Have you ever been concerned about an older relative who seems to be making bad decisions?
Perhaps your elderly father insists he has no difficulties driving, even though he’s gotten into some fender benders and you find yourself a bit uncomfortable when you ride in the car with him.
Or you’ve worried about your aging aunt giving an alarming amount of money to people who call her on the phone.
Or maybe it’s your older spouse, who has started refusing to take his medication, claiming that it’s poisoned because the neighbor is out to get him.
These situations are certainly concerning, and they often prompt families to ask me if they should be worried about an older adult becoming “incompetent.”
In response, I usually answer that we need to do at least two things:
- We should assess whether the person has “capacity” to make the decision in question.
- If there are signs concerning for memory or thinking problems, we should evaluate to determine what might be causing them.
If you’ve been concerned about an older person’s mental wellbeing or ability to make decisions, understanding what clinicians — and lawyers — mean by capacity is hugely important.
In fact, the American Bar Association’s Ten Legal Tips for Caregivers lists “Understand Decisional Capacity” as tip #1. But so far, I’ve found very little information available online, to help older adults and families understand this important issue.
So in this article, I’ll answer some of the frequently asked questions that come up around this topic:
- What does the term “capacity” mean when it comes to decision-making?
- What is the difference between incapacity and incompetence?
- How is capacity determined?
- How do Alzheimer’s disease and other forms of dementia affect capacity?
- Does capacity have to be determined by legal professionals? Is it a “legal decision” whether someone has capacity?
- Do I have to have a legal or clinical determination of incapacity for a specific decision before I override the decision of an older person with dementia?
I’ll also share a list of additional resources and references at the end.
What does the term “capacity” mean when it comes to decision-making?
Let’s say you tell me that your 87-year old aunt Mary has been falling repeatedly, but she refuses to go see a doctor.
In this case, we might consider whether she has the capacity to decide whether or not she needs to see the doctor. It’s especially vital to do this if Mary has been showing signs of memory or thinking problems, or if she’s been diagnosed with a dementia such as Alzheimer’s.
When we ask whether a person has the capacity to make a given decision, we are asking whether the person can show us that he or she has the mental abilities necessary to make the decision.
Generally, capacity requires that individuals be able to understand:
- The situation they are in,
- The decision in question,
- The consequences of making a given choice.
The person should also be able to explain his or her reasoning, and express the choice to others. And the reasoning should not rely on anything that strikes most people as bizarre or delusional.
Experts have determined that capacity requires these four decision-making abilities:
- Understanding: Understanding the issue/decision and the available options
- Expressing a choice: Being able to state a decision
- Appreciation: Being able to explain how the information about the situation and available options apply to one’s personal situation
- Reasoning: Being able to compare options and understand the relevant consequences.
Different types of decisions require different types of mental abilities. Experts consider that these six civil capacities are of particular importance for older adults:
- Medical consent capacity
- Financial capacity
- Testamentary capacity
- Sexual consent capacity
- Capacity to drive
- Capacity to live independently
Legal standards for capacity are determined by state law. The specific requirements can vary, depending on the state and the type of capacity in question.
People sometimes assume that decisional capacity is an “all-or-nothing” type of ability: either you have it, or you don’t. This is sometimes framed as whether a person is “competent” or “incompetent” to manage affairs. (See below for more on capacity and competence.)
But the reality is more complex. Here are two essential points everyone should understand.
1.Capacity is decision-specific.
This means a person’s capacity should be evaluated in light of a specific decision to be made.
Why does this matter? Well, some decisions are complex and require a person to consider and weigh multiple pieces of information. For instance, the decision to sell one’s home, which may involve consideration of tax and estate consequences, is often quite complex.
In comparison, some decisions may be relatively straightforward. For this reason, it is possible for a person to lack capacity to make certain types of decisions while retaining the capacity to make simpler decisions.
2. Capacity can fluctuate, depending on a person’s health circumstances.
For instance, most people immediately after surgery are drowsy. In this state, most will lack the capacity to address anything more than a very simple decision. But, their decisional capacity should improve as the person mentally recovers from the surgery.
It is also common for people with vulnerable brains, such as people with a diagnosis of Alzheimer’s or another dementia, to experience fluctuations in capacity. When they are feeling well and are at their best, their mental abilities might be good enough for them to have capacity for many decisions. But if they are sick, or stressed, or otherwise not thinking at their best, their capacity to make decisions can be reduced, sometimes drastically so.
For these reasons, before concluding that a person lacks capacity for a given decision or task, every effort should be made to improve capacity if at all possible. Such improvements may be possible by treating an underlying health problem, or by mitigating any hearing or vision problems.
I explain a simple device that geriatricians often use to improve hearing here: Age-Related Hearing Loss: What to Know & What to Do.
What is the difference between incapacity and incompetence?
Capacity is often considered from a clinical perspective (i.e. by doctors, psychologists, and others) versus a legal perspective (i.e. by lawyers, judges, and courts).
Historically, the term “competence” was used in legal settings and the term “capacity” was used in clinical settings. The legal determination of competence related to whether a person had the legal right to make their own decisions, and was usually informed by a clinical assessment of capacity.
Hence many clinicians will still say that they cannot assess someone’s “competence;” they can only assess their capacity as regards a given decision or life function.
However, states have recently been moving away from global legal determinations that a person is “incompetent,” — which often meant the loss of virtually all control over one’s affairs — and are increasingly favoring determinations of incapacity for certain types of decisions or life functions.
Hence the old convention of using “competence” for the legal arena and “capacity” for the clinical one no longer works well.
Instead, it is more accurate to refer to “legal capacity” versus “clinical capacity.” These two concepts are distinct – albeit related — as explained further below.
How is capacity determined?
In most situations, we presume that adults have capacity. If concerns about capacity are raised by others, or if a professional notices anything to cause concern about capacity, then a process of further assessing capacity may be started.
Legal professionals are generally required (by state laws and by their professional code of conduct) to conduct a preliminary assessment of a person’s capacity to complete a given legal task. They may be required to take action if they believe a person may not have capacity for the issue at hand.
However, legal professionals are not trained to clinically assess capacity. Such assessments must be done by professionals with some type of healthcare — often psychology — background.
Clinical capacity assessments vary depending on the type of clinician involved and the capacity issues in questions. Generally, they include a more detailed evaluation of the person’s capabilities, and should also include the likely medical causes for any reduction in capacity.
This article describes a very practical framework for assessing capacity for older adults to make common decisions: Everyday Decision-making Ability in Older Persons with Cognitive Impairment.
A clinician’s evaluation of capacity will result in a clinical opinion regarding the capacity in question. Clinicians sometimes may state that a person appears to have marginal or borderline capacity for the decision in question.
This clinical opinion can then be used by legal professionals to help them complete their legal determination of capacity.
How do Alzheimer’s disease and other forms of dementia affect capacity?
Any disease or disorder that disrupts cognition — the brain’s memory and thinking processes — can impair a person’s decision-making capacity.
In early Alzheimer’s and dementia, people usually retain the capacity to make many types of decisions, but not necessarily all of them. It all depends on the decision in question, and also on which thinking processes seem to be most affected in a particular person.
For decisions that are complex or high-stakes (e.g. those related to property or large sums of money), it is a good idea to assess the person’s capacity to make the decision in question, before proceeding.
It would also be appropriate to consider or assess capacity if the person with early dementia is making questionable decisions that affect their health or safety.
As dementia progresses over time to a moderate stage, people will lose the capacity to make all but the simplest decisions. At this point, a family member or other trusted person will generally have to make most decisions on behalf of the person with dementia. For this reason, people diagnosed with Alzheimer’s and other dementias are highly encouraged to designate a power of attorney for healthcare and for general affairs, while they still have the capacity to do so.
Does capacity have to be determined by legal professionals? Is it a “legal decision” whether someone has capacity?
Yes, in principle capacity is a legal determination and should be made by legal professionals.
However, in most states, physicians and other clinicians are allowed to determine capacity for medical decisions, especially for the purposes of enabling a surrogate healthcare decision-maker to act.
In the real world, many people take action without fully understanding the laws and procedures related to capacity, or without consulting a competent lawyer. Such actions often proceed unless another person brings suit to contest the actions.
For instance, it’s fairly common for family members and others to take action based on a physician or other clinician opining that an individual has become “incapacitated” or “incompetent.” But such actions may be on shaky legal or ethical ground, especially if actions of major consequence (e.g. sale of property) take place. So if a family suspects loss of capacity, it’s best to seek legal assistance before proceeding.
Do I have to have a legal or clinical determination of incapacity for a specific decision, before I override the decision of an older person with dementia?
Yes, you should seek a clinical assessment of capacity if you are concerned about a dementia such as Alzheimer’s disease. This is especially important if you believe it has progressed to the point that a person has lost the capacity to make certain decisions.
If you feel you need to override the person’s decisions, for instance to protect the person’s physical safety or financial wellbeing, you may need a legal determination of incapacity.
If the person with dementia has completed a durable general power of attorney, the agent should be able to act on their behalf. To override decisions made by the person with dementia, the agent will often need to provide proof that the person has lost the capacity to make certain types of decisions. Many power of attorney documents specify the criteria for deeming the principal incapacitated, although some are pretty vague about this.
If the person who has dementia has not completed a durable general power of attorney, then you will probably need to consult with a lawyer, to determine whether the person still has the capacity to designate a power of attorney. If the person is lacking this capacity, then you may need to pursue guardianship in court, in order to override the person’s decisions.
Even if you have secured a legal determination of incapacity for certain decisions, it’s vital to act in accordance with ethical best practices that respect the person’s autonomy and dignity to the greatest extent possible.
Do I need a legal or clinical determination of incapacity before I take the car keys away from an older parent who has dementia and is an unsafe driver?
If you are concerned about dementia and driving, you should make every effort to obtain a clinical assessment of capacity to drive safely. A legal determination of incapacity to drive will also help ensure you are on sound legal and ethical footing.
It’s also essential to learn more about your state’s options and requirements when it comes to reporting potentially unsafe drivers. For instance, some states require clinicians to report moderate or severe dementia to the DMV.
However, many families find that the older person in question is refusing to see a doctor or attorney. In this case, you can still call the doctor and report your concerns. Privacy laws such as HIPAA do not require families to get permission to reveal details to the doctor; they only require health professionals to have permission — or other good reasons — to disclose a patient’s information to others. If the doctor has a good relationship with the older person, they may be able to persuade them to come in for a visit.
Or, you can try calling Adult Protective Services; they don’t take a person’s car keys away but they can sometimes encourage or even insist on further evaluation. You can also try to enlist others in the older person’s social circle, to see if it’s possible to persuade the person to give up the keys.
As a last resort, if you have evidence that driving poses a substantial risk of harm to the older person and to other motorists and pedestrians, it’s reasonable to conclude that this outweighs the harm of taking a person’s keys before legal incapacity is confirmed. Such evidence might be past crashes or near-misses, combined with other evidence that the person has reached a state of moderate or worse dementia, such as frequently getting lost or appearing confused.
Of note, the Alzheimer’s Association’s position statement on driving and dementia states:
“Driving privileges must be withheld when the individual poses a serious risk to self or others. Interventions to prevent driving in individuals who lack insight include physician oral or written recommendations, taking the keys, removing the car, changing the locks, filing down the ignition key, and revoking the license.”
Is neuropsychological testing required to assess capacity?
Not necessarily. Clinicians are usually allowed to use “clinical judgment” in conducting their evaluations and reaching their conclusions.
Especially if a person has a dementia that is at a moderate or severe stage, it is often possible for a generalist physician to provide evidence of a lack of capacity, simply by interviewing the person, documenting responses that demonstrate a lack of needed understanding or reasoning, documenting evidence from family members and other observers, and providing evidence that the medical cause of the thinking problems is not likely to improve.
However, if a person’s cognitive impairments are mild, subtle, or focused in certain cognitive domains, then neuropsychological testing is often very useful. Neuropsychological testing can also be used if a preliminary clinical evaluation by a physician yields borderline or uncertain results.
Resources & References to Help You Understand Capacity
Written for the lay public:
- Legal Planning (Alzheimer’s Association)
- Assisting a Person with Dementia in Planning for the Future (Alzheimer’s Association)
- Driving and Dementia (Alzheimer’s Association)
Written for professionals:
- Assessment of Capacity in Older Adults (American Bar Association/American Psychological Association)
- Includes links to free comprehensive guides for clinicians, lawyers, and judges
- Understanding Legal Capacity and Ethics (Practice Guide, National Center on Law & Elder Rights)
- Overview of Guardianship and Alternatives to Guardianship (National Center on Law & Elder Rights)
- Assessment of Capacity in an Aging Society (PubMedCentral)
- Clinical and Ethical Aspects of Financial Capacity in Dementia: A Commentary (PubMedCentral)
Note: I am not an attorney or a psychologist. This article is based on my review of the above resources, plus my own clinical experiences and conversations with attorneys and other experts.
This article was first published in May 2016 and was last updated in June of 2022.
Deb says
My 88 year old mother has dementia. There is a medical POA and a durable financial POA in place. Her doctor stated recently she is no longer able to manage per personal or financial affairs. One sister (of 5 siblings) has arranged an appointment with a neurologist on May 11, 2023 to have her evaluated. If she is declared incapacitated by the neurologist, do we have the legal (I assume the moral) responsibility to have her monitored at all times. She is very set against having anyone in her house, other than family, to help her. I am 8.5 hours away, and the local siblings aren’t willing to do more than just check in on her. She is very against going into assisted living with memory care or a nursing home. And she doesn’t seem to need it right now. She seems to be cognizant at times. Another question is: if we get APS involved, will they tell us what needs to be done, rather than giving us a choice, and will they help us get it done when mother is impossible to deal with and screams at those trying to help her.
Nicole Didyk, MD says
My understanding is that a finding of incapacity relates to a specific decision – like whether to have an operation, move to a nursing home, or get married. It’s usually not possible to declare a person globally incapable, unless they have a sever cognitive impairment or are very ill, such as in a coma.
It’s really up to you as a family, based on your knowledge of your mom’s personality, preferences, and life history, as to how much supervision she would want. Whatever her living situation, whether at home or in an assisted living setting, there will be risks and benefits. You might be interested in this video about “Living with Risk” : https://youtu.be/A-nugANRenE
I can’t speak to what Adult Protective Services will do, as it can vary from region to region. There’s usually some leeway for choice, unless it’s an emergency or crisis.
John says
I have an 85 year old grandmother that everyone says is competent, but I have raised many concerns (including but not limited to safety concerns.) I live with her as well as my mother and we also have a roommate. Recently we found toxic black mold in the addition so I removed the paneling and treated the mold, insisting that everything that was treated and no longer had mold on it be put into the garage while the room was fully treated. It has been a steady fight to keep the doors to the room closed to prevent mold from coming into the house and making everyone sick. I tested many other rooms in the house and found mold spores in all the rooms downstairs. Should a doctor be involved or an attorney.
Nicole Didyk, MD says
I’m not sure I have enough information to answer your question about whether to consult a doctor or lawyer.
Black mold is also known as Stachybotrys chartarum, a fungus that can secrete a mycotoxin. Usually, molds cause issues if they trigger allergic reactions in some, but there’s controversy about mold as a cause of severe disease.
It’s great that you’re looking out for your grandmother and making sure she has a safe environment in which to live.
Vera Banks says
I am reaching out, I have a brother who has seizures constantly, and a very bad loss of memory, pretty much dementia, he goes out in the street and cant to remember where he lives or how to get back home.
he is also an alcoholic, i don’t know where to start to get assistance for him, he doesn’t have a primary doctor, because he can’t afford the doctor bills. he does get a disability check from Social Security, The family believes he needs to be in an assistant living facility, what do you think
Nicole Didyk, MD says
Seizures can be more likely to occur in those with alcohol use disorder, and can cause confusion, usually after the seizure occurs (called a post-ictal state). It does sound like your brother is vulnerable given his seizures and episodes of getting lost.
Is there a social agency on your area that can assist with vulnerable adults? Some communities have a crisis mental health and addictions team that can intervene when a person is at significant risk of harm to themselves. I would start with contacting the social services in your region for advice. In your state, try: https://www.ncdhhs.gov/divisions/social-services
Tom Atteberry says
What can I do if I don’t think my father is being cared for by his spouse properly, but she is the one who has HIPAA authorization, Medical Power of Attorney and advance care directive? I am in another state and can get no information on his medical. Do I hire an attorney to ask for this to be evaluated? We just want what is best for our Dad and to know what medically is going on. At this time, he is not able to make decisions on his own due to heavy medication and thinking he is somewhere other than where he is, or thinks people are in his room taking everything out but no one is in there. Normally his mind is good, this is due to some sort of medication. Need advice
Nicole Didyk, MD says
This sounds like such a difficult situation.
First of all, I do recommend Dr. Kernisan’s recent book: When Your Aging Parent Needs Help: A Geriatrician’s Step-by-Step Guide to Memory Loss, Resistance, Safety Worries, & More . In the book, Dr. K offers clear advice about how to focus in on the best way to help your parent, even when there are cognitive and family issues.
A lawyer might be able to help get access to the medical information. Are there any social agencies that your could report to about the situation? There may be an elder abuse team that could visit your dad and his spouse and determine if there’s any risk, and whether any other services could help.
It’s so hard doing this from a distance. Another idea is to express your concern to your dad’s medical providers (if you now who they are). They may not be able to share information back, but might find your information helpful.
Susan says
Hi. My 88 yr old mom had stroke 5 wks ago and went to nursing home for rehab. Medicare stopped paying after 3 wks in and she lives alone in apartment and was not assessed to be able to go home. They agreed to ok her for assisted living so my brother and I got her to go. She just talks about when she goes home constantly. She has left side weakness, a fib, incontinence and short term memory confusion. She has no power of attorney. She has nobody that can live with her as she needs major assistance. Can she be released on her own to go home alone? She needs assisted living care but does not want to stay. She cannot function alone and cannot afford live in care.
Nicole Didyk, MD says
I’m sorry to hear about your mom’s stroke. It sounds like she’s having trouble adjusting to the idea of assisted living.
If your mom has a very unrealistic impression of her current needs, then she may not be capable of making a decision about her shelter needs. If she’s not capable, her substitute decision maker would need to decide for her (usually a POA but could also be a relative in some jurisdictions if POA hasn’t been assigned).
I would advocate for the staff to determine capacity and and help plan for a discharge to a place with the right kind of help. A consultation with a Geriatrician or Geriatric Psychiatrist could also help.
Heidi mcnall says
Hello my mother recently had a stroke (2 months ago! She is only 71! From the moment I found her her cognitive level has been spot on however when I moved her to the rehab center I was trying to get the doctor to do a cognitive test so that I could get a power of attorney to help with her affairs however he is one doctor of 14 facilities and he came in an afternoon after she had had a seizure and I don’t think she was even able to really be woken from her sleep so she said she was scared of the stairs he said she’s noncognitive because there’s no stairs there I said there’s three flights of stairs at the house that she lives with me in. I have yet to see the doctor in 4 1/2 weeks that she’s been there I can’t get anybody to help me and I can’t get anybody to come in to do a power of attorney she has been cognitive that doctor did not talk to any of the PT no nurses no staff or anything of anyone that has dealt with her on a regular daily basis I cannot get him to contact me and I am stuck because my mom‘s Medicare ran out on May 10 it is now the 17th and I can’t do anything about taking her home or helping to get care for home because I don’t have access to the finances my sister and brother are both in line and wanting me to have the power of attorney I’m willing to let us all be power of attorney but I’m just running into Roblox and I don’t know if there’s somebody outside source that I can request to come in there they won’t let anybody else in the facility that’s medical staff which is just seems really odd to me ! I spoke with the PA and he said only the Dr can make that call! I don’t want her to wind up with tons of bills because I can’t get anything moving ? Please help
Nicole Didyk, MD says
I’m sorry about your mother’s stroke and glad she’s in rehab now.
It sounds like your mother was found incompetent to name a Power of Attorney by a physician, and you’re not sure that the assessment was done fairly.
I’m sure it varies by jurisdiction but in most cases, an independent capacity assessor, or even the lawyer who is drawing up the POA, can assess the person’s capacity. It sounds like the communication with the facility is not great.
I wonder if a social worker could advocate for your mother to get a re-evaluation of her capacity, in order for her bills to continue to be paid while she’s in hospital. If the facility has a social worker, I would ask to speak to them and explain the situation. Hope it works out.
KH says
I have lived with my elderly father for the last 5+ years once he started forgetting. He thinks that everything is going to be fine and refuses to deal with issues. Our dog just died because he thought she was fine after I had been asking him for 9 months to take her to a vet. He refuses to get his vehicles fixed and thinks that the cars don’t need to be inspected so they aren’t. He keeps saying “It’s my dog” “It’s my car”.
What can I and should I do? All I want do is take care of things before they become an issue but I’m being stopped.
Nicole Didyk, MD says
If this is a change in behaviour for your father, it could well be a sign of dementia or another serious medical issue. I made a YouTube video about dementia and related memory changes here: https://youtu.be/NihdRkQBITs Dr. K also has a great article about dementia diagnosis: https://betterhealthwhileaging.net/how-to-diagnose-dementia-the-basics/
Getting some clarity about a diagnosis is a good longer term goal, but in the meantime it’s vital to communicate effectively with your dad to figure out the next steps in helping him. Dr. K has recently published a book called: “When Your Aging Parent Needs Help: a geriatrician’s step-by-step guide to memory loss, resistance, safety worries, and more”. This is a practical guide to how to start helping an aging parent, even when you don’t know where to start. You can learn more here. The book can help you to set small goals and make progress towards helping your parent.