A woman sitting with her head down and covered by her hands. By Charlie's via Adobe Stock.
Sophia Soto ’27 is a Public Health major with minors in biology and Art History, and she is a 2025-26 health care ethics intern at the Markkula Center for Applied Ethics at Â鶹ŮÀÉ. Views are her own.
Life as a Caregiver: A Thirteen-Year Journey
She recalls the day when becoming a full-time caregiver while also managing their entire household became overwhelming. She describes the mental and emotional toll, including loneliness and isolation, and how Gene’s deterioration caused frustration that he often directed toward her. She reflects on an epiphany she had after putting a hole in a wall out of frustration and despair: Gene could not change his condition, but she could change her mindset. She joined a caregiver support group, which gave her an outlet to share experiences with people who understood what she was facing.
Eventually, she realized that although she wanted to remain his primary caregiver, she could no longer provide the level of care he needed as his condition worsened. After he developed seizures, he was admitted to Johns Hopkins for treatment. Kathy remained devoted, demonstrating strength and perseverance through a devastating disease. Although she experienced significant emotional and mental strain, she ultimately found support through caregiver groups and medical professionals and was able to move forward.
How do we do Right by Both the Patient and the Caregiver?
A principlist point of view allows both the caregiver and the loved one to be considered equally. It considers four main factors: justice, nonmaleficence, beneficence, and autonomy. In the case of caregiver fatigue and the ethical considerations involved in honoring a loved one’s wishes, we can see .
The most obvious principle here is autonomy. We want to give as much autonomy as possible to a loved one who is suffering from dementia. That requires having as many conversations as possible beforehand, while the loved one is still lucid. However, it is also important to note that much of the burden of honoring autonomy ultimately falls on the caregiver. While conversations can happen in advance, when it comes time to truly make decisions after a loved one is no longer lucid, it is the caregiver who must decide what they are capable of handling. Strong surrogate decision-making standards are essential. We must decide when prior wishes can be overridden.
From an autonomy perspective, we should always honor the patient’s wishes. If there are severe detriments to the caregiver’s mental, physical, or emotional health, these must be taken into consideration because they are the ones providing care daily. If a caregiver cannot provide adequate support, patient harm can occur. Increased caregiver burden increases risk to the patient. In such cases, non-maleficence may outweigh autonomy.
A caregiver wants to honor the wishes expressed when their loved one was lucid. However, no one can truly understand the toll that caring for someone with dementia will take until they experience it firsthand. This question is about who holds the duty of care for caregivers. While caregivers bear much responsibility, doctors treating dementia patients should also support caregiver well-being to prevent harm to patients. The state should contribute as well, funding respite care and wellness checks, since unpaid caregiving saves insurers and the government high costs overall.
Beneficence is always strong because it is often at the core of the caregiver’s motivation. Caregivers want to do the most good for their loved ones. They want to help, care for, love, and honor them as much as possible. This desire to act in their loved one’s best interest strongly influences their decision making.
From a care ethics defense, so many of the ethical considerations are wrapped up in those relationships. This is not a strictly professional relationship. This is especially true when caring for a loved one who is not always lucid, because the caregiver is required to make decisions on their behalf.
The strong emphasis on empathy and attentiveness within care ethics is particularly important in this case. Much of what a caregiver does involves trying to better understand their loved one’s needs and wishes. They work to truly listen, to understand why certain choices are being expressed, what emotions may be behind those choices, and how best to support them. Caregivers are often trying to support their loved ones through an incredibly difficult time, both emotionally and physically.
A strong way to understand this ethical dilemma is through role conflict and role strain. Role conflict occurs when multiple roles create tension for one person. In this situation, a caregiver’s role may conflict with roles as spouse, child, parent, or employee. Role strain arises when a single role creates internal tension between personal desires and physical or emotional limits. This leaves caregivers unsure about decisions and highlights tension between autonomy and nonmaleficence. Caregivers want to follow loved ones’ wishes, but these may not always align with the safest or healthiest outcomes.
Additionally, the essence of care ethics closely aligns with what a caregiver is striving to do. Caregivers want to interact with their loved ones in a supportive, nurturing, and protective way. Their primary goal is to do as much good as possible by providing thoughtful and compassionate care.
Overall, one of the most important aspects of care ethics to consider is that it is not a one-size-fits-all framework. It recognizes that every relationship between a caregiver and a loved one is unique. Because of this, each situation requires its own careful consideration, and different circumstances may call for different choices and approaches.
What are the Best ways That we can Support our Caregivers?
It is important to say, first and foremost, that every single situation is going to be different because every caregiver and loved-one relationship will look different based on the relationship that existed before the loved one was diagnosed with dementia. However, some things that would be at least somewhat universal include having as many conversations as possible with your loved one while they are still lucid about their wants and wishes, and working through as many what-if scenarios as possible. This would help give the caregiver more confidence and security in the choices they will ultimately have to make, which may help reduce some of the mental load and potentially alleviate at least some caregiver fatigue. This would also help give the loved one who is suffering from dementia autonomy while simultaneously working toward the beneficence of the caregiver and making sure that they are being cared for as well.
While these conversations are happening, the caregiver needs to speak up. They should express what they currently believe their limits to be and identify situations in which they might need outside help or need to change living arrangements.
Solutions will involve compromise. For example, instead of a loved one remaining in their own home, they might move in with the caregiver. This could reduce travel and logistical burdens while still keeping the loved one out of a skilled nursing facility and close to family. In this way, the caregiver attempts to balance autonomy, beneficence, and nonmaleficence.
Sponsored support groups for caregivers could make a significant difference. These groups allow caregivers to talk to one another, share practical advice, exchange experiences, and vent when necessary. Connecting with others who understand the emotional weight of caring for a loved one may help reduce some of the mental burden that comes with holding so much responsibility for another person’s well-being. This is another way that we can see care ethics coming into play because it allows caregivers to build relationships that support them during what can be an emotionally taxing time.
Systemic changes are also necessary, and an example of this would be providing paid leave to care for a loved one or offering more flexible hours, or the ability to work from home when possible, through the caregiver’s employer. This would also help reduce other stressors on the caregiver. First and foremost, we need to care for the caregiver, and to do that, we need to check in regularly. Ensuring that the patient’s physicians are also checking in with the caregiver is important and can be easily integrated into standard appointments. This will ensure that the caregiver has a place to go for support, guidance, or access to resources.
Another strong option would be respite care funding under the . Respite care is temporary, short-term care that can occur in the home or at care centers, where the individual with dementia is cared for by someone other than their loved one, now the caregiver. This is meant to help reduce caregiver burnout.
Where do we go from Here?
Overall, we can see that the best way to truly care for the caregiver is a multi-pronged approach. There is obviously a lot of entanglement of relationships and emotions, which is where care ethics really comes into play, helping to consider those and bringing in the empathetic state of mind that one needs in order to look at both the caregiver and the patient side of this entire situation.
We can also see that in any solution we come up with, we want to make sure that we are not doing harm to either the caregiver or the patient, while also ensuring that we are acting with both of their best interests in mind. At the end of the day, it really comes down to the fact that what a caregiver needs is the ability to make choices that ensure their loved one is cared for while still allowing the caregiver to be cared for as well.
Because at the end of the day, we are all only human, and all humans need to be cared for.