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San Francisco Bay Area Center for Cognitive Therapy and University of California, Oakland, CA, USA
Special populations, such as older adults with memory and other cognitive deficits or people who hoard both objects and animals, complicate a severe hoarding problem and challenge clinicians to develop and manage effective harm reduction plans. In this chapter, I describe several common populations or situations that can complicate the harm reduction process and provide guidance to clinicians searching for ways to manage these aspects of severe hoarding.
10.1 Hoarding and Older Adults
Hoarding is common among older adults and presents great risks to the frail elderly living at home (Frost, Steketee, & Williams, 2000; Saxena & Maidment, 2004). Older adults who hoard usually live alone and are socially isolated (Thomas, 1997). Hoarding behaviors threaten the health of many older adults and make it difficult for the older adult to care for himself and live independently. Older adults may live in highly unsanitary conditions and may not be able to prepare or store food safely. Older adults who hoard may have poor hygiene because they do not have access to their sink or shower or because the bathrooms no longer function (Kim, Steketee, & Frost, 2001). As a result, the skin of older adults may be black with dirt. Their hair may be filthy and their clothing soiled and ragged. Older adults may not be able to exit the residence quickly in the event of earthquake or fire. They may fall and injure themselves in the clutter. Were they to have a medical emergency, emergency response personnel may not be able to enter the residence quickly with the needed lifesaving equipment. Frailty and dementia are important and common risk factors for older adults who hoard. I describe these risk factors and offer guidelines for including these factors in HR plans for older adults who hoard.
10.1.1 Influence of Frailty on Harm Reduction
Frailty refers to a syndrome in which a person becomes less resilient due to a decline in balance, muscle mass, and diminished strength and tolerance for exertion (Fried et al., 2001). Frailty results in exhaustion, weight loss, weak grip strength, slow walking speed, and low energy expenditure. Frailty influences harm potential in two ways. First, frailty alone increases the risk of an older person slipping and falling. However, frailty and a cluttered environment (even a moderately cluttered environment) can increase the harm potential quickly such that older frail adults who hoard are at grave risk (Kim et al., 2001). Increased risk of injury is one of the primary complications associated with hoarding behaviors among the elderly (Eckfield & Wallhagen, 2007). For example, a frail older adult reported to the clinician that he broke three ribs when he leaned over a large rubber storage bin in his highly cluttered garage to reach a container behind it.
Second, frailty can slow the decluttering process considerably. As people age and consequently lose muscle mass and bone density, they may also lose the ability to move as quickly and easily as they once did. For this reason, clinicians can assume that the pace of in-home visits and the sorting or removal of possessions may be slower than for a nonfrail older adult. For example, an older adult client who wore arm braces because of arm weakness could only sort papers for a short time before he needed to rest. In addition, because his arms were weak, he was unable to carry much on his own and the garbage bags he filled with discarded possessions and rotten food stayed in his apartment for long periods until he found someone to help carry these bags down to the dumpster of his apartment building.
Clinicians may wish to consider the following guidelines when developing a HR plan for frail older clients.
10.1.1.1 Consult with Medical Providers
Clinicians may wish to consult with the client’s physician regarding medications and medical conditions that may contribute to frailty and thereby increase the client’s harm potential. For example, vitamin, hormonal, or nutritional deficiencies may significantly influence frailty, fatigue, and concentration. In addition, certain medications may place a frail older adult at greater risk. For example, sedatives, especially benzodiazepines (Valium, Xanax, and Ativan), increase the risk of falls (Neutel, Hirdes, Maxwell, & Patten, 1996). Clinicians may wish to discuss with the client’s physician alternatives to medications that increase fall risk, such as cognitive-behavior therapy or other pharmacological agents. In addition, clinicians may wish to ask the physician the date of the client’s most recent physical and to clarify the patient’s health status and current treatment plans. Do not assume the client’s physician is aware of the hoarding situation, however. If the physician is not aware, the clinician must first gain permission from the client to contact and inform the physician of the hoarding problem. Usually, these permissions are part of the HR agreement and the team negotiates these early in the HR process.
Frail older adults who hoard and use alcohol and sleep medications further complicate the HR process. Commonly prescribed sleep medications can further limit a client’s dexterity and stability. I recommend that clinicians ask all clients, but particularly frail older clients, about sleep medications, whether a physician prescribes them or whether the client purchases them over the counter, and whether they consume alcohol and how much and how often. If older frail adults drink, they may be at greater risk for falls due to the sedating effects of alcohol on the nervous system.
10.1.1.2 Make Changes to the Living Environment
There are several ways to make a cluttered home safer for a frail older adult and clinicians may wish to include these targets in the HR plan. First, add railings and physical supports along stairways and pathways throughout the living space. If this is not an option, arrange solid and stable pieces of furniture through high-traffic areas of the home that the client can use for support and to rest along the way. If the client has covered the furniture with papers and possessions, clear these furnishings and relocate the possessions. Even clearing just a few inches of space to allow the client to grasp the furniture firmly can assist him in moving more safely from room to room. If the client continues to clutter these furnishings, identify them as HR targets and work with the client to keep these targets clear.
Poor lighting increases the risk of fall or injury for frail older adults, particularly for those with poor or limited vision. Clearly, there is an increased risk of falling if the client cannot see where she is stepping. Therefore, clinicians may wish to include in the HR plan the installation of adequate lighting in the rooms and staircases, and to ensure that the lights are working. This requires, of course, that the client has electrical power and is up to date with his power bill. If the client has a history of failing to pay his power bill, the HR team may wish to identify this as a HR target and develop a plan to maintain the electrical power to the home at all times. In addition, the clinician may wish to arrange for the installation of night-lights to decrease the chance of falls in the evening.
Cluttered floors are another high-risk situation for the frail older client. The client can slip on loose pieces of paper on the floor and fall backward in a “banana peel” effect. When possible, clinicians may wish to work with the HR team to replace wood, linoleum, or tile floors in the home with nonslip wall-to-wall carpet. Area rugs pose a significant fall risk. The HR team may wish to remove these rugs or at least tack or tape the rugs securely to the floor. Stairs are safest when fully carpeted or when they have nonskid treading. In general, staircases are a significant risk for frail older adults who may already struggle up and down the stairs. The HR team may wish to prioritize staircases as HR targets and work with the client to keep staircases clear of clutter. In addition, the HR team may wish to organize electrical cords so that they do not pose a trip hazard.
The Cornell Medical College (www.thiscaringhome.com) provides tips for making each room in the home safer for an older adult. In addition, the clinician may wish to include an occupational therapist on the HR team for a frail older adult with severe hoarding. Occupational therapists have particular expertise in developing and implementing strategies to enhance the day-to-day safety and functioning of older frail adults in their homes.
10.1.1.3 Encourage Client to Change Behaviors to Enhance Safety
Health behaviors that promote strength and stability can help frail older adults who hoard to remain safe in their homes. Something as simple as wearing rubber-soled shoes rather than slippers during the day can reduce the risk of fall. Canes, walkers, or other physical supports that help clients walk more steadily can also decrease the risk of slip and fall injury.
Perhaps one of the best ways a frail older adult can enhance her safety is to build her muscle strength. A client who hoards may agree more readily to walk three times a week than to discard valued possessions, so regular exercise that enhances her strength and endurance is an effective HR strategy because it lowers her harm potential by improving her physical capacity. If the older adult is particularly frail, the clinician may wish to work with her to find a walking buddy to supervise her safety as well as to increase her socialization. In addition, the clinician may wish to encourage frail older adults to begin with chair or pool exercises to build strength and stability and then transition to regular walks.
10.1.2 Influence of Dementia on Harm Reduction
Geraldine could never find her checkbook. Her family was accustomed to her misplacing things and joked, “She’d lose her head if it weren’t attached.” However, as she aged, her tendency to misplace things—often quite important things—worsened as the piles of clutter in her home increased. To complicate matters further, Geraldine began to forget where she kept items that she had properly placed, too, such as her clean clothes, her shoes, and her eating utensils. She would look in the refrigerator for a spoon to eat cereal, when the spoons were in the same utensil drawer they had been in for the last 20 years. One Saturday morning she drove across town to her son’s home and arrived without shoes to ask for a spoon because she could not find one in her house. At that moment, Geraldine’s son knew that this was more than just misplacing a few things and initiated the process of seeking a neurocognitive evaluation.
Twenty-three percent of individuals with dementia may have hoarding behaviors (Hwang, Tsai, Yang, Liu, & Lirng, 1998). Through its effects on cognition and memory, dementia has a significant impact on the ability of an individual to care for herself and to live independently. Individuals with dementia may no longer be able to discriminate between trash and nontrash items, or remember how to dispose of items they recognize as trash (Hogstel, 1993). While spoiled food is common in the kitchens of people who hoard without dementia, those with dementia may be at greater risk of eating such foods because they are less likely to recognize that something is not safe to eat. This can include other potentially harmful substances in the house, such as cleaning fluids, plant fertilizers, jewelry cleaners, and lotions.
When a client with a hoarding problem also has significant problems with memory and cognition, finding important possessions becomes nearly impossible. Therefore, I recommend clinicians screen older clients who hoard for signs of significant cognitive decline (see Chap. 6: Assessing Harm Potential). When designing a HR plan, clinicians may wish not only to discard rotting food in outdoor trash containers but also to remove these containers and materials from the premises completely (this includes chemicals, fertilizers, lotions, and cleansers). Individuals who hoard may rummage through these outdoor trash containers and bring rotten foods and dangerous materials back into the house—and, those with dementia may ingest these items or handle the materials and thereby expose themselves to disease and infections. In addition, older adults tend to have multiple health problems for which their physicians then prescribe multiple medications. Older adults who hoard then typically save and stockpile large quantities of medications that pose significant risk. I recommend clinicians identify these medications as HR targets and work with the client to discard old medications and keep no more than the current prescription available in the home.
10.1.2.1 Rummaging and Hiding Behaviors
Many individuals who hoard have mounds of possessions in their homes that they have not looked at in years. Individuals with cognitive impairment, however, may spend part of their day rummaging through their possessions in an effort to find an item that the set down but then forgot where they placed it. Further complicating the situation, many individuals cope with their memory deficits by placing their belongings in “secret places” in order to safeguard them. However, the person hides the item too well and HR team members or family members often never find it again. In this way, clients often lose and never find important possessions, such as cash, jewelry, and family heirlooms. To help manage hiding behaviors, work with the client and family to lock the attic, basement, and unused closet doors in the home. In addition, ask family members or caregivers to point out the usual places the client hides items and keep these locations locked or padlocked as well.
A client who hoards, typically prefers to keep possessions in sight because she doubts she will remember what she owns if the possessions are out of view (Hartl et al., 2004). Were the client in cognitive-behavior therapy, the therapist might help the client test whether she remembers an item placed out of sight. However, for clients with dementia, keeping things in sight is a practical strategy that extends the ability of an individual to function independently. For example, one client with dementia and hoarding placed all her clean laundry on the couch in the living room. She had dirty laundry scattered throughout her home, but she knew that if the clothing was on the couch, it was clean. For a while, this distinction allowed her to dress herself in clean undergarments and outfits each day without assistance. Eventually, however, her dementia progressed and she was no longer able to distinguish clean from soiled garments.
Another HR strategy for clients with both dementia and hoarding is to set up systems that enable the client to locate important possessions (keys, glasses, and money) among the clutter. Family caregivers often worry their loved ones who hoard will not be able to find their medications amid the clutter. Attaching brightly colored key rings or stickers on important items, or using medication boxes with alarms or chimes can help clients and caregivers find medications more easily (Bakker, 2004).
Finally, clinicians may wish to develop backup plans to assist the client who misplaces his money or keys in spite of systems set up to prevent this (Bakker, 2004). Family members can store a couple of 20-dollar bills in a special spot in the home, in the car, or even at the home of a neighbor. The family member can then direct the client to that special spot or person if he cannot get into his home or does not have money for a meal.
10.1.2.2 Accusations and Mistrust
Clients who hoard with dementia are more likely than cognitively intact clients who hoard to suspect (mistakenly or rightfully) that others have moved or taken their possessions. In fact, it is quite common for many individuals with dementia to fear, or adamantly insist, that others have robbed them (Bakker, 2004). Accusations can be extremely painful and infuriating to family members who only wish to help the loved one. For some family members, it is very difficult for them not to take such accusations personally. However, it is essential that family members do just that. Clinicians can help family members understand that such accusations are a symptom of their loved one’s cognitive impairment and to reassure family members that their loved one still cares for them. Furthermore, when false accusations arise, clinicians may wish to encourage family members to provide gentle and persistent reassurance that they did not take, relocate, or throw away the client’s possessions.
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