- It's important to not lead with the assumption that care refusal is coming from stubbornness
- There are many potential causes, ranging from medical to emotional
- Approach the situation with empathy, and involve your loved one's primary care physician to rule out potential medical causes
- As you evaluate causes, think about when symptoms began, if they began abruptly, and if you’d consider them mild, moderate, or severe
A common and difficult scenario with aging loved ones is navigating how to help them when they refuse to accept it. When this happens, they’re simply unwilling to recognize the need for, request, or access the services and support that could improve their quality of life.
The issues that prompt the need for extra help can be big or small. At the modest end there are things like needing household help — running errands, doing chores that are now too demanding — or a ride to the doctor. On the more intensive end of the spectrum, there are things like the need for support with ADLs (activities of daily living) such as bathing and dressing or ongoing supervision to ensure safety.
Often, as needs increase, so does resistance. Changes that get undeniably tough to accept include bringing in live-in help, pivoting to a new living situation, or placing restrictions on driving.
What Does Care Refusal Look Like?
Care refusal can take many forms: poor hygiene, inattention to safety, medical non-adherence (not taking blood pressure or cholesterol medications), failing to keep doctor appointments, or refusing to follow a specific diet or regimen, even when the potentially dire consequences seem to be well-understood.
It can also involve continuing to conduct activities that could be dangerous to one's self or others, like driving despite visual or cognitive issues or getting on a ladder to clean the gutters with arthritic hips and knees. Resistance to making home improvements (like optimized lighting and flooring) that could prevent difficulty down the road is another common sticking point.
Why Do People Refuse Help That Could Keep Them Independent?
Care refusal can have many causes. It’s helpful to evaluate the situation similar to how a doctor would make a medical diagnosis, and to think of these bad decisions as symptoms.
When physicians encounter symptoms, they’re trained to look for all potential causes, generating what’s known as a “differential diagnosis.” The differential diagnosis of bad decision making has a few top contenders, some of which are purely medical and some of which are not. There are easy solutions for some causes, and more limited options for others.
As you evaluate all potential causes, it’s important to think about when symptoms began, if they began abruptly, and if you’d consider them mild, moderate, or severe. Your loved one’s physician should be a helpful partner for you in the process.
Medical Causes of Care Refusal
While refusing care can be a personality issue (“he’s been stubborn and independent his whole life”), leading with that assumption is not the best place to start.
Before you jump to the conclusion that your loved one is simply being obstinate, you need to exclude medical causes as the basis for their behavior. There are a myriad of potential medical reasons for altered decision making. Below are some of the most common causes.
The medical conditions most likely to produce a shift in decision-making abilities are neurological illnesses like Alzheimer’s Disease. Many patients with dementia have poor insight into their deficits, often to the point of denial. Neurologists call this anosognosia — the part of the brain that is responsible for insight and self-awareness is affected by the disease similar to the way that memory is.
It’s important to understand if this kind of cognitive impairment is playing a role in refusal for two reasons. First, depending on the kind of dementia that’s causing the problem, there might be a specific intervention that could restore some cognitive performance and insight, like an untreated thyroid problem or other biochemical imbalance. Second, if the dementia that’s responsible is untreatable, you’re heading down a different road that may involve neurological assessments around decision-making capacity.
One shouldn’t misconstrue refusal behavior as volitional if brain disease is the cause. You wouldn’t blame someone for diabetes because their pancreas is no longer making insulin. In the same way, an impaired brain is outside of someone's control.
Depression can play a role in non-adherence to a variety of medically recommended treatments — in particular diet, exercise, and medication management. It can produce profound inattention to health and hygiene.
Depression in older adults can look different than the "standard" societal picture of it. Many older adults with clinical depression have no sadness at all; in fact, sometimes the only features are things like a decline in self-care, odd beliefs, memory loss, or a variety of bodily complaints.
There are three reasons you should have your antenna up to the possibility of depression as a cause of care refusal. First, it’s incredibly common, especially in people who are experiencing advancing health issues. Second, it's one of the more treatable causes of these behaviors; there are highly effective treatments for depression in people of all ages. Medication is especially helpful when used in conjunction with some form of supportive psychotherapy. Third, many primary care doctors are untrained to recognize the unusual face of geriatric depression, and even if they happen to recognize it, they may have little experience in how to start or dose medications.
Changes in mental status can be caused by medication. If it seems that a decline in self-care coincides with the start of a new medicine or a change in the dose of an existing one, tell your loved one’s doctor. In consultation and collaboration with them, it may be worth considering ceasing or changing a particular medication.
Sensory deprivation, like visual or hearing impairment, becomes more common as we get older and can play a role in declining self-care. Some examples are a decreased sense of smell or a lack of awareness around wounds or rashes because of decreased skin sensation due to diabetes or other disorders.
Hearing loss may keep people in bed all morning because they don’t hear the alarm. Not being able to read a prescription bottle can result in taking the wrong medication at the wrong time. These changes can have a major impact, and many of them can be remedied with glasses, cataract surgery, or a hearing aid.
Other Medical Causes
The list of medical reasons behind a decline in self-care is nearly endless. It includes many conditions that are less common but associated with behavioral changes. They range from acute illness, like a urinary tract infection or pneumonia, to chronic illnesses that have gone undetected, such as lung issues that deprive the brain of oxygen or a small stroke. Psychiatric illnesses other than depression (bipolar disorder, forms of mania) can lead to a decline as well.
Work closely with your loved one’s primary care physician to figure it out. Changes in behavior that occur abruptly usually portend a medical cause as the basis, whereas ones that develop slowly point to a worsening, chronic medical problem. Regard care refusal as a new symptom like any other — a cough, chest pain, or shortness of breath. It’s especially important to note when this behavior is out of character compared to the person’s typical demeanor.
Non-Medical Causes of Bad Decision Making
While there are many medical causes of poor decision-making, refusing care is often emotional, driven by the fear that accepting help is the first step on a slide to total dependency and things like nursing home placement.
If you’ve assessed and ruled out potential medical issues, it’s likely that an emotional or practical barrier is leading to the behavior of wanting to be “left alone.”
Emotional and psychological barriers are common, understandable human reactions. Some concerns include:
- Fear of losing control
- Fear of being placed in a nursing home or assisted living facility
- Feeling that accepting help is stigmatizing or infantilizing
- Fear of losing other “human” activities and connections like driving
- Fear of burdening family or friends
- Fear of death
Often, emotional fears are compounded by practical, tangible worries. The most common example is a fear of stressing ones’ finances (especially for those living on a fixed income).
Approaching With Empathy
When you begin to understand these concerns, it creates a gateway into one of the most important tools you have to address the problem: empathy.
Picture what your loved one might be going through: living in the same home for 50 years, losing a spouse, and then having your kids insist that you must have a home attendant watching your every move. Or what it must feel like to love the freedom of driving for 60 years, and then being told you can’t. Or living privately in your own home for decades, and then being sent to a facility where you have a roommate for the first time since you were a college freshman or served in the army.
These can be tough adjustments, and if you think that you’re going to make constructive headway by “talking some sense” into your loved one, it's not likely to work. But when take a step back and understand the underpinnings of care refusal, you can begin to adopt strategies that are more likely to be successful.