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Hoarding Disorders and Older Adults Fact Sheet Website ,Info, Resources

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Frequently Asked Questions: Hoarding Disorders and Older Adults FAQs • December 2019 David Godfrey, JD, American Bar Association Commission on Law & Aging Eileen Dacey, LCSW, North Shore Center for Hoarding and Cluttering

This FAQ is a follow up to NCLER’s Legal Basic’s Training: Self-Neglect and Hoarding Disorders, presented by David Godfrey and Eileen Dacey. The Chapter Summary and webcast recording have more information. The presenters answer frequently asked questions from the webcast below. How is a hoarding disorder different than clutter and disorganization? Hoarding disorder is its own distinct mental health diagnosis that falls under the Obsessive-Compulsive Disorder (OCD) and Related Disorders Spectrum. Clutter and disorganization can be features of other mental health issues (whether diagnosed or not diagnosed). The Diagnostic and Statistical Manual of Mental Disorders (DSM–5) criteria for hoarding are: 1. Persistent difficulty discarding or parting with personal possessions, even those of apparently useless or limited value, due to strong urges to save items, distress, and/or indecision associated with discarding. 2. The symptoms result in the accumulation of a large number of possessions that fill up and clutter the active living areas of the home, workplace, or other personal surroundings (e.g., office, vehicle, yard) and prevent normal use of the space. If some living areas are uncluttered, it is only because of others’ efforts (e.g., family members, authorities) to keep these areas free of possessions. 3. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others).

Significant in these factors is distress caused by trying to part with possessions that others see as having no or limited value, unable to live or work in space and significant difficulty in the persons’ life. It is important that hoarding disorder is considered a significant emotional or mental health issue, and addressing the underlying issue is essential to long-term improvement. Hoarding disorder is far more than being messy, disorganized, or having a lot of possessions—the underlying emotional and mental health challenges must be addressed to achieve a change in behavior. How is hoarding different from collecting? Collectors look for specific items and often organize or display their collections. The items people collect are likely to have real or sentimental value that can be explained to others. A collection may take over a living or workspace but does not cause emotional distress or interfere with personal functioning. This can help distinguish between normative collecting behavior and abnormal collecting behavior that is present in hoarding disorder.  What screening tools can be used to identify a hoarding disorder? It is important to obtain training or work with a professional trained on screening tools to identify a hoarding disorder. These are the screening tools used: • Clutter Image Rating: Assessing ‘volume’ • H.O.M.E.S. – Multi-disciplinary Hoarding Risk Assessment: Assessing risk • Uniform Inspection Checklist – Hoarding / Excessive Clutter: Minimum safety and sanitation standards

What steps are suggested when the first report of significant hoarding is part of an eviction filing? An interdisciplinary team of specially trained therapists, organizers, and legal assistance is most helpful when responding to significant hoarding. First, therapists can work with the person to assess the persons’ needs, create a plan of care, develop trust, and begin the process. Next, organizers are equipped to assess the environment and create a plan for working with the person and the therapist for harm reduction. A lawyer is needed to address the immediate issue of the eviction. In responding to the eviction, the individual, therapists, and organizers are needed to provide testimony to the Court that the issue has been assessed, that a plan to reduce harm and improve safety has been agreed to, and to ask for time to implement the plan. Any immediate safety threats to others need to be addressed. The experts in hoarding disorder may need to help the Court understand why time is needed for effective and long-lasting improvement and to assure the Court that progress is expected. Working together, the team may negotiate with the Court to set benchmarks for improvement. It is important to remember that an ordered clean-out, particularly one that is not concurrent with ongoing therapy to address the underlying emotional or mental health issues, is very likely to fail as a long-term intervention. Avoiding homelessness should be a top priority for all involved. An attorney can provide important support to help all parties understand the importance of moving carefully to avoid further trauma to the person. The process takes time.

What first steps should I take in a case involving a hoarding disorder? Guidelines for Initial Assessment: • Provide rationale for a home visit. • Do not touch anything without EXPLICIT permission. • Each decision must be the client’s decision. Can be guided by you; not decided by you. • Try to keep the home visit as short as possible. • Decide where to begin. • Photograph all rooms of the home. • Use assessment tools. • Involve family members who live in the home.  Clinician’s Guide to Severe Hoarding, Tompkins, Michael A., 2015, Springer.com. National Center on Law & Elder Rights

Why does the process take so long? The underlying emotional or mental health issues that trigger the hoarding behavior developed over years or even decades. Helping the person heal and develop new strategies and habits will take time and doing so is the key to long-term improvement. What therapies are used to treat hoarding disorder? The two most commonly applied therapies are cognitive behavioral therapy and harm reduction. The approach for each case needs to be based on a careful assessment of the individual’s needs.

What should I say or do when visiting the home? Avoid being judgmental. Provide encouragement and emotional support. Be honest and transparent. Focus on the issues, not on the underlying causes. Stay calm, even when it is difficult to do. The goal should be an improvement, not perfection.

Where can I find more resources? Resources on Animal Hoarding: • Tufts Cummings School of Veterinary Medicine: Hoarding of Animals Research Consortium • American Society for the Prevention of Cruelty to Animals • Massachusetts Animal Coalition

Support Groups: • Hoarding Task Force Network • Clutter Movement Individual Support • Clutter Movement Family Support • Mutual Support

Hoarding Disorder Programs, Research, and Conferences: • Hoarding Project for Safety Day • Journal of Clinical Psychiatry: Hoarding Disorder: More than Just a Problem of Too Much Stuff • North Shore Center for Hoarding • Phone App on Clutter Rating • OCD Foundation • Annual Conference on Hoarding & Cluttering • Annual OCD Conference

Case consultation assistance is available for attorneys and professionals seeking more information to help older adults. Contact NCLER at ConsultNCLER@acl.hhs.gov

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