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.
Cora Wade says
My 89 y/o widowed father-in-law has his granddaughter as his POA. It was my understanding she was his financial POA to take care of his bills and such after my mother-in-law passed. He has since been placed in assistant living by her since he could no longer live by himself with the onset of dementia and failing health.
We were notified that she was using a company called OpenDoor to sell his house with them paying off the reverse mortgage and profiting $100k for his care. The closing would be the following week, Tuesday the 18th. He has since fallen gravely ill last night and with a DNR are calling the family in.
My question (I’m sorry it took so long to get to it) is, If he is still alive at the closing of his house, does the profits go into a trust to pay for his care? If not a trust does it go to the granddaughter who has POA? If so, and there is money left after his passing, does it go to his estate to be part of his Will? I assume if he does pass before the closing the house goes to probate to be handled by the executor of the Will.
This is all happening quite quickly and concerns my husband and myself. Any help or advice you can give would be very much appreciated.
Thank you
Leslie Kernisan, MD MPH says
Sorry to hear of your situation. Unfortunately, it’s beyond my expertise, I’m not sure what happens to the profits of the closing if he is still alive. It may depend on the laws of the state in which he resides, as the authority of POAs is a state issue. It’s possible that the money would be delivered to his POA, who then would get to decide where to deposit it and/or what to do with it. Once a person dies, all assets become part of the estate and are handled per the will, probate, etc.
I would recommend you consult with an elderlaw attorney in your father-in-law’s state. Good luck!
Darren de Fluiter says
My wife is 50 and is 10 years post a lifetime dose of WBRT after brain surgery to remove a tumor. Pathology determined it was metastatic melanoma (stage IV). Today after a successful treatment as part of a drug trial she is cancer free for the last 6 years.
Now she has cerebral, micro vascular disease and global atrophy. Cognitive neurological assessment shows she is impaired in all areas except long term memory. Is there anything we can do for her?
Leslie Kernisan, MD MPH says
Sorry to hear of your wife’s condition. I’m afraid I’m not really sure what you’re referring to, in terms of what can be done. Your wife’s cognitive impairment doesn’t really fall into geriatrics, because she’s younger and it sounds like it’s related to cancer treatment. A health provider with more experience treating such people would be better suited to advising you, and have a better sense of whether she’s likely to improve, etc. Good luck!
Jennifer Staerker says
I found this article at the right time, as I’m struggling with capacity/competency. I have a Durable POA and HealthCare Surrogate for my mother- 74. We have watched her memory slip since 2016 (MRI confirmed brain abnormality), to which she refused to have any follow up neuro testing and banned the family from speaking to her doctors. It was a run in with the neighbor and a temporary restraining order in 2018 that forced our hand in getting her neuro tested last year. She was officially diagnosed with major cognitive disorder. The Dr was concerned about her getting lost (she admitted to getting lost out of her local radius) reported her to the DMV and her driving cognitive testing showed that she shouldn’t be driving….so license was revoked.
She lives in Florida and I’m in NY. She is fighting the diagnosis and feels like she’s been railroaded. She blames me for her situation and is so hateful to me! I know its the “brain illness” and not her. But I’m having difficulty, as she has told her doctors not to speak with me and while they have a copy of the POA…she is VERBALLY overriding it She is socially isolated with no friends or family locally, but does have someone come to the house 2x a week to drive her on errands. She is not taking her medication correctly (if at all), she’s not paying bills on time, taxes and constantly having late fees or disconnection notices. She is more fixated on losing her license, than the fact that she was diagnosed with Major Cognitive Decline…total lack of insight about how they relate.
Neighbors have called Adult Protective Services 2x, but after a 20 min visit they never seem to be concerned cause the house is clean and there is food in the fridge. She over feeds her dog, cause she forgets that she already fed it. Then she gets upset and wants to take it to the vet thinking it’s ill cause it won’t eat…it’s not hungry!
I’m just at a loss of how to walk the tightrope of her feelings vs her wellbeing physically and financially. I’ve been trying to take over financial stress and convince her to move to Texas to be closer to family, but she refuses. It’s so hard to help the unwilling/ungrateful, when I have this worthless piece of paper- Durable POA . If Dr have declared her Major Cognitive disorder…but still won’t speak with me, how do I get capacity/competency declared? Seems the system is one big failure!
Leslie Kernisan, MD MPH says
Sorry to hear of your situation. It’s actually not uncommon, and yes, it is often really difficult to figure out how to intervene when a person has developed cognitive impairment. A POA helps but there are still often lots of hurdles to clear, as you are discovering. If she really is impaired then technically she should no longer be allowed to override you, but many individuals and institutions might still allow her to do so, unless there is some kind of “official” declaration that she can’t make certain decisions anymore.
What constitutes this “official” declaration seems to vary depending on where people are and which institutions are involved. Some will accept a doctor’s written declaration that a person has lost capacity; in other places it seems necessary to go to court. Most of the time the older person is impaired but aware enough to realize they are losing control and they are often very upset about it.
I would recommend connecting with others trying to help aging parents, and also talking to an eldercare attorney in your mother’s state. A geriatric care manager in her area is also likely to be helpful, they will have helped families through similar situations. Good luck and hang in there! Even though she’s mad at you, she almost certainly does need your help and she is lucky to have you trying to sort this out.
Kim says
This is the best article I’ve found in my research. Easy to read and understand-including the many comments and situations described. Thank you all for this information.
My mom is 75 and generally physically healthy and financially healthy. She has lived alone and thrived for 30+ years. After retirement-she became acutely depressed. Ultimately admitted to psychiatric hospital and resolved at one year with meds. Subsequently, my 40 y/o brother was diagnosed with cancer. She basically lived with his family and supported them well for 2 years. When his cancer returned in March of 2017 she decompensated acutely again. She was still under care of psychiatrist who could “not get your mom back” despite trying every drug I’ve heard of. (I am a physician). My brother passed in 9/17. My mother refused all efforts and offers for help with counseling, griefcare, church, ECT therapy, hospitalization again, moving in with me, moving to care facility. She has stopped seeing psychiatrist last fall because my mom literally refuses EVERYTHING. I’m making her see her PCP for the 3rd time tomorrow. He was able to get her to take 2 more meds on threat of taking keys (3 fender benders). The meds are not helping. Mom sleeps/lays in bed all day and night. She refuses friends. She doesn’t bathe regularly, rarely washes her hair. Doesn’t clean house. Eats 2 corn dogs every day and sometimes ice cream or pizza for dinner. Refuses to shop or be taken to buy food. Will not talk at all. Answers only “I don’t know” or “no” to most questions. I visit 2x -3x weekly-my youngest brother has visited occasionally and keeps her house in check maintanance-wise.
When we voice concern she just shrugs her shoulders. I believe she’s stuck in her grief and depression but when I ask her about this she says “how do you know I haven’t just given up?” She denies suicidal thoughts. She NEVER initiates contact with her friends, 2 kids, 8 grandkids all who love her. She’s completely isolated herself.
My brother and I have had many conversations with her about our concern. We established that she trusts us. Yet she absolutely refuses to discuss much less sign legal POA. We have explained the consequences and are concerned she could become physically ill and has not assigned medical POA either. She just says we will talk about it when she feels better-it’s been 2 YEARS.
My question is simply-what’s the next step? Im thinking I should document all of this in written form to her doctor. But not sure if it’s time to seek incapacity framework legally. She keeps saying this is how she wants to be.
Thank you for any insight you may be willing to offer.
Kim
PS just saw the QuickStart guide below so I’ll check that out.
Leslie Kernisan, MD MPH says
Glad if you found the article helpful but wow, sorry to hear about your mother, it sounds like an exceptionally difficult situation.
In general it’s often a good idea to document things in writing and send to a parent’s doctor; they need to know about important health issues and also it is part of documenting that all other alternatives were tried and failed, if you do decide to consider guardianship or another legal method of obtaining the right to intervene. The main reason to perhaps not write to the doctor is if the older adult has expressed forbidden it or if you think they would really be upset…and even then, the likely benefits of writing to the doctor often outweigh the risk of damage to the relationship, but it is something to consider.
It sounds like she might meet criteria for self-neglect. There are usually no easy next steps, but generally you do want to get the health providers involved (as you are doing), you can consider calling APS, and then depending on the situation, yes, you may want to consider taking legal action that would allow you intervene. You will need to think through the benefits and burdens of going with that versus the alternatives. It can help to clarify just what might be possible if you do get a legal determination of incapacity. As you probably know, even when older adults are under guardianship, it can still be extremely hard to get an older person to comply with the guardian’s decision and in many states, there are special considerations for psychiatric treatments. (Her psychiatrist would presumably be familiar with them?)
We have a podcast episode on self-neglect, which includes links to resources:
066 – Interview: Addressing Potential Self-Neglect in Older Adults
Good luck!
Diane Strang says
I want to thank you for this article or blog as it may be. I live in Canada and recognize much of the advice is USA specific, (other than it also pertains to Canada with provincial legislation type of advise.
I’m in my 50’s. My mother passed away from cancer last year. While I fully recognized that my Mom was protecting my father as we, “chatted” daily on-line or when she got more ill in person I saw his deterioration. I understand after 59 years of marriage it is hard to see with clarity the one and only husband you’ve had. I tried to say to my father that she was my only mother too for 53 years. (That didn’t help his loss.)
The short of it, he has been in and out of hospital for many of the reasons stated by followers and yourself. He was in a significant car accident, “looking for my mother” on a HWY that was no where close to where they ever lived. He went down one way streets the wrong way twice in 15 minutes when I was in the car with him. (That was the last time I was in a car with him and yes I had his driver’s license revoked.)
Today I received notification from the hospital that the geriatric psychiatrist has deemed him incompetent as he does not recognize the consequences of any of his actions. He failed every test that the OT provided to him prior to the psychiatric assessment.
I am incredibly sad. Parents watch their children growing up with joy. This is the reverse of that. It is hard to breathe when you realize you are responsible for? Everything.
What I do want to say to anyone that reads this? Please get the legalities and finances in order, if you possibly can, prior to it going, “pear shaped”. It took me over a month of explaining to my father daily what a POA meant (even though he had one for my brother). I did get most of the finances in order before today, a few are outstanding and indeed I’m not sure if pressed they would have stood up even though they represented a similar if not identical method of dealing with previous issues.
No one wants to deal with these issues. I’m asking any that still have loved ones in the picture that are competent to have that difficult conversation sooner than later. You never know when later is too late.
*
Leslie Kernisan, MD MPH says
Thank you for sharing your story and this comment.
I agree with you, no one wants to deal with these issues but when they aren’t dealt with early, it can cause a lot of problems down the line.
I’m glad you find the site helpful and appreciate your taking the time to let me know that.
Sonya Warren says
My mother is 83 yrs old and owns a trailer park. She is not able to walk well, see well nor remember very well. She thinks people are breaking in her home and stealing her food. She has her tenants read her meters, take her trash out and pick her up off the floor daily. Some tenants havent paid rent in 4 months because they know she cant do anything. I buy her groceries, pay her bills and balance her check book. She refuses to leave. How can i get her out of this horrible situation that she is in? She has no power of attorney at this time. I need help.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s situation, it does sound concerning. I would recommend helping her get a cognitive evaluation, as it sounds like something might be wrong with her memory and thinking.
Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check
If her tenants are taking advantage of her, you might also consider contacting your local Adult Protective Services (APS) office. Your local Area Agency on Aging should be able to put you in touch with APS, and can also advise as to other local resources that might be available to assist with your situation. Good luck!
sarah hancock says
My husband had a stroke 5 years ago which resulted in aphasia, and non-use of his right hand. He is able to walk with a cane. He is able to dress himself, bathe himself with assist., is continent, can print his name with his left hand, follow commands, and understands what people say to him, but his speech is not understandable other than limited words he can say. Can he be considered to be incompetent? He can recognize friends and family members but can’t say their names. He can show me directions when I am driving by pointing i.e. go straight, turn, etc. and knows when I ask him how to I get to person’s house, store, etc. can point out directions to get there.
Leslie Kernisan, MD MPH says
Aphasia and the inability to speak does not mean the person has lost capacity. Capacity is about having the ability to understand a choice at hand. It sounds like your husband does understand things, and with suitable accommodations to help him express himself, he should be able to convey what he understands and what he would choose.
Now, sometimes it is challenging to determine just what a person with aphasia understands, because they cannot communicate as easily with us as someone with normal speech can. But in principle, one should take the extra time necessary to allow them to express themselves.
I would recommend checking with occupational therapy and/or with a stroke rehab specialist, I believe they have particular experience helping people with aphasia express themselves. They may also be able to arrange a specially adapted capacity evaluation, if it seems one is needed. Good luck!
JL says
Great article, but I could not find suggestions when a parent is vehemently fighting against any help.
Symptoms are: mobility limitations (scarcely walk after broken hip), poor financial decisions (not paying insurance or filing tax returns, hoarding assets), risky behavior (hitchhiking when car breaks down), insisting everything is under control ….when it’s careening out of control. There is are assets so she could live with dignity and without predatory debt, but she refuses to liquidate them. She’s so stubborn and angry, she won’t allow help. What’s the key to unlocking the door here?
Leslie Kernisan, MD MPH says
Sorry to hear of your situation. It’s not an uncommon one.
Unfortunately, there is no easy key to unlock the situation. The issues you describe regarding the finances and risky behavior and lack of insight are all concerning for possible cognitive impairment. This would need to be medically evaluated, however many older adults with these problems will then refuse to get evaluated, they are often feeling very defensive and upset and are hence even less likely to go see a doctor at their family’s suggestion.
I have some suggestions on getting help for a resistant parent in the second half of this article: 6 Causes of Paranoia in Aging & What to Do.
Basically, if it’s impossible to find a way to coax the older person into getting assistance and a medical evaluation, then one generally needs to consider calling Adult Protective Services. Some families also start looking into requesting guardianship, especially if there is no durable power of attorney allowing them to step in.
A trained geriatric care manager can often be very helpful in identifying options to manage this type of situation…they do cost money but can save you time and some stress. Good luck!
P.M. says
My aunt, for whom I provide aid, comfort, and company, was taken to the hospital by police after a confused call concerning the theft of her car (it was in her garage!), and was assessed by two doctors as incompetent. I am it total agreement with this, having witnessed significant confusion for at least three months prior, snd some confusion, to a lesser extent, in the few years before. She had a CAT scan too, with a diagnosis of vascular dementia.
Her son is managing her affairs with a non-springing POA.
She is angry and disagrees with the assessment, legal arrangements, and her current residence in assisted living, in addition to the State nullifying her driver’s license due to her medical situation. She consulted a lawyer who said he could not enact any legal measures due to her incompetence. She is doctor-shopping to try to “get her competence back”. Is there any other measures she should take? She feels she is being railroaded, and trusts no one.
Leslie Kernisan, MD MPH says
Sorry that you are facing this difficult situation. Well, it sounds like she is chronically mentally impaired and probably won’t recover the ability to manage her affairs. It’s not uncommon for people like her to have very little insight into their limitations and to ferociously resist the attempts of others to intervene.
Are you asking what measures you can take? As you may know, it generally doesn’t work to try to reason with the person or persuade them. One way to support her is by allowing her to vent all her frustrations and then redirecting her, if possible. She needs to be allowed her emotions. She will benefit from feeling that you are there, even if you can’t do everything she wants you to do (e.g. restore her full autonomy). You might find it helpful to read our article on managing dementia behaviors without medication: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications).
There are also good tips from Family Caregiver Alliance here: Communication (for dementia). Good luck!
anna says
My husband has had dementia since 2011. I am his Agent on his Springing Durable POA done in 2004. It states one physician and I have to show he is incapacitated. I have a letter from his neurologist stating my husband should not be making medical or financial decisions. How do I activate the POA.
Due to my health issues, last month he went to live with his daughter, she does not want him in a facility. She called our lawyer and had my husband change his medical POA over the phone. I was not told. I am scared she may get my husband to get into our joint income bank account and remove money that I use to pay our household expensive. I don’t know what to do. Thank you for your blog.
Leslie Kernisan, MD MPH says
Sorry to hear of your situation. I am not an attorney; the following is my opinion, not legal advice, and I would recommend you run it past a qualified attorney. Here is my understanding of what is relevant to your situation.
A power of attorney document is regulated by state law. So it would be state law and whatever is the document that determine when the agent’s authority becomes active. For instance, in California’s legal code it says:
“(a) In a springing power of attorney, the principal may designate one or more persons who, by a written declaration under penalty of perjury, have the power to determine conclusively that the specified event or contingency has occurred. The principal may designate the attorney-in-fact or another person to perform this function, either alone or jointly with other persons.
(b) A springing power of attorney containing the designation described in subdivision (a) becomes effective when the person or persons designated in the power of attorney execute a written declaration under penalty of perjury that the specified event or contingency has occurred, and any person may act in reliance on the written declaration without liability to the principal or to any other person, regardless of whether the specified event or contingency has actually occurred.” (Section 4129)
This suggests that if your husband has been declared incapacitated, you need to complete a statement saying the event has occurred. (Seems a good idea to include a letter from the neurologist or clinicians as backup, if possible.) You should then be able to submit the POA with the additional documentation, and be allowed to act for your husband.
Now, as far as I know, most states do not have some kind of registry in which one can document that a POA has been “sprung” or that an older adult no longer has authority to manage affairs (unless the older adult has been conserved or had abilities limited by the court).
So even if you have the documentation to act based on a springing POA, keeping banks or other entities from accepting the older person’s directives can be complicated.
In terms of your husband changing his POA due to his daughter’s influence, to change a legal document he would have to have enough mental capacity at the time he made the change. If you think he didn’t have this capacity, you can contest the change. Probably you can start off by writing letters warning his daughter that the change likely isn’t valid, given the opinion of the neurologist. This might be enough to get her to back off. You can also check your state laws as many of them have statutes about financial exploitation or undue influencing of vulnerable elders, and you can warn her if her actions seem questionable.
If you are really concerned or your husband changes his legal documents or finances, and you think this was due to impairment, then you may need to seek legal representation.
You can also try calling your local Area Agency on Aging for advice. This situation is not so unusual, so they may have suggestions as to your local resources for addressing these types of concerns. Good luck!