Dementia and Human Rights – What Rights Does a Person With Dementia Have?
Aging, whether one has a diagnosis of dementia or not, can feel as if choices become more and more limited. Unlike being young with years of life ahead, once a person reaches middle or old age, there can be health concerns to deal with that can negatively impact daily life.
Experiencing memory loss can be frightening. Receiving a diagnosis of dementia or Alzheimer’s can be life-changing.
Awareness, thoughts, and beliefs about aging and human rights—and dementia and human rights become more relevant as we age.
In my professional career, I was a guardian, power of attorney, and care manager for persons progressing through all stages of dementia. This includes persons diagnosed very early who were practical about the diagnosis and wanted to plan.
There were others not diagnosed until the memory loss had progressed beyond their ability to understand what had happened, and others who were diagnosed with dementia but refused to talk about it.
A Dementia Diagnosis Benefits from Early Planning
Dementia is an irreversible condition that benefits from early planning so that persons with dementia can maintain their human rights, dignity, and personhood.
Simple things can become difficult for persons with dementia.
The challenge may be understanding why maintaining human rights, dignity, and personhood is essential for a person with dementia.
Stay with me while I share definitions used by the medical and legal community that you might not be aware of. I’ll also share examples of how dementia and human rights play out in daily life and situations, whether you are the person with dementia or the person caring for someone with dementia.
Autonomy
Let’s begin with the word autonomy. Autonomy is the feeling of being in control of your life and being able to act on your beliefs. We all want autonomy. We do not want anyone controlling our daily lives.
In the bigger picture of life, there are degrees of autonomy.
Generally, we follow the rules set by the government, like filing income taxes, stopping at red lights, and driving on the right or left side of the road, depending on the country where we live.
We do these things without much thought because everyone does them. So, we may not see participating in these activities as losing autonomy or being controlled.
Self-Determination
Self-determination is another phrase heard in social care, medical care, or legal circles. Self-determination relates to a person’s ability to make choices about life.
Autonomy and self-determination go hand in hand. When choices exist, people feel more in control.
For example, you go to the store and have a choice of 20 different cereals or 10 yogurt flavors instead of being limited to one or two. Having choices makes us feel good.
Now, let’s complicate autonomy and self-determination by adding people, relationships, and outside influences. Aging has consequences that are difficult to predict until one is in a particular situation.
Caregivers may see the effects of age on themselves, their parents, or their grandparents, who seem to be slowing down or having more frequent health problems.
Human Rights and Dementia
The idea of aging and human rights and dementia and human rights becomes more relevant with age, especially when dealing with the health care system, doctors, hospitals, insurance companies, nursing homes, home health care, or medical treatments.
As memory loss progresses, persons with dementia find it more challenging to deal with details, including scheduling appointments, initiating projects, and managing money.
For most people managing their health, figuring out the difference between co-pays and out-of-pocket expenses and how these add up to annual deductibles can be confusing. Medicare and Medicare Advantage plans have guidelines that can be confusing.
Managing health insurance, deductibles, payments, and related tasks can eventually be too much for a person with dementia to manage. Health problems can add up, making complicated healthcare decisions more difficult for persons with dementia.
Loss of Autonomy and Self-Determination
A health diagnosis, especially dementia or Alzheimer’s, can significantly affect human rights, patient rights, choices about medical care, and daily life. You might wonder how.
Let me share examples related to persons with dementia who eventually lose their ability to make complicated decisions.
What Are The Legal Rights of Persons With Dementia?
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While a power of attorney agent or a guardian or a conservator is supposed to follow the instructions given to them previously by the person with dementia or use “substituted judgment,” this does not always happen.
Substituted Judgment
Substituted judgment means making choices for someone else based on what that person would have wanted. Substituted judgment can mean using a person’s past behaviors or patterns of behavior to determine future actions.
Using substituted judgment can mean talking to family or friends to get an idea of the choices a person with dementia would have made. The challenge with substituted judgment happens when family emotions get involved.
Family Litigation Around Dementia
For example, you are diagnosed with dementia. Your children never got along—although you believe you had good relationships with all of them.
One of your children becomes angry or jealous of their sibling appointed as power of attorney or guardian because this child feels you favored their sibling.
The angry child starts legal action, which has no benefit for you. However, the litigation is positioned as good for you because this child loves you more than all the other—or at least that’s what is said to the court.
In reality, this child wants control of your money and your daily care to make up for the lack of attention and love they felt was taken away from them by their siblings.
Giving this child control of your life is NOT what you wanted. If it was, you would have legally appointed this son or daughter.
The result is that the child you appointed as a power of attorney or guardian has to defend themselves. Money from your estate pays the legal fees, and the court decides. This legal decision impacts your care and your daily life.
But because your dementia has progressed, there’s nothing you can do about it. Depending on the stage of dementia, you may not be aware legal battles are happening between your children.
The outcome is in the hands of the attorneys arguing the case and the court system. What you want or wanted no longer matters. This is one example of a loss of human rights for a person with dementia.
The Unimaginable
In my experience, no person with dementia imagines losing their human rights or that their families might battle over their wishes.
For this reason, paying attention to dementia and human rights, self-determination, and autonomy is essential if you are a person diagnosed with dementia. When you can no longer remember or advocate for yourself, having someone you trust in this role is necessary for your protection. It’s also vital to protect a loved one with dementia from people in your family who may not have the best of intentions.
If you have memory loss and want to make sure your loved ones do what you want, put your wishes in writing. Consider the unexpected situations that might happen between your children or other family members. Plan for the worst and expect the best.
Independent, Never Married, and Living Alone
You are a very independent and detail-oriented person. You had a great job, invested and managed your money, lived independently. You never married or had children.
You start having memory problems. You live alone. There is no one to tell you that you are getting forgetful.
Maybe you are aware of the diagnosis but unsure what to do or how to plan. Your doctor didn’t explain what might happen. Instead, he or she wrote you a prescription.
The time when a person is first diagnosed is the best time to put protections in place for yourself so that dementia does not result in losing human rights and choices.
You didn’t make an estate plan. You did not appoint a medical or financial power of attorney. There is no living will, or a will, or a trust.
Your memory loss advances. Now what?
In a perfect world, someone you trust in your family goes to court to get guardianship and conservatorship to care for you, and everything works out perfectly. One can only hope, but this is not usually how not having a plan for dementia care works out.
Dementia Care from Others
If you have dementia, the healthcare system and care providers can gain control over your life. Living in a care community, following schedules, and being cared for by others on a schedule to help ten other people with dementia can eliminate autonomy and self-determination.
While dementia and human rights have been hot topics for years all over the world, there are gaps between what providers and people say is the right thing to do versus doing the right thing to care for persons with dementia.
Person-Centered Care
Let’s look at the next important phrase to understand: person-centered care. Person-centered care has different meanings.
Person-centered care usually means that the information you provided when your memory loss was less advanced is considered in relationship to your daily activities.
Maybe you liked to sit outside in the warm weather, or you liked to listen to music. Maybe you liked some people in your family and not others. So some people are allowed to visit you while others are not.
Person-centered care means that your preferences are incorporated into your day-to-day activities by the care community staff where you live or the caregivers who come into your home to care for you.
Personalized care is an approach to healthcare that considers individual needs, preferences, and circumstances. While this seems ideal, once a person with dementia loses the ability to advocate for themselves, an advocate is needed.
Healthcare providers can become biased against the elderly, especially persons with dementia who are unable to communicate effectively. I experienced this when I was a court-appointed guardian. Physicians overlooked my clients and sometimes hesitated to provide the care my client would have wanted if he or she could have spoken up.
It was up to me to make sure that the human rights and wishes of my clients with dementia were known to medical and other providers.
Parents With Dementia Who Name Friends Instead of Children in Legal Documents
Your children rarely call or visit. They live in another state or halfway across the world. They enjoy the gifts and money you send yearly and hope for an inheritance when you die.
You have your life and your friends who become your caregivers. You create or change your legal documents to make two long-term friends, your agents under power of attorney, and your trustees.
To be transparent, you notify your children of this change. They react. Your children are upset that you chose someone other than them to help you when your dementia progresses. They are worried your friends will spend all of your money or won’t do the right thing, even though they haven’t been involved with you for years.
So what happens? Your children file a lawsuit to remove your friends’ legal authority. Your decisions are questioned. As a person with dementia, you fight for your human rights, your autonomy, and your self-determination.
Court System Processes Vary State by State
Depending on the laws in your state, persons with dementia may have more or fewer rights.
In some states, probate judges readily deny a person with dementia their human rights, autonomy, or self-determination believing that attorneys are honestly and fairly dealing with family members and others. Families and others testify to do the right thing in court and, once appointed, go off and do the opposite with no one to check on them.
Depending on the state, probate courts may have little oversight. There may be no one monitoring cases. Reporting requirements may be minimal. There aren’t enough people to read the required guardianship or conservatorship reports to know if wards, protected persons, or conservatees are being neglected or well cared for.
In other states, probate systems are well run. Training requirements are in place for family and professional guardians and conservators. State statutes support high standards for guardianship, conservatorship, power of attorney, and trustee responsibilities. Care plans and reports are reviewed and sometimes questioned.
Judges and court systems have a lot of power to determine who controls the life of a person with dementia. Depending on where you live, fighting for your human rights, autonomy, and self-determination can be a battle if you are a person with dementia who knows what you want.
The Small Window Between Capacity and Incapacity
Persons with dementia who can still express their wishes find themselves in these contested court situations and have difficulty imagining how these situations will ever happen. This happens when a person may have undergone testing and be in the gray area between being clear about their wishes and sometimes a little more forgetful.
In my opinion, if a person’s wishes have been expressed repeatedly before a diagnosis or early during a dementia diagnosis and documented, their wishes should be upheld by court systems and their families who might disagree. The challenge may be having an attorney who videotaped the signing of legal agreements or a client who willingly had a physician write a letter about their competency.
Sometimes, the only factor to ensure the wishes of a person with dementia is an attorney who knows that documents might be challenged and takes precautions. Protection for a person with dementia can also come from having the foresight to request a medical letter of competency that becomes part of a legal document.
But this rarely happens because persons with dementia or their family members or caregivers or friends never think actions or intentions will be questioned. People may not understand what can happen when self-interested family members or the legal system gets involved.
Self-Interest vs. Protecting the Rights of Persons With Dementia
The self-interest of people who believe they are doing the right thing can cause all kinds of problems for persons with dementia. If you don’t want this to happen, you should take precautionary steps early in the dementia diagnosis to protect human rights, autonomy, and self-determination.
People with dementia can be seen as the disease and not the person they were during their lifetime. Their lifelong habits, preferences, and wishes can be set aside. As individuals, their needs are deprioritized and undervalued because they can no longer speak up for themselves.
Persons with dementia can lose their rights to make choices because doctors, adult children, or staff at care communities feel they know better. Family relationships, life circumstances, and environments significantly affect people with dementia.
A Total Loss of Control
Imagine how powerless it might feel for a person with dementia to lose total control over their life. When in your life have you felt powerless?
If you have, then you might understand how it feels to age and lose control over your life decisions— whether or not you have dementia. Becoming sick and vulnerable and relying on others for care can be an uncomfortable, out-of-control feeling.
My recommendation for everyone, regardless of whether you have a dementia diagnosis. Plan ahead.
- Don’t assume your family will care for you.
- Consider your relationships with your children and the relationships between your children.
- Put your wishes and wants in writing.
- Get your legal documents in order and have them notarized in front of witnesses.
Make plans to avoid anyone in your family taking away your human rights, autonomy, and self-determination, regardless of your health concerns. Be transparent in your family relationships and in expressing your wishes.
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