When to insist and when to accept? Who gets to decide about big decisions like driving, legal and financial matters, medical care, where to live, and more when a loved one has dementia? As a geriatrician (Leslie) and a geriatric psychiatrist (Ken) -- both of us doctors specializing in the care of older adults -- we see families struggling with these questions every day.
Here's the essential dilemma: As an adult, your loved one has been entitled to autonomy, which is the essential right to manage decisions about his or her life. But brain-disordering problems such as Alzheimer's eventually impair the key mental functions needed to exercise autonomy. In particular, dementia eventually affects insight, which is the ability to grasp the nature of a situation, to reason, and to make sound judgments.
Families often quickly understand that a loved one with dementia will need increasing amounts of help to manage the fundamental tasks of adulthood, or IADLs -- things like transportation, household maintenance, grocery shopping and cooking, and finances. But it's harder to understand when, and how, to help a loved one with decisions, especially when you and your older loved one are reaching different conclusions about how to proceed.
Fortunately, medical ethics and geriatric practice offer some guidelines about how to work through difficult decisions with people affected by dementia. Here's a three-step process to help you:
Step 1: Understand that the starting place for a decision isn't what to do; it's whether the person has the capacity to decide in the first place.
Having capacity to make a decision means that a person can understand different courses of action and their consequences. The person must also be able to explain his or her relevant values (such as prioritizing independence over safety) and explain how his or her decision relates to values and to consequences.
For example, if a person wishes to decline high blood pressure medication, he or she should be able to explain an understanding that untreated high blood pressure causes increased risk of stroke and heart attack, and the person should specifically state a willingness to take that risk. The person should also be able to explain personal values that affect the decision, such as a preference to minimize medications. If, however, the explanation the person gives is that the drug is "poison," the rationale for refusing medication can legitimately be considered suspect, and so the person's capacity may need further investigation.
Realize that capacity is task-specific and decision-specific, meaning the person may have capacity to make some decisions but perhaps not other, more complex ones. A person can also lose capacity during a period of illness and regain it once he or she has recovered. That being said, over time most people with dementia decline to the point that they lose capacity to make all substantial decisions. Usually by the stage of moderate dementia, it's only rarely necessary to assess capacity (although people can often still express strong preferences at this stage).
It's also important to realize that capacity is not the same as competence. Competence is a legal term, and competence must be determined by a judge. (People found incompetent must then have a guardian.)
In general, our experience is that families tend to assume that those with mild to moderate dementia have more capacity to make decisions than they actually do. There are many reasons for this:
- For one, it's the default position to think of the adults in our lives as competent, functioning people. As the person with dementia loses the ability to consider how choices affect others, they may make decisions we see as wildly selfish or stubborn. The possibility of dementia may not occur to families or may be realized rather late.
- Another reason we may give too much credit to the decision making of those with dementia is that most people have a strong desire to respect others' independence. This makes us reluctant to "rock the boat" by challenging decisions we disagree with. A diagnosis of dementia sometimes intensifies this tendency: Both the patient and the family cling to what they perceive as remaining abilities to reassure themselves that things haven't changed so much -- causing them to downplay the very real disabilities taking place.
- Finally, relationships carry deeply rooted patterns; families often go along with a parent's or a spouse's wishes on autopilot, regardless of the reality of the situation, because Mom or a partner has always been the strong authority figure to heed.
At heart, questions like, "Should Bill keep driving?" are really, "Is Bill capable of making the decision to drive?" The question, "Should I take over the checkbook?" is more helpfully framed as, "Is Mom still capable of deciding whether she should manage the checkbook?" (which would require her to understand the risks of doing so).
More about how to make difficult decisions when your loved one's mental capacity is failing
Step 2: Determine whether the person has capacity to make the decision.
How much capacity a person with dementia has tends to correlate to the stage of dementia. In early dementia, people may retain an ability to appear thoughtful and polite and say things that sound familiar, so listeners often assume a capacity whether it's there or not. As the disease progresses, lack of capacity grows more obvious.
To begin to determine capacity, listen to the person's opinion, but also try to assess whether he or she is able to support these conclusions in a reasonable way.
In a nonjudgmental, nonemotional tone, ask your loved one how he or she feels about the issue at hand and how he or she arrived at the decision. Ask the person to explain the reasoning: "Do you think you should drive?" "Yes." "Are you concerned about that latest fender bender? Did you notice how you got lost going to church last week?"
Don't get into an argument or let your frustration show if the answers are illogical. You want to remain respectful and thoughtful, asking detailed follow-up questions that clarify whether the person can explain the "why" behind the choice. If the two of you have had a lot of clashes over the topic previously, it's often better to include a neutral third party in the room to prevent yet another squabble from starting up.
As you probe, you may recognize that practical skills are poor and your loved one's logic makes little sense, or he or she wildly underestimates the safety issues at hand. Then you may come to the conclusion that your loved one is unable to make the call.
Or you may come to recognize that the person's logic is still sound -- and you may need to accept his or her choice, even if you disagree. Continue to keep a close eye on things, as the situation will likely change as dementia symptoms progress.
Please be aware, however, that in early dementia, many people still have the capacity to sound rational even though they're behaving in unsafe ways. That is, they "sound" like they understand a decision, even though they can no longer fully grasp the situation. For example, they may coherently explain why they can manage a checkbook or come up with plausible excuses for why they've been having driving accidents. But if you look at capacity to manage all of the skills involved with the issue, they may be unable to, say, add two figures any more, or they may lack the spatial orientation, reaction time, judgment, and peripheral vision necessary to safely drive. So while your loved one's insight and logic are important when determining capacity, they're not the only factors you must evaluate.
In these cases, you'll have to step in and make the tough decision. Listen to his or her preferences, but don't get caught up in a give-and-take about the issue. It might seem illogical or uncaring to not include your loved one in the big decisions about his or her future, but you have to recognize that you're no longer dealing with the person you've known all your life; you're now dealing with a person whose brain isn't working properly.
Doctors can help determine capacity for medical decisions. Whether or not you have access to medical records via HIPAA, you can call ahead to the doctor to explain your perspective about the person's possible trouble with reasoning, and ask for help determining it.
More about how to make difficult decisions when your loved one's mental capacity is failing
Step 3: Know what to do if you think your loved one doesn't have capacity.
If you're facing a difficult decision about a nonmedical topic (such as housing or finances) and you determine that your loved one may lack capacity, you may need to seek legal counsel in order to override your loved one.
When someone lacks capacity, you can also do these things to help guide your decision:
- Consider the person's preferences.
Many people with dementia lack capacity to make certain informed decisions. But often, they're quite able to express preferences about where to live, whether to drive, the type of medical care they get, and so on. You can find this out by asking directly, or you may have a good idea of preferences based on opinions stated or actions taken by the person in the past about his or her own life or others' situations.
Honoring someone's preferences as best you can yields many benefits. These include affecting the person's overall happiness and mood, improving cooperation, and making him or her easier to live with. However, these benefits need to be balanced against any safety risks and other downsides.
- Consider previous instructions left for care.
Is there a living will or other document that guides healthcare preferences? If not, a healthcare decision should be made by whoever has durable power of attorney for healthcare, or the next of kin if no power of attorney was specified. A surrogate decision maker is generally expected to make decisions based on consideration of what he or she thinks the patient would have wanted if he or she were able to understand the issues.
- Consider the costs of overriding a person's preference.
Factor in the costs of enforcing a decision. You may have determined that your elderly mother is too forgetful and confused to have capacity to decide about taking her medications, for example. If you have durable power of attorney for healthcare for her, you can decide if she should take them. But how will you make her actually swallow the pills?
This thought process sometimes leads surrogate decision-makers to conclude that, on the whole, it's better to just go with the person's preference unless that raises substantial safety risks to self or to others. (For example, we often recommend overriding a dementia patient's preference to continue driving, given the risk to other motorists and pedestrians.)
- Get the input of all close family members.
Making a decision on a loved one's behalf can be easier if you feel you're not going it alone. It's not always possible to reach consensus, but it's nice if you're able to.
- Realize that most of these decisions are difficult because all the choices involve significant burdens.
Much as our patients may believe there's a "right answer" to the big decisions they and their loved ones face, there often isn't. You could leave your frail father in his own home, if that's his wish -- and he could fall and get hurt. Or you could move him into a nursing home to keep him safe -- but it will be expensive, and he may miss his familiar surroundings so much that he becomes depressed or declines cognitively.
Our best guidance: Do all you can to identify the benefits and the burdens of each option being considered, and then try to choose what seems like the best overall compromise between the two.