Hoarding in Older Adults - Research on Aging

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either yourself or someone else if they have an issue with hoarding behaviors so every time I do one of these lectures I get giggles and laughs and people think that they have some symptoms we get a lot of calls with people who think they have symptoms so hoarding is not a messy desk or a messy kitchen or closet or household all of us are prone to particularly in times of busyness of having a lot of possessions that may kind of clutter things up however going to sorta something much more serious these these homes are are so cluttered that people aren't able to really use their living spaces so they're not able to get around in the rooms or use the rooms in the way in which they're intended to be used and people have very strong reactions about even having to throw out some of these possessions so there's very strong emotional attachments to these items so it's not as simple as just cleaning things up and moving forward so the interesting news is that hoarding disorder has just recently become an official disorder in our mental health handbook so our Diagnostic and Statistical Manual for mental disorders hoarding disorder is now a part of that it wasn't before so we really as researchers didn't know how to treat it was treated as more of a symptom or something that we just didn't know how to categorize but fortunately now it's got its own category so that's good news for us because it gives it a little bit more credibility and potentially some more research funding for us so it's been defined is persistent difficulty parting with possessions regardless of their actual value okay so these possessions can be they can range from antique possessions to empty food containers or opened blank envelopes so the value of these possessions does not matter there is great difficulty due to perceived need to save the item and they have a great amount of distress when parting with the possession so again it's not as simple as simply throwing something out and parting with it it causes a great amount of distress people often don't know what to do with the item or it just doesn't feel right to throw it out so we'll get into some of the reasons for saving in a moment now these symptoms result in a large volume of clutter so you can imagine and you know for people who are older if they've been doing this for a very long time that clutter volume is going to sneak up over the years so we'll talk about the onset and trajectory in a moment so how does hoarding disorder come to be how does someone develop this condition you know oftentimes you'll hear in popular media or on some of those TV shows that it was some kind of life event that got this whole thing started unfortunately it's not as simple as that there's a variety of things that have led to this person and their current condition and the hoarding symptoms so it's a combination of their personal history so their family history and some learned behaviors you know if you grow up in a household where there is hoarding behavior happening you may learn that you might need to keep those items as well as genetic vulnerabilities there's a strong genetic component so if you have a first-degree relative with this condition you're much more likely to have it we also know that people have the way that their brain functions is a bit differently than people without hoarding disorder so they have what we call neurocognitive deficits that so have strong beliefs about the possessions which we'll go into in a moment what those particular beliefs are and how they are reinforced and perpetuate this problem as well as strong emotions and emotional attachments to these things and reinforcement of properties so this is kind of our our big diagram of how we think this whole thing kind of shakes out and what we think creates this problem for people so again it's these core beliefs about possessions and learned behaviors as well as genetic vulnerabilities cognitive processes so differences in the way in which we we organize things and see the world and can problem self and that leads to different beliefs about the possessions and the meanings so this bottle of water may mean something very different to somebody with hoarding disorder as opposed to somebody without and then leading to strong emotional reactions when faced with having to discard possessions if any of you know somebody with hoarding they have a great amount of distress when they have to do something about their items and all this leads to just a nonsti constant and ongoing condition of saving items and an inability to discard so what are the primary reasons for saving I often get asked the questions why does somebody do this why can't they just clean up well that's a whole loaded question but why do why do people save things you know commonly we'll hear something like it just doesn't feel right I just can't throw it out it makes me so uncomfortable to get rid of something so they don't really know why it just doesn't feel good it just creates some distress sometimes we see folks who have they find the beauty and everything so that pen cap or that empty food container for that piece of shell that they found on the beach that's a beautiful object that that just you know just the object itself is pretty and should be kept getting rid of it would be wasteful so we see that particularly probably that's the most common reason I would say so they don't want to waste to something it could be used in some fashion down the road so they could use that article of clothing for a rag or they could use you know that pen because you never know when you might need an extra pen so again it would be wasteful to get rid of that object the object may have emotional significance so maybe that newspaper was from a time in your life when folks were happy or it was you remember you recall a relative reading the newspaper a lot and that reminds you of that so there's just just strong emotional significance to that and finally I will lose important information if I throw this out so paper is the biggest culprit here because paper has a lot of information on it there's a lot of words on those pages sometimes and if that's gone it's gone forever is the idea so rather than having to face the fear of losing that people will end up keeping it just in case now oftentimes these are some of the things that we see in addition to the holding symptoms so those urges to save in difficulty discarding we often see these other kind of personality features or quirks as some people call them we call these associated features so we will see people who are indecisive not just about their possessions but about everything in life you know what do they want for dinner when should they make that doctor's appointment Tuesday or Thursday just every little small choice is tough perfectionism so that I often get laughs when people hear this when they think about the homes of these people but yet but it makes sense in a way that people are so perfectionistic they don't want to make a mistake by throwing out an item or making the wrong choice so they don't make any choices they don't throw out things they're so concerned about being perfect but they don't do procrastination and avoidance behaviors so people are big procrastinators you know oftentimes we have folks that haven't paid their taxes in years or haven't gotten around to doing household tasks or things because it makes them anxious to kind of follow through with that and then finally disorganization so kind of not just with their possessions but an overall gross disorganization in their lives so their schedules are off they can't find things just life is more difficult for these folks so hoarding disorder is an interesting condition and the in that it's chronic and I believe it's progressive so hoarding starts early in life you can see signs and symptoms and children you can see messy rooms difficulty letting things go maybe keeping some items that other folks wouldn't keep but the thing about being young and living in a household potentially with parents you have some environmental barriers or controls so the mom is not or the father won't let that room to get too cluttered and they may actually go in and throw things out same thing happens you know as people progress into young adulthood if they're in the military for example or they're you know living in a college dorm room you know again the space is limited and there are environmental barriers that just don't allow the clutter to accumulate to that clinically significant level but where we start to see things happen is in someone's 30s that's when we can start to really see the extreme levels and developmentally that may make more sense people are in their own homes have bigger spaces and more the ability to go out and accumulate and acquire items and and that build-up to happen we don't see people getting over this at any phase so we don't see people going into any kind of remission so they had this problem for ten years then they got over it we don't see that we see it as an ongoing chronic condition which is different than other psychiatric illnesses so you see people with depression or other anxiety conditions that may come and go throughout different phases of life this doesn't this stays and when people have negative life events or traumas that while it certainly doesn't cause hoarding disorder it can make symptoms worse which makes sense if anybody has a negative life event and you're predisposed to having some kind of psychiatric symptoms your symptoms will probably increase now let me go back to that for a second now in older adults in a study that we completed a few years ago we found that symptoms increased with every decade of life now I suspect it's more the clutter that increases over time because natural build up you know just practically speaking forty years of stuff is going to look different than 80 years of stuff so the clutter volume probably increases I'm not sure about whether or not those urges to save in difficulty discarding increase or do they probably remain stable but the clutter increases which poses special issues for seniors which we'll get into so unfortunately when one has hoarding symptoms and hoarding disorder probably more often than not you're going to see psychiatric comorbidities meaning they're going to have other kinds of mental health issues happening and most commonly is depression and interestingly enough that depression sometimes will with appropriate treatment will go away with the treatment of hoarding so we could we consider the depression piece often secondary so the hoarding symptoms cause the person to feel depressed and if you think about it you know if you're embarrassed or shamed about having people over and you're upset about not being able to clean up your house even though you want to but you just can't because it's hard for you to get your possessions out the door and a variety of other things that are going on if it makes sense that people are feeling more depressed you know about 20% we'll see other folks with anxiety disorders so things like excessive worry or social concerns or things of that nature and then we see some other things like obsessive compulsive disorder but most commonly in seniors we will see depressive symptoms now what is it that people collect so again is there not antique dealers typically although they people with hoarding tend to be in the kinds of fields where collected items are common although we have certainly treated antique dealers the kinds of items are typically of limited value so they are newspaper paper paper is probably the biggest culprit containers of any kind you know I often joke with some of my clients that they could open a Staples or an office depot with the amount of containers that they have clothing items so you just never know what size you might end up being so we see a lot of folks with all different sizes of clothes food which is problematic if people are eating those spoiled foods down the road books again that's more related to paper because it has useful information because there other things like trash like food food wrappings and other things that would commonly thrown out there is a subset of people who do hoard animals so animal hoarding is is a smaller Horsham however we do see that now I've included some slides here a little bit about the brain functioning of people with hoarding disorder because it really parlays it and it's important when we think about treatment you know when we talk with people with hoarding it became a little bit more apparent that they had some problems with that the in the way in which they solve problems and their reasoning abilities and in in some studies that we've done in in midlife and older people we found this to be true when we've put them through a cognitive exam and those cognitive exams we have found to be important because we have to tailor treatment based on their profile so I'm going to skip right to our older people so in our younger group that I just showed they often have they have kind of more global problems or deficits the good news is and our older people things are very targeted so there's a lot of different domains that one measures when you're looking at cognitive functioning a lot of different things like memory and attention however in our older people we found it particularly in one area and that's in an area called executive functioning so these are these are kind of ways of examples would be problem-solving abilities thinking flexibly abstract thinking generating ideas procedural understanding so this is kind of a higher-order level of thinking so the gun this started to kind of clue us in on how are we going to start to gain some grounds in terms of treatment let's talk about some of the consequences of hoarding there's a lot of information on the slide we what we know about older adults in particular they have more chronic and age-related medical illnesses so these people are more sick or sick they have they often don't go to the doctors they go the doctors are very infrequently some of those reasons are to save the money on the co-payment some of those reasons are related to just the disorganization about you know going through the process of calling up and making appointment and getting there we often see medication and dietary mismanagement which can lead to problems with their their existing medical conditions so imagine if these people are so disorganized it's hard for them to eat three meals a day they're not going to be taking their medications appropriately and planning ahead to get those refills in time further they're not really taking care of their nutritional needs some may be eating spoiled food some may be just skipping meals all together there is an increased fall risk so I have personally fallen in some of my clients homes and so many of my staff imagine somebody with some medical issues or problems trying to get through narrow pathways in their home so we often do see again an increased fall risk and serious consequences associated with that they have impairment in their activities of daily living so those are basic activities that they need to do such as grooming and dressing being able to take care of those basic needs they often are very socially isolated so sadly we are often in our treatment studies one of the few that has contact with these folks during the week there's a lot of reasons for that some of which is shame and embarrassment about their home and living situation some of it is due to kind of maybe more fighting over the years with family members or friends about their situation and some discord in those relationships and then finally we sometimes see evictions and premature relocation so these people are not allowed to age in their homes they are placed into Aging or institutional care please so some of the special issues that we need to have in consideration you know working with the leaf to Soaring is a touch more complicated so we have potential increased cognitive impairment associated with age greater amounts of disability near this current cohort of seniors is actually a little bit more savvy but as the cohorts progressed through the years we expect to see people a little bit more open to some behavioral treatments often this is the first time they've been in any kind of behavioral therapy so they're not quite sure what to expect and they don't not sure if it will work we need to consider the role of family members and other social supports and their involvement often these relationships are very complicated and sometimes distressed relationships our seniors are often working with limited or fixed incomes so if they were able to work and they have social security that's nice but some of our folks are so impaired they they had work impairment we're not able to work so helping them figure out the best financial plan for them is difficult working with multiple medications and providers again their life is grossly disorganized so we're putting all these pieces together is often very challenging for the clinician then we often have some time age associated life events so death of spouse or friends onset of medical illnesses and the risk of losing independent status here's some more additional kind of ones that we see across the lifespan so other consequences of hoarding I'll just point out some of the more serious ones in San Diego County it's we have over the past few years have had several cases of fires which have resulted in death of a person living in their home so these imagine being in a cluttered home when a fire happens and it can be challenging for the person to get out and the fire people to get in we often we also in San Diego County have had people go to jail for this so there they are prosecuted by the City Attorney's if folks are not appropriately cleaning up their spaces where it's impacting other homeowners and community values so if somebody has a yard for example that's probably the most obvious place where you're going to get a fine from code enforcement and then they may pursue legal issues pending the case we often also see in San Diego County different kind of pests so rats so that's very geographic specific so I'll talk to my colleagues in Boston or other parts of the country and we all have different kinds of pests or rat infestations that are occurring so in a sample of older adult so what's actually happening in the home these people unfortunately often can't use basic plumbing and appliances so think about not being able to use your refrigerator so how are things being kept cold well they're probably not using the kitchen sink almost 50 percent could not use that or their bathtub so how are these people grooming and eating and showering and doing all the stuff that they need to do on a daily basis most alarmingly about 10 percent cannot use their toilet so they may be having to go outside or go to another facility or use other kinds of devices to use the restroom often these folks again getting back to the medical conditions they have high rates of healthcare utilization for the ones that are sick mid life people have a greater amount of work impairment days and sadly we see these people are often victimized and we're not really sure why they're victimized a bit more we hypothesize that it may be due to again their kind of chaotic lifestyle and maybe forgetting to keep the property secure and tight because these people do report theft a bit more we its unsubstantiated whether that seft is real or perceived loss and satisfaction with their living situations so these people are not happy in their living situations these people aren't happy as clams live in their lives they're distressed by this most of them are I will say there's a subset the lack in sight and don't show that distress but most people know that something's wrong now you know the interesting thing about working with hoarding disorder is that it's not just something that we see in an outpatient psychiatric clinic or a mental health clinic this is something that impacts the community this impacts neighbors family friends and a variety of public service professionals so in San Diego County we have the hoarding collaborative group and I was most amazed it was a group you know we put out the word about you know group getting together professionals with a goal to help the problem reporting in San Diego and it wasn't just mental health clinicians it was fire it was police it was a variety of people City Attorneys offices other healthcare systems geriatric care managers coming in and saying hey this is a problem and we don't know how to deal with it so the fire fire services are really concerned about this because it puts their people at risk to go into these homes you know elder service agencies are concerned about this because these people often stay in their systems indefinitely and it's a great amount of staff time to dedicate to these cases because they're not really sure how to appropriately treat it contamination so vector control and other sanitation services are very concerned about these issues so if there are pests or any kind of hazardous leakage of some kind it has to be addressed and then property value so that's where code enforcement and City Attorney's get involved because their job is to protect the public so we sometimes get calls from landlords and neighbors and people are quite unhappy if they have somebody with hoarding disorder living next to them you know as you know my job is of course working with and treating the impacted person with hoarding disorder but again this impacts a lot of people not just the person recording disorder so that we have seen a lot of difficulties in community systems related to sanitation problems structural issues flooding fires property value loss and a variety of legal fees and then again legal consequences so you know these people can be reported to Adult Protective Services and Child Protective Services if there's a dependent person living in the home animal maltreatment if there are animals in the home and other kinds of code violations so that is one of the things in that it's a barrier to treat and often as people our concern we are going to report them to the authorities and sometimes we have to if it's a mandated report where somebody's in jeopardy or at risk but but sometimes not so we're gonna talk brief we're going to talk briefly about assessment here and this is mainly from a clinician perspective but I think it's important for folks to know how do we assess for hoarding disorder the common lures that we just go in there and say up there's enough stuff in here it's it's positive and that's not the case people's homes can be cluttered for a lot of reasons so if somebody has an injury they break a leg and they're not able to clean up and things really accumulate over time that may be a reason why there's a lot of clutter in there sometimes folks will inherit a lot of items rather quickly and have to clean out their parents home or siblings home and their home is filled quickly sometimes their spouse is hoarding disorder and it's not them at all so it's important to do this assessment to really determined what's what's creating this clutter and what we're looking for again are those two key things urges to save and difficulty discarding those are the key components not the clutter volume that's not the rubber stamp on the diagnosis so one wonderful website if people do have particular interest in looking at some of these assessments if you're concerned about yourself or someone else I'll put up the website at the end but the international OCD foundation does have these measures available online if somebody wanted to take a little self-test so again I'll throw this up online or I'll throw up the website online and you can take a peek at it later but one self-report measure gets at three main things so acquiring that's something we haven't addressed yet some people are active acquirers to actually going out to swap meets in dollar stores and stores and stores and stores and actually bringing in items other people are more passive and they just had the difficulty letting go in life as you know if you know if you've been out of town for a week mail piles up things pile up over time so we have people who are active acquirers who go out and bring things as well as the majority are passive so this scale will tell us you know how bad they're acquiring is as well as their difficulty discarding so that's that core urges to save in difficulty discarding and then it does have a clutter volume measure so this is a very widely used instrument a quick one a quick little self-test that is also available online is the hoarding rating scale it's five items and it just inquires about the core symptoms of hoarding we use this in our research as a screening tool and then probably the one that people find the most interesting is the clutter image rating scale so this just looks at clutter Volume this is not looking at those are just to save and difficulty discarding so it shows a variety of photos with increasing clutter and we asked folks to point out what their bedroom living room and kitchen looks like actually have different photographs for each of those respectively and we also the therapists go into the home and point out what they think their home looks like and sometimes there's a discrepancy but actually more often than not people are pretty on so people know people know again what this looks like ok so now we're going to dive into some treatment there's a lot of information on this treatment so I don't want anybody to feel overwhelmed but we're just going to go briefly over what what is it that we do in treatment because it's often very different than what people anticipate often people anticipate this that we're taking a team of students in or there's some kind of group that goes in and cleans out the home that's that's not what we do that's only done typically when clinicians are not involved or if there's a very serious health hazard or threat this may need to happen obviously understandably people with hoarding are reluctant to let this happen this is very distressing for the older person and it's not it's not treatment it's not treatment this doesn't treat the urges to save and difficulty discarding this treats the clutter volume only so I will bet money that we go back in a year and that home is required I can guarantee it so so we see this happen again particularly in cases where there's rentals and a landlord must have the place cleared you know we certainly see that but it's not the best approach medications are right here at UCSD my colleague dr. sundae six anna has a medication study right now unfortunately it's not open to seniors yet but maybe down the road it will be but we do know that there are some effective medications particularly SSRIs that may be helpful for hoarding disorder so that can kind of reduce those urges to save and difficulty of discarding it's not going to teach you skills and tools to being able to do a able to discard and make choices but it will lower a kind of that physiological level of distress a lot of time we're just going to skip through a few things on midlife treatment jump right into older adults with hoarding so cognitive behavioral therapy is is a form of treatment that looks at how one's maladaptive or rational thoughts and problematic or avoidance behaviors can be adjusted to reduce symptoms so common behavioral therapy an approach was developed for people with hoarding disorder this is behavior therapy it does not have any medication component to it and what the question was a few years ago we wanted to see how this would shake out with older people how do people older people respond to what we would consider this gold standard cognitive behavioral therapy for hoarding disorder and unfortunately we found that people did not respond well at all so our older people some of them got worse this was a small study because there's no sense in doing a large study on something quite preliminary so we did a small study and two people got worse seven stayed the same and three got a lot better but still that's not quite good only three people got better out of all those folks so we concluded that gold standard cognitive behavioral therapy for hoarding disorder may not work well for older adults but what we did learn is that older people can tolerate 26 sessions of treatment there's often this kind of myth out there that older people don't want to stick and treatment or stay in treatment for 26 sessions it's too taxing or for some reason but it wasn't we didn't have any drop even though they didn't get better they stuck it out and didn't drop homework compliance was super important so those that did well did the homework and we suspected that the neurocognitive deficits so again those executive functioning areas that I alluded to earlier were the reason why people were not responding well and so we tested this out a little further so again don't get caught up and there's a lot of information on this slide basically this slide is showing that people with hoarding disorder have problems with problem-solving hypothesis generation procedural learning and abstract thinking and those are the main components that are that kind of skill set is necessary for somebody to do well with cognitive behavioral therapy so they don't have that foundation to be able to benefit from cognitive behavioral therapy and this slide shows us out so so again the intervention of cognitive therapy piece of that they're going to need those skill sets that people with hoarding disorder don't have the good news is we just didn't wrap it up and say we're going to go home and that's unfortunate ok older people with hoarding disorder there's ways around this so how can we work around this well we worked around it in a few ways first we realized that your piece of cognitive behavioral therapy that did work was the exposure to discarding if we have time we'll talk about what that looks like a little bit more but exposure therapy for making choices and discarding possessions did appear to work well based on clinician rapport and participant rapport and then we thought we could teach skills to actually improve or remediate cognitive functioning so in those areas where we've found and we know that there are some problems or weaknesses we can improve that and hopefully this will help with compliance issues and and relapsing back to bad habits so this is kinda these are all the skills that we have put together that we believed would be helpful for folks with hoarding disorder so practically speaking we're helping people get organized and work through issues and solve problems so the first areas in blue are things that a lot of our patients tell us hey I wish I would have learned this in elementary school this would have been super helpful for me how to use a calendar how to make to-do lists and get things done we're basically setting the foundation or stage where they're getting their lives back on track and more organized and preparing them for the exposure-therapy piece and the exposure-therapy piece we believe is what changes hoarding disorder so that is what we believe targets those urges to save in difficulty discarding so that's kind of our mechanism of action sort of speak this is how it looks so we start out with our cog rehab techniques so again it's working on some of those deficits and skill sets and then getting right into our exposure and we don't forget the cog rehab we kind of keep up with them again we want people to be able to use their talent or get practical things done around their home work through problems instead of avoid them but we also want them to learn that they can tolerate the distress of discarding possessions and that terrible things don't happen when they do throw things out and that's the whole point of exposure therapy so it's a little different than our treatment in a general adult population again the more emphasis is placed on exposure therapy as you can see on the far right and more emphasis is placed on skills training again more abstract concepts or not not reviewed so the program in and of itself and what we've developed is an individual treatment approach that we meet twice a week and then we go to once a week and then actually we've tapered it down to every other week so this slide is a little incorrect the sessions are 60 minutes and daily homework is emphasized so in behavioral therapy people can't just come to a session and expect to learn those lessons and then it's like fairy dust and they go off and they're they they've got it they've got to practice and and what we've found in our previous studies is those that don't practice don't do well make sense family our caregivers are important part of the treatment process and about 15 to 20 percent of the visits are home visits so home visits are incredibly important because it can become easier for a person do some exercises in session but when they get home when when you know when the route where it's really happened in their real lives that's where it's really important to practice these skill sets and we use patient and therapist workbooks so moving right into what is it that we do we start with some standard organizational strategies again these are things we could all use some brushing up on people without hoarding disorder I'm sure - so these are basic rules that we've heard and we've kind of read in magazines over the years and thought would be good ideas but we actually teach people how to do this because they may not have a filing system they may not have a bookshelf to put their books in some of this basic groundwork does need to be laid and then we move right into our cognitive rehabilitation so that includes doing practical skill sets on problem solving perspective memory and planning so prospective memory is remembering to do things in the future and planning for that so for example if you plan on going to the gym tomorrow what are some of the steps you need to take to get everything prepared and ready to go if you have a doctor's visit today what is it that you need to do to make that happen as well as cognitive flexibility and that is being able to think a little bit flexibly people with hoarding often have the problem of if something doesn't work they just keep doing it even though it's not working we need to have them identify when it's not working and when to shift and try a new strategy so we teach people how to do these things and in light of time I'm just going to quickly skip a few slides here and talk about what we do in our exposure therapy piece of the treatment so this is the most emphasized portion of treatment the rationale is based on habituation and distress tolerance so it's basic principle if you're scared of a dog what is it that we do with people who are scared of dogs well we start them with maybe a dog photo so we build from a hierarchy we start with something a little bit more benign something approachable maybe a dog photo and then maybe have a old sweet golden lab 50 yards away from them and then we build up where they have a chihuahua and then maybe it's a Doberman Pinscher sitting next to him so we build up from least to most feared situations and we expose them to do to being in that feared stimulus scenario and by doing that repeatedly and staying with it anxiety naturally decreases we can't stay anxious forever about things our bodies just can't maintain that it's not possible so how do we do this with people who are upset about discarding we have them make difficult choices and discard things again it's based on their own choice we don't tell people to throw things out it's based on their choice to throw things out and by sticking with it and doing it repeatedly over time they learn that they can tolerate they can make decisions bad things don't happen that's hopefully what they learn so daily practice is key so once we start the exposure therapy in session they must do it every day and we call this the life you know the new lifestyle so it's not like you know it's just like exercise you can't go to a fitness camp for a week and then expect to stay in shape the rest of your life who you got that taken care of it's out of your way now this is this is part of a skill set that must be practiced and maintained remembering that this is a chronic disorder this is again it's not something that's going to completely clear up in time yes symptoms will decrease significantly but you got to keep up with it so let's talk about some of our preliminary results so we did a similar study with same sample size where we tried this new technique so again this is the COG rehab or rehabilitation plus exposure therapy and after 24 weeks that's actually two weeks less sessions we had some great results so we had very much improved too much improved at post treatment overall symptoms were reduced by let's go to this slide about 40% so that was actually double our response rate from our previous study of cognitive behavioral therapy alone so that study we had about a 20% reduction in this study we're seeing 40% on our two main measures so again we've doubled our treatment response which is a very good sign and again it says that if we individualize treatment for seniors and base it on kind of their cognitive profile what their skill sets are we can see better results individual stress throwing things out so it's a good question where we and we'll do questions in a minute but we're measuring overall we're measuring both so we are measuring urges to save difficulty discarding acquiring and clutter volume and clinician administered so it's a combo so the savings inventory is self-reported UCLA hoarding severity scale is clinician administered yep good questions so this is what we saw with folks so the level of hoarding severity they were at what we would consider a non clinically significant at post treatment for both measures so people got better so this is just a fun case example we'll talk about in our last five minutes I know we wanted to open it up for questions so this was actually a woman named Eleanor she was a social worker who participated in our study and Eleanor had recently retired you know she led a very busy life and worked a lot was it was a great worker recently retired and her home was completely filled with clutter she was embarrassed about this people only one colleague was allowed to come over and nobody saw this home and she actually lived at another home with her separated husband most days of the week so she could sleep there but she would come back here during the day okay so this is her bedroom and one of the biggest barriers she had to treatment was she had some medical issues so she was quite frail and not able to move some of the heavier objects and books and things and you know so instead of us just saying oh yeah we'll get some people here to do some heavy lifting we did some problem-solving about that so we again looked at how she could figure out a solution to this issue and she decided that that it would be appropriate to invite the colleague who was younger / and then maybe they could together remove some of the items so that worked she also came up with there was an issue of her remembering to do the homework every day she would kind of put it off and avoid it so again looking at the skill set she was learning from our cognitive rehab techniques we were able to link it to something that she does every night she watches CNN and every night starting at 6:00 and that's what we linked it to so she would have the TV on and that was her cue that it was her time to do her exposures to discarding activity for the day so over time Eleanor became much more comfortable with our treatment team and when someone is you know has decades of stuff it is appropriate when they're at when they're ready clinically ready to have more people out there than just the study therapist so we had and she became comfortable and it was on her fear hierarchy to have people in the home and she wanted to address that so we had a team of people come out and assist her with different areas of her home not the bedroom actually she did this all on her own and after about 18 sessions this is what her bedroom looked like so this was her targeted room and we don't work through every room in the clients home we work on just one area because we're worried about skill deficits that's what we want to focus on and are just saving difficulty discarding or not professional organizers or interior designers that's not our job but what we do do is focus on those urges to save difficulty discarding and a byproduct of that is you will have clutter reduction so after 18 sessions this is what her bedroom look like and now she was able to sleep in her home so it's a huge quality of life difference you know we often don't think about those big things that can happen when when these homes are cleaned up one of the best ones I had was there was a gentleman who we cleared the living space so he could see the TV from his favorite chair and that just made him the happiest person in the world because that was one of his favorite activities so this quality of life change was huge for this person now she didn't have to go sleep on the couch with her estranged husband's home and she felt good about this she's photos were taken and with her permission so with people who are dedicated and have insight this is what the homes can look like these are not all cases in hoarding disorder though unfortunately if folks don't have insight and they're not willing to engage in the treatment process or don't have treatment available to them it's a much harder course and the prognosis is not as good so to conclude we think that cog rehab and exposure is a feasible acceptable and promising treatment for geriatric ording treating the neural cognitive deficits and patients with hoarding disorder appears to enhance response to cognitive behavioral therapy or CBT in individuals with comorbid psychiatric disorders or severe hoarding symptoms may require an intensive or longer course of treatment we did see that overall even in our responder group so who can help well everybody in this room can help because you probably fit into one of these categories people wanting to sort of need treatment they don't need a lot of yelling or advice or distress they need treatment so friends family can refer people with or natori we have some resources here in San Diego County elder service agencies they are more more and more increasingly getting clinicians trained up in appropriate treatment measures animal control so if there are at-risk animals Animal Control is often involved mental health professionals are part of this landlords I've had many kind landlords make referrals and work with me closely with the hoarding patient professional organizers can help code enforcement fire the list goes on and on so it does require a community approach and somebody who has that relationship with the person with hoarding to assist with a referral process now future directions for this treatment this is study funded by the VA we are near completion to a randomized control trial so this is where people are randomly put into care management for Jarett according which is the standard community approach or the new approach I just talked about today so far so good the results are looking promising and our next step is going to be a real-world effectiveness study so looking how this shakes out when we take it to Elder service agencies or older adult outpatient centers and the take-home message is that this is a neuropsychiatric disorder hoarding disorder it's it's it's a disorder it's not somebody being lazy or messy or being a slob these people are suffering however there are effective treatments available and and the job that anybody can play is assisting with that referral or helping somebody get into a qualified professionals office we know that early identification intervention is is helpful yet we've treated people I personally treated people in their 90's so it's never too late to get help and see those improvements and changes so the best resource that I would recommend for more information on hoarding disorder is you can simply google OSI foundation or you can if you can read it there is a website at the bottom in light blue and it's wWOZ foundation arg backslash hoarding backslash so when you go to that website there is a special topics section click on hoarding center and you'll get all kinds of information about hoarding disorder how to find a therapist in your community and how to talk to a loved one so it's it's the last website there and then we do have a staff of people that you can call our offices and we can assist with referrals we actually have several hoarding treatment studies going on right now at the VA and UCSD and there's a variety of treatment options in San Diego County and we have a resource list so you can simply call that number in that extension and let us help you out if you have any further questions there is my email address so you can easily find me on the UCSD staff directory so we wanted to reserve ample time for questions the extension is one two five one so the telephone number is eight five eight five five two eight five eight five extension one two five one and my email is C a why e RS at UCSD edu okay I'll leave it I'll leave the number up there we go yes okay so the nature of the homework and the exposure so the homework assignments we give in behavioral treatment are fairly practical and and what you would do is outline that with a therapist just as in cognitive behavioral therapy as well so you would be with exposure therapy for example first you would practice that skill and learn about it with the therapist but then that at home you would go home for a designated amount of time in a designated area start to go through and sort and hopefully discard possessions so people will have a box of items that they are already have decided they will start with and you know we can't tell everybody to throw everything out in that box that's just not possible but we push people and ask them internally to push themselves to making those difficult choices so if there's a question about it take pause and see if it's something you can let go of and so we have a person systematically go through that box of items picking you chai tum up one by one and making a choice about it and then after that's done they have to put all their keeps in what we consider their final resting place so we have to have them put away and if they can't find a place to put well hey that signals that maybe they don't need to keep that item and their discards need to go right out to the trash and we made that mistake early is that we had some folks that were doing really good with their discarding and then we went to their house and there's all these little piles everywhere and they weren't putting things away and they weren't putting it to the final destination so that's what it looks like and it'll be you know 30 minutes a day and sometimes people prefer as an example I've had people start with five minutes because they were so resistant and anxious about it and we just said let's let's start with five let's get into practice of five and you build from there so we have to meet where the person's at and then work up to that point yes so the gender difference in late life were really unclear about our first study we had more men than women it was a simple characterization study and we're surprised by that and then in our most recent studies we are seeing more women coming in so it could be a variety of reasons we're still unclear as to why but some of the reasons you mentioned are appropriate yes sir deals up with someone like this I've got a friend she's be very secretive years I've never been inside her home mm-hmm that's the way she is and she thinks that it's persecution everybody is stabbing her in the back now because we're trying to do something with her in her clutter we want to get her into an assisted living home but she's just fighting that you know back up against the wall doesn't want to release her stuff how do you start daily basis well yeah that's often the question I get and there's no easy answer to that I would again recommend the OSI Foundation website because there's a podcast with dr. Randy frost talking about how to help somebody with hoarding and it gives you appropriate language to use that maybe not accusatory that will help you maybe join with the person a little bit easier so they're not feeling like they're in the spotlight you want the person to as much as possible feel like they are making choices for themselves and that they are creating change and so maybe opening up the question what would you like to see happen how do you think we can solve this issue and as in as much as you're willing to you know you know and be is non-judgmental as possible and try to be with her in the home if you can because that will kind of spark a conversation of yeah I realize that this is a problem when you're out of the home talking about it on the porch that conversation is probably not happening as much so as much as you can become more involved in what's going on with that but when her mind says I don't need or want assisted living and we all know she does mm-hmm I can't get through it I can't break through that and sometimes you're not going to be able to and then sadly enough if somebody is is if they're they have the mental capacity and physical capacity to remain in their home and they don't want help they don't want help landlords caves around okay so that that may be you know something that would launch her into recognizing it's a problem in getting some help hopefully you're planting seeds even if somebody is resistant they're aware of the problem they know and so if you can continue to be there in a supportive nature and continue to offer treatment resources that's the best thing you can do at this point sir put the time in listening to this and dealing with some of this population do you ever get the feeling this is the tip of the iceberg that we see but there's a lot of underlying issues going on one of the ways I guess that would ask that up the 40% of the people who got better did other issues start to develop as the hoarding issue got better there are other issues maybe under other underlying psychological factors and start coming out and always quote the great research on that used to be elsewhere to cut drugs now I'm all screwed up on the Lord and it was just passing what I didn't see one another and I'm just wondering if that something you see actually we don't so actually it was 40 or an average of 40% symptom reduction for everybody so it wasn't 40% that got better but what we do see surprisingly even in that first trial where people didn't get better their depression got way better they got 50% better and we saw the same thing in our in our most recent study so we actually do see anxiety and depressive symptoms improve we see disability improve we see other kinds of social areas improve so we haven't seen an uptick in other kinds of symptoms or issues because probably the treatment is long so it's a lengthy course of treatment and it's intensive we're asking them to be very involved and we're doing home visits they're doing this work every day so they're so if things do pop up we can address them in that time frame because we're with them for about six months it's a good question yes sir so it's generally the urges just yet so dr. Sanjay Saxena has currently a study right now looking at effects or and showing some promising results so SSRIs are are medications that are helpful for that so I recommend talking with your psychiatrist to see again what has worked for you and has not worked for folks in the past but but we have seen results with effexor positive results yes yep yep and so we haven't yet done the study where we're adding the behavioral therapy and it should we we think that it should be done in combination we haven't done that study yet but we think it should be done if I had a parent or somebody that had this issue I would say do it in combination yes so you bring up a couple good points um right now our study staff and I know there's not that many researchers across the country the study of this disorder they are not currently in recovery or are were part of a hoarding household we have started the group of researchers and one in particular has started more self-help group where there is somebody in recovery doing that and that's in San Francisco so there is a movement of people in recovery from you know going through treatment and continuing this up your second question about what happens long term we are looking at long term outcomes so we assess these people three months six months and one year out and we don't have the results for that yet you know the good thing about being with these people so long and behavioral treatment is that we can see some of the impact of them discarding to you know to examine that area of regret and and those kinds of things but what we know is that they actually do have bitchu eight and do benefit and learn that they can tolerate letting things go as opposed to the fear of oh my gosh I'm going to be lost without these things those things actually those bad things that they think happened don't come true now that's not to say that that will happen at cleanups in a clean-out situation that may likely happen exactly yeah good question question there yes ma'am oh so the one that I do is free but there are if you go to somebody in the community you'd have to square that away with your insurance hoarding disorders typically people give the diagnosis of something else because there probably is something else that they may put in there as a diagnosis but again with this being a new disorder that's a promising thing because we can start to get reimbursement for that yes this is hereditary yes it is hereditary my husband has hoarding disorder yeah he's had it for 15 maybe he is now he now has Alzheimer's he is still hoarding yes he on his body I think I see him and he has this bump on his stomach what does that when he gets very annoyed yeah doesn't want me to investigate what's on his stomach but how he will take anything a towel a piece of paper you leave your sunglasses or your reading glasses on the table and they're going to disappear and bobby's yeah and we see that with age you know if people slip into any kind of neurological issue is that the reasons for saving may disintegrate a little bit more people to start taking items without having insight as into why they're taking those items so it's generally the urges to save that's all it is it's it's an urge to keep an item and they may not know why yes the question is do the medications impact the disorder directly or do they just decrease anxiety and depression I think it probably does all three it was you know so it does it does decreases it does decrease urges to save and it might be a little easier to throw things out so it lowers those physiological levels and it will help with anxiety and depression it will help with that as well so you can get kill two birds with one stone yes all over town is their group session there there is a clutters anonymous we don't know the research outcome and that's yet so I would be I can't say I can recommend that but but certainly people can check it out there are some support groups and clutters and I'm anonymous meetings in San Diego the caution is though that what we know works as behavioral treatment so yes do you think it would be a negative if I just directly confront this person like that know that I know exactly what's going on because they think that people don't know she these people oh no should I call her on and say enough of the BS and get down to the point well I wouldn't necessarily say enough of the BS i but I would you know what I would think it's important you can point absolutely you can lovingly point it out and I think it is important to call attention to it if you see a person with that problem and the language in which you use is important though non-judgmental accusatory that kind of thing so again look at the OCA Foundation website and it's got some helpful tips and absolutely it would be helpful to talk with her directly about this yeah and tell her just what you see that's all you're saying you're seeing these items that's you're just reporting on that okay we have time for one more question yes is there any relation between race upbringing and social status that's a good question any relation race upbringing and socioeconomic status well because hoarding disorder is a disorder that we have really only started investigating in the past ten years we don't know any of those answers yet we have no idea most of our samples tend to be US citizens Caucasian females at this point we are striving to get a more diverse sample so that we can investigate some of those very factors because I think those are important questions down the road okay all right okay yes what final question what is anxiety that you say it's an anxiety also a disorder why why do we feel anxious if we part I guess it's not an anxiety disorder but people may feel anxiety or distress or depression I mean just feel negative emotions when they are having to let go of a possession or having to deal with their items yeah good question okay thank you very much folks you

Channel: University of California Television (UCTV)

Views: 125,010

Keywords: hoarding, adults, behavior

Id: xeYnkkofqjU

Length: 73min 23sec (4403 seconds)

Published: Wed Oct 02 2013