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Hoarding Disorder with Dr Randy Frost

 

This episode is about Hoarding Disorder with Dr Randy Frost, a Professor of Psychology at Smith College, Massachusetts. We’ll find out if being cluttered makes you a hoarder; why hoarding disorder makes letting go of things so difficult, and when you should intervene for a loved one who is hoarding. This episode is for the finder keepers, the collectors, the acquirers, the space invaders and those that love and live with them.

Guest Bio

Randy O. Frost is the Israel Professor of Psychology at Smith College. He has published numerous articles and books, including Stuff: Compulsive Hoarding and the Meaning of Things, a New York Times Bestseller and a finalist for the 2010 Books for a Better Life Award.

His latest book, The Oxford Handbook of Hoarding and Acquiring was published in 2014. He has received a Lifetime Achievement Award by the Mental Health Association of San Francisco, and a Career Achievement Award from the International OCD Foundation.

Episode Transcript

BONNIE: Hello and welcome! I am Bonnie.

LILY: and I am Lily, and this is Little Home Organised, the Podcast dedicated to helping you declutter, get organised and reclaim time for the things you love.

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LILY: Before we get into today’s episode, we have some exciting news to share

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LILY: So, all you need to do it head to littlehomeorganised.com.au/webinar to register your interest there and then register for the webinar.  It is on the 6th October at 8pm Australian Eastern Standard time.

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BONNIE: Hello and welcome today we will be joined by Dr Randy Frost to talk about hording disorder.

LILY: Randy O Frost is the Israel Professor of Psychology at Smith College.  He has published numerous articles and books including Stuff – Compulsive Hoarding and the Meaning of Things.  A New York Times best seller and a finalist for the 2010 books for a better life award.  His latest book the Oxford Handbook of Hording and Acquiring was published in 2014.  He has received a lifetime achievement award by the Mental Health Association of San Francisco and a career achievement award from the International OCD Foundation.  Welcome Dr Frost.

DR RANDY FROST: Thank you, it is a pleasure to be here.

BONNIE: We are so excited to have you on the podcast Randy, you have been a bit of hero of mine for nearly 10 years now, that is how long I have been doing this organising gig. You and I last spoke in 2016 when you actually came to Australia and I got to go to one of your all day lectures on Hoarding Disorder which was fantastic, absolutely brilliant. After that you and I got to do a 2 hour talk back radio program on 96.5fm ‘Talking Life’ with Peter Janetzki and that was one of my bucket list goals so thank you for that and thank you for joining us again today.

DR RANDY FROST: Thank you, my pleasure.

LILY: We are going to jump straight into it Dr Frost because we have so many questions to ask you and we know time is of the essence, so first things first, everybody wants to know about you know their great aunt Mildred who they think is a hoarder because she has got a cluttered home, does a cluttered home mean you are a hoarder?

DR RANDY FROST: No not necessarily, there are several criteria for the diagnosis of hoarding disorder, one of them is the inability to discard or let go of possessions but the DSM talks about their diagnostic code, talks about discarding but what that really means is inability to let go of a possession.  So that is the primary characteristic but the second characteristic is that this produces clutter, so you can have a cluttered home for a variety of reasons, ah some of them relate to other mental disorders, some of them relate to medical disorders, some of them relate to life circumstance, so people who have inherited um a large amount of possessions from parents or grandparents who passed away, their home may get cluttered all of a sudden and that is not an indication of hoarding disorder, um it is only when the clutter is accompanied by this difficulty discarding and that it is enough that it interferes with their ability to live and those are the really key characteristics for hoarding disorder.

BONNIE: Mmm does hoarding disorder run in families?

DR RANDY FROST: Yes it does as a matter of fact and there have been now close to 8 or 10 different kinds of genetic studies, there are family studies, linkage studies, twin studies and they all point to the fact that there is some portion of hoarding disorder that is genetic and some of the latest research suggests that it may be as much as 50% of the variants in hoarding disorder is genetic, so there is a heavy genetic influence.  Now it is not completely genetic, there is some other, something else going on  that is prompting this behaviour and there other question is what is, what is it that is potentially inherited, so there are a couple of options, when we take a look at the phenomenology related to hoarding disorder one of the things we see is some impairments or some deficits  in executive functioning, the ability to make decisions, the ability to categorise, attention related phenomena.  A lot of ADHD is associated here and so one of the possibilities is that is where the genetic component comes in, not so much necessarily in the attachment to the possessions but in the way in which the brain is wired, because the brain appears to be wired a little bit differently in people who hoard in fact there is some suggestion that maybe what happens is that the brains with people with hoarding disorder are more, wired in a more complex way, in a way where there are many more connections and so the association they have with any given object is much more complex than it is for people who don’t have hoarding disorder, and so my guess is, if I was to guess and again this is sort of conjecture but that is where the genetic component comes in, it is something about the way in which the brain is wired.

BONNIE: So, does that mean you have identified a gene that you can actually test for to say that you are predisposed

DR RANDY FROST: It is not quite that simple, um the genetic studies haven’t identified a gene and it is likely that there are multiple genes involved, so at this point the research just isn’t sophisticate enough to be able to identify exactly what kind of genetic problem this is related to which suggests it is probably polygenetic that there is a lot of stuff going on that sort of combines together to produce these information processing deficits that we see in hoarding.

LILY: So what I am understanding from what you are saying Dr Frost is that you know, you may have a mother who has hoarding behaviours and then you have somewhat of a genetic predisposition to it but that doesn’t also necessarily mean that you are guaranteed to grow up and follow in the same footsteps is it?

DR RANDY FROST: That’s right, that’s right, the probability is higher than it would be if you did not have a parent with hoarding problem but it’s certainly not guaranteed that you would develop a hoarding disorder.  Now one of the things we find to is that children who grow up in hoarded homes often react in an opposite way and in part they may still have the genetic predisposition but the stresses and struggles of growing up in a hoarded home had such an impact on them that they make sure that they don’t follow that path when they are adults.

LILY: Yep

BONNIE: Mmmm

LILY: One thing I am curious about and this is something that you are probably a bit more aware of Bonnie having been to Dr Frost’s workshops before under hoarding disorder are there different categorised types of things that separate different hoarders from each other, like is it categorised by the different things that they like to hold onto and acquire?

DR RANDY FROST: Not really um for the most part people with hoarding disorder tend to save everything that sort of comes into their purview.  Now each person may have some higher percentage of some kinds of things, we and one of the first studies we did, we looked at the nature of things that were hoarded and we asked people to rate how frequently they saved a list of 100 things and we asked people who didn’t hoard to tell us the extent to which they save each of that list of 100 things and although people who hoarded rated everything higher, the ranking of them were the same for people who hoarded and didn’t, meaning that people who don’t hoard save exactly the same things in the same percentages except the percentages are significant lower, so the same ordering of percentages so papers, containers, um clothes are some of the more most frequent things and they were the most frequent things for people how hoarded and people who don’t, and people who then to hoard everything there aren’t themes really for the most part for people who suffer from the disorder, there is one exception to that however and that one exception is when animals are hoarded and so we see people who hoard animals um have a somewhat different profile, so people who hoard animals tend to hoard just one species, they also look different demographically, they tend to be female and for object hoarding it is sort of split evenly between males and females, they tend to not show up the hoarding behaviour, the behaviour doesn’t show up until much later in life and with hoarding objects the behaviour shows up fairly early, the average age of onset is somewhere around 16 years old.  So, the profile for people who hoard animals is a little bit different.

BONNIE: Yes

LILY: Now you also mentioning that there is this genetic predisposition for some people but what are the other triggers and things that can contribute to hoarding behaviour, my question specifically is around trauma and like post-traumatic stress disorder and things like that, is that, does that play a big influence?

DR RANDY FROST: Well we are not entirely sure, what we do know about this, is that people with hoarding disorder are more likely to have experienced a trauma than people who don’t have hoarding disorder

BONNIE: Mmmm

DR RANDY FROST: So, in one of our recent studies we found about 50% of people with hoarding disorder had suffered some kind of serious trauma in their life.  Significantly more than people say with obsessive-compulsive disorder but the interesting thing is that or was in this particular study was that the percentage of people with hoarding disorder who were diagnosable with post-traumatic stress disorder was no different than it was for people with obsessive-compulsive disorder so despite having more trauma in their background, they didn’t have a higher likelihood of developing PTSD, so that has led us to speculate that perhaps hoarding behaviour might be some in some ways a buffer against the development of PTSD symptoms.  Now that is speculation, we haven’t done any research to really follow up on that hypothesis so but it is a curiosity that um that is worth exploring to find out, does the clutter somehow buffer or give them some kind of relief from the potential PTSD symptoms, we just don’t know the answer of that question but it is a possibility.

LILY: More studies to be done

BONNIE: Oh yeah always more research isn’t there.

DR RANDY FROST: Exactly

BONNIE: So, if people were to ask you what causes hoarding do you generally say well it is about 50% genetic, 50% trauma?

DR RANDY FROST: No we can’t really say that the trauma caused the hoarding, the trauma may precipitate it and because only half of the people with hoarding disorder have a history of trauma it is not a real clear aetiological factor, it is a background factor and maybe one that precipitates hoarding or but we just don’t know and as for causes, it is really hard at this point because not much research is done on anything other than the genetic component, we do know that now there is some new research on the nature of attachments and attachments that occur early in life so people with hoarding disorder report a history of a lower level of family warmth when they grow up, maybe that is associated, we don’t know for sure but it is just early in the research in that area, there is also some research now coming out, much of it out of Australia for instance ah looking at attachments, early attachments in life to parents for instance that may contribute to, to the development of hoarding but it is still in its infancy this research.

LILY: I am just so fascinated; it is just such an interesting

BONNIE: Um field

LILY: Yeah well psychology in general it is just amazing how we are all so different and all the factors that contribute to the life that we lead.

BONNIE: And how we are made up in our composition and all that sort of stuff

LILY: Yeah and how thing, you know experiences that we have manifest and like and you know can change the path you are on or open up different pathways to you, it is just so fascinating, like you say the research is never done, there is always so much to be learnt.

BONNIE: Mmmm

LILY: One of the impressions that I have been given when speaking with people about hoarding disorder is some people feel like it is not like curable, is there such thing as a recovered hoarder, what is the relapse rate around people with hoarding behaviours.

DR RANDY FROST: Yeah good question.  We don’t really talk about cure because we don’t know what causes it, we can’t really say that we have cured someone of it,  there is plenty of evidence that we can help people manage it, and there is plenty of evidence we can get someone to the point that it is not an issue anymore, so that is pretty clear but um it is a disorder that is harder to treat than obsessive compulsive disorder for instance, the outcomes we get from the treatments we have aren’t quite as good as they are for obsessive compulsive disorder but they still are substantial so  we can improve the lives of 70-80% of people who undergo treatment, um now in the end the treatment often they still have some symptoms so they still may need some ongoing maintenance and some work on clutter issues so we still have a long way to go in terms of coming up with a treatment that will come close to a cure.

BONNIE: So, what is the current treatment that is giving you the best success rate?

DR RANDY FROST: Well the current treatment that is the most carefully tested is cognitive behaviour therapy um and it is can be deliberate in a number of different formats, individual formants, group formats and we have even developed a peer facilitated self-help group based on cognitive behaviour therapy principles that seems to work fairly well, um in fact there are a lot of, we call them buried in treasured workshops and there are a lot of them now going on in Australia and elsewhere around the world, um and so there is quite a pretty good evidence base for these kinds of treatments. There are new developments in terms of treatments that focus on some of the cognitive rehabilitation necessary other treatments focusing on compassion focused approaches because of the stigma that is involved here, um and all of them show some degree of promise but the research is not as far as long as it is for cognitive behaviour therapy.

BONNIE: Mmm

LILY: Alright I think it is probably time that we take a quick break because we have got some great questions coming up but we love to put all of our guests on the spot and ask them about their clutter confession

CLUTTER CONFESSION:

DR RANDY FROST: Ok so the clutter confession for me is I go to a lot of conferences and at every conference I get a lanyard with my name on it and so I have collected I don’t know dozens of these and so I hang them on the door in my office and so each one of them carries with it some memories and so that is sort of what the attachment is for me.

LILY: I was just trying to think of you know like it being in your office makes sense because of the

BONNIE:  Work you do

LILY: Yeah the work you do but then I was trying to think of other ways you could display it in your house if you have like one of those like big plastic trees you could hang all the lanyards off the different branches

BONNIE: It would be your Christmas tree, a lanyard Christmas tree

DR RANDY FROST: Yeah right

LILY: Oh, that is awesome, thank you for sharing.

DR RANDY FROST: Sure

BONNIE: You’re going to have to send us a photo of that you know.

DR RANDY FROST: I will, I will

LILY: We want to hear what weird, wacky and wonderful things you have held onto, so if you have a clutter confession please get in touch, head to our Facebook page Little Home Organised Podcast and there are instructions there, you basically send us an audio message and we will keep it anonymous and play it on an upcoming episode.

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BONNIE: Ok so back with our amazing guest Dr Frost, this is a really heavy question and I am sure you get it a lot, how do you help a family member who is hoarding but doesn’t see a problem, do you just leave it alone and know that you have got a really big job to do when they pass?

DR RANDY FROST: Good question and it is a tough spot for family members and there are many family members who find themselves in this spot and there are a couple of things I would say.  There are some great um books out there on dealing with hoarding problems that are severe where there is not a lot of recognition of the problem and they follow a programme called Harm reduction treatment for hoarding, and it involves forming a team of people and the idea is to increase communication with the family member, people who pursue Harm reduction therapy will train family members in motivational interviewing which is one of the things we use in the cognitive behaviour therapy for hoarding disorder and the idea here is to help the person recognise the ambivalence that they experience because most people with hoarding disorder even the ones who don’t want help or don’t appear to recognise this is a problem, they do experience some degree of ambivalence, they know the way other people view their home and they feel a sense of rejection and criticism, intense feelings of criticism from other people and so that tells us that yeah they recognise there is something going on here and so the idea is to identify this ambivalence  well there is something wrong but I don’t want to deal with it, I don’t want the pressure from my family member, I don’t want the criticism from my family member.  The difficulty that family members find themselves in is that without knowing how to approach it, without it being trained in motivational interviewing the easiest way to deal with the problem and most of us who are trained to help people look for the easiest way to help them and for people who don’t know about hoarding disorder the easiest way is just to tell them look just throw it out, but by doing that we don’t get out the other side of the ambivalence, yeah I don’t want to have to worry about this thing but at the same time I want to keep it because and then the reasons come out and so the idea here is that in that the family members when the persons say I can’t do it, what happens typically is that the volume of the criticism, the volume of the suggestions or the requests to throw things out gets elevated and then any other kind of pressure that can be brought to bear either criticism or shaming the person or trying to coerce them or trying to throw things out without their knowledge, that is really the only tools in the persons toolbox, if they don’t know motivational interviewing and those tools we know don’t work and they tend to backfire and what happens is the family relationship fractures and now the person is all by themselves and no one visits and the one thing we do know is that when no one visits the home of someone with the hoarding disorder, the clutter gets worse.  So one of the things we tell family members is maintain a relationship with your loved one and visit, and you don’t have to say anything about the clutter, you don’t have to talk and you don’t want to pressure them into anything but by visiting you are making a positive impact on the person and there attempts to clean because what we contact with someone and go to their home they know we are expecting a home that is in bad shape but when we get there they will tell us, you know I have just spent 3 hours cleaning up, so they do react to visitors in the home as all of us do.  So it is a somewhat of a complicated answer but learning more about hoarding is key to family members in know how to react and certainly engaging at their level and developing a harm reduction program for yourself, even for a love one who doesn’t want to participate is a useful exercise and go a long way to um facilitating eventual help for the problem.

BONNIE: That’s really interesting about the um when you stop visiting them that it gets worse, and it makes complete sense like it is um I can’t believe I didn’t really know that before but that is really interesting.

LILY: We do have that sense of you know, I think of it as pride but it might be different for other people when someone comes into your home you are welcoming them into your space and yeah maybe we over simplify how much of a big impact that can really have, so that is really great to know.

BONNIE: That is a simple way to help your loved one who is hoarding and who maybe doesn’t want to acknowledge that there is a problem or do something about it but that is a simple way for you to help them is just by going and visiting and just being there with them.

LILY: Sitting there with them.  Yep that’s great

DR RANDY FROST: Exactly

LILY: Now Dr Frost if you see hoarding tendencies in your child how do you even begin to address that, what are some of the things that you should consider?

DR RANDY FROST: We don’t know too much about early behaviour, we have seen hoarding in young kids so and for the most part it is pretty easy to tell that this behaviour is out of the ordinary.  So a child who gets exceptionally emotionally upset when anything is thrown away, even a piece of mud from their shoe um it the kind of emotional reaction is so extreme that parents really know there is something going on here.  You know all kids save stuff and all kids like to save the boxes that things come in and play with them and so forth but what happens is that typically the interest in those objects drops out in short order um and so we don’t know if in young kids that interest is just there or whether right from the start whenever this starts it is just the emotion is just really way out there in terms of the attachments.  Now kids are really interesting area of hoarding about the nature of attachments because we know that these kinds of attachments are various kinds so one sort of category of them that is quite interesting is that the sense in which possession offer the opportunity for something in the future and have a relevance to the person’s identity and sometimes that has to do with their past identity so there is some ideas developing about  the way in which this attachment forms and the importance of the attachment so and this is something that the ideas have been kicking around for a long time, if you are familiar at all with the French novelist Marcel Proust, Proust wrote a work called Remembrance of things past and in it was a story of him being out somewhere and eating a Madeline cookie and that cookie brought him back to his childhood of when he remembered visiting an aunt who fed him tea and Madeline cookies and the interesting thing about it is that that experience, that sensory experience of tasting the cookie brought back the memory in an intense way, it wasn’t just remembering his aunt, it wasn’t just remembering that episode but it was a visceral kind of transportation back to that time when he felt the way he did then.  I mean the comparable experience for most of us I think is when we hear a song from our childhood, so if you hear a song from your childhood it brings back yeah a memory but it brings back more than that, it is a visceral kind of experience where you feel the way you felt when you were listening to that song as a teenager of young teenager and that is the kind of experience that many people with hoarding disorder have at the sight of a possession.

LILY: That’s a really great way of explaining it, I am going to give it a little bit of TMI here, too much information but I used this specific soap when I was in labour and now every time I smell it, it takes me back and it actually makes me really uncomfortable.

DR RANDY FROST: Yeah image that it was something that brought you back to the time when you know your child was a year old and everything was magic and special and the idea of getting rid of that and never experiencing that feeling again and how hard it would be to give that up, that that pass, that is regenerated by this object.

BONNIE: Yeah

LILY: I guess a similar thing that I could relate to that in like a positive way would be like when you look at a photo album that you haven’t looked at in a really long time and that takes you back and just you know

BONNIE: you really feel

LILY: so positively overwhelmed.

BONNIE: It’s a nostalgic feeling but I understand especially now as a mum with 3 kids that are you know 5,4 & 2 and I am out of the baby phase and I do get that little pang sometimes where I look at something that was a newborn thing and I think oh I am not going to do that again because I am done with that, so I can see that identity wrap up in the stuff.

DR RANDY FROST: Yeah exactly.

LILY: All right so unfortunately we are running out of time but we of course have to ask for the people who a listening out there if they are in a situation where they think that they need help and that identify hoarding behaviours in themselves where do they find a specialised therapist, what recommendations would you have?

DR RANDY FROST: One of the best places to look is the international OCD foundation and they have a therapist finder and I think a therapist finder probably will cover Australia as well, um Australia has a lot of resources for dealing with hoarding especially throughout the East Coast, many of their towns have hoarding task forces or hoarding coordination committees that offer help and resources so um there is quite a bit out there in local communities.  As well as the universities, there are people at Swinburne in Melbourne, there are people at Flinders in Adelaide, there are people at the university of Sydney or the University of NSW um and Deacon University so there are quite a few people in Australia doing hoarding research and research on treatment and treatment outcomes.

LILY: Great and then also I am going to go out on limb here and say that you know of some good books as well Dr Frost maybe some of them that you have written.  What books would you recommend?

DR RANDY FROST: Well one that I was mentioned before on Harm Reduction is written by Michael Thompkins and it is a book that describes, it is called digging out, is the title and it described the Harm reduction program so it is quite a good book, um

BONNIE: I have got that one

DR RANDY FROST: We have a book out called Buried in Treasures which is used for the buried in treasures workshops so these workshops, each week of the workshop deals with a different chapter of the book and so everyone reads the chapter of the book and does the exercise, some of them do the exercise together in a group um and we have some pretty good data on the efficacy of that program and so those are a couple of books that are worth getting and our book stuff is more of a book for the general public talking about this problem and a very different way a lot of cases we talk about and some of the people we talk about um in a way that is different than you see in most research or clinical studies.

BONNIE: I have to admit Stuff was one of the first books that I read on hoarding disorder that really opened my eyes to that different view point that people had and the one thing that always stands out in my mind is, it is Irene isn’t it that the main subject of the book?

DR RANDY FROST: Yes

BONNIE: Um the yoghurt containers and how she couldn’t put clean yoghurt containers into the recycling bin because then they would be sad that they weren’t being kept with the yoghurt contains that were been kept and that was just revolutionary for me.

LILY: Amazing

DR RANDY FROST:  Yeah, yeah, we see a lot of anthropomorphising.

LILY: I was about to say but I didn’t want to get the word wrong

BONNIE: Lily is frequently saying words wrong, she thinks that Décor is decor.

LILY: It is so funny I don’t how I managed to get to my age, and I have been saying décor wrong

BONNIE: And get through a degree…

LILY: Well it has been so fabulous talking to you today and excited to speak to you hopefully again soon but unfortunately, we have run out of time for today.

BONNIE: Thank you very much

DR RANDY FROST: Thank you for having me I enjoyed it.

LILY: What an amazing episode with Dr Randy Frost.

BONNIE: I think it is time for this week’s Tidy Task though, so what we would like you to do for your tidy task this week is we would like you to get informed about hoarding disorder so grab a copy of Randy’s book Stuff or Buried in Treasures or if you are really into some meaty material the Oxford Handbook of hoarding and acquiring, Randy’s latest book.  The Oxford handbook of hoarding and acquiring Dr Frost’s most recent book.  Join a group online about hoarding or clutter and remember that behind every disorder is a human being who deserves your love and support just like anybody else

LILY: And that’s it for this week’s episode, thank you so much for tuning in, we are so glad you chose us to have in your ears.

BONNIE: And remember PROGRESS NOT PERFECTION.

LILY: See you later

BONNIE: Bye

We would love to see the conversation continue, head over to the Little Home Organised Community group on Facebook, ask questions, find motivation and share your before and afters, and if you enjoyed the show please help us going by hitting subscribe on Apple Podcast, Spotify or where ever you listen.  It is free and ensures you do not miss an episode but if you really want to share the love leave us a rating and review.  Trust me it makes all the difference in the world.