Differences in sensory processing were linked to a diagnosis of autism spectrum disorder (ASD) before its inclusion as a core characteristic in the revised DSM-V. Yet, research focused on sensory processing and meaningful participation of children and youth with ASD remains relatively scarce. Although refinement of the International Classification of Functioning and Disability (ICF) relies on first-person accounts, longitudinal studies that foreground sensory experiences and its impact on involvement in a life situation from first-person perspectives are largely missing from this body of research.In this sub-study, we drew from a longitudinal participatory research project consisting of two separately funded studies with children and youth with ASD and their families between 2014 and 2021. The participatory project used photovoice (PV) methods to identify the primary concerns related to socio-spatial exclusion (PV-1) and the action steps needed to redress them (PV-2). The objective of this sub-study was to understand what really mattered to children with autism, their parents, autistic youth and an adult mentor to consider how their experiential knowledge could deepen understanding of meaningful participation.We used an overarching narrative phenomenological and aesthetic theoretical framework to focus data analysis on the bodily sensing experiences related to significant moments or events, followed by an inductive thematic analysis of what mattered about those moments.motion madness); (2) the indivisibility or layering of sensory and social experiences (squishing and squeezing); (3) the impact when “tricks” to stay involved are categorically misunderstood (When you don’t respond in the correct way), and (4) how care and consideration of others can lead to innovative solutions for inclusion (I can’t be the only one). Listening to the bodily-sensing experiences of children with ASD, autistic youth and adults, and their families in their own terms has implications for remapping the ICF and envisioning sensory curb-cuts to access, initiate and sustain occupational participation for all.The topical areas of concern that emerged from analyses were: (1) the relationship between sensory experiences and mental health ( Sensory processing, such as hyper- and hypo-reactivity to sensory stimuli in the environment, is included as a core characteristic of autism spectrum disorder (ASD) in the revised Diagnostic and Statistical Manual of Mental Disorders (DSM-V) under the category of restricted, repetitive patterns of behaviors, interests, or activities . Early oThe research on children and youth with ASD and participation is also relatively scarce. For example, Participation, defined as “involvement in life situations” , is concThus, in this article, we draw from a longitudinal, participatory research project that consisted of two separately funded studies with children and youth with ASD and their families that took place between 2014 and 2021. We used photovoice methods, with the overarching aim to identify the primary concerns (barriers and facilitators) to socio-spatial inclusion (Photovoice-1) and action steps to redress them (Photovoice-2). In the sub-study that we report on here, our objective was to understand what really mattered to autistic youth about their bodily-sensing experiences to consider how their experiential knowledge could deepen understanding of participation from first-person perspectives.This qualitative sub-study draws key exemplars from a longitudinal participatory project, consisting of two studies funded through separate mechanisms across a 7-year period. Participatory research is an approach in which key stakeholders who become co-researchers identify key concerns and develop actions to address those concerns . In our For recruitment of the first photovoice study (PV-1), a parent who was a key stakeholder (NM) informed families in her network about the project. If they were interested in participating, researchers met them, and completed a formal consent process. Six children between the age of 5–12 years old  and their parents  were recruited. Recruitment for the second photovoice study (PV-2) consisted of re-engaging families from PV-1 who were still interested and through personal networks for older autistic youth. In total, 10 autistic persons  along with four parents were recruited. In PV-2, the youth, older youth and adult identified their own gender. Three of the youth with autism and two parents were in both studies see .Sensory processing questionnaires were used in both studies to foster discussions around sensory experiences. We report on them here to situate their experiences. In PV-1, we used the Short Sensory Profile (SSP) , a 38-itThe research settings were based in community centers for youth with disabilities in the greater Montreal area in Québec, Canada. Both studies were approved by a university ethics review board.experiences related to sensory processing from a first-person perspective rather than positivist-biomedical terms that focus attention on sensory processing from a neurological perspective  and-or categories   and multiple perspectives . Events The primary method for data collection across the longitudinal participatory project was the group meeting to discuss images taken. These meetings were structured as “collective narratives,” a method in narrative phenomenology in which each person has a chance to speak without interruption . We alsoThe first study emerged from a small research project initiated by researchers at a local children’s hospital to understand the resources needed by parents of children with ASD. However, the parents’ primary concerns were more related to their exclusion from—and lack of awareness about the sensory challenges in—their local communities. Subsequently, the first photovoice study was a pilot project using ethnographic methods and participatory approaches to understand what really mattered to families with children with ASD, sensory experiences and social-spatial exclusion from their first-person perspectives using photovoice . All famWe conducted two collective narratives to understand what really mattered to the parents and children, using the following questions: “What are your favorite activities, including any that take place in public spaces?” and “What would you like to do with your children in public spaces that you cannot do at this time?” (120 min/group). We then organized a collective narrative in which photographs and videos were shared in response to the question, “What are barriers to doing what they would like to do in public spaces?” (180 min/group). The children (including the youngest at age 6) and their parents contributed photographs. Most of the stories were told by the parents, with two of the older children sharing their experiences at the third group. We conducted one interview (90 min/interview) .The second study explicitly used a participatory approach in which the initial grant application included a parent of a youth with autism from PV-1 who was the project leader, a sustainable designer who guided the public facing initiatives, and a researcher who guided pragmatics related to academia, such as the grant writing/submission, ethics, and management of data collection/analysis . All autWe organized four collective narratives (120 min/group). The participatory process consisted of the following steps. First, the youth contributed photographs and stories about their experiences in the specific places they envisioned change, with parents adding occasional anecdotes. Second, action steps emerged during and from these shared experiences. For example, at the first collective narrative, shared stories about sensory experiences in spaces they had recently frequented led to discussions about what objective measures could be used for others to understand their sensory challenges in those spaces. Third, individuals in the group found tools which they vetted and modified to map and measure the actual sound levels and sensory experiences in those spaces. Thus, each action step emerged from and determined the topic of subsequent meetings. Due to the various school schedules of the youth, these collective narratives were held on weekends, with lunch being provided. Fourth, after all youth had shared their experiences, the groups discussed resources needed and next steps. This led to the invitation of a guest researcher who showed them technologies that could augment their data collection. This phase was disrupted and then ended prematurely by the social distancing requirements and dramatic changes in the routines of the families during COVID-19. During the 1st year of social distancing, we contacted nine of the autistic co-researchers or consultants by phone or in-person to follow-up, asking: (1) How does the sensory environment impact you; and (2) What do you hope will come out of this project? Four youths provided written responses, two youths provided video-clip responses, and field notes were taken of phone call or web interviews with two youth and one adult  .stress, anxiety, meltdowns, drained), heightened emotionality (hate), and/or language (insane). Pseudonyms were used for all participants, apart from the adult autist who is an advocate. Exemplary quotes were chosen by consensus and the final themes emerged during the iterative analysis between the three academic researchers, with a lead co-researcher providing critical feedback (NM). The results are presented to keep the first-person perspective intact to keep specific experiences situated within specific contexts.For the sub-study, we identified significant experiences across PV-1 and PV-2 transcripts. Significant experiences are those moments which stand out from the everyday flow of experience and can be identified by shifts to present tense, use of metaphor, and heightened emotionality . KL provAs much as possible, we used the self-identifiers used by the children and youth when they shared experiences . These self-identifiers did shift back and forth during and between collective narratives and interviews and, thus, we use both terms within the manuscript. In addition, we use the concept of bodily-sensing , everyday civic ones , or private homes.whenever they go somewhere: “Whenever we go somewhere, if there’s a really bright light, it hurts my eyes and my brain really can’t focus.” Kathy adds how her son, Karl , would wear sunglasses at the Children’s Hospital “because the lights were too bright and they were hurting [his eyes].” For Breanna, the hurt is not limited to bright lights, but also comes with the smells in a local mall’s bath and body shop: “The perfume and the smell, it really hurts, like, it goes up to my brain and it really hurts me in my brain.” Victor  adds, “Dogs barking or howling, it’s like glass shattering in my head. As for vacuum, it’s like shaking my brain multiple times because of the sound.” These painful experiences are an inescapable part of everyday life. They are, as Breanna underscores, “always something in the back of my mind, in every place I visit.”The autistic youth in the participatory projects described sensory experiences in terms of pain. These painful experiences are as Breanna  indicates, For Cassandra , an older youth mentor, the technology-related sounds that pervade her classroom at university are painful:Everybody is on their laptops typing at the speed of light and that tikatik noise, which drills into my ears to the point where I could not focus on anything the teacher was saying ‘cause all I could hear was the noise of the other students around typing, and I would have [panic] attacks. I would walk outside of the class because that sound of people typing on their keyboards.drill so intense that she has panic attacks and must leave class. For Casey, an adult mentor (PV-2), it’s all the sounds in outdoor public spaces:The incessant sound of typing on keyboards is a I get overstimulated very easily. Like, just on the street with the cars, sirens, people, just the sound of everything. Especially awful noises, I am extremely sensitive and […] very high and low frequencies that other people can’t even hear are often really painful for my ears.As an adult mentor in the group, he offers a nuanced explanation of how the frequencies that others cannot hear causes the pain.too much of everything going on that was one of the biggest barriers to their children’s involvement in a life situation. For example, one of the parents described how her son Karl (age 11) would sit in the top near the handles of the grocery cart:For the children in the first photovoice study (PV-1), the biggest barrier was neither articulated in terms of discrete sensory systems nor multiple sensory systems. Rather, as the parents discovered in one conversation, it was the overall experience of Kathy: Karl has to be in a cart because he can’t have anyone touch him. And he has to sit on the top because if he sits on the bottom, people might bang into him as we’re grocery shopping. And there’s just way too much motion and commotion going on. If everyone walked in a clockwise motion, I think maybe we’d be better, but-…: (a father of a preschooler with autism) -He fits?Saul: Oh, yeah. Trust me, we fit. Trust me, we even get our feet in there too. And what Karl does, if there’s too much motion and commotion going on? He shuts down and goes to sleep. Gone. Done.KathyNina: It’s funny. Do you say, “motion and commotion,” or does he?Kathy: I call it “motion and commotion.”Nina: Okay. Because Victor calls it “motion madness” […] that’s when Victor would say, “that’s motion madness. I’m not going there, it’s motion madness.” He made it up.Kathy continues saying that Karl will not go on the city bus either, because of the sound, smells, and “all the motion and commotion of people.”madness not only impacted his involvement in his work internship at a laboratory in the pathology department of a hospital, but also his mental health: “There were so many noises and the talk and other people. [….] it just like drove me insane.”More recently (PV-2), Victor found that online platforms used to learn during COVID-19 helped alleviate school’s motion madness, stating, “I like the gallery view so I can see everyone instead of the screen changing every time someone talks. It’s too much change.” Yet, eating out remains a challenge since “restaurants with multiple TV screens are stressful and distracting,” adding that “There is too much going on.” Casey (PV-2) is quite articulate about how the bodily-sensing experiences that Victor links to madness and the layering of sounds and frequencies that drive Casey insane are amplified with the unexpected nature of sensory aspects of and in the built environment. This additional barrier to participation was reflected in a conversation between parents when their children were younger. Nina, Victor’s mother, remembers the challenge of public restrooms when Victor was about 8 years old:Victor’s motion It isn’t that he doesn’t like toilets, but he hates the automatic flushers. He can’t stand that because some of them [motion detectors] are too sensitive. If he has to sit, he’ll jump up because he—and he’s not afraid he’s gonna get flushed down or anything—he just hates the element of surprise. ‘Cause some of them [motion detectors] are too sensitive and at the Theme Park, they have them. When we went to the Theme Park, he held his business for so long, ‘cause he’s like, “I’m not going in those [public restrooms].” And I said, “You just gotta go,” and sure enough, he did it and I heard him go, “Ah!”A researcher asks, “Oh, he screams?”Yeah, you heard him outside. He screamed. It scared him. And that was, like, three years ago. Now, he just avoids it. If he sees it, he avoids it. He’ll go somewhere else. He can’t stand it. He just doesn’t like these things.Two other families also concurred that they had the same experience, with Paul  and Breanna  underscoring the automatic nature and sound of hand dryers.all of a sudden:Cassandra, in a separate interview, links sensory sensitivities to the added impact when something happens Especially with sensory sensitivities. I used to notice a lot of the time, if it happens all of a sudden-, if I’m not expecting this place to be really loud or I’m not expecting this smell, it will affect me to such a great degree. […] Obviously, the thing with sensory sensitivities is the more overwhelmed you are, the more anxious you are, depressed or frustrated.overwhelms her, the ultimate impact is on mental health . The experiences of the autistic youth and adult underscore the tight entanglement between bodily-sensing experiences of hurt and pain, mental health  and any semblance of participation or involvement in a life situation.When the level of sound or smell exceeds Cassandra’s expectations or driven insane, situated within a work internship in a pathology department at a hospital, also underscores how painful bodily-sensing experiences are inextricably linked to social and built environments.Casey’s (PV-2) experience of being There were so many noises and the talk and other people and then for certain chemical reactions, they had these alarm clocks, and then the buzzers went off and then the telephone, and then on top of all the machines-, on top of that, people really like to turn on the radio-, yeah the radio. It just like drove me insane.and then, and then, and then, and then on top of all, on top of that—drives Casey insane. For the youth and their parents, the layering of the sensory-social was described as the source of stress, pressure, and feeling trapped.The layering—Nina (PV-1) described the challenges she faced when she had to take Victor, when he was younger (∼age 12), to the drop-in clinic for a recurring illness:Every time he has strep, which is, like, every month, we have to go to a drop-in clinic. Often a lot of public waiting rooms have these things where you’re face to face, like you’re sitting so close together. So he doesn’t like it because everyone is just staring at each other, so you’re trying to look away. He can’t stand that.When he is older, Victor  more fully describes what he could not stand from his first-person perspective:Hospital waiting rooms are the worst […]. You are forced to be in the tiny room with many people, lots of smells, noises, babies crying, kids jumping everywhere, too much. I get really stressed.kids jumping everywhere that leaves him really stressed. The stress of the sensory-social layering also occurs when he uses public transportation:Ultimately, it is not just having to look directly at others, but the additional layering of smells, noises, and the motion madness of …very busy and crowded transport, you have many people squishing and squeezing you. It’s noisy and smelly and way too many people. It’s stressful. I cannot handle the busy of people. It gets so bad sometimes I cannot get off the bus or metro and I can miss my stop.squishing and squeezing from, what he calls, the busy of people creates so much stress that Victor remains, literally, frozen.The Many times, I have to get off at a different stop and walk because it’s too busy. I often leave 1–2 hours before and get up really early so I don’t need to be with so many people.He either ends up walking further or leaving one to two hours earlier. However, there is a price.But then I need to wait in the cold outside until I can go [in] to school. It’s too early, and they don’t let us in that early, and it is freezing outside. But it’s better than a stressful squished metro ride.stressful squished metro ride and walking further or waiting in the cold, Victor bears with the latter. Not going to school is not an option. As Sophie  explains, she often has “no choice” but to wait at the bus stop, despite the smell of someone smoking and “It’s not easy.” Casey’s experience of public transportation provides some additional details:Having to choose between a If you’re in a metro and you don’t like to be touched? Well sorry, you’re never going to be on there at rush hour. It’s like sardines, right? So, it’s really hard. If you can at least get a chair, it’s going to help, because you have less people and their bags squishing you.Casey describes being squished during rush hour in terms of a can of sardines and the sense of touch as unavoidable. He tries to describe this experience for the non-autists in the group using sensory processing terms:Especially in the summertime there’s a lot of smells on the busy metro and the buses and so on. The sound and just the visual, it’s chaos. It really is like-, for you who don’t have autism or sensory processing [challenges] that don’t even feel that stress-, it’s like I get stressed out every time I go in public transit. I just kind of suck it up, but I hate it and I’m drained.suck it up, an effort that is tied to intense emotions (hate) and leaves him feeling empty (drained). This experience of public transportation is so overwhelmingly shared by the others that it leads to one of their hoped for actions .In the end, Casey just has to hell time: “For me, getting around the hallway was an absolute hell time because you have 5 min to maneuver up to halfway across the building, ending up being in crowded hallways.” Victor also describes how the mix of too much going on, the press of others in the small space of a locker room and time constraints adds to the experience of stress:Among the autistic youth and adult, the everyday pressure of time and crowds amplified the sense of pressure in their bodily-sensing experiences. For example, Paul  recalls his experience of getting around crowded hallways at his high school as Locker rooms are really busy, noisy. There is very little space-, very stressing, too busy, too much going on. It is a small place and we are pressured to rush and get dressed fast for gym. Lots of noises, weird smells, and people pressing against you.This double sense of “pressure” and “pressing” also occurs in situations in which time is not a factor:Bathrooms are really busy, like a stadium. It’s really stressful, there are too many people and too much noise from hand dryer, faucets, toilet flushing, line up people are too close.already inherently stressful:Like Paul and Victor’s description of the pressure, Casey’s experience of the layering of noise and crowds augments situations that are It’s already stressful having to go get a blood test, but with all the noise and crowd-, it’s too much, I cannot take it. It’s really chaotic. And then you have to go to this desk to talk about that and then standing-, standing in line, I always find it excruciating.excruciating. Yet many of these situations—public transportation to get to school, walking from class to class, locker rooms for gym class, and blood tests–are not really optional.This doubly stressful situation is experienced as excruciating might be attributed to his own lack of patience before interrupting himself: “I think it also has to do with patience-, with also feeling trapped standing in line in the crowd-, here it is … the more difficult it is to find.” In the end, Casey reasons that it is the experience of being trapped in a situation that makes it hard for him to find patience. For Cassandra, it’s often better to leave:Casey, reflecting further, questions if the experiences of I will leave early sometimes-, have to take a shampoo bottle, unscrew the top and like smell the shampoo bottle just to get the smell away or I’ll have to leave the house because the smell [of cooking] will be overpowering.patience, leaving). Yet, they both interrupt themselves. Casey reflects on how standing in line leaves him feeling trapped, while Cassandra interrupts herself to reflect on all the times she has first tried to stay in place by smelling something stronger than the smells that bother her. Still, the smell of cooking is, ultimately, so overpowering that she ends up leaving her home. As Cassandra astutely points out, the sensory and social cannot be separated:Cassandra and Casey first interpret their response to the sensory aspects of a hospital and a home in terms of their own characteristics or choices  Ohhhh [expressing empathy]Victor: Yeah…-, right in the hallway during lunch, where I don’t like it because [showing photograph of the hallway] everyone is like scootched together like a bunch of prison mates.Keith: OuffVictor: I’m like waiting here and everyone’s behind me. Every time I try to back away from them, to stay far, they come closer to me.stick up for himself.Victor then tries to So, then I decided it’s time to just stick up for myself. So when they were starting to get too close to me, when I was trying to have some room, I just turned around and said politely, “First of all, I would greatly appreciate it if you would give me some space, thanks.” They did, but then they did it [come close] again. I was like, “Ahem,” just to tell them to “go away.” Well, after as they continue to bother me, it’s like, “Man, I got to think of some other ideas.”He then tries another approach by standing next to the line while sharing his discomfort with the students to the side and behind him.When I got into the line, it was impossible because the line was already fully lined up. So, I just stood next to it [the line]. But when I tried to get in, they wouldn’t allow me. They said I have to go in [the line] and I told them, “I don’t want to! […] It feels uncomfortable. It’s like being in a prison cell.” So then they told me, “It’s that or no lunch.” So, I did not eat lunch that day.ahem), standing next to the line and explaining the situation to his peers—Victor’s experience of being caught in a situation amplifies. Between enduring being called something unnamable (the R-word) and being in prison or not eating lunch, he feels he has no option but to take the latter.Despite all his efforts—the polite request and thank you, the cue  along with intimate others at home  underscores the impact that occurs when the very intentions underlying actions to stay in place are misrecognized. For Cassandra, this also includes being categorically misunderstood by her peers:The critique from persons in authority at university .Even when the youth attempt to stay in a place, like Victor and Cassandra, their actions were categorically misunderstood  and communicate, an experience that drains him really fast.In order to be socially accepted, Casey must forgo using his everywhere and can have even more dire implications:For Casey, this double-bind experience is I was being accused of stealing something. And then-, when you don’t respond in the correct way or so according to them, then you’ve come across as even more of a threat. Then, I lose my ability to communicate in stressful situations like that and so-, so I cannot really tell them I am autistic. I just lose that ability.not responding in the correct way can be perceived as a threat and lead to accusations that could put one in an actual prison. Worse, the stressful situation makes Casey lose the very ability to speak, by which he could alleviate misunderstanding and defend himself. Even more, he loses his identity as an autist, which is integral to his advocacy work.As an adult, R word, weird, threat) or foregoing lunch, having a panic attack, or being drained by the effort to be socially accepted is not really an option. In the end, the autistic youth and adult’s intentions to stay involved in a life situation using individual tricks  were categorically misunderstood.The apparent choice between being categorically misunderstood when one doesn’t respond in the right way .calm. Ultimately, it is also the unpredictability of the sensory-social that concerned the autistic youth and adult. As David  underlined, its more about knowing in advance the type of environment and how one can prepare in advance. He longed for an app that “if it existed, to be able to use when we plan an outing.”What Victor’s experience delineates is that it is the social and built environment rather than a natural one that is often the cause of stress and that connecting with animals brings a sense of zones, emerged during the discussions during PV-2 as a critical modifier to the more common phrase of sensory friendly. After debating the relative merits of space or zone, they agreed that not only were zones within institutional and everyday public spaces a more achievable aim but one that would not separate them from others. They also reasoned that a zone, integrated into already existing spaces with proper signage, could also include others seeking a similar sense of quiet.To be able to prepare for a sensory-social environment using a quiet room or an app, however, would not fully rectify barriers to participation. The autistic youth and adult agreed that designated zones were needed across all everyday spaces. As David  best expressed, “more research [is needed] to continue to learn more and find ways to help and to advocate [….] talk to these commercial places, like restaurants, to let them know about sensory friendly zones.” The term, zones would align with her desire to educate others about autism:For Cassandra, a publicly accessible sensory friendly I always dreamed of, you know, putting myself in a place where I know there’s a lot of students and just handing out like things educating people on what autism is, you know? People that work in places like restaurants or even, you know, police officers, the security guards in malls, for example.She imagines that if others understand the relationship between the sensory experiences in social, built environments and mental health, then others would also benefit:I can’t be the only one who has meltdowns in malls or meltdowns in a train station. Sometimes all it needs is, you know, one security or two tops that has some knowledge and some awareness of-, they can make a training, they can train people, it’ll take them maybe two hours to explain to them. This is, you know, this is autism, this is mental illness, this is what you do, this is what you don’t do.what you do and what you don’t do, many others would benefit.Cassandra’s words, “I can’t be the only one,” stress the inclusive nature of her reflection. If the staff of different public services such as transportation, restaurants, police forces, and policy makers were trained to understand zone, whether actual seats or just a place to stand. For Cassandra, such signage could help with the process of training: “I feel that the use of a new disability symbol with help with that process immensely since it will show that there are more disabilities than just physical ones.” For Casey, such signage would also help others understand his actions:The autistic youth, their parents, and autistic adult all indicated across both studies that training or educating others was not enough. Although there were many stories of when someone who was educated or understood made all the difference for their experiences—whether a police person, a hostess at a restaurant or staff at a water park—what was needed was a universal sign. They all desired that such a universal sign could, for example, be placed in all public transportation vehicles to designate a sensory friendly I wouldn’t mind that something would be there that you can-, like, it’s in your card, or where people just know that you have autism. And I also find, at least, like dealing with cops, and security guards, they noticed something about me that’s unlike-, more on edge or a bit nervous or maybe. It will be nice if I add something on my card and I can point to in order that, “Oh, this person is autistic, is not a threat.”just know, the youth wanted a symbol and a sign to do this work. A public, universally recognized symbol would not only alleviate being immediately labeled as a threat on an individual level, but could also become inclusive of and provide a sensory friendly zone for others.Although Casey is talking about having a card that he could point to so that others safe), ultimately opting to use an existing phrase in the public sphere of sensory friendly and modifying that by zone. They envisioned a symbol that would not segregate persons but one that could be used within and include others in already existing spaces. Victor best articulated the inclusive nature of their shared vision, stating, “I hope all the mayors learn from this so they can make their cities more sensory friendly.” Victor imagines what could happen if all mayors understood the impact of social built environments on bodily-sensing experiences and how the creation of sensory friendly zones could create more inclusive cities.In the end, the youth with ASD and their parents agreed that a universal sign should neither categorize them as disabled nor suggest they be protected  as well as autistic youth and adult (PV-2) into account clearly illuminates how the sensory-social is indelibly and inextricably linked in experience and impacts on involvement in life situations. Yet in third-person perspective research, social and sensory constructs are often examined as separate factors. Further, third-person perspective research still locates deficits within the individual. For example, sensory seeking to sensory avoiding). On one hand, this suggests that sensory sensitivities alone did not impact participation. For example, they shared experiences that clearly demonstrate that they had all developed individual tricks to stay in or travel to spaces in which they wanted to do valued activities that were meaningful. Instead of individual deficits as barriers to participation—related either to the diagnostic criteria of autism or sensory processing—the most incalcitrant barriers to meaningful participation were the social responses (or lack thereof). Based on specific, situated and embodied experiences, the autistic youth and adult’s individual tricks led to being categorically misunderstood  or drained by their attempts to respond in the correct way. On the other hand, this also suggests that being categorically misunderstood and drained by efforts to do what is socially accepted could also shift sensory processing patterns from seeking to that of avoiding.In our participatory project, we used the Short Sensory Profile (SSP)  and the smells, bright lights, enclosed spaces, and placement of chairs) and it’s layering in everyday objects  as excruciating, overwhelming, and the cause of hurt and pain. Their concrete suggestions for change, such having a quiet space, mirrored those of the autistic authors in The autistic youth and adult experienced the social and built environment in homes and institutions  or opting out entirely. Davidson’s background as a social geographer, however, points out the potential and universal implications of the autistic youth’s participatory project in their directives for what new furniture to add—in the form of signage (sensory friendly zones)—and what to dismantle entirely.In the sub-study of the participatory project, the autistic youth and adult shared experiences in which bodily-sensing was inseparable from both social attitudes and the social built environment. However, it is their bodily-sensing experiences from their first-person perspectives that so clearly illustrates how the layering of the sensory-social limits their participation to feeling squished, squeezed, and trapped in everyday spaces by the children with autism and youth co-researchers underscore how their choices are limited and constrained by the layering of the sensory-social. One simple example is how, from a third-person perspective, Casey, Sophie, and Victor use public transportation to participate in things that matter to them. Yet, on closer inspection, the layering of the sensory-social limits their sense of agency by determining when they can travel if they want to avoid such experiences (Victor) or resign themselves to being drained entirely (Casey). The third option, of course, is to simply opt out. Although only descriptive, it is notable that the sensory processing patterns of the three youth who participated in PV-1 and PV-2 do show a shift from sensory seeking to sensory avoiding.The focus of the participatory project on bodily-sensing experiences supports an ongoing discussion about how the ICF could be restructured to better map subjective experiences of participation. As sensory-social layering on their participation certainly buttress this argument. In Jahiel’s reformulation, one new domain of “intent” is created with all the domains moving to the same level to visually emphasize the interactional or even transactional quality between them. Placing all the domains on the same level, while also making intentionality a distinct domain, places the environment on equal footing as agency. This could also highlight the important work that parents already do to facilitate their children’s agency and control over their environments through modifications and-or advocacy (advocacy .drives him insane) and determines its meaning (hate), which provides nuance. Persons may appear to be fully involved in a life situation from a third-person perspective but may be doing so in spaces where the societal-contextual elements negatively impact on their experience. This has important ramifications for, as will be pointed out below, mental health.Two concepts, “scene setters”  and “sceThe longitudinal nature of the participatory project also provided an embodied, situated and temporal view of participation from first-person perspectives. As it has been pointed out, the ICF is static and understanding participation and developing adequate measures will require much more than cross-sectional research  that reloccupational participation could prove useful to help delineate the range of entry points toward evaluating participation temporally. In occupational science, the concept of occupation is defined as the ordinary things that persons do that really matter to them, and in which “the meaning or lack of meaning to occupations” .outward pressure aligns with the autistic youth’s experiences in the participatory project of the pressing of others and pressure of time. For Ben, the outward pressure makes him crazy, much like the layering of sounds and their frequencies drives Casey insane. For Ben, this sensory-social experience reaches an existential breaking point in which he can only envision a life alone, which leaves him questioning, “What kind of a life is that?”(p. 424).The panic attacks that Ben experiences in his struggle to orchestrate the voices from, what he calls, the “Aspie” world with the everyday one are less about being an emotional state than a physical and physiological one. His bodily sense of drained and categorically misunderstood in their schools, communities and workplaces. Their continuous efforts to respond in the correct way ultimately empty them in ways that are, as Ben’s experience also hints at, potentially world ending.Despite the extensive neuroscience research on the relationship between atypical sensory processing and psychopathology .crumbles and dissolves her much like the layering of sensory-social  renders Casey speechless, taking away his ability to disclose who he is as an autist—and, thus, his own identity as an advocate and activist. For Prince, the piercing and pain are too much, and she quits school at an early age, becoming homeless for several years. She explains, however, that opting out was not about not caring but precisely the opposite. As a “naturally connected person” (p. 56), she cares  too much, a characteristic that she observes in her son’s interactions moving bugs that are so tiny they are barely perceptible to a place where they would not drown in their back yard.The intensity of the “normal life” hurt and pain that the children with ASD, autistic youth and adult in the participatory project attributed to bright lights, sounds of buzzing, alarms, music, talk, engines, hand dryers—especially when they occurred all of a sudden. Prince’s son, “… would cover [his ears] with his hands and rock, trying to get under the table,” what she calls, being “contextually autistic” (p. 66). When she took him out of school and provides home schooling, he flourishes.His natural connection to everything around him not only left him vulnerable to others’ judgements but also the to the lights that start to hurt his eyes and “the normal noise of conversation [that] hurt his ears[…]” (p. 65). Prince’s descriptions of her son’s experiences are also reflected in the respond in the correct way and be the person one “should” be to “fit in” .R-word), that weird girl, a threat, or a freak than one has not existed at all. As Prince profoundly points out, the very actions that allow one to pass as normal are also the very actions that do not allow one to be fully seen. The very actions that allow one to pass as normal are also the existential barriers to participation at the deepest levels, in which social expectations and standards about what is normal render one virtually invisible where no one knows who [one is] and what [one] can give.If one is only something unnamable  of the Faculty of Medicine and Health Sciences. Written informed consent to participate in this study was provided by the participants’ legal guardian/next of kin. Written informed consent was obtained from the individual(s) for the publication of any potentially identifiable images or data included in this article.MP designed PV-1. MP, KL, and the families collected and analyzed the PV-1 data. MP, NM, and AS designed PV-2, and collected and analyzed the data along with the youth and M-AC. M-AC, KL, and MP are co-first authors of the sub-study, contributing to the analyses of results and representation of the data. KL and MP revised and wrote the final manuscript. All authors read and approved the final submitted version.AS was employed by company addtothenoise. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Over the last 102 years, a lot of discussion was being held about the psychoanalytic conception of the “death drive,” but still with inconclusive results. In this paper, we start with a brief review of Freud’s conception, followed by a comprised overview of its subsequent support or criticisms. The core of our argument is a systematic review of current biochemical research about two proposed manifestations of the “death drive,” which could hopefully move the discussion to the realm of science. It was already established that drive satisfaction leads to the secretion of beta-endorphins, and research evidence also shows that the same biochemical mechanisms get activated in the case of masochism and the gambling disorder but only if they are preceded by chronic frustration of the essential drives. We conclude that the actual situation is more complex than Freud hypothesized, and that a fundamental revision of the psychoanalytic drive theory is necessary. Initially, the idea of a death drive was proposed by others and Freud did not show much interest. It was first discussed in Freud’s house on 24 April 1907, and Alfred Adler was probably the first to write a paper about the “aggression drive” . More suThe World War I provided the context, if not indeed the cause, for Freud’s first essay about the “death drive,” and in two different ways. Freud noticed during the Fifth psychoanalytic congress, held in Budapest in September 1918, that there were fundamental problems in both psychoanalytic practice and theory: recurring nightmares of the “Shell Shock” patients were inexplicable within the bounds of what he proposed in “The Interpretation of Dreams.” If dreams were coded wish fulfillments, what was the secret desire behind battle massacre scenes many dreamt about every night? This problem combined with Freud’s long-term efforts to develop a model of the mind based on a fundamental conflict, in which there would be only two drives and the sexual drive would have a worthy opponent for the perpetual struggle.Eros: “According to this view we have distinguished two classes of instincts, one of which, the sexual instinct or Eros, is by far the more conspicuous and accessible to study. It comprises not merely the uninhibited sexual instinct proper and the instinctual impulses of an aim-inhibited or sublimated nature derived from it, but also the self-preservative instinct…” (p. 40). It remains unclear, though, what the basis for these claims was.In a series of publications, Freud then introduced the idea of a “death drive,” “an innate, independent, instinctual disposition” , p. 102,Psychoanalysts of future generations who consider themselves Freudians still consider the “death drive” as a relevant idea. This pertains mostly to Melanie Klein and Lacan, and the subsequent generations of Kleinians, including Hanna Segal and Otto Kernberg, and contemporary Lacanians. Over time, the “death drive” turned from a philosophical conception to a supposedly clinical fact and influenced  modes of working with patients in each individual session.In the beginning, Freud treated all these ideas very tentatively , and as late as 1935 he wrote, “Naturally, all this is groping speculation, until one has something better” .Many of Freud’s closest collaborators, like Abraham, Jones, or Glover, did not subscribe to the “death drive” idea. In his final papers, Ferenczi tried to re-introduce the significance of trauma, which he saw as fundamentally connected to death not as a source but as an outcome: “trauma is a process of dissolution that moves toward total dissolution, that is to say, death” , p.130, This led to a different brand of psychoanalysis , which pThrough his translator Jane Isabel Suttie, however, and through his assistant and literary executor Michael Balint, Ferenczi’s thinking became the foundation of the trauma theory in psychoanalysis and beyond. Since then, more than a hundred papers debating the “death drive” were published. The death drive, I propose, is not a primary drive, but represents a significant complication of aggression as a major motivational system, is central in the therapeutic work with severe psychopathology, and as such is eminently useful as a concept in the clinical realm. (p. 1018).The only point that remains certain is that nothing gets clearer after this. If the “death drive” is not a primary drive, why is it still called a drive? One would assume that Kernberg will arrive at another conclusion, but he terms “useful as a concept” something that has never been clearly defined. Indeed, it seems the concept is useful as a projection device for clinicians who face a patient’s aggression.More recently, the debate was summarized in a very accessible fashion by Revisions of the drive theory, especially in the case of “death drive,” have taken up a lot of points, as was recently coherently demonstrated by …satiation or “nothingness”  is the ideal state of all self-preservative and libidinal creatures: it represents the successful outcome of work performed in response to drive demands. … Therefore, there is no need to invoke the existence of a separate “death” drive that serves the Nirvana principle; it is served by the “life” drives and it represents their ideal state. To be clear, there is no need (or justification) to conclude that “the aim of all life is death” , p. 1054This intermingling of biological and psychological approaches is, indeed, confusing. We do not have sex in order to fulfill our biological task of reproducing humankind. This is the biological perspective; psychologically, however, we have sex because of the exchange of lust and of attachment needs. Binding these two drives together is the task of another motivational entity, playfulness.The clinical pathological manifestations, which Freud wanted to better understand by conceptualizing the “death drive,” like narcissism, addictions, homicidality, or suicidality, are attempts at achieving satiation by “short circuit”:…that is, they are attempts to satisfy the demands made upon the mind for work without actually doing the work. In other words, they are attempts to evade the reality principle, which is indeed a dangerous  thing to do. These are failures of ego functioning. , p. 1054Over many years the concept of a “death drive” was also used to “explain” human violence in all of its varieties. It was meant to explain violence in marriages, warfare, sexual abuse, and even terrorism  motor skills. If this holds true, ethical responsibility enters theory. Turned into epistemological terms, the drive is the equivalent of determinism, while the Ego is the equivalent of choice. As the concept of “death drive” has no explanatory power, it should be removed from theory in order not to risk its use as a contribution to violence myths.Fourth, there are better explanations for violence than a “death drive.” Many studies have shown that similar violent acts were accompanied by various psychological content and motivations, that such acts required  preparations, tried to achieve conscious targets, and could be fully controlled, if some supportive social context was available ) is expected to induce satisfaction, it must induce the release of β-endorphin as biochemical cachet.Inspired by Freud’s view to respect hormones as principle driving force of his drives, it was possible to link motor factors with known hormones . The im. The vieIn order to answer Freud’s question of “What instincts should we suppose there are, and how many?” , we advocated three criteria for identifying a motivational drive :an imperative nature of the drive as a psychological criterion,via the lateral hypothalamus as a neurobiological cachet, and,orchestration a drive termination by means of the central release of 5-hydroxytryptamine as a biochemical attribute.via a 5-hydroxytryptamine-dependent cascade , and sleep as Freudian motivational drives because all these drives will achieve the release of β-endorphin during satisfaction  cascade . The quevia actions of hormones secreted from an excited organ (Freudian drive type) or in a conscious one (Bowlbyian drive type) via action of excited sensory nerves  neutralized the claims of the “death drive,” thereby preserving life:” The libido has the task of making the destroying instinct innocuous…” ) must have the identical end-product inhibitor. Consequently, a “death drive” must be a β-endorphin releaser, if its onset should be prevented by the operating essential drives. The negative-side of such a mechanism with an identical end-product inhibitor for essential drives as well as destructive impulses would be the down-regulation of (an) essential drive(s) by an overshooting “death drive.”The processing of a metabolic pathway can be described as a cascade of biochemical metabolites and recently we have demonstrated that such a strategy can also be applied to psychological drives . In ordeerminals . In prinEros construct plus sleep plus attachment drives) are supposed to be in opposition to the (proposed) “death drive.” A control of the latter by the former would be possible if both classes of drives had the identical end-product inhibitor . In other words, since β-endorphin is our reporter molecule for achieving satisfaction, essential drives as well as harmful impulses must be able to lead to the feelings of well-being (or even euphoric states) if Freud’s proclamation is correct. Because of this mechanism, an opposite action, for example, the down-regulation of essential drives by an overshooting “death drive,” would be possible.To conclude. We need to remember that essential, β-endorphin releasing drives ” by The term “masochism” was introduced by Diagnostic and Statistical Manual V (DSM-V) defines Masochism Disorder as a status lasting for at least 6 months, consisting of “recurrent and intense sexual arousal from the act of being humiliated, beaten, bound, or otherwise made to suffer as manifested by fantasies, urge or behaviors”  β-endorphin is additionally released in order to mediate pain control . Howeverpleasure , most lipleasure . By usinpleasure , p. 235.Now the question arises why Freud’s proclamation that “[t]he libido has the task of making the destroying instinct innocuous” failed in patients suffering from erotogenic masochism? Bowlby’s assistant, An astute reader may now be interested in the answer why the activity of the essential drives  is decreased in patients suffering from primal masochism? Howell noted additionally that many psychologically distinctive features of masochists  are also symptoms of traumatic stress , p. 234.Since there is now evidence that Freud’s “erotogenic masochism” can be classified as an addictive disorder , and becvide supra), the essential drives  provide β-endorphin during satisfaction. Since attachment is highly effective in releasing sufficient amounts of β-endorphin  to a characteristic range . A persindorphin , the essndorphin . TherefoFrom the outlined key-features of masochism, our tentative definition of a “death drive” has three characteristic building blocks:A “death drive” is an auto-addictive disorder and cannot be attributed to intoxication.A “death drive” can be established when a psychological trauma has corrupted essential drives, especially attachment, so that the physiological release of β-endorphin is limited.A “death drive” releases β-endorphin in a pathophysiological manner in order to compensate the deficit introduced by corrupted essential drive(s). From such a perspective, a “death drive” acts as a surrogate of an essential drive.By using the above advocated criteria I to III, it should be possible to classify with confidence hitherto unmentioned auto-addictive disorders as forms of the “death drive.”vide supra). vide supra), the (childhood) trauma decreased here also the capabilities of attachment drives to release β-endorphin, because the onset of insecure attachment predicted the symptomatic expression of pathological gambling among adolescents  the possible opposition of “life drives” and “death drive,” and (2) masochism and gambling disorder as hypothesized manifestations of the “death drive.”Freud’s idea of a “death drive” was initially very speculative and referred to cosmological, physical, psychological, and clinical dimensions. Over time, it was further developed by some psychoanalysts, and criticized, or indeed rejected, by others. Sadly, these two general attitudes—one that proneness to aggression is inborn, the other that it is a consequence of traumatization—were never fully scientifically explored . It seemWe followed the only reasonable hypothesis, proposed actually by Freud himself, which claims that the physiological correlate of drives must be hormones. Previous research has clearly highlighted the existence of mechanisms that lead from the satisfaction of hunger, thirst, sleep, sex, and attachment needs, to the secretion of 5-hydroxytryptamine, and, subsequently, β-endorphin – the reporter molecule for human satisfaction . One couThe currently existing body of biochemical research focused on these two conditions reveals that healthy human beings tend to establish a characteristic level of β-endorphin  in their brains. In principle, a physiological level of β-endorphin signals to the individual that everything is all right. Additional release of β-endorphin induces satisfaction . If the mechanism leading to the satisfaction of one of the essential drives  is corrupted, the β-endorphin supply becomes suboptimal and human beings begin to search for other sources of satisfaction (β-endorphin release). The two auto-addictive disorders under our scrutiny (masochism and Gambling Disorder) can also lead to the release of β-endorphin and compensate the deficit induced by the malfunctioning essential drives. In that sense, one can establish a pattern of masochism or pathological gambling because they lead to pleasure similar to the pleasure of the satisfaction of the essential drives.It is, however, important to note, that the so-called “death drive” (now classified as a collection of auto-addictive disorders) cannot be omnipresent. For most people under regular circumstances, sexual masochistic activities or gambling in an amusement hall are nothing more than latent alternative options that will not be automatically activated when the essential drives are optimally satisfied. They only become active in a repetitive manner once the essential drives are persistently corrupted and become disorders when this frustration is chronic.We believe that these findings can also lead to improvement of psychoanalysis as therapy. Most psychoanalysts would agree that a chronic “death drive”  is often only marginally responsive to individual psychotherapy. We have claimed that “death drive” acts as a surrogate for impaired essential drive(s), and in nearly all the cases it is the attachment drive that is corrupted. Therefore, psychotherapeutic treatments should focus on revitalizing the impaired attachment drive by emphasizing interpersonal orientation and incorporating group psychotherapy into treatment plans.We believe that this review should (and probably has to) lead to the revision of psychoanalytic drive theory in several important points:via a largely shared biochemical mechanism. To the best of current scientific knowledge, these include, on the one hand, attachment needs, hunger, sexuality, sleep, and thirst, and, on the other hand, auto-addictive disorders.There are several independent (drug-free) impulses that lead to β-endorphin dependent pleasure The essential drives seem to be to a large extent independent of one another and the universal hierarchical primacy of one of them  cannot be confirmed. As clinical and everyday social experiences show, even persons without mental or somatic disorders find it challenging to achieve balance between these drives and may exaggerate with satisfying one when others are frustrated .Although Freud spent decades trying to develop a model of conflict between two drives equally powerful and fundamental both chronologically and ontologically, the biochemical mechanisms related to what he termed “death drive” do not get active when the essential drives are satisfied, and consequently they cannot be seen as belonging to the same level of importance as the life drives. In other words, as long as we have emotionally available persons we will not searching for activities that lead to addiction.The dynamic among the drives is also more complex than the psychoanalytic trauma models expect. Though the connection between trauma and the “death drive” is obvious, trauma seems to play the role of a trigger more than of a cause. Biochemical mechanisms are latently present in every brain but will not be activated unless there is a chronic external frustration that introduces dysfunction in the satisfaction of the essential drives. They seem to be always ready to jump from the bench and join the game, if one of the first team players gets injured for whatever reason, to use a metaphor related to sports. Thus, the so-called “death drives” are only surrogates of the essential drives.Naturally, our study suffers from limitations and will hopefully inspire future efforts superior to this one:In order to prevent getting into the labyrinth of biochemical possibilities, only well analyzed signal molecules, like β-endorphin, were advocated to have key importance for the processing of both essential drives and harmful impulses. Although such a strategy is supported by actual knowledge, our rationalizations might be prone to a revision when at present under-evaluated metabolites would have unexplored capabilities on our suggested signal-molecules. For instance, if endogenous cannabinoids would be able to regulate the μ-receptor, β-endorphin would lose its key importance for achieving satisfaction.Although we (believe that we) have reviewed all available studies of the phenomena under scrutiny, their number is not very high and we are looking forward to further biochemical research in this domain.Besides the already existing studies of the essential drives, there are other strong candidates whose biochemical mechanisms are still understudied. We hope researchers will turn their attention to curiosity, playfulness ,abandoning the idea of an independent “death drive,” which was in theory related to repetition compulsion and aggressiveness, while the evidence shows that it is activated if and only if the primary drives remain chronically unsatisfied.The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.MK responsible for the biochemical part and the idea that Freuds death drive is a collection of auto-addictive diseases. At least an impact of 33%. AD responsible for the historical overview of psychoanalytic trauma theory and the key idea that a childhood trauma is mandatory for malfunctioning of essential drives. At least an impact of 33%. MB responsible for the overview between death drive and  violence. Introduced the key idea that a death drive cannot be an omnipresent psychologic entity. At least an impact of 33%. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Understanding whether and how caregivers’ capability to “live well” changes over time, and the factors associated with change, could help target effective caregiver support.We analyzed 3 time points (12 months apart) of Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort data from coresident spouse caregivers of community-dwelling individuals who had mild-to-moderate dementia at baseline, using latent growth and growth mixture models. Capability to “live well” was derived from measures of quality of life, well-being, and satisfaction with life.Data from 995 spouse caregivers at Time 1, 780 at Time 2, and 601 at Time 3 were included. The mean “living well” score decreased slightly over time. We identified 3 classes of caregivers: one with higher baseline scores declining slightly over time , one with low baseline scores remaining stable , and one with higher baseline scores showing marked decline . Scores on baseline measures differentiated the Lower Stable, but not the Declining, from the Stable class. Longitudinally, the Declining class was associated with care recipient cognitive decline and increasing hours providing care, as well as caregiver stress and depression. Findings were similar when caregivers with other kin relationships were included.The findings indicate the importance of prompt identification of, and support for, caregivers at risk of the declining capability to “live well” and may assist in identifying those caregivers who could benefit most from targeted support. Globally, there are over 55 million people living with dementia, representing an annual economic impact of more than United States $1.3 trillion  can provide insight into the impact on caregivers of both positive and challenging experiences, but there is a need for more empirical evidence on factors associated with caregiver QoL . ModelinWhile such modeling provides evidence on which to base possible approaches to better supporting caregivers, it does not account for the way in which the experience of caring at home evolves over time. Available evidence suggests relatively stable average trajectories of QoL for those continuing to care at home , but agaIn this study, we use longitudinal data from the IDEAL cohort  to buildTo what extent does capability to “live well” change over 24 months for coresident spouse caregivers of people living with dementia in the community?Is it possible to identify subgroups of caregivers with distinct trajectories of “living well” scores?If so, what factors are associated with membership of these subgroups?We hypothesized that the capability to “live well” would decline over 24 months, that it would be possible to identify subgroups with distinct trajectories, and that baseline caregiver  and care recipient  factors would be associated with a decline in caregiver capability to “live well.”This study presents an analysis of longitudinal data from the British IDEAL cohort  coveringn = 70) were excluded, followed by any caregivers who were substituted for the originally participating caregiver at T2 or T3 (n = 7). Of the remaining caregivers at T1, 997 were spouses or partners (hereafter “spouse caregivers”), and 206 had other relationships with the care recipients. The main analyses were conducted with coresident spouse caregivers; two caregivers who were noncohabiting partners in recently formed relationships were not included in these analyses, leaving a sample of 995 coresident spouse caregivers at T1, 780 at T2, and 601 at T3. Analyses for the whole sample, including those with other kin relationships, are presented in This analysis focuses on the informal caregivers of community-dwelling people with dementia participating in the IDEAL cohort. The IDEAL cohort was formed by recruiting community-dwelling individuals diagnosed with mild-to-moderate dementia of any type, with a Mini-Mental State Examination  score ≥ Measures are based on caregiver self-report except where indicated. See Caregiver age, sex, kin relationship to the person with dementia, educational level, social class, and daily hours spent providing care, and sex and diagnosis  of the person with dementia, were included in analyses.Perceived social status was assessed with the MacArthur Scale  and sociDepression was assessed with the Center for Epidemiologic Studies Depression Scale—Revised , lonelinNumber of chronic conditions was assessed with the Charlson Comorbidity Index age-adjusted score  and subjStress was assessed with the Relative Stress Scale . Short sCaregivers rated the functional ability of the person with dementia using the Functional Activities Questionnaire  and leveThe Positive Affect Index  was usedCapability to “live well” comprised measures of QoL, well-being, and satisfaction with life. The World Health Organization QoL-BREF . To establish whether changes in “living well” could be considered meaningful, the Reliable Change Index RCI;  for WHO-Trajectories of “living well” over the three time points of IDEAL data collection (T1–T3) were investigated using two models in Mplus v.8.2; for additional details, see lme4 package, with random effects to account for interindividual variation. Most measures had a skewed distribution, and residuals were checked for normality. A gamma distribution with a log link was fitted for most measures. A linear model was fitted for the social network, and a binomial distribution with a log link for caregiver hours (≤10 hr vs 10+ hr).Mixed-effect modeling was used to examine associations of class membership with trajectories of scores on measures assessed longitudinally. Mixed-effect modeling was conducted in R using the Missing data for outcome measures were handled using full information maximum likelihood estimation with the assumption that data are missing at random (MAR). A sensitivity analysis was conducted for SwLS and WHO-5 to compare MAR growth mixture models with models that account for nonignorable missingness, and the MAR model was supported; further details are provided in Data from 995 coresident spouse caregivers (hereafter “caregivers”) at T1, 780 at T2, and 601 at T3 were included in analyses. Caregiver and care recipient characteristics and scores on study variables are summarized in Change in “living well” score over time is summarized in While mean “living well” scores changed little over time, interindividual differences in the second-order growth factors were statistically significant, with estimated variances pointing to the existence of variation in both intercept and slope. We therefore investigated heterogeneity in trajectories. Model selection is described in The resulting three-class solution had average latent class probabilities ranging from 0.77 to 0.83 and entropy of 0.58. It comprised a class with higher baseline scores and a slight decline over time of a magnitude less than the RCI , a stable class with lower baseline scores , and a class with initial higher scores that showed marked decline over time which could be considered a reliable change . Trajectories alongside fixed and random effects are shown in Associations of baseline measures with class membership were examined using multinomial regression with the Stable class as the reference group and are summarized in The analyses incorporating the full sample of caregivers are provided in This is one of the relatively few studies offering a longitudinal perspective on QoL, well-being, and satisfaction with life of family caregivers of people with dementia, and to the best of our knowledge, the first to identify groups with different “living well” trajectories. Focusing on coresident spouse caregivers, results from our large cohort indicated a generally stable trajectory over 24 months, with a negligible yearly decline in a combined “living well” score, and did not support the hypothesis of decline over time. Further analysis did, as hypothesized, yield subgroups, and three groups were identified with Stable, Lower Stable, and Declining “living well” scores. The hypothesis that baseline caregiver and care recipient factors would be associated with the decline was not supported; while baseline scores on most measures differentiated the Lower Stable from the Stable group, no baseline variables differentiated the Declining group from the Stable group. However, longitudinal decline in “living well” scores were associated with increasing cognitive impairment in the care recipient, the impact of neuropsychiatric symptoms, and hours of care provided.A stable or only slightly declining pattern was seen in over 90% of the sample, and this finding is consistent with earlier reports of QoL trajectories over 18–36 months  and WHO-The proportion identified as having a declining trajectory, although small, is not negligible. Nothing distinguished the Declining class at baseline, but changes over time in the needs of the care recipient were associated with changes in caregivers’ psychological and physical health, experiences of caregiving, and scores on measures of “living well.” Our findings are consistent with the observation that increased supervision time predicted increased caregiver burden at 3-month follow-up  and a deThe study has several limitations. As might be expected in a sample of older people, there was considerable attrition in the cohort and some of this attrition could have been selective. For example, those with lower “living well” scores may have been more likely to withdraw from the study at the next time point. However, alternate growth mixture models were explored, which take into account nonignorable dropout for two of the measures used to estimate the “living well” score. As class formation and estimates of the intercepts and slopes were almost identical to those found with the model where data are assumed to be missing at random, there was no evidence of selective attrition based on “living well” scores. With data from three-time points available, linear trends had to be assumed, whereas in reality, patterns might be more complex . The cohThe key implication of our findings for public policy is that failing to provide accessible, practical support for family caregivers may be a false economy. In the UK, the policy of fiscal austerity that has dominated public services since the 2008 financial crisis has resulted in a marked reduction in availability of publicly funded social care for people with dementia, such as home care, day care, and respite services. Linked to this, an increase in provision of informal care, and in particular in the proportion of caregivers providing care for 20+ hours per week, has been identified . This haIn conclusion, this study, one of few providing a longitudinal perspective on QoL, well-being, and satisfaction with life among family caregivers of people with dementia, adds to an understanding of caregivers’ experiences and needs. It demonstrates for the first time that differing trajectories underlie relative overall stability in mean scores on these measures of “living well.” Over two thirds had higher initial scores that remained relatively stable, but some declined over time as the needs and dependence of the care recipient increased, and one quarter had markedly low “living well” scores from the outset. The findings highlight the importance of providing accessible, practical support for family caregivers as a matter of public policy, understanding how to target supportive interventions appropriately, and developing the capability to promptly identify and support caregivers who are at high risk of decline in well-being.gbac090_suppl_Supplementary_MaterialClick here for additional data file.