Hoarding Behavior in the Elderly Henriette Kellum

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2012 Hoarding Behavior in the Elderly Henriette Kellum

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Recommended Citation Kellum, H. (2012). Hoarding Behavior in the Elderly. Age in Action, 27(3), 1-5.

This Article is brought to you for free and open access by the Virginia Center on Aging at VCU Scholars Compass. It has been accepted for inclusion in Case Studies from Age in Action by an authorized administrator of VCU Scholars Compass. For more information, please contact [email protected]. Case Study Hoarding Behavior in Research on hoarding behavior lifestyle choice nor the result of the Elderly began in the early 1990s and has unwillingness to keep a tidy envi- led to widespread public awareness ronment. Instead, it appears to be on the topic. Consensus is that the result of complex medical and by Henriette Kellum, LCSW approximately two to five percent mental health factors. Hoarding was of the general population in the previously thought to be a behavior Educational Objectives United States has a hoarding condi- related to Obsessive Compulsive tion. A recent study found that the Disorder (OCD) and Obsessive 1. Identify the medical and mental onset of hoarding behavior is most Compulsive Personality Disorder health factors that contribute to common in adolescence, but that (OCPD). Experts now believe it to hoarding behavior. the severity increases with each be unique and separate from other 2. Describe the unique aspects of decade of life (Ayers et al., 2010). neurological and psychiatric disor- hoarding in the elderly. Results from a Johns Hopkins study ders, yet often co-existing with 3. Examine intervention and treat- show that hoarding behavior is another mental illness. Genetic and ment strategies. more prevalent among older adults neurobiological studies have found (Samuels et al., 2008), and a study that hoarding behavior may be a Background of hoarding complaints to a Massa- result of genetic differences or chusetts Health Department found brain injury (Saxena, 2007). As the older population in the Unit- that 40% of individuals referred Approximately 80% of persons ed States increases, so, too, do the were elderly (Steketee, Frost, & who hoard grew up with a family numbers of older adults who hoard. Kim, 2001). As our aging popula- member who hoards, and gene The impact of hoarding behavior on tion rapidly increases, so will the research has shown a positive cor- the health and safety of older indi- number of older adults for whom relation between hoarding behavior viduals and the community can be hoarding is a problem. and a unique pattern on chromo- significant, so are we prepared? some 14 (Samuels et al., 2008). Hoarding is defined as the acquisi- Medical and Mental Health One study of nine patients who tion of and failure to discard a large Factors of Hoarding experienced brain damage found a number of possessions, living correlation between the location of spaces so cluttered that they can no Too often persons who hoard are the damage and hoarding behavior longer be used for their intended thought to be lazy, choosing to live (Anderson, Damasio & Damasio, purpose, and significant distress. in squalor. They are often blamed 2005). Mental illnesses that often When these three elements exist, for the behavior, as if they have co-exist with hoarding behavior hoarding is considered to be a “dis- complete control over it. However, include psychotic disorders such as order” (Frost & Hartl, 1996). hoarding behavior is neither a schizophrenia, degenerative brain

Inside This Issue:

VCoA Editorial, 6 ARDRAF 2012 Awardees, 10 Social Security, Income, Age, 16 VDARS Editorial, 7 Person Centered Care, 12 Calendar of Events, 18 Memory and Aging, 9 Aging & Transit Program, 14 Walk to End Alzheimer’s, 20 disorders such as dementia, obses- can no longer keep up with the The challenge for the service sive compulsive disorder, traumatic organization necessary to maintain provider is to determine which brain injury, bipolar disorder, intel- order. The Alzheimer's Association strategies will be most helpful in lectual disabilities, Asperger’s syn- (2012) estimates that 13% of people any given case. drome, and attention deficit disor- over the age of 65 develop demen- der. A common characteristic of tia; of these, approximately 20% Treatment research has focused on hoarding is impaired executive exhibit hoarding behavior (Hwang Cognitive Behavior Therapy (CBT) function. Executive function is the et al., 1998). The death of a spouse techniques and medication. Some brain’s ability to process informa- who helped attenuate a hoarding positive results have been noted tion, which includes the ability to problem can cause the problem to with these treatments, but clients organize thoughts and activities, surface and place the hoarder at risk must be willing participants and be prioritize and concentrate on tasks, for the first time. There is a higher able to be motivated to work on use time efficiently, categorize prevalence of hoarding behavior their problem. CBT is an evidence- items, and make decisions. In addi- among those who are single and based psychotherapy developed by tion to seeing executive function socially isolated. Families often Aaron T. Beck, M.D. in the 1960s impairment in people who hoard, it have made numerous attempts over for the treatment of depression. is also often seen in the neurobio- the years to offer assistance only to Since then, its use has expanded to logical conditions listed above. The have their clean-up efforts return to treat a myriad of other psychiatric connections among these various previous conditions, and so, they conditions. Rather than focus on the neurobiological conditions, hoard- give up. influence of early life experiences, ing behavior, and executive func- as is the case with psychoanalytic tion impairment are as yet unclear. Treatment and Intervention therapies, CBT focuses on the present with the goal of alleviating Special Aspects of Hoarding There is no cure for hoarding symptoms, including changing in Older Adults behavior, but a number of treatment behaviors. CBT takes the approach and intervention strategies have that behaviors, thoughts, and emo- As the severity of hoarding increas- demonstrated some success. The tions affect one another, and that a es with each decade of life, a partic- first factor is the great variability of change in one can positively influ- ular concern is the increased vul- characteristics among those who ence another. In an effort to help nerability of older persons who hoard. If placed on a continuum, people who hoard, researchers Frost hoard. Years of hoarding can result those who exhibit good interperson- & Steketee adapted CBT for hoard- in overwhelming amounts of “stuff” al skills, cognitive ability, absence ing clients. In 2007, they published that increase risk of falls. Fearing of psychosis, awareness of their a guide and workbook for therapists discovery by authorities who might hoarding, and motivation to change and clients titled “Compulsive condemn their homes, older hoard- their situation would be at one end, Hoarding and Acquiring” (Steketee ers may not allow workers into while those who exhibit psychosis, & Frost, 2007). Unique to CBT their house to make repairs. Conse- dementia, physical frailty, social adapted for hoarding is the aspect quently, there are often broken toi- isolation, denial about their hoard- of home visiting. Because many lets, stopped up sinks, and structur- ing, and an unwillingness to accept hoarding clients minimize or deny al damages that produce conditions help would be placed at the other. the extent of their hoarding behav- that are hazardous and unsanitary. Similarly, some environments are ior, this adapted treatment empha- When downsizing after retirement, livable and mildly cluttered, while sizes education about hoarding and some may be unable to part with others are hazardous and uninhabit- includes motivational interviewing belongings or to envision the more able. To tailor services to clients strategies to help engage the client limited space they are moving into, who have such varied characteris- and motivate him/her toward thereby overfilling their new envi- tics, a variety of strategies and change. Sometimes the educational ronment. Some older persons devel- resources must be available. What aspect is handled in groups, which op hoarding behavior as a sec- is helpful with one client may be has the added benefit of clients' ondary symptom to dementia and completely ineffective with another. feelings being supported by others

2 with similar problems. The thera- tions that have been effective in It should not be forgotten that per- pist and client approach the task of some cases are those offered by sons who hoard have the legal right sorting and de-cluttering together, professional organizers and private to refuse intervention and treat- so that the client can experience care managers. These service ment. Based on existing property exposure to personal items and providers frequently work in col- violations, fire and code enforce- receive helpful strategies to make laboration with mental health pro- ment authorities may take action decisions about them. Items that fessionals to assure that the client‘s against a client’s wishes by con- are less meaningful to clients and, mental health needs are not over- demning the property or ordering therefore, easier to discard are the looked while there is such intensive clean up. When property conditions first to be sorted, as this helps the focus on cleaning up their environ- do not warrant such action and the client become sensitized to the ment. Additionally, “Hoarding client refuses services, no further process, making it easier to Task Forces” involving a multitude intervention is possible. The only approach more challenging items of agencies have formed in many exception is when a client is inca- later on. Thoughts and perceptions jurisdictions and have been helpful. pacitated and a court appointed about items are challenged, so that These are particularly prevalent in guardian or conservator can make clients can let items go that they public agencies when a property decisions on a client’s behalf, formerly could not. Reducing may have code and fire violations including decisions regarding acquiring behavior is another or a client’s level of self-neglect clean-up. Most often a guardian important focus of treatment. Expo- meets criteria for involvement from and conservator are appointed only sure to venues and items where a county’s Adult Protective Ser- in those cases where there is anoth- clients routinely acquire and help- vices program. With multiple agen- er condition present beyond hoarding clients experience and “sur- cies engaged in these task forces, ing, such as dementia, intellectual vive” not acquiring those items is the focus can be on having property disability or a psychotic disorder another useful CBT strategy. clean-up for the safety of the indi- and impairment. These are often vidual and community, as well as the clients who are referred to Adult To participate in CBT, a person planning and caring for the needs of Protective Services for self-neglect. must have the cognitive ability to the individual. Whatever the combi- Respecting the individual's right learn new information and the sta- nation of services that is put togeth- and desire to be independent and mina to follow through with home- er, in all cases it is imperative that self-sufficient, while protecting him work assignments. Homework there be a constant and supportive or her from self-neglect and harm, might include writing down goals, person who can develop a trusting together create an ethical challenge making lists of the importance of relationship with the client, gauge for those called upon to intervene. items, sorting items in the home the client’s readiness for an inter- and bringing items to sessions. vention, and anticipate the client’s Case Study #1 Treatment may take months and by response to it. Too often an inter- itself may not be sufficient to tackle vention may involve a major clean- Mr. R. first came to the attention of very severe hoarding environments up, but, this completed, services his local Fire Department when a and behavior in a timely way. Cog- discontinue. The focus in those neighbor complained about the nitive Behavior Therapy strategies, cases is on the property rather than mounds of trash she had glimpsed however, can be effective and both the person and the property. through his doorway as Mr. R. should be considered for clients at These clients need a long term rela- entered his home. Besides the different points during the interven- tionship with a trained professional neighbor’s concern, no-one suspect- tion process. There is some indica- who can help them through the ed that Mr. R. had a problem. He tion that medication can be helpful, cleanup phase and help develop a was a bright, articulate 69 year old and a careful mental health evalua- maintenance plan, which may gentleman who had retired from his tion is always needed in order to include motivating, monitoring, federal government job four years assess for treatable mental health organizing, and regular housekeep- earlier and was volunteering in the conditions that occur along with the ing services. community for a local charity that hoarding behavior. Other interven- provided meals to shut-ins. A staff

3 person from the Fire Department R. refused ongoing mental health or nizer and to continue work with the visited him but was unable to inves- case management services, as he therapist on a twice a week basis. tigate the complaint due to Mr. R. felt they were too expensive and he With Mrs. S. present, the profes- not allowing him entry into his stopped taking his medication. sional organizer and Mr. S. home. The Fire official was able to Some years later a repeat interven- removed all but 50 boxes of her persuade Mr. R. to meet with a tion took place. This time, in addi- craft supplies. A storage unit was social worker from Adult Protective tion to his hoarding behavior, there filled with some, but many needed Services who evaluated Mr. R. and was evidence that Mr. R. had early to be given to charity or otherwise found him to be competent and able stage dementia. At that point he disposed of. The process caused to refuse services. Over the next 10 was evaluated by a psychiatrist who Mrs. S. to become severely years a complaint about Mr. R.s found him lacking the capacity to depressed and angry; she talked hoarding behavior was made manage and safeguard his finances. about having thoughts of suicide. approximately once every two It was discovered that Mr. R. had The completion of the process and years. Complaints included refer- lost approximately $25,000 after her therapist’s help caused her ences to a car that was so stuffed falling for a scam. The court depressive symptoms to lift and she full of things that it was unsafe to appointed a conservator. There was began expressing feelings of excite- drive, and rodents on the property. now a mechanism in place to pay ment about the upcoming move. To With each complaint services were for private care management which help prevent a recurrent hoarding offered to him, and each time he Mr. R. accepted. With this ongoing situation, Mrs. S. continued treat- refused. CBT was not an approach help, his situation stabilized. Mr. ment after her move. Emptying the used with Mr. R. for a number of R’s environment, though still clut- temporary storage facility was her reasons. He saw attempts to help tered, remained safe and functional. first goal. Her task was to bring a him as unwelcome interventions box of items to her session during which he did not want. He exhibit- Case Study #2 which all items in the box were ed no motivation to change his sorted into categories. With her behavior, a necessary component of Mrs. S. was 73 years of age when therapist's help, she established four CBT treatment. He continued to her husband brought her to a mental categories in which to sort items: present as cognitively intact and health therapist who suggested trash, recycling, donating, and competent to refuse services. When CBT treatment. Mr. S. had been items to keep. Although the items Mr. R. was not seen at his volunteer unable to persuade his wife to dis- were forgotten when packed up, she job for several days, a request was pose of her large collection of craft experienced anxiety when seeing made of police to check on his wel- supplies so that they could sell their them again and had difficulty plac- fare. Police found him unconscious home. The couple had made a ing items in any of the categories in a corner of his bedroom where he mutual decision to move into a that were not “items to keep." had landed after sliding down a pile home in a retirement community Using a CBT strategy to change her of papers. Mr. R. was hospitalized, that was one fifth the size of the thinking about items, however, she received treatment for an infection home they were leaving. Mrs. S. managed to dispose of more and of both legs, and had his home con- had made no progress during the more things as treatment pro- demned by the fire marshal. While six month period set aside to get the gressed. One item that was particu- in the hospital, he was diagnosed house ready for sale. Deadlines for larly difficult for her was a bottle of with bi-polar disorder and placed the sale of their current home and bubble bath that she had purchased on medication. Social workers move to their new home were fast when her daughter was a toddler 30 helped Mr. R find temporary hous- approaching. Mrs. S. acknowledged years earlier. When the therapist ing and engage the services of a that she had a problem with exces- asked how keeping the bottle would professional organizer to help him sive buying and difficulty getting help her reach her goal of emptying clean out and organize his belong- rid of things; however, she could the storage container (it would not) ings. After some house repairs, the not make a plan to reduce her or if she would use it during the Fire Marshall allowed him to move belongings. She agreed to engage next five years (she would not) or if back in. Once the crisis passed, Mr. the services of a professional orga- she could imagine a child in a shel-

4 ter enjoying it (she would like that), requires availability of profession- dementia. A preliminary report. she was able to let go of it. Repeat- als who are trained in dealing with American Journal of Geriatric Psy- ing this process with items over and hoarding behavior. Creative ways to chiatry, 6(4), 285-289. over again sensitized her to the help those without sufficient funds process and allowed her to make need to be found. Samuels, J. F., Bienvenu, O. J., decisions much more quickly as Grados, M. A., Cullen, B., Riddle, time went on. Mrs. S. also agreed to Study Questions M. A., Liang, K. , Eaton, W. W., & take medications prescribed for Nestadt , G. (2008). Prevalence depression and Attention Deficit 1. What medical and mental health and correlates of hoarding behavior Disorder, which had the effect of factors contribute to hoarding in a community-based sample. making her more focused during behavior? Behavioral Research and Therapy, treatment sessions. She was able to 2. If executive functioning is 46(7), 836-44. allow a housekeeper to come once a impaired, why might that cause week to help with keeping things hoarding behavior? Saxena, S. (2007). Is compulsive organized and uncluttered. She 3. What challenges are more likely hoarding a genetically and neurobi- agreed to these services on a long for older persons who hoard, as ologically discrete syndrome? term basis to prevent a recurrence compared to a younger population? Implications for diagnostic classifi- of the prior over-filled and disorga- 4. What principles of Cognitive cation. The American Journal of nized state of her home. Behavior Therapy (CBT) help to Psychiatry, 164(3), 380-84. address hoarding behavior? Conclusion Steketee, G., Frost, R. O., & Kim, References H.-J. (2001). Hoarding by elderly Hoarding behavior can have signifi- people. Health and Social Work, cant impacts on the health and safe- Alzheimer’s Association. (2012). 26(3), 176-184. ty of older hoarders. To address Alzheimer’s Disease facts and fig- hoarding behaviors, individuals, ures. Alzheimer’s & Dementia, 8(2), Steketee, G. & Frost, R. (2007). families, mental health profession- 14-18. Compulsive Hoarding and Acquir- als, elder service agencies, and resi- ing. New York: Oxford University dences for older adults will need Anderson, S. W., Damasio, H., & Press. the knowledge, skills, and support Damasio, A.R. (2005). A neural of a variety of resources. Long term basis for collecting behavior in About the Author involvement by a dedicated profes- humans. Brain, 128(1), 201-212. sional, such as a care manager, is Henriette Kellum, necessary to maintain stability, Ayers, C.R., Saxena, S., Golshan, LCSW, is a mental monitor needs, assist with obtaining S., & Wetherell, J.L. (2010). Age at health service provider appropriate services, and coordinate onset and clinical features of late with an adult psy- care among service providers. life compulsive hoarding. Interna- chotherapy practice in Many older hoarders will need tional Journal of Geriatric Psychia- Northern Virginia. She has over 30 ongoing and regular mental health try, 25(2), 142-149. years of experience working in pub- services, as well as in-home orga- lic and private sector settings with nizing and housekeeping to com- Frost, R.O. & Hartl, T. (1996). A people who are challenged with pensate for lack of executive func- cognitive-behavioral model of com- hoarding behavior. Henriette has tioning skills. Maintaining the pulsive hoarding. Behavioral conducted numerous trainings, elder's stability will require collabo- Research and Therapy, 34(4), 341- helped organize conferences on the ration and partnerships between 350. topic, and provided leadership in providers and agencies, ideally establishing one of the first hoard- under the coordination of a care Hwang, J. P., Tsai, S. J., Yang, C. ing task forces in the country. See manager. Providing these services H., Liu, K. M., & Lirng, J. F. www.hkellum.com for more infor- is time consuming, expensive, and (1998). Hoarding behavior in mation about her and her practice.