 Hello everyone, my name is Jane Katten and I'm the CEO at Agewell. I'd like to welcome you to our show today called Aging Matters. I'd also like to thank MVP Healthcare for their sponsorship of our program every month. As you may know, Agewell is the largest area agency on aging in the state of Vermont and we serve clients who are over the age of 60 or under the age of 60 with a disability on long-term care Medicaid. Our mission is to make sure we wrap around services to our clients so that they can remain living healthy and independent lives in the setting of their choice. We also serve our clients in four counties across the state. That's Franklin, Grand Isle, Chittenden and Addison. Every month on Aging Matters we like to find topics that are really important and help us all to understand how to age well, because after all we're all aging. This month we have a very interesting topic that we're going to explore with a special guest, Derek Souza, who is a specialized Care and Service Coordinator case manager at Agewell. Derek is also the co-chair of the hoarding resource and support team in Chittenden County. So he has some really special expertise around this topic of hoarding disorder, which we're going to explore in more detail right now. Welcome, Derek. It's so nice to see you. Thank you so much for having me today. I am very excited to talk about this topic, so thank you. Well, we're lucky to have you. Derek, before we dive into our questions, maybe you could tell our viewers a little bit about what a specialized case manager does at Agewell and a little bit about your background. Sure, sure. So I have been a specialized case manager with Agewell for the past four years. We mainly focus on some more complex issues with aging, so mainly focus on older adults in states of self-neglect or experiencing hoarding, squalor, or those that are unhoused. I first got started with Agewell back in 2009 as an AmeriCorps, and I loved the work I was doing, and so yeah, now I'm a full case manager and just very happy to be here and happy to the work I do every day. Well, we're so lucky to have you as one of our specialized case managers because I know the work is incredibly complicated. It's very hard every day, so thank you for doing what you do. Derek, before we get into all of my questions, maybe we could set the stage just with this first one, and that is, can you help to define what a hoarding disorder is? So I thought maybe we could start with the technical definition. So this is out of the DSM-5 or what we call the manual of mental disorders. So hoarding is the persistent difficulty, discarding or parting with possessions regardless of their actual value. So I think the most important thing that we're going to talk about today with hoarding is that it's very difficult to discard of those items, and the actual process of discarding can be very traumatic. And even though a lot of us can think that it's very easy just to throw out items, get rid of items, empty our houses, those that are experiencing hoarding disorder, that piece is very complicated and can be very problematic and traumatic if it's done very quickly. So I hope that gives a good overview of what we're talking about today. A great definition, so that really helps to frame our conversation because I have done a little bit of research on this. So I was actually shocked when I read some of the literature and some studies that have been done on hoarding disorder, and it says it's estimated that hoarding disorders affect as much as 6% of the American population, and that is almost 19 million Americans. And many of the researchers note that these figures are underestimated, and a vast majority of hoarding remains unrecognized and untreated. So Derek, with those pretty compelling statistics, why do you think there's so much underrepresentation from individuals who are impacted by hoarding disorder? So there are a lot of different reasons, but I think first, hoarding, there's a lot of stigma around hoarding, and I think that's a good time to talk about the term hoarder. We really try to not use that word. It's very negative and can be very negative when you're talking about someone. So there's a big stigma around hoarding, and people can feel very ashamed of what their houses look like, and so the more people collect and they will isolate more and more, and a lot of times people that are hoarding will tend to close the blinds and things like that and just isolate themselves more and more, but another reason that people tend to not report is that people want to hold on to their items too, right? They're afraid of people coming in and doing deep cleans and removing all their items, so it's very different than a lot of other maybe mental health disorders where people are seeking treatment hoarding. Those are their things. They love their items. They love their belongings, and so there can be a real trust issue with outsiders or family members that want to come in and get rid of those items, so you see a lot of isolation that way as well. Oh, wow, and we also know from one of our other shows that social isolation affects older adults for a lot of reasons, and now it sounds like the hoarding disorder issue contributes to that as well, so that's really unfortunate. Derek, can you talk about how hoarding is different than collecting clutter or disorganization? And I'll just take a little sidebar here. You and I talked about this the other day a little bit, but for example, you could walk into my garage and you would find a tremendous amount of clutter, and if you spoke to my husband, he might say, oh, I really want to keep those things, and so, you know, there's a line, I guess, a progression of, as you were saying, from these different means of collecting, creating clutter than disorganization to hoarding disorder, so can you define a little bit about each of those? Yeah, I think, you know, as a case manager, I think a lot of people, you know, we're not in the business to like just say, oh, you can't have possessions, you have to have an empty space, you know, people are allowed to first off have collections, people are allowed to be messy, you know, we don't have to have extremely tidy houses, but where hoarding really steps in is that first off, you know, the relationship that one might have with something that we consider that doesn't have any value, for example, like paper cups or towel rolls, they might have a very deep connection, and it might be very easy for us to write off, ah, it's just a paper cup, throw it out, or, you know, plastic bins, items like that that we would find disposable or useless, there is a whole story of connections, you know, with that person. You know, other things, other types of like collectibles and things like that, they're okay to have, but I think it's that real like, you know, if I were to come to your house and say, maybe we have to get rid of these items, you know, it would be, you would be okay of saying, okay, let's go through them, but, you know, it's that I can't get rid of this because that item is actually part of myself, and you're kind of worried about where that item is going. And then the other thing, you know, the main thing that we're always worried about is the fact that is your collection overtaking other parts of your house, or is that clutter overtaking other parts of your house, and so, you know, do you have so many things in your home that you are not able to cook anymore because you have your stove top cluttered? Are you starting to store things in your bathtub, and so you're not able to shower anymore? You know, those types of uses of items in your home can be detrimental to one's health, and so, like, you know, are your things getting in the way of your life? Can you no longer invite your family members? Can your grandkids no longer play in your house anymore? And then, you know, the other thing, are there fall risks and fire hazards? There's a lot of things that we think about when we're thinking about hoarding and the difference between hoarding and collecting, so... Okay, so... Yes, that helps me to understand. So, yeah, I know a lot of people are worried, and a lot of people say, oh, you know, I'm a hoarder, I have a collection of trophies, or I have a collection of, you know, stamps or coins, but it's okay to have collections just as long as they're not taking over other parts of your life, right? And creating safety hazards, like you said. That's the thing we're worried about most, safety, fire, being able to do activities of daily living, which is where those things start to change, I imagine. Yes. It's very interesting. There's another term out there that we didn't talk about just now. So, the difference then between hoarding disorder or hoarding and squalor. Perfect. So, as a case manager from Agewell, as the specialized case managers, we go into homes, maybe it's the first time we've seen a home, and it's tough to differentiate if it's something that's hoarding or squalor. Just real quick, squalor is when there's... Imagine you stop washing your dishes, and kind of you just didn't want to wash them anymore, and what would that look like after a week, two weeks, three weeks a month? And every time you ate, things just kind of fell on the floor and things like that. It looks very messy, but that person doesn't have a real connection with those things. If we wanted to come in and say, hey, let's get this cleaned up, the person will be okay with cleaning that up. Hoarding can look similar sometimes to squalor, sometimes it doesn't, but the emotional connection with those things, whatever it may be, newspapers on the floor, mail on the floor, maybe tissues, something like that, old newspapers, there is an emotional connection. And if I were to come in and say, all right, I'm bringing all these out to the garbage, there could be some kind of break with that person, or lack of trust or something. It could be very catastrophic. So hoarding doesn't always have to be something messy. It can be piles of boxes that are organized, but squalor is always that kind of very dirty, unsafe, unsanitary home. And I imagine with all your experience, you can go into these different settings and figure out pretty quickly which is which. Yeah, it takes a little bit of testing. We're person-centered, and so it's a lot of motivational interviewing and speaking to our clients and understanding what's happening, what's their relationship with their things. So we always want to listen first and then act second. Oh yeah, that's a wonderful approach. Derek, tell us, is hoarding more common among older individuals versus the general population or is it pretty equal across the board? Yeah, it's a tough one to say. I think we tend to see more older Vermonters having issues with hoarding, but I do want to break this idea that people are hoarding because there's this great depression mentality. We're past that already and people are still having issues with hoarding. And I think hoarding can happen to anybody, but what we see with our population, the older Vermonters, I think decluttering is a very difficult process. Boxes are very heavy, and sometimes they're just not the physical ability to lift boxes, take things out of their home. So sometimes they need an extra hand. Another big issue I think we see more with the older population is that it's very challenging, but when a loved one passes away, when their spouse passes away, a lot of times they'll stay, they want to keep those items and it can be really tough to let go of those items because you love that person, they've lived with you your whole life. And when children move out to you, your kids can leave all your items in your home and you want to keep them as well because they might come back at some point or you might be holding on to them, so we tend to see that more with the older population. Right, I tend to have some of that furniture from my children too. One of my rooms downstairs. But those again are just really important differentiations and I think I can relate to the stories you're telling certainly about people who may have been living in their homes for a long period of time and it's just kind of exhausting to think about how you have to declutter and do the job, right? So it is a lot of work, absolutely. Derek, can you talk a bit more? Earlier we were alluding to social isolation as it relates to hoarding disorder but the impact of social isolation on those individuals who are affected by hoarding disorder. What do you see? Yeah, well especially with the pandemic, there was a period of time where we weren't doing home visits and so there was a lot of my clients that we weren't able to see and some of the collections and the clutter built up and they loved their possessions but at the same time there's shame involved in all of that and so the bigger the collections and the clutter built the more they experience isolation and so those weekly visits from their grandkids may not be happening anymore because the house is not safe. They don't want them in there. They don't have places to sit anymore and so there's a terminology we use we call it a cockpit and you imagine like in a jet or a plane where you kind of just create this wall around maybe a recliner or sofa and you put everything kind of there and you kind of build these walls around you and so even in your own home you start to even sink in and isolate yourself within the home so and then it's just a lack of not wanting to go out and then a lot of embarrassment a lot of people like to call you like a pack rat or a slob or something like that and so people are very hesitant to have you come in the blinds are drawn and so and that's exactly the opposite of what I think a lot of people want they just need somebody to come in and not to shame them and not to say oh this place is filthy this place is a dump, you know that's the exact opposite we need when you're working with a family member or a friend that's experiencing hoarding I always say like what I said before first listen and then take action and understand what's happening So this is probably a great segue into my next question because you just alluded to sort of the world shrinking and things becoming more and more isolated and that hoarding behaviors don't just affect the individual but their loved ones too so I can imagine it's very challenging for the loved ones to understand how to help and so for example would it be harmful for that loved one to go in and I think you mentioned this demand that they get rid of their things and dispose of them without their permission just get it done because they care for their loved one Yeah, I know and it can be very frustrating for family members to come in you're worried about that person you don't want them to fall have a fire, there's so many risks or even if you need to call the EMTs to make sure there's enough space for fire and rescue to get in with a stretcher if need be so yes we my recommendation always is to start small when you go in and you want to just deep clean and get rid of everything it can be really overwhelming and traumatic a lot of times when we see these deep cleans people can tend to relapse and apartments or homes can be filled up in a matter of months again it really takes the individual to understand what's happening and for them to start it really takes them to take that small step forward so always small steps always small steps as our key in hoarding intervention hoarding intervention is very slow and it can be very monotonous and it can be a lot of repetition there's a program out there hoarders and people have seen it is TV and there's some action and drama to it all the time and so that process of these giant deep cleans can be very traumatic and so we really want people to take time and patience to work with the individual and have the individual do a lot of work themselves because it's about learning new things about how to manage their space and their life and I imagine it takes a lot of patience oh my goodness so Derek how does age well you've talked a little bit about your role as a specialized case manager but how does age well support families individuals and caregivers to address the needs of someone who is affected by hoarding disorder and clutter any of the spectrum so first we are as case managers we might be the first ones to be there to talk with that individual and we are there to create a relationship of trust and to connect our clients or these individuals with different types of assistance that may be out there so for example making referrals to the hoarding resource and support team of Chittenden County to get different strategies we have an example where women had a lot of items and we couldn't get to the furnace in the house and the furnace had broken and so working with ourselves from age well and CVOEO and other agencies like Champlain Housing Trust or Brilliant Housing Authority we were able to declutter the home get to the furnace have the furnace replaced and worked our goal always is to have seniors age in place and that's what we're there for is to make that bridge and make those connections for people and have some great community partners to work with that's how we glue it all together it sounds very challenging but rewarding at the same time I was going to say real quick there is we also do workshops called Buried in Treasures which is a self-help group it's a great book for people to get over there are issues with their belongings there's homework assignments and a lot of reading and material about it and we will facilitate those at age well from time to time and I've heard that when we have held those at age well it's like a sell out situation and the great thing is after the facilitator from age well is done those groups continue on their own so it's a great peer support oh that's fantastic so as we've talked about what age well can offer the similar resources available throughout Vermont yes we there are triple A's and are great triple A's but also we are trying to start more and more hoarding resource and support teams so there is a task force there are two bugs in hoarding in northeast kingdom and washington county is also starting a hoarding and resource and support team so we are hoping that more and more will pop up across the state so if anybody is looking to start any out there please please do because they really pull in great teams and great community partners together and it sounds like you're a great person for them to reach out to as well that's fantastic last questions for you we always like to think about these interventions and the resources and the supports do you have any success stories you'd like to tell us about right now with the housing crisis and everything I think anytime we can keep a senior in their home that's what I really work for every day and there are many times we have been successful and a lot of the clients I work with have done and started to do the work themselves there is a lot of help and we are there to help to intervene and do interventions and things like that but what really is successful for me is when people understand and they start doing those little things every day and a lot of times with my clients I say if you could do 10 minutes a day and get rid of that just one item that's all we, that's great and it's like running a marathon you can't just go out and run a marathon tomorrow you can't just deep clean your house in one day but if you start little by little it may look small but just removing that one item and then growing and growing and growing that's success for me that's awesome it's about the long haul and taking baby steps exactly baby steps baby steps are the most important Derek I want to thank you for your presentation, your information all the resources that you've offered us have been fantastic and I know that our viewers really appreciate what you do as well so to our viewers if you believe that hoarding has affected your life or someone that is close to you or a loved one please know that there are resources out there available to you community agencies Agewell is here to help as are many other services in Chittenden County and across all of our service areas so again I always like to end with just our helpline number because that is a number you can call if you do need to reach out for assistance and that number is 1-800-642-5119 anyone who needs help can just pick up the phone dial that number and get to our team at Agewell and we're here to help so thank you again for joining us on Aging Matters next time we'll have another really interesting topic to share with you all I look forward to it take care and thank you