While working on last month’s blog post on elder abuse, a topic came up that gave DVSN staff pause. Researching further, we found that, as an agency, we fundamentally disagree with how this topic is represented by some very prominent sources, including DVSN’s home state of Massachusetts. Because of this, we decided to detour slightly from our usual blog post style and follow up on last month’s post with an editorial on self-neglect. Removed from last month’s elder abuse post in order to address it directly, we’d like to delve into the topic of self-neglect and why DVSN cannot get behind classifying it as a form of domestic violence.
Definitions of Self-Neglect
In the previous post, we described abusive neglect as the failure to provide basic necessities, such as food, water, clothing, shelter, and medication, to someone one has a responsibility to care for. Self-neglect is the failure to provide these essentials to oneself. It may also be described as an adult living in a manner that puts their health, safety, or wellbeing at risk. Self-neglect can include malnutrition, dehydration, poor personal hygiene, unsanitary living conditions, inadequate medication management, and inadequate financial management. (WADSHS)
Choice vs Capability
One major dispute DVSN has with the presentation of self-neglect as a form of domestic abuse is in its very definition. Most organizations discussing self-neglect define it as the inability to provide basic necessities for oneself due to physical or mental impairment or diminished capacity, rather than choosing not to due to the difficulty of performing the necessary tasks, the amount of energy/focus required, mental health issues, self-care/mindfulness decisions, etc. Some organizations go so far as to explicitly state that self-neglect excludes situations where a mentally competent person understands the consequences and still makes a conscious decision that threatens their health or safety (NCEA).
DVSN staff’s immediate instinct was that if someone doesn’t just find care tasks challenging, but literally cannot perform them, that is not neglect. There is no choice. Merriam-Webster defines neglect as, “to give little attention or respect to, to leave undone or unattended to especially through carelessness”. There is no mention of inability in that definition. There is a fundamental difference in physically or mentally not being capable of doing something versus having the capability to do something, though it may be difficult, and choosing to neglect it, whether through carelessness or other factors. We feel those who define self-neglect as the inability to care for oneself properly may be missing this vital distinction.
Unintentional Self-Neglect & Dynamic Disabilities
We see a clear distinction between incapability and choice and have issues with the term “neglect” being applied to the former. However, not every case falls into one of these categories. It is possible for someone not providing/performing basic necessities for themselves to actually be capable of doing so (at least sometimes) and also not actively choosing to neglect them. Many older adults and people of any age who have a disability have fluctuations in what they are capable of (check out the “Spoon Theory” for a good representation of this). They have good days and bad days, can cook healthy meals, clean the house, and pay the bills one week, then be in too much pain or forget a due date the next week and neglect these things for a while before recovering and being capable again. There is a difference between not always being able to do something and not ever being able to do something. Where on the spectrum of incapability versus choice does this qualify as self-neglect?
And what about situations where the “neglect” is unintentional or even unavoidable. Say, for example, someone gets downsized from their job and, though they apply for others, no one hires them, their financial situation deteriorates, and they eventually lose their home. They are now failing to provide themselves with shelter and perhaps other essentials, such as food, water, hygiene, and medication. But is this self-neglect? They did not choose to be downsized. If they could find a job, they would be capable of providing these things. They tried to avoid the situation and, given the right circumstances, are perfectly capable of caring for themselves, but factors beyond their control forced this outcome on them. How have they been neglectful?
Prioritizing & Self-Care Choices
Beyond age-related changes and disabilities, anyone can struggle with providing/performing basic necessities for themselves. It is easy to become overwhelmed with work or family responsibilities, some may struggle financially, and others may be dealing with mental health or substance abuse issues. Perhaps none of these things make them incapable of caring for themselves, but they do make it difficult. Sometimes people make self-care choices and need to prioritize some things over others in order to do what they deem is best for themselves (see how this relates to the “spoon theory” here). If someone is capable of bathing themselves, but finds taking a shower to be challenging and draining, is it self-neglect not to shower for a week so that they can use that energy to go grocery shopping instead? Or are they prioritizing and rationing out tasks so that they can eventually accomplish them, albeit slower or less often than might be ideal?
Low-income and socially isolated individuals may not have the resources to meet all of their basic needs and don’t have the knowledge or ability to seek assistance. This might mean they have to make tough choices and prioritize how they spend their money based on what they deem most important. Someone may choose to go without heat, for example, so that they can afford their medication, while someone else may decide being warm is more essential to their health than medication and make the opposite choice. In this scenario, it’s not so much that they are choosing to neglect something that affects their wellbeing as they are choosing to prioritize what is most important to their wellbeing.
Or take a less extreme circumstance. Say someone is overwhelmed and stressed out at work and is becoming burned out, anxious, and depressed. If they decide to spend their minimal free time watching a movie or reading or doing yoga or taking a bath instead of doing the dishes or laundry or cleaning the house, is this self-neglect? Or have they made a choice to focus on self-care so that they don’t exacerbate their mental health problems or can recover enough to go to work the next day and keep up with their responsibilities there? It is extremely difficult to determine where the line is between a self-care choice and an inability to provide/perform basic necessities due to physical (eg. exhaustion) or mental (eg. burnout) impairment. However, neither the choice nor the incapability is necessarily neglectful.
Ideal vs Acceptable vs Neglect
It is easy to let things slide a bit when on a down-turn and not realize the extent of the effect this has or how little things are building up. In speaking about self-neglect with MA social worker Nicole Saia, who works with older adults, she brought up comparing ideal versus acceptable circumstances. Is it ideal not to shower for a week or two? No. Is it actively harming the person? Perhaps also no. Is it ideal to hoard things and not clean one’s living space thoroughly or often? No. But if the space is still usable and not impacting their health or wellbeing, is it acceptable? Perhaps yes.
Saia said there was no standard definition of what qualifies as self-neglect from a social work perspective. She stressed that safety was the most important factor. A consistent lack of personal hygiene and clean living spaces, while not necessarily harmful in the short-term, could cause or exacerbate health issues, such as contracting a disease from contact with rodent droppings, developing breathing issues from mold affecting air quality in the home, or not being able to eat properly due to tooth pain from cavities that emerged because they didn’t brush and floss regularly. A property that is cluttered and uncared-for to the extent that emergency services would be delayed or even unable to reach a person in distress turns it from a less-than-ideal circumstance into a real safety issue. It can be very subjective and difficult to determine when a situation is not ideal but acceptable and when it is actually harmful to a person’s health or safety.
Self-Neglect as Abuse
All this fastidiousness over terminology is part of the larger issue we have with the general representation of self-neglect. We dug into definitions and discussed fine lines because we fundamentally disagree that self-neglect should be classified as abuse at all. At a basic level, domestic violence, abuse, is the exertion of power and control by one person over another. The thing that makes abuse abuse is this power imbalance, this coercive control. Just as suicide differs from murder, self-neglect differs from domestic violence. While the results may be similar, the process is very different. The fallout from one individual’s personal choices and health issues may be devastating, and may be something requiring support, assistance, and/or legislation. However, the power and control dynamic of domestic violence is only possible when more than one person is involved. Therefore, self-neglect cannot be classified as abuse.
In a way, self-neglect is also about control – control over oneself. While a victim of domestic violence has the control of themselves and their lives stripped from them intentionally and against their will by another person, someone in a situation of self-neglect has also lost control of themselves and their lives but not through the exertion of power by another person. Whether the situation is of their own making or due to factors such as health, finances, or lack of support, if there is no second party deliberately causing or creating these factors, it is not domestic violence. Some may argue certain situations, especially of actively chosen neglect, would qualify as a sort of “self-abuse”, but even if you do agree with the concept of “self-abuse”, it is still very different from interpersonal abuse and should not be lumped in together as forms of the one big issue of domestic violence.
Self-Neglect Relating to Abuse
While we do not see self-neglect (as others currently define it) as domestic abuse, it is tied to abuse in many ways, one of the most relevant being that it can lead to domestic abuse. A 2024 study analyzing Adult Protective Services Data in Maine found that self-neglect often coexisted with abuse by another person and was a significant risk factor for later abuse. Nearly 40% of elder mistreatment cases in the study began with self-neglect. Self-neglect can create vulnerabilities for abusers to exploit. Someone who seeks help with tasks they can no longer perform may invite a caregiver into their lives who takes advantage of the situation to exert power and control in the form of physical, emotional/psychological, sexual, or financial abuse or neglect. The study also found that addressing self-neglect cases can help prevent later abuse. So, while maintaining that self-neglect is not a form of abuse itself, we recognize the connection between the two issues and how they can often be intertwined.
Legal Intricacies
It seems there has been the beginnings of a shift in the past decade or two toward agreeing with DVSN’s assessment that self-neglect should not be considered a form of elder abuse or any type of domestic violence (NEJM). However, while the 2010 Elder Justice Act created a federal definition of self-neglect (directly related to elder abuse), various states and organizations have their own distinct definitions, and laws, regulations, and responses differ by state. Most states do include self-neglect under the definition of elder abuse. In fact, according to Adult Protective Services, self-neglect is the most common form of elder abuse cited in investigated reports and even more so in substantiated reports. (APS Survey)
What is even more unclear and inconsistent is how capacity is assessed. Adults with evident mental capacity have the freedom to make their own decisions about how they live their lives. If they choose to live in a state others would qualify as neglectful, they have that right. On the other hand, government agencies have a duty to intervene when one individual’s personal choices are affecting others. For example, if someone’s hoarding behavior in their apartment grows to the extent that it is violating fire code and might hinder or prevent the timely extinguishing of a blaze, they are putting others in the building at risk. Their freedom to choose does not apply when they threaten the health and safety of others.
However, there is so much grey area in between making a capable choice that may harm oneself and one that may create safety issues for others. And there is no standard for how to determine mental capacity to make those decisions in the first place. Does the overwhelming desire for independence and to not be a burden on others and the reluctance to accept assistance or changing abilities qualify as mental impairment or diminished capacity? Balancing choice, control, independence, and wellbeing when judging a situation can be challenging.
Considerations & Alternatives
As the DVSN staff delved into the intricacies of this topic, we considered further the gut reaction we had against the definition we frequently encountered of self-neglect as an incapability. Coming at this issue through a lens of domestic violence and coercive control, choice seemed a vital component. “Self-neglect” seemed to us to apply only to situations where there is at least some capability, some choice, not to explicitly exclude them. The word “neglect” has connotations of negligence, carelessness, and disregard and seems to imply ability. How could one call something “neglect” when there was no choice about the person’s ability to handle it? But what else would you call it? We were having a hard time coming up with a good, concise term to describe a situation where a person was mentally or physically incapable of providing/performing basic necessities through no fault of their own and with no manipulation from another person. And would one amend the definition of self-neglect or apply a term other than “self-neglect” to situations of incapability?
DVSN staff and the social worker we spoke with agreed that self-neglect was not abuse, but is it mistreatment? Again, there is a connotation of deliberate harm and perhaps exploitation in that word. And a phrase like “incapacity to ensure one’s own health & safety” is a bit of a mouthful. Looking back at the dictionary definition of neglect, and just focusing on the part “to leave undone or unattended to”, technically our description of this issue could qualify as neglect. While, as we stated above, there is no mention of inability in this definition, neither is it excluded. One might leave a necessary task “undone or unattended to” through choice or because one is physically or mentally incapable of performing it. Because there is a negative connotation to “neglect” (the end of that definition is “especially through carelessness”), it seems like a poor term for many situations, but perhaps it is not completely inaccurate. Does it really make sense to separate situations where someone isn’t caring for themselves based on whether they technically have the ability to or not, when they probably require similar action? Is it trying too hard to be politically correct and not offend to not call situations of incapability “self-neglect”? Or is changing the term a way to remove stigma and shame from an issue that is often embarrassing/beyond the person’s control and challenging a systemic oversimplification of what can be a very complex matter?
Whether or not the term is the most appropriate or if there should be different terms based on capability, we have no uncertainty in our opinion that self-neglect should not be considered abuse or treated as such. Yes, it is an issue that humanity should be endeavoring to minimize and to offer support and resources to those experiencing it, but not in the same way we would approach domestic violence. Associating self-neglect with abuse can add to the shame and embarrassment those experiencing it may feel by increasing the negative stigma attached to it. It is a form of victim-blaming by implying people are abusing themselves in situations that are out of their control. We have deliberately refrained from using the word “victim” throughout most of this post because, while people are often described as victims of circumstance or illness, the word typically implies that there is a perpetrator, an abuser, creating that victim. Patricia Kimball, executive director of the Elder Abuse Institute of Maine, says clients experiencing self-neglect often don’t see themselves as victims. She suggests that the term “self-neglect” is stigmatizing because it blames the person for their situation when there may be factors out of their control. (Maine Monitor)
As a nonprofit working in the field of domestic violence, DVSN felt strongly enough about this issue to share our stance in this editorial. This is purely our informed opinion, however, how we see self-neglect. We recognize how others might see it differently and reasons why they may include it as a form of elder abuse. However you define or categorize self-neglect, it is all too prominent, especially among older adults. If you or someone you know may be struggling to provide/perform basic self-necessities, here are some resources that may be helpful:
- National Adult Protective Services Association – investigates reports of abuse & neglect and provides support & resources
- Companioa by the Institute on Aging – in home dementia care, adult day programs, and concierge client care
- Elder Justice Neighborhood Resources – search by state for services and resources for older adults
- MassOptions – services & supports available through MassHealth & MA state agencies to assist with abuse & emergency services, behavioral health services, caregiver support, career training & employment, day services, equipment & supplies, food & nutrition, health & wellness, housing, in-home supports, insurance, and transportation
- Power of Attorney (POA) – understand what POA is and how to get one
- Conservatorship FAQ – 5 basic questions answered about conservatorship & guardianship
- Self-Neglect Quiz – learn more about self-neglect through an interactive, visual-supported online quiz
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