Recognizing and Addressing Hoarding as a Significant Senior Health Concern

Health of the Public
Recognizing and Addressing Hoarding as a Significant Senior Health Concern
(Photo courtesy of Wikimedia Commons)

Monika Eckfield, assistant adjunct professor in the UCSF Department of Physiological Nursing and associate specialist in the UCSF Department of Psychiatry, had heard news reports of pack rats – people living with enormous amounts of accumulated material.

But in the early 2000s, when she became a nurse and a case manager providing services to older people and their families, she was startled to find some of her own clients living in homes so cluttered that it could be difficult to walk in them. One of her clients had multiple sores resulting from falls caused by the clutter. Another kept old medications in a shoebox alongside current ones. Eckfield began to realize that this wasn’t just a clutter problem, but also a health problem.

Her interest in the topic led her to the PhD program at UCSF’s School of Nursing, where mentor Meg Wallhagen encouraged her to study hoarding as a health issue. In 2008, while still a student, Eckfield was invited to join the San Francisco Task Force on Compulsive Hoarding (a joint project of the city’s Department of Aging and Adult Services and the Mental Health Association of San Francisco), which she now co-chairs. In 2009, the task force issued a report that made recommendations for improving and coordinating existing services and implementing new ones, and it has since been used as a resource for cities across the US and worldwide.

Hoarding’s Effects on Health and Well-Being

Hoarding, which studies estimate affects between 2 percent and 5 percent of the population, is characterized by the excessive accumulation of things and difficulty discarding them. The behavior may focus on one type of item – such as books, papers or clothing – or encompass anything and everything. While many of us have more things than we need, for hoarders clutter in the home becomes a barrier to normal activity.

Closets are filled to overflowing. Beds are piled with books or magazines and can’t be slept in. One of Eckfield’s research subjects had a home so filled with papers that she used her stove as a desk and did her cooking in the microwave. Pest infestation, fire risk, difficulty cleaning and deferred maintenance are common problems in the homes of hoarders, and renters with hoarding behavior are often at risk for eviction and homelessness.

Monika Eckfield Eckfield’s PhD thesis, a qualitative study of 22 adults age 65 and older with hoarding issues, found that while hoarding behavior often begins before adulthood, it seems to become more problematic as people age. It’s unclear from existing research if the behavior actually worsens or if an individual’s ability to cope declines, but hoarding seems to have a greater impact on older people.

People with hoarding problems are often undertreated for the medical problems that can accompany aging, says Eckfield. Sometimes, this is because hoarders may need a home health aide but don’t feel comfortable letting anyone into their homes; in other situations, the hoarder may lack the organizational skills to get to a doctor or to follow through with recommended treatment. The crowded physical environment in a home also can contribute to falls, and some older people with hoarding problems cannot use necessary equipment, like walkers or wheelchairs, because there simply isn’t room. Medication errors are also a risk when old medicines are hoarded and confused with current ones.

Interventions for Hoarding

Until recently, efforts to address hoarding have generally focused on massive cleanouts of individual hoarders’ homes. But this doesn’t address the underlying psychological problem, and too often the behavior simply resumes and continues until it reaches another crisis point. “For some people, it’s every six months,” says Eckfield. “It’s very traumatic for them. They need effective intervention.”

The correct intervention depends on the type of hoarding behavior. Although there isn’t yet much research to confirm it, there appear to be two subtypes among people with hoarding behaviors. Some evidence suggests that one group has difficulty with executive functioning: decisionmaking, planning and following through with plans. For these individuals, cognitive behavioral therapy can be beneficial. One area of ongoing research that has shown promise, according to Eckfield, is the use of an intervention based on cognitive rehabilitation of brain-injured patients, aimed at reteaching them executive functioning skills.

For the other subtype – those with impulse control problems and addictionlike behavior – cognitive therapy seems less effective. But as with substance abuse, support groups of peers who can provide a nonjudgmental and safe environment of support and encouragement can help.

Improving organizational skills can also help, and Eckfield points to a multidisciplinary group, the Institute for Challenging Disorganization, that provides education and resources to professionals and individuals dealing with hoarding, including access to professional organizers who offer services targeted at helping people with hoarding issues get better control of their environment.

Ongoing, targeted case management is essential and should be focused on keeping clients independent and safe at home while helping them make progress at their own pace to improve safety and address their medical needs, says Eckfield. She is hoping to secure a grant to work with colleagues at UC San Diego to investigate case management programs that help people with hoarding disorder continue living in the community.

Eckfield also is working on another project with physician Carol Mathews, director of the Obsessive Compulsive Disorders Clinic and co-director of the Anxiety Disorders Clinic at UCSF, and Scott Mackin, a clinical neuropsychologist with the Over 60 Program at UCSF. They are analyzing neurocognitive data from hoarding research participants that may help differentiate the two subtypes of hoarding behavior and lead to more effective interventions that can be targeted to a client’s particular needs.

Reducing Impact at the Community Level

When she became part of the San Francisco Task Force on Hoarding, Eckfield enlisted the aid of Wendy Max – who co-directs the UCSF Institute for Health & Aging and is an adjunct professor of medical economics at UCSF – to put together a picture of the economic costs of hoarding in San Francisco. They determined that hoarding and related events (such as evictions and fires) cost individuals, county agencies and landlords an estimated $6 million per year, the bulk of which was spent on cleanouts, repairs and maintenance that had been deferred on homes of people with hoarding problems.

The 2009 task force report found that spending more money on early intervention could result in long-term savings, better quality of life and improved health outcomes for people with hoarding issues. The report included a list of recommendations for developing new services and building on existing programs that are potentially effective but lack capacity to serve many people. Among them are developing crisis teams to respond to reports of hoarding, increasing access to treatment that can take place in an individual’s home and offering training for therapists, families, landlords, agency staff and others involved in remediating hoarding problems.

One of the key recommendations, says Eckfield, is coordinating services. A hoarding case can involve a multitude of individuals and agencies, all of which look at the problem through a different lens, and the task force is currently evaluating the various tools used by different agencies to assess hoarding. The goal is to identify which one is most appropriate for helping agencies take a “harm reduction” approach by assessing risk in the same way and prioritizing interventions to ensure that the most serious problems are addressed first.

San Francisco has also begun to implement several other recommendations of the task force. Through its Institute on Compulsive Hoarding and Cluttering (ICHC), the Mental Health Association of San Francisco (MHASF) offers training programs for families affected by hoarding, and it has put together support groups, as well as a peer-response team of recovering hoarders who can offer practical support aimed in part at keeping people in their homes. MHASF also sponsors the International Conference on Hoarding and Cluttering, a multidisciplinary event focusing on research, education and self-help training for clinicians, researchers and those impacted by hoarding.

Recognizing a Global Problem

It’s only recently that hoarding has begun to be recognized as a discrete disorder. Despite its prevalence, it hasn’t been listed in the Diagnostic and Statistical Manual of Mental Disorders, but that may change when the new edition is published in 2013. For the first time, criteria have been proposed for diagnosing hoarding disorder, which would make it easier to identify individuals suffering from it.

Eckfield hopes it also will pave the way for more research. Until recently, it’s been “live and let live,” as she puts it, until people get older, and what was once seen as eccentric behavior starts interfering with an individual’s ability to manage the activities of daily living. Further research could shed more light on the etiology of the disorder and lead to more effective intervention.

That’s important, according to Eckfield, because hoarding affects so many people. “It isn’t just an American problem or a disorder of affluence,” she says. “So much of this is common to all of us.”

Comments

Ok so what do you do when the person hoarding is 86 years old and has been doing this her entire life. She is now handycap and lives in my home, and you can't get around in her room. This is a huge health issue in the home and she is handicap????
The situation you have described is surprisingly common-- but that doesn't make it any easier to resolve! The first place to start is with a sincere, non-judgemental conversation about the volume of belongings she has accumulated and the ways that may be impacting her health and safety and that of others living in the home. Are there a few reasonable and attainable goals that you can agree on together, such as clearing enough of a walkway for her to get to her bathroom safely? Or widen pathways so that her walker or wheelchair can pass through more easily? She doesn't have to get rid of things to make her room safer to be in-- it could be done by organizing or stacking things in a different way. The first step is to meet some goals that represent an improvement to you both and build a trusting relationship and dialog around your concern for her health and well being. If these first steps are successful, you can discuss whether or not there are some items that she would be willing to part with-- not precious items like family photographs, but perhaps some newspapers that are over a year old, or extra clothing that she may be willing to part with if she knows they're going to others who would really benefit from them. My advice is to not push too hard-- let her make the decisions about what to keep and what to discard. But you can let her know you're concerned and would like to make it easier for her to get around in her room and maximize her independence, well-being, and comfort. Often people have told me they felt very anxious about letting go of items, but after they have done it, even just letting go of a few things, they have enjoyed having more space and felt a bit lighter and freer because of it. A very helpful book you might check out is called Digging Out: Helping your loved one manage clutter, hoarding and compulsive acquiring by Dr. Michael Tompkins and Dr. Tamara Hartl, two Bay Area psychologists. It's available on Amazon and through your local bookstore. I wish you all the best- and thank you for posting your question! - Dr. Eckfield
My mother (69) has had several strokes in the past. Just last night she argued with me passionately about how badly she needed a pair of shoes for a specific purpose. 30 minutes later she then told me she already a brand new pair of that exact shoe, she just wanted to have a second color. Her interests have always been clothes and arts and crafts. In the last few years her behavior has significantly changed to the point she will buy many articles of clothes and arts and crafts, then claim she doesn't have what she needs and buy more. Because she lives in another state I was not aware it had gone to this level. She literally has 30 watches, 12 pairs of the same type of tennis shoe, boxes of unused casual and dress shoes. It is physically impossible for her to work in her craft room because it looks like a Hobby Lobby in there...most of the things completely unopened. Do I need to pay someone to provide her treatment, or might there be support groups available?
I know how unsettling and frustrating exchanges with a parent, like the one you describe, can be. You are certainly not alone. It’s tough to be out of state too, and to want to help and support your parent. I have couple of ideas you could consider discussing with your mom. The first one has to do with your mom’s history of having strokes and your comment that her behavior having changed significantly. It may be that your mom’s strokes are affecting part of the areas of her brain that are involved in what’s called “executive functioning”—the areas that help you with decision making, planning, and judgment, among other tasks. These brain functions take place in the frontal lobe, right behind your forehead, and there are case reports of folks with “fronto-temporal dementia” or FTD who rather suddenly start collecting items and amassing particular types of items when they did not have these types of collecting behaviors previously. I’m not suggesting that your mom is necessarily developing FTD, but it could be that her multiple strokes have impacted her frontal lobe and is causing some impairment in her executive functioning, contributing to the impaired judgment you describe related to her buying more clothes, shoes and craft supplies than she needs or has room for in her home. It may be something to discuss with her neurologist, and if her state has a center like the Memory and Aging Center (MAC) at UCSF, the experts there may be able to provide her with a very valuable consultation and evaluation. UCSF’s MAC is a part of a nationwide network of Alzheimer’s Disease Research Centers, which specialize in understanding brain function and impairments. You can search for a center near your mom by going to http://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers. If her change in behavior is linked to her strokes, then the behavior-modification strategies that might be helpful to her may be different from those that would be recommended for someone who has not had strokes, but who has Hoarding Disorder. The second idea has to do with your question about helping her finding treatment and support groups. If she is interested in working with a mental health counselor to better understand her behaviors and to figure out ways to change her behaviors, one of the best places to search for a therapist who understands hoarding behaviors is through the Obsessive Compulsive Foundation’s website at www.ocfoundation.org. For many years it was thought that hoarding behaviors were a component of obsessive-compulsive disorder (OCD)—but we now understand hoarding disorder as a separate issue that can sometimes (but not always) be accompanied by anxiety, depression, and other mental health issues. Still, the OCD Foundation has remained a strong, reliable hub of information and resources about hoarding disorder and you can search for a therapist in your mom’s area who has experience assessing and treating hoarding behaviors. That would be an excellent starting point for finding out about support groups in your mom’s area as well. In San Francisco, the Mental Health Association of San Francisco (MHASF; www.mentalhealthsf.org) has a wide range of support groups, peer-led and therapist-led treatment groups, and a wealth of other local and regional resources for those with hoarding disorder. There is also a nationwide group called “Clutterers Anonymous” that you can find through an internet search. They hold peer-led support groups in communities across the country and are based on the 12-step support group model that’s been so successful for individuals who are managing other mental health concerns, such as Alcoholics Anonymous and Over-Eaters Anonymous. Finally, if you are in the San Francisco Bay Area, you may want to consider attending the Annual International Conference on Hoarding and Cluttering, sponsored by MHASF that is being held in San Francisco on November 6 and 7, 2014. It’s two days of useful information from researchers, clinicians, community-based service providers, individuals with hoarding disorder and their family members, and it may provide you with additional ideas on how to best support your mom’s independence and well being. Good luck and thank you for sharing your situation with all of us. – Dr. Eckfield
My mother in law is almost 65 and has a terrible problem with hoarding and gambling. She still works full time and makes good money, but she is irresponsible about paying her bills. Her daughter used her for all she is worth which has left her with a probable foreclosure in the spring, no electricity, no heat and no water. Since we live in the northern midwest, we told her she really needs to move out now before winter. She has health concerns as well. She makes too much money for assistance, but she won't work with us to help her manage her money more responsibly. We do not have money to help her get electricity back on and i am stressing out that she will end up here during winter. I really don't think i could handle her being here. I go nuts the once week she is here to do laundering, showering and using our computer. She keeps buying lottery tickets $20+ a day and buys cheap crap and expired reduced cost gifts for everybody meanwhile doesn't pay mortgages (she has 2 on her was-all-paid-off farm, but daughter needed cash so she got 2 mortgages at total value of house/land) and unfortunately they delayed the hearing until march for the foreclosure. We are a young family that has just gone to 1 income so we can focus on raising and homeschooling our little ones. Is there any advice or resources that you can suggest? Thanks in advance for any advice.
Your situation points out several of the complications of having a family member with hoarding related problems. One of the most significant things is the strain that these issues put on the relationships among family members—one person may see things one way, and advocate for one set of solutions, while another family member may see things very differently and may opt to take another path. One book specifically written for family members (but which is helpful to friends, therapists, and other health and human service providers as well) is called Digging Out: Helping your loved one manage clutter, hoarding & compulsive acquiring by Dr. Michael Tompkins and Dr. Tamara Hartl. One of the hardest parts of having a family member who makes decisions that result in detrimental consequences is accepting that they, as adults, have the right to make those decisions for themselves. However, there are some things you can do to help. If there are health and safety risks present in the home—such as no electricity, heat or water—you can inform the local health department and request that they investigate potential health and safety code violations. This may sound punitive, but in many cases the combination of an external pressure, such as legitimate health and safety concerns from a code enforcement agency, in combination with non-judgmental support in the home from someone familiar with hoarding disorder can result in slow, steady, meaningful changes if the resident is willing to participate in these efforts. Because hoarding disorder is now recognized as a psychiatric diagnosis, it qualifies as a reason to ask for reasonable accommodations—so if the health department identifies code violations, you can ask them to provide more time for the resident to meet the code requirements than they would normally allow someone to resolve the violations. Also, you mentioned that your mother in law is lucky enough to have some income—meaning that she doesn’t qualify for some assistance programs aimed at low-income individuals—but she may be able to pay for help from one of the many professional organizers who specialize in working with individuals with hoarding disorder, ADHD, and a range of other “organizational challenges”—these specialized professional organizers can be found through the Institute for Challenging Disorganization (https://challengingdisorganization.org ). My last bit of advice is to discuss with your wife what you both are willing—and unwilling—to do for your mother in law. This can be a tough conversation, but being clear that you care about your mother in law, but cannot be responsible for the decisions that she makes or their consequences may help your own family weather these situations a little bit better. I wish you all the best, and thank you for sharing your family's situation with us. - Dr. Eckfield
The hardest part about my mother's situation is the condition of her house has kept us all away, including her granddaughters. I have, on several occassions, completely "gutted" her home and it looked amazing, but within a few weeks, it was right back. It is so hard to put so much effort into something and it feels rather insulting. She spends her days "organzing and cleaning" yet the house never looks pulled together in the least. My sister is also acting exactly the same as my mother. It has put so much stress on me. I am responsible to have every holiday at my home, because she is too embarassed to have us in. It has gotten so bad, she wouldnt even let me in to use her bathroom! I just don't know what to do anymore. I set her up with a cleaning woman when I had the house in perfect shape and she cancelled it, saying that cleaning woman want "very little around to do their jobs..and I am not getting rid of all of my pretty things" This has put such stress on me.
What about when hoarding becomes a significant safety issue? In particular, a family I work with is using a wood stove to heat their home. The home is extremely cluttered; pathways, piles, blocked doorways. This family is very resistant to any change even when safety is main issue that I've addressed with them. Their daughter and granddaughter live on the second floor and are at risk as well. Other agencies have tried to work with this family as well but to no avail.

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