MS may experience a complex variety of symptoms that can interfere with the process, anyone (from those who are full-time wheelchair users to those with debilitating fatigue) can incorporate at least some of these concepts into their daily routine. Decluttering is a process that takes time to accomplish. The clutter did not accumulate in 1 day, and it will not be conquered in 1 day. Fifteen minutes a day may be enough time to manage clutter and prevent its reappearance. Long-term maintenance of protecting 15 minutes a day for dealing with clutter is essential once a home is organized to prevent future clutter accumulation.

Clutter management is an important area for clinicians working with the MS population to address. Applying some of the simple interventions presented here could help to improve daily functioning, safety, and performance of ADLs among people with MS and thus enhance their quality of life. Over the years at our center, dozens of individuals with MS have reported that reducing clutter has had a positive impact on their symptoms and quality of life. Therefore, we are beginning to develop objective measures of the impact of clutter management in the MS population.

PracticePoints

Clutter has a profound impact on individuals with MS, with detrimental effects on physical, financial, social, emotional, and cognitive functioning.

Clutter removal interventions can be used to increase MS patients' participation in vocational and leisure activities, social pursuits, and other meaningful occupations.

Incorporating clutter management interventions into MS care programs can enhance the quality of life and functional independence of people with this disease.