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.
Lizzy says
My father is at the end stage of life with multiple myeloma. I have found he has dementia and delirium. The hospital did a test on him and he failed to hold capacity. My dad escaped hospital and has been in and out all the time now but will not take any more test. The hospital has failed and prolonged this and now has sent a letter to say that the hospital is looking after him and he hold capacity. I hold power of attorney once the dr signs him off. He is behind on bills and cannot take care of himself let alone drive or make decisions. He is on a high dose of medication and has been for years and years.
Leslie Kernisan, MD MPH says
This sounds like a difficult situation. If your father is unwell and confused, he may well lack the capacity to make his medical decisions or even other decisions. You may want to persist in bringing this up with the hospital. Unfortunately, when there is a difference of opinion between a family and a hospital, it’s sometimes necessary to seek legal counsel. You may also want to look into what are the laws regarding capacity in your area; in the US they are state-specific. Adult protective services would be another possibility.
Last but not least, an area on aging or other non-profit may be able to give you advice re your options. Your father’s situation is difficult but unfortunately not unusual. Good luck!
Rochel says
I have a situation where the neuro-psychologist says the POA for my mom’s health is invalid because the doctor said that my mom did not have capacity of knowing what she signed. Here is some history of events up to that point. In June 2017 my half sister took my mom for several medical examinations. We (my biological siblings) found out about them through my mom. Once we found out, we asked my mom if she wants to create a will, Durable POA and living trust. She said yes, and those were drawn up, but not signed in June 2017. We thought we were waiting for affidavit of death for my Dad and the Deed of Property into the Living Trust before my mom could sign it. My dad bought the current home my mom lives in with my mom when they were married. They divorced and my Dad passed away. The Document Preparer was calling my mom since June 2017, but not able to leave a voicemail and a few times got a hold of her. My mom said she would ask her grand daughter to take her or her daughter, my half sister, to the office to sign it. That never happened. A few times I called them and no response back, despite the fact that I’m the Primary Executor and POA on it. In January 9, I took my mom in to sign it. Between June 2017 and January 9, 2018, my mom has undergone a few memory tests. I called the social worker, who initially worked with my half sister. I informed her that my half sister did not inform the rest of my mom’s kids of what’s been going on, instead we learned of it through my mom when she told us that she was going for an annual checkup. I told the social worker I have the Durable POA and she could talk to me. The social worker told me to fax in the POA so the doctor can see if it is valid. I called back 4 days later, and the social worker said the doctor who conducted the memory test said the POA was not valid, yet did not say based on what and when. It is very frustrating, because my mom was quite aware of who she wanted to handle her affairs at the time of signing the documents and still is. The doctor has not given us any official document saying my mom is not incapacity of making decisions and signing legal documents. We are supposed to meet with the doctor in a week, and what questions should I ask? I am trying to figure out if I need to seek conservatorship. We ( my mom and her kids) live in California, so not sure what the law is on determining when someone is not in capacity of making legal decisions, who is that legally determined by; and is that person responsible to inform all the children of the parent prior to the parent getting to that state?
Leslie Kernisan, MD MPH says
Hm, it does sound like a tough situation. Capacity issues are generally determined by state law, so to get definitive answers you may need to consult with an elderlaw attorney in your state.
But to respond to some of your questions based on the general principles as I understand them:
– A person does have to have capacity at the time of signing a legal document, for the document to be valid. If a document is drawn up but then signed six months later, what matters is did the person have capacity at the time of signing.
– As far as I know, if you are the designated POA on a document that has been drawn up but not yet signed, you don’t have any legal rights.
– Most states, including California, require separate POA documents for health versus for legal affairs. Is it possible that you were told the POA is not right because you sent in a general POA instead of the durable POA for health?
– I’m not aware of any requirement to notify all of a living person’s children, when legal documents are being signed.
– I do think it’s good to notify social workers, clinicians, and others if there have been issues between different siblings, because it’s useful for us as clinicians to be aware of family dynamics. That said, we ultimately decide what to reveal to family based on the patient’s preferences, existing legal documentation, and other factors. HIPAA does give clinicians a fair bit of leeway, you can learn more here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information
– Doctors do not routinely provide families with an “official document” saying a patient no longer has capacity to make legal decisions. Basically, doctors will usually only provide a document or statement on request. I’m not sure that we are required to provide such statements to family, although clinicians often do, especially if they understand how the statement will be used. (In court? To satisfy the requirements of a POA document or trust?) We do of course have to provide statements to the court or to Adult Protective Services, when it’s requested.
Since you say that your mom had some memory testing done between last June and January, it sounds like there is reason to wonder if she had the capacity to sign documents this past January. Now, even if she’s having memory problems and even if she’s been diagnosed with dementia, that should not be used to automatically disqualify her from signing documents, because she still might be able to understand the document and options well enough to do so.
However, if there have been memory concerns, before you get a legal document signed, it’s a good idea to get at least some type of written statement from a doctor or other qualified professional, providing an opinion on whether the person appears to have the capacity to make the decision in question. If nothing else, it could be brought up during a medical visit and the doctor’s impression (or what he/she did to address the question) can be documented in the medical chart.
In terms of what you can ask the doctor during the visit, you might ask:
– what does the doctor see as the problem with the POA document?
– If the doctor thinks your mother was lacking capacity at the time of signing: what led the doctor to that conclusion? Did the doctor or someone else ask your mother questions specifically about her understanding of the document and what she was signing?
– If your mother has no valid POA but is losing capacity, who is the doctor planning on turning to, as a medical surrogate? (most states allow doctors to default to a next-of-kin if there is no legally designated healthcare proxy)
If you remain stuck, you may have to look for legal assistance. You can try calling your local Area Agency on Aging (find it via eldercare.gov) and ask about any free or low-cost resources for families in your situation.
You can also try looking things up in the California legal code, for instance here is the section on legal mental incapacity.
Hope this helps, good luck!
Lisa says
My 87 yr old grandfather has given away $500k to a crook and is now sending text messages to a 30 yr old who is using him for money. She is trying to alienate him from the people that love him. I’m scared for him but he is having a type of sexual relationship and the doctor told me that’s not possible with his health. He lost my grandmother 10 yrs ago and he hasn’t been the same since. Advice? I’m on his money accounts (bank ira etc) and have a power of attorney if he becomes incapacitated. I am also executor on his will. I have mentioned these behaviors to his doctor but don’t feel I’m taken seriously. HELP
Leslie Kernisan, MD MPH says
Yikes, all that does sound very concerning. He does sound like he might be lacking capacity for some of his financial decision-making at a minimum, as giving away all that money doesn’t sound like it’s in his best interest.
Here are few ideas that might help:
– You should probably persist in trying to get help from your grandfather’s doctor. It might help to specify that you think your grandfather is being financially abused. Ask for the doctor to help assess your grandfather’s mental capacities.
– A POA document usually specifies whether the agent can act right away or only after a person has been deemed incapacitated. You should start working on gathering that evidence. Exactly what is needed depends on the purpose at hand; the POA document itself should specify the criteria for being incapacitated. Whereas if you want the bank to stop letting your grandfather withdraw money, they would have to tell you what their requirements would be. (It might be easier to hide the checkbook and ATM cards while you try to sort things out.)
– You can call Adult Protective Services if you think your grandfather is being financially taken advantage of. You can also potentially contact the people in touch with your grandfather and warn them that you are his POA and that you think their activity qualifies as elder abuse. State laws govern the criteria for abuse and the penalties. Obviously it’s even more effective if a qualified elder care attorney contacts the likely abusers.
– Your local Area Agency on Aging (find them through eldercare.gov) may be able to direct you to other resources that can help, including low-cost legal services if any are available in your area. You can also try the Family Caregiver Alliance Navigator resource service.
– For moral support, try an online support group. There is a very active caregiver forum at AgingCare.com, with people who have been in your situation. (There are also occasionally experts who weigh in.)
Good luck and keep at it. It’s a difficult situation but it sounds like he really needs your help. He probably doesn’t know it, but he is VERY lucky to have you looking out for him.
Robyn Cosgrove says
Hello Dr Leslie,
I have recently been diagnosed with narrowing of the small blood vessels in my brain. I have suffered from Lupus for many years and have been on Voltaren for many years for pain. Should I continue this, as I have read that this may affect this disease further? I take blood pressure reduction tablets and also at times of great pain – Tramel? I am currently using natural therapies also for pain reduction.
Thank you.
Leslie Kernisan, MD MPH says
It is not for me to say whether you should continue Voltaren or not; this would require a one-on-one medical encounter, and even then, I’m not a rheumatologist and probably don’t have the expertise to advise you regarding lupus treatment.
Lupus is a serious chronic illness. Whether or not you should continue a given therapy depends on what the pros and cons appear to be for you, and on what the pros and cons are of the available alternatives.
I will say that diclofenac (Voltaren) is a non-steroidal anti-inflammatory drug (NSAID), and that in geriatrics we try to minimize NSAIDs because they have risks for older adults. However, for some people, the likely benefits still outweigh the risks, and you might be one of those people.
I would recommend you discuss your medication options with your rheumatologist. (Most people with lupus are seeing a rheumatologist.) You should also be sure to bring up your pain, so that your doctors can help you find better ways to manage it. There are many medically proven non-drug therapies available to help people with pain. Good luck!
Wendy says
Because of the current mess I’m dealing with regarding my parents, I would like to plan ahead and make things as simple as possible in the future for my children should I get to a point where they don’t feel I have the capacity to make sensible and safe decisions for myself.
My son is the successor trustee of my trust, and I’m thinking I should do a springing DPOA so that he can remove me as trustee in the future should I become incapacitated. I don’t want my children to have to rely on medical providers to make the capacity determination.
Is there a document, or can I incorporate it in the DPOA, where I can appoint my daughter as my agent with the authority to make that determination if and when necessary? I constantly see where it’s stated that determination SHOULD be made by medical providers, but I can’t find whether that is a legal requirement.
Any thoughts?
Thank you.
Leslie Kernisan, MD MPH says
Thanks for raising this interesting question.
I don’t have much experience with trusts, but my understanding is that when a trust is created, the documents usually specify the conditions under which a trustee can be considered incapacitated. So I am not sure if you can achieve your goals with just a DPOA form, you may well need to go have your trust documents amended.
In terms of who determines your incapacity and what’s legally required: I believe the rules are usually set by state law. So an attorney in your state would be able to advise you as to what is legally required.
Now is it a good idea to let your family decide if you’re incapacitated without input from medical professionals? Honestly, I am not sure. So far I have identified many common problems that families run into, but identifying a solution that works for most is trickier.
I really think you will have to consult with an attorney to sort this out. An elderlaw attorney may have more relevant experience than one who does trusts and estates. Good luck!
Rhonda Lee Dowling says
I have a ? Could a POA of finances cuz..trust isn’t in acted fully till his death…(poa estate), whose my brother in-law & my sister who is one of people named in trust, I’m the other & POA HC & BSN( not active) go to ATT trustee n get a24 hr competency/ a doctor (they said he wanted to be moved 2 different place with cheaper assisted living & it states in will he’s to have his wishes meant)…not only move with out my knowledge but could they also have new trust drawn up eliminating me without My knowledge in I’m then reinstated as POAHC?
I ask because I live in town now 2 hours away…& had been caring for my terminally ill brother who moved in with me. so focus was off of our step father even though I had been running out there before he was moved. I didn’t like what they did & told director so…now he is having hospice come in & my sister quit her job & our step dad said he’d pay for her insurance so she could come & help car for him @ assisted living home! I’m POA but now I’m not even being told what’s going on. I need advice ASAP & don’t have any funds to use towards lawyer if need be. I will however get his full med chart ASAP & see what reason they gave doctor for move.His former place of living I may investigate & the D.O.N. there as well! I pray I am just paranoid & was going to just leave it be praying for God to lead me in right direction. so…better to be prepared just in case I need to seek legal action.
Sincerely,
Rhondalee
P.S.
I’m concerned do to this is so far removed from his wishes & the step dad I know would never of done nor been manipulated & he doesn’t have his logical aspect of his thoughts processes for sometime now since & just before competency hearing 1st took place.
Leslie Kernisan, MD MPH says
Sorry to hear of your situation, it does sound complicated and also frustrating for you.
Power of attorney documents all expire when a person dies, so something fully enacted as death sounds more like successor trustee or executor of estate to me.
I really can’t say whether what is going on is “allowed” or not. I think it partly depends on the legal documents involved, and also on the laws of the state where your step-father resides. If you are concerned about the expense of an attorney, I would recommend contacting your local Area Agency on Aging and asking if there are any low-cost legal services available in your area. If you are concerned about exploitation or manipulation of your step-father, you could also consider contacting Adult Protective Services.
Good luck!
Laura says
Thank you for helping us navigate very unfamiliar waters. My dad has Parkinson’s disease and some congnitive/dementia issues. My parents and my sister and I have legally all made end of life, financial and medical decisions together as a family serveral years before Dad was in this state. It is very difficult to get others to understand DNR or what we like to say, let natural death occur. He is under palliative care now. Yet even those assisting in the caregiving, nurses, doctors, Chaplin’s, still push for further measures than has been established. They ask Dad questions about things he decided years ago -legally – and try to get him to change his mind. At this point is not have the capacity to understand implications of decisions. How do we get these professionals to back off and honor what was decided by my dad when he was able to clearly decide what he wanted?
Leslie Kernisan, MD MPH says
This is too bad, although not surprising to me. People are usually well-intentioned, but they may not understand what your family has already decided, or the details of your dad’s mental capacities, or even how to pursue a comfort-focused medical approach when a person is not yet on hospice.
Generally what you will have to do is be persistent and proactive about communicating with them. It’s good to talk to people in person, in part because that’s when it’s easiest to learn more about how they see the situation.
If you understand this, you can often be more effective in correcting their misunderstandings. But after conversations, I would recommend summarizing the key points to them in writing, e.g. “We discussed the fact that my father previously indicated XXX, that he said he wanted to leave all decision-making to his children once he was impaired, and that this is legally documented, and we agreed that hence the caregivers will no longer bring up XXX with him, as this is distressing/confusing to him.” And then follow-up and insist if things are still not going according to your father and family’s requests.
Another approach you can try is to recruit someone else to back you up, such as your father’s doctor or anyone else whose say-so is likely to carry weight with the providers that you are having trouble with.
Also consider expressing your concerns in writing to the leadership of the involved agency or facility, if there is one.
It is not fair, but family caregivers generally have to spend a lot of time double-checking things and finding ways to get others to do what they should be doing.
Good luck!
Sher says
The problem that we have run into is that one doctor will say one thing and the other will say another. With dementia, they can have a good day where they seem almost normal and then the next day they can’t even remember what year it is and that their siblings have all passed away. I thought one parent did horrible on a memory test that the doctor gave, but noticed that the doctor wrote that they were fully competent!
I have had to make some hard decisions ,but most people who know parents said that I did exactly the right thing. This article helps – and it backs up the decisions that I had to make.
Leslie Kernisan, MD MPH says
Thanks for this comment. Yes, I have seen families run into this problem and I think it’s not uncommon. I think this happens for a few reasons:
– Many doctors have not had even rudimentary training in evaluating capacity. I recall being taught a little about determining whether a patient had capacity to consent to medical treatment or make a medical decision, but nothing about all these other capacity issues.
– Most doctors have not been instructed on how to write a capacity assessment. They are probably writing them based on others that they have seen, which are often very cursory.
For instance, if a family or other interested party asks the doctor to write about capacity or competence, the doctor really should ask “to do what?” But many of them do not do this.
You sound like you have found your way through this, but for others, here are some suggestions on what to do:
– If a parent seems to do poorly on a memory test – or if you report a lot of concerns — but the doctor says he/she is “competent,” ask the doctor to clarify their reasoning. They should be able to do this verbally with you, and also in writing. Bring up any additional information you have regarding the person’s insight and judgment.
– If a doctor provides you with a capacity assessment that seems incomplete or incorrect, consider getting a second opinion.
Jamie says
My dad is almost 90 and was found totally incapacitated by 3 court appointed assessors who gave him the MOCA test and tried to chat with him. I find this outrageous. He wasn’t tested by any neurologist or specialist. He can perform all ADL and is only having short term memory loss. My sister wanted him found incapacitated so he can’t change his will I believe. What should I do ??? My mom and I both believe he should be properly tested and have this decision overturned.
Nicole Didyk, MD says
That sounds like a very difficult situation, and I wish I could give you more specific advice, but not being a lawyer, I really can’t.
I can share that in my experience, court- or government-appointed assessors follow a very standardized protocol around a pretty narrow subject area when doing an assessment, whereby a physician assesses capacity in the context of the person’s overall health and diagnoses. Usually, when a person seeks to change or make a will, the lawyer who is making the will is usually the one to assess capacity. Here is an answer that Dr. K provided to a similar question.
In addition, at least in Canada, where I practice, it’s pretty difficult to have a person declared globally incapable. So, for example, a person could be capable of deciding to have surgery or not, but not capable of assigning a Power of Attorney for finance and property. Testamentary capacity (ability to make a will) is considered to require a pretty high level of awareness and mental skill.
As well, if there have been 3 separate capacity assessments and they have all had the same outcome, I suspect it would be hard to have this overturned without getting a lawyer involved.
In the short term, trying to initiate a dialogue with your father and his primary care provider might be a good place to start.
J J says
My 78-year-old mother has ever-increasing anxiety that is leading her to make irrational decisions. For example, when a car insurance payment missed a deadline because of late mailing and a notice was received that her insurance had been canceled, rather than following through with the insurance company, she immediately ran out and signed up with a local insurance broker that charged her enormous (but still legal) fees. The first insurance company reinstated her original policy within 24 hours and she canceled the new policy but was out hundreds of dollars due to an anxious irrational panic response. This is not the only example. She has 3 adult children in their 50s who are willing to help with anything but she refuses to tell us what’s going on until things go very wrong (above example) and it’s too late for any of us to step in. She’s not incompetent or obviously incapacitated but her anxiety leading to irrational decisions is alarming, expensive, and I fear that she is vulnerable to being taken advantage of by unscrupulous individuals. She lives alone 3+ hours away from her nearest relative and has an active social life, but her friends are older than she is and have there own issues. What can we do? Wait until something really bad happens?
Leslie Kernisan, MD MPH says
This is a tough situation, albeit not uncommon.
Increasing anxiety and impulsive and/or worrisome financial actions are often red flags. The ideal would be for her to see a clinician and have her memory and thinking evaluated. Although you don’t feel she’s obviously incapacitated, it’s possible that a good evaluation would reveal objective signs of impairment. A good evaluation will also help your mom and your family identify any underlying causes or factors that might be worsening her anxiety and/or her financial management abilities.
This article explains what a good evaluation should include: How We Diagnose Dementia.
(Note that being evaluated for possible dementia does not mean your mom HAS dementia; this article is really about how we evaluate cognitive concerns.)
The problem is that when families notice an older person becoming more anxious and/or erratic, bringing up the possibility of a cognitive evaluation often makes the older person even MORE anxious. Many even will refuse to get evaluated.
There is no easy answer in this case. Good empathic communication is key, and I offer some ideas in the article 4 Things to Do When an Older Person Resists Help.
Otherwise, families basically have to figure out what works in their situation. Sometimes it helps to bring up the concerns to the doctor; sometimes the doctor is able to persuade the person to come in. It can also help to work with a geriatric care manager or other person with expertise negotiating these types of situations.
Also, even if an evaluation of your mother finds that she’s cognitively “normal” for her age, research shows that even normal cognitive aging often causes a decline in financial abilities. Older adults are often reluctant to involve their children in their finances, but it’s probably a good idea for them to do so, as this can protect them from scams and avoidable financial expenses. It also puts a family in a better position to take over, in the event of a sudden illness or other medical emergency. More on this issue is here:
5 Things to Know about Aging & Financial Decline
From what you describe, your mother has already been refusing your help. But that doesn’t mean that she couldn’t be persuaded, if you found more constructive ways to bring up your concerns and address her own concerns.
Can you figure this out on your own, at a distance? Possibly, but in practice, most families benefit from having an expert mediate these kinds of conversations with older parents. So if you can, I would suggest you see if you can get someone to help you with these difficult conversations. It often costs money, but it can be a worthwhile investment, especially if it puts you in a position to prevent additional financial losses, or if it helps your mother get a diagnosis that she needs.
Good luck and keep persisting.
J J says
Thank you for your helpful response, much appreciated!
Deborah Bier says
I adore reading your blog! And what a meaty subject you’re bitten off here. Very helpfully done!
Leslie Kernisan, MD MPH says
thank you!
Patricia Butt says
In February I bought a trailer from an 81 year old man who wanted to sell and move he knew what he wanted and knew what he was doing and I’m 63 years old and homeless so it was helping ubotb of us get what we wanted to do. Now 3 months later after my friend borrowed the money to pay the back taxes and we bought a bond because we couldn’t find his son who was on title as survivorship in case his dad died . But now his son who I never met of hasn’t come around his dad in over 3 years wants to claim his dad incompetent because he doesn’t like his decisions. What do I do now ?
?
Leslie Kernisan, MD MPH says
Sorry to hear of your situation, that does sound tricky. If you think this older man did know what he was doing when he sold his trailer to you, then I would recommend trying to gather up any evidence you have supporting this. This might include emails, text messages, and also statements from other people who knew him or perhaps heard him discussing these plans.
I am not an attorney, but I think if the transaction has been completed and his son wants to contest it, his son will need to hire an attorney and file some kind of claim in court. His son telling you he thinks his father didn’t have capacity to sell the trailer does not, in of itself, invalidate the transaction, as far as I know.
You may also want to try to find out what are the laws in your state, regarding these kinds of transactions and what can be done when family (or others) believe an older person engaged in a transaction that they didn’t actually understand or have capacity to agree to. If you are low in income, I recommend contacting your Area Agency on Aging (search at eldercare.gov for your local office) to ask about low cost legal aid services, to help you look into this. Good luck!
Barbara Chalsma says
I am 80 and have just e-mailed “Incompetence & Losing Capacity: Answers to 7 FAQs” to my four adult children. Now all they have to do is consult your article when they worry that I might be too old to drive or live alone! (I am keeping it for myself, too.)
All your pieces are terrific. Thank you for your decision to create this blog.
Leslie Kernisan, MD MPH says
I’m so glad you find this useful! thank you for this comment.
Robin Schares says
My sister was diagnosed with Alzheimer’s. My parents died unexpectedly 2 weeks apart. After finding out the inheritance her daughter took her to the court house to get power of attorney. She has been married for 35 years and has a house. Her daughter told myself and her husband that we can’t take her to the house she lived in for years. Is there something her husband can do?
Nicole Didyk, MD says
That sounds like a heartbreaking situation, Robin and I wish I had the answers for you. It sounds like a lawyer could give you the best advice here.
If the person making out the documents giving POA to your aunt found that your mom was capable, even though she had an Alzheimer’s diagnosis, it might be hard to challenge that. If your mom is able to understand what a POA is, and why she would choose her husband vs her sister, then getting a lawyer to help her change her POA might be possible.
I’m so sorry for your losses and wish you the best of luck.
elaine stratos says
What to do if an emergency has occurred and patient has brain absesses and needs approval of next of kin. This was the case with myself,sister to 69 year old male who never recovers capacity. After my approval of operation,very serious,without Durable Power of attorney,advance directive,or any document other than that I am the only heir. Palliative care was initiated after patient never regained consciousness
after initial operation.