Hoarding Disorder Therapy
A Word About Hoarding.
From Hoarding to Healing in California
A novel program in San Diego County helps older adults confront their homes’ clutter, and the trauma tied to it.
Vicky Wittorff poses for a portrait at her home in Jamul, Calif. Wittorff has participated in San Diego County’s CREST program, which offers a unique approach to treating hoarding disorder in older adults. (BRETT ZIEGLER FOR USN&WR)
SAN DIEGO – Vicky Wittorff’s cozy, rustic home is full of antiques – but not too full. Each piece is carefully placed, whether it’s on a side table, wall or windowsill. Everywhere you look, something odd and interesting catches your eye.
It wasn’t too long ago that the house was too full, with boxes and bags stacked almost to the rafters. The only way to move around was via a narrow path carved from the clutter.
“Clothes, paperwork, toys, shoes – you name it, I had it,” Wittorff recalls.
Wittorff and her husband, Bob, a cabinetmaker and firefighter, built the home in 1973 on an acre of land in Jamul, California, a rural town roughly 20 miles east of San Diego. Wittorff kept a tidy home – friends would comment on how beautiful it was, she says. Then on Mother’s Day in 2002, her youngest daughter, Janelle, was shot and killed by a friend in the Wittorffs’ driveway. The friend had been struggling with alcoholism and depression, and Janelle, 18, was trying to help her.
Overwhelmed by grief, “I gave up,” says Wittorff, 67. She and her husband started buying things to fill the void left by their daughter’s death.
Wittorff stopped inviting friends over, too ashamed of the mess. Things got worse when Bob fell ill. The night he died, in March 2017, a friend came over to check on Wittorff and saw the condition of the house. “I’m not judging you,” the friend told her, “but we need to help you.”
Vicky Wittorff holds one of the last photos of her youngest daughter, Janelle, who was shot and killed on Mother’s Day in 2002. After Janelle’s death, Wittorff and her husband started buying things to try to fill the void. (BRETT ZIEGLER FOR USN&WR)
It’s estimated that around 2% to 6% of the U.S. population suffers from hoarding disorder, which is marked by an inability to discard items of little use or value. Research suggests the number of older adults living with hoarding disorder is actually higher.
Changes that come with aging – like cognitive decline, downsizing to a smaller living space, or the loss of a spouse, family member or friend – can trigger or exacerbate hoarding behavior, says Catherine Ayers, an associate professor of clinical psychiatry at the University of California–San Diego who’s studied hoarding disorder for 15 years.
Hoarding, in turn, can create significant health and safety risks for seniors. Clutter can cause falls or fire hazards. An inaccessible kitchen can lead to problems with nutrition and food contamination. Medications are easily lost. In severe cases, hoarding can lead to eviction and homelessness.
Through her research, Ayers developed a unique approach to treating hoarding disorder in older adults. Called CREST (Cognitive Rehabilitation and Exposure/Sorting Training), it combines exposure therapy – encouraging someone to face whatever is causing them distress – with what’s referred to as “compensatory cognitive training” to address deficits in memory, concentration, decision-making and problem-solving.
In 2016, through a contract with San Diego County’s Health and Human Services Agency, Ayers created a mobile, in-home program using CREST’s treatment approach. The county’s Older Adult Council, a volunteer advisory group, had identified hoarding as a growing problem that was putting low-income seniors at risk of eviction. Funding for the program came from California’s Mental Health Services Act. Passed by voters in 2004, the act levies a 1% tax on personal income over $1 million. So far, it’s generated about $15 billion for mental health treatment and services.
Over 26 sessions – more if necessary – CREST participants work with a case manager who helps them set goals, create to-do lists and schedule tasks. Several sessions focus on strategies to improve memory and organization. After eight weeks, participants are introduced to exposure training to help them ease into the process of sorting and discarding items. If they need additional assistance, Debbie Lynn, a peer specialist who’s been through the program, will sit with them to provide emotional support and encouragement as they go through the decluttering process.
“They may think we’re going to get in there and be heavy-handed and just throw out their items,” Ayers says. “We don’t do that at all.”
Rather, the process is gradual and participants work at a pace that’s comfortable for them, Ayers says. A workbook that guides them through the program urges participants to “think of your efforts as a lifestyle change and not a ‘quick fix.'”
Gardening is a therapeutic activity for Wittorff. Hummingbird sculptures adorn her garden in honor of her daughter Janelle.
Data from CREST’s first two years underscores the threat hoarding poses to housing stability. Nearly two-thirds of the more than 20 initial participants reported being pressured by others – like property managers or city officials – to clean up their home or apartment. Half said they’d been homeless at some point in their lives or had not had a home of their own, and another 43% said they had nowhere to go or no plan for where to stay if they lost their current housing.
Data also shows how intractable the disorder can be: Roughly half of program participants in 2017 who completed 26 sessions needed more treatment. In 2018, the county received additional state funding that allowed CREST to expand from two clinicians to six.
Ayers says CREST routinely gets referrals from property managers and code enforcement officers. Initially, only people who were uninsured or on Medicaid could participate in the program, though it now can serve Medicare patients as well.
“Many (participants) have eviction notices or 30 days to rectify code violations,” Ayers says, “so we try to figure out a plan to keep a person in their home.” She says all of the CREST participants who were facing eviction prior to joining the program have been able to stay in their homes.
Since hoarders often isolate themselves, CREST staff also coordinates with agencies and organizations that might come in contact with someone in need of help, like animal control and Meals on Wheels.
“We’re all around town giving talks and presentations,” Ayers says. “We flyer all over the place. We do provider trainings.”
Liza, a program participant who asked that only her first name be used, doesn’t remember exactly how she found out about CREST.
“But I should remember,” she says, “because it was like the clouds parted and a ray of sunshine came down.” At that point, she was 59 and living in a part of the county not yet covered by CREST. Staff took down her contact information and said they’d give her a call when she became eligible.
“When they called, I was so excited because it was just so dreadful. I was so stuck, I couldn’t move on in life,” she says.
Liza, now 61, meets weekly with Lynn, CREST’s peer counselor. With Lynn’s help, she’s cleared out her living room, kitchen and a downstairs bathroom. On a recent afternoon, boxes of paperwork were stacked on the kitchen table, awaiting a sorting plan Liza was working on with Lynn’s assistance. There were still her bedroom, garage and two storage units to tackle.
Liza, like Vicky Wittorff, once kept a tidy house. An environmental planner, she prided herself on being organized. “I could open any file and I knew right where things were,” she says.
But after a series of health issues, her mother’s death and a car accident that left her son with a traumatic brain injury, Liza found herself struggling to make decisions and follow through with basic tasks like paying bills. She was the executor of her mother’s estate, left to deal with a house in Arizona and another in Ohio that had been in the family for 200 years. Her mother was a collector – “except she was very neat,” Liza says – and Liza couldn’t bear to part with her mom’s things.
Friends would come over to try to help Liza sort through everything, but she’d become frustrated by their efforts.
“I lost all those friends,” she says. “I just didn’t know why I couldn’t do this. It seems like I should be able to go through stuff and throw some out, put some away. But it was like being in quicksand.”
She says CREST helped her develop a system for discarding items. “They gave me tools so that I would know what to do with stuff when I went through it,” she says.
She remembers the moment when everything clicked. She was trying to decide what to do with a chipped bowl.
“Do I really want to spend my time fixing this little thing?” she recalls thinking to herself. “Do I need it? I’m 61. Do I really want to spend my time that way?”
Making the decision to discard the bowl “was really freeing,” she says.
A statue of an angel, in honor of her late daughter, Janelle, stands outside Vicky Wittorff’s home in Jamul, Calif.
When Vicky Wittorff’s friend put her in touch with CREST, she’d moved out of her house and into a trailer on her property. A leaky roof had led to a mold problem. Phillip Salas, one of CREST’s licensed therapists, first visited Wittorff in October. He took photos of her house so they’d be able to track her progress.
On a recent afternoon, Salas and Wittorff sat at her kitchen table as he scrolled through the photos.
“No light coming in, right?” she reminded him, pointing to a large window that had been almost completely blocked by stuff.
“It was bad,” Salas agreed.
“He saved me,” Wittorff says of Salas, who helped her not only sort through her possessions, but also the grief and trauma that had triggered her hoarding. He brought in a contractor to fix the roof and, through a fire prevention grant program, had San Diego Gas & Electric come out to clear dry brush and vegetation from the property. From there, Wittorff took over, finding people willing to remove the trailer she’d been forced to live in and a broken-down van. She traded a truck for a new staircase for her home.
CREST’s grant runs out in June. Connie German-Marquez, a behavioral health program coordinator with the county of San Diego, says county leaders will need to decide whether to continue the program and how to fund it.
“We do not want to go away,” Ayers says. “People know about us now and we are getting calls and we are doing lots of screens. For us to go away at this time would not be good.”
Stacks in the Corner: One-of-a-Kind Clinic Provides Hope for Treatment of Hoarding Disorder
Climbing the steep gravel path to Ri Parrish’s house, a serene, empty silence hovers above the stark vistas surrounding the property, dotted and perfumed by occasional pine trees.
More than 20 years ago, Parrish, a 66-year-old electronics engineer, built her house almost from the ground up, after purchasing the property when its previous owners ran out of money while remodeling. “I have worked on every inch,” said Parrish. “Every texture was done by my hands.”
When asked why she chose to live out here, among the boulders and brush beyond Pine Valley, a sparsely populated community located in the Cuyamaca Mountains of east San Diego County, Parrish replied, “I was driven to this house by a mission. I’m a very spiritual person, and I felt a connection pulling me out here. When I saw the place for the first time, I just knew I had to live here.”
Inside, the house is airy, with an enormous great room connecting to the kitchen, dining room and living room, all decorated in warm tans and reds. Framed photos of family and friends line bookshelves.
In one corner of the great room, there are tidy stacks of boxes, waist-high and filling an area the size of a small office. They are a hint of why a therapist from UC San Diego Health’s Cognitive Rehabilitation Exposure and Sorting Therapy (CREST) program is visiting Parrish on this sunny December day.
Parrish has been diagnosed with hoarding disorder, and she is in the process of learning how to physically and emotionally let go of those stacks in the corner, which have grown unabated over the years.
Now, in the face of the COVID19 pandemic, people like Parrish are more at risk than ever; those with hoarding disorder are typically already isolated, many suffer from preexisting physical and mental health issues, and panic-buying trends can reinforce hoarding behaviors. Catherine Ayers, a professor in the Department of Psychiatry at UC San Diego School of Medicine and director of the CREST program, believes that this is why the program is so important at this moment in time.
A lifetime of collecting
For Parrish, her hoarding behavior began as a child, as it does for most people. Experts consider hoarding to be a lifelong, chronic condition that gets worse over time without treatment. It can run in families. “My parents came from an age following World War II, so they re-used everything,” Parrish said. “I learned to save and repair things as a kid—people would bring me their radios, remote controls, garage door openers, anything that I could have the satisfaction of fixing.”
But a lifetime of collecting stuff wasn’t a problem for Parrish until 8 years ago when she came out as transgender, and subsequently, went through a divorce. “I was very alienated from all of my surroundings, my wife, my family. And so what else could I do, but hold onto things when nobody else wanted them?” she said. “I could bury myself in a world that was protected by the things I was familiar with. My wife didn’t want to take anything with her, and so I was left with all of this stuff. And that’s an awfully big load to take on by yourself.”
As Parrish rebuilt her life and made new relationships, she struggled with feeling overwhelmed and embarrassed by the clutter in her home. Many people with hoarding disorder frequently find themselves socially isolated, uncomfortable with the idea of having others in their home.
Then, a couple years ago, Parrish ran across a flier for the UC San Diego Health CREST Program and it struck a chord. She signed up and was among the first persons in Pine Valley to receive assistance when the program expanded to include the region.
The CREST Program at UC San Diego Health is the only one of its kind in the nation: an innovative care center dedicated to providing comprehensive treatment to individuals struggling with hoarding disorder, working with people in their homes to help them overcome the challenges associated with the condition. The in-home care and multifaceted approach to therapy, including exposure therapy and executive functioning training, is what makes the CREST program so unique.
“When a referral is made, we’ll go and do outreach with the client—sometimes right in their own home,” said Ayers. “We’ll do an assessment to determine if they have hoarding disorder and if so, we enroll them in the program. We find that people with hoarding disorder have lower scores on executive functioning measures, so they have problems with problem-solving, planning and prospective memory—recalling planned actions in the future. So we go in and teach them skills that will improve their executive functioning, to make it easier for them to make decisions that will support their recovery.
“Then we start the process that actually treats the hoarding, which is exposure to discarding. We use basic exposure therapy principles where clients work on a hierarchy, starting with rooms that are easier and working toward rooms that are harder. Clients go through their possessions one by one, and they learn over time that they can tolerate the distress from discarding possessions. They learn that it becomes easier for them.”
Discarding items with exposure therapy, step by step
Parrish has been in the program for about six months. Her therapist, Philip Salas, a licensed marriage and family therapist with the UC San Diego Health CREST Program, estimates that she’s about halfway through the program.
“At this stage of treatment, we’re on exposure,” Salas said. “During a typical session, we’ll get the boxes of items that Ri wants to go through and create stations—a discard station, a donation station and a keep station. She’ll start going through items and make decisions. I like to encourage her to think out loud as she works. It helps Ri, and it helps me to see where she is in the treatment, and how she’s handling the stress. Our goal here is not to shy away from that distress, but rather to embrace it—the more she embraces it, the better she gets at handling those challenges.”
During a recent home session, Parrish visibly struggles with discarding items, while trying to remain lighthearted about the challenge, bargaining with Salas (and herself) over why it’s important to keep a toothbrush or a disassembled remote control. In many cases, she’s convinced that she needs to have multiples of various items.
She places a small battery tester in the “keep” box, and jokes “I don’t need more than six of’em…I mean, two of them!” She laughs. “We don’t want to talk about quantity right now, because sometimes what I say is necessary has to be…reviewed.”
“Yes,” replies Salas. “Even though you make a convincing case. Remember those water pumps? Where you needed a backup, and a backup for the backup?”
“Well, two of them could go out in the same day!” Parrish counters.
“When I’m going through boxes to filter through what I can get rid of or what I need to keep, everything’s a trigger,” Parrish said. “A lot of these items bring up memories of a good time or a bad time, or something that got broken. And so you just take a box, and put the item in the box, and put something else on top of it, and it goes away for a while.
“Now, I’m being asked to revisit those emotions, and each time, the stress level spikes. Because it’ll be like, ‘Ooh, I forgot all about that. That was a really bad time. Or, I can’t get rid of this because it meant so much.’ And that’s where I need the exposure, the help to confront those things.”
Despite the need for physical distancing, the CREST program has been able to maintain treatment for patients thanks to digital tools, such as Zoom. “Most of our clients are able to use video conferencing tools,” said Ayers. “This is good for keeping them safe, and keeping our therapists safe. We’re even able to continue discarding exposure exercises in this format.”
More than a myth about a messy house
Spending time with Parrish and observing a therapy session makes it clear that hoarding is so much more than a messy house.
“There are a lot of myths about hoarding,” said Ayers. “People think that a person with hoarding disorder is just lazy or messy, or not cleaning up after themselves. Hoarding itself is a genetic condition. It’s not something that someone chooses to have. People with hoarding disorder have a lot of difficulty parting with possessions, and it causes them great distress to have to throw things out. Right now, in the face of COVID-19 and stay-at-home orders, that behavior can be exacerbated by stress, anxiety, depression, and isolation. This is a mental health disorder that requires treatment and it’s not going to get better on its own.”
Over the last several months, Parrish has made notable progress, both in discarding items and in developing new habits and skills to prevent future clutter. She is tracking her progress in the handbook provided by CREST clinicians, a critical component of the treatment program. It’s a place where Parrish can record her feelings and learn new skills, completing “homework” assignments that help her stay on track between therapy sessions. The handbook can also be used after treatment is over, serving as a resource patients can tap to brush up on their acquired skills.
“Ri’s dedication to the program is exceptional,” said Salas. “She never misses a session.” But Parrish still faces a long road. While she has been successful at cleaning out her home, she still has several outbuildings on her property overflowing with belongings.
In what she calls the “barn”, Parrish stores rows of plastic storage bins filled with mechanical, electronic and automotive items. She has an organizational system, but the accumulating objects are beginning to block the aisles and make access to the light switch difficult. This particular session is the first time that Parrish and Salas have ventured inside the barn together, to assess the situation and start discussing a strategy for clearing it out.
On the way to the outbuilding, Parrish’s nervousness is evident; she is eager to make the space more usable, but anxious about the magnitude of the project. As she describes the layout of her belongings, she and Salas discuss goals. Parrish bargains with herself over why she needs to keep certain supplies and items, simultaneously insisting she’s ready to clean the space out, that it needs to be cleaned out.
“I think we can get down to 20 percent of what’s currently here,” Parrish said. “But then I start the process, and I end up saying ‘Well, we can probably go to 50 percent.”
Parrish wants the CREST team to help her get a large dumpster on the property, plus recruit volunteers who can help her more rapidly discard at least half of the items in the barn. In the long term, she hopes the re-opened space and workbench will allow her to continue tinkering on various projects.
Unfortunately for Ri, her big spring cleaning event will have to wait until the COVID-19 situation has calmed down, but the CREST team is optimistic that these sessions will be available in the future, if they’re able to maintain the program.
Working hard at this challenge
“Our goals for Ri are that she continues to work on the things we’ve been modeling with her, that she can continue this process by herself and make these decisions on her own while monitoring her own stress levels,” said Salas.
After treatment completion, CREST clients like Parrish can participate in aftercare programs to maintain the skills they’ve learned, or receive “booster sessions” if they find hoarding symptoms returning.
Parrish said the program has changed her personality and life. “My energy level is up. I’m much more organized. This program has given me the tools and structure I needed to work hard at this challenge. It’s very rewarding to be successful and have it acknowledged by someone outside of yourself. It’s very satisfying, and I want to continue.”
Right now, Parrish’s ability to continue with the program is jeopardized by budget challenges. The CREST clinic may be forced to close its doors this summer. “Our funding is drying up,” said Ayers. “We had been working to secure the resources to keep the program running, but unfortunately that money is being reallocated to support COVID-19 efforts. We’re now in more of an emergency mode, trying to make the program sustainable by forming more community partnerships.”
“San Diego saw that hoarding disorder was a real problem for some members of the community and they took action,” Ayers continued. “This treatment is evidence-based and it works. This is something that can be treated, and we have the resources to do it. Now more than ever, we need to take care of this very socially isolated and vulnerable population. It’s going to be important to get creative, think outside the box, and sustain programs like this for hoarding. If we’re not able to provide treatment, these people will be left with nothing.”
Parrish has a message for those who may be feeling overwhelmed by hoarding symptoms. “I want other people to know that you can be brave. And that bravery comes from taking that first step. Recovering from hoarding can feel like a journey where you can’t see the end, but at the CREST program, there is someone to help you take those first steps.
“I didn’t have much hope before. The stacks of boxes in the corner were like a physical manifestation of the way I was handling my feelings. I didn’t want to acknowledge or deal with all of my items because I didn’t want to deal with the emotions that came along with them. Eventually, the stacks grew too large to ignore, and now I’m not afraid to deal with them. Now, there is a lot of hope.”
IBSTF Offers The Following Program
Cognitive Behavioral + Exposure Therapy
for Hoarding Disorder (CBETHD)
- Every participant will receive a full assessment to determine their needs. These can be issues with acquiring and collecting, or just having a multitude of items collected throughout their lifespan.
- Through cognitive behavioral therapy and other trainings, participants will learn new ways of doing things and develop the ability to overcome years of maladaptive behaviors.
- Participants will learn ways of utilizing the abilities and tools that they ready have, in order to tackle acquiring, and excessive clutter among other learned and related genetic behaviors.
- During sessions, participants will learn to tolerate distress, a key to overcoming HD.
- Exposure Therapy will be one of the parts of the treatment that deals with avoidance, which in many cases is easier to avoid the problem than confronting discomfort.
- Treatment varies on a case by case, as no case is the same. Therefore, every case is tailored to each participant based on their individual circumstances. But on an average count with anywhere between 3 months to 6 months of weekly therapy sessions of 60-90 minutes.
- Participants will be provided with handouts, manuals, and weekly home assignments that build on each other and prepare the participant to be able to tolerate the discarding of excess of items.
- Psychoeducation is provided as needed and in most cases is provided in every session.
- Due to the limited spots available it’s very important for participants to attend every session and there is a free orientation session.
- All therapists assigned to treating hoarding disorder at IBSTFC have years of experience and thousands of hours treating hoarding disorder.
- After treatment there are support groups that meet on a bi-weekly basis on a rotating schedule.
- All participants will receive an Android tablet with proprietary software or a leather agenda to keep track of their progress and home assignments.
Please Complete the Following Form for Further Information or to Schedule an Appointment call (619) 387-8272
The DSM-V defines hoarding as “the persistent difficulty discarding or parting with possessions, regardless of their actual value.” Hoarding is a behavior in which there is not a singular answer to why the individual has difficulty managing and discarding possessions. A person with hoarding disorder may accumulate an excessive number of items but will experience distress at the thought of parting from some or all the items. The behavior can look different person to person. Hoarding, in general, can have a strong impact on the individuals themselves, their loved ones, and neighbors too. Yet, an individual may not identify that there is a problem or reason for concern.