The holidays are a time of family togetherness. Unfortunately, the holidays are also a time when families may start to notice that grandmother is having memory problems and now feel a sense of urgency to “do something.” Or, now that everyone knows that dad has been diagnosed with dementia, the siblings take advantage of everyone being together to “come up with a plan.” One of the first issues that families grapple with is, “how much can we involve our family member with the decision-making process?”
In this blog, I answer the question, “How do I know if my family member living with dementia can safely make decisions?” Short answer: It depends on the type of dementia and how bad the dementia is.
People living with frontotemporal dementia show bad and unusual decision-making early in the disease. It is very important to remove their access to financial resources early in the disease. On the other hand, someone with vascular dementia may show good judgment and understanding of financial matters until later in their disease journey. It is important for caregivers to understand that the ability to make a decision is not an “on/off” light switch. It is more like a gradual dimmer and must be evaluated for each individual and for each circumstance.
The ability to make a decision is called decisional capacity. How do you know if someone living with dementia has the decisional capacity for a specific problem or situation? These 5 questions can start the conversation rolling. Caregivers will probably have other related questions for each of the big ones.
- Tell me about the decision. (What is the decision? What does it mean to you?)
- If you go through with your decision, what may happen?
- Tell me who your decision may help.
- Tell me who your decision may hurt.
- Is someone or something “pushing” you to make this decision?
One must evaluate the responses based on how severe the dementia is. I probably would not ask these questions of someone with moderate to severe dementia.. The asking of the questions is a process; we are providing an opportunity to really find out what the other person is thinking. On one hand, we want to protect our loved ones from financial abuse or unsafe conditions. On the other hand, we want to respect their autonomy…. their ability to make their own decisions…for as long as safely possible. I see this conflict in my clinical practice when a person living with dementia is in the mild cognitive impairment or mild dementia stage. As soon as the diagnosis is made, well-meaning family members immediately exclude the person living with dementia from all decisions. And it feels shitty for the person living with dementia.
I’m going to walk you through the process of how you get a handle on decision capacity in your loved one living with dementia.
Let’s say I have a parent with dementia who is living in his own house. One of the adult children wants that parent to move in with her. The parent steadfastly refuses. I ask the five questions and here are his responses to the questions:
Tell me about the decision. (What is the decision? What does it mean to you?)
“My daughter wants me to move in with her, but I don’t like where she lives. It is not close to where my friends are and I’ll never see them.“
If you go through with your decision, what may happen?
“If I move in with her, I’ll have to sell my house and I will always be a ‘guest.’ I will never have my own place.“
Tell me who your decision may help.
“Moving in would help my daughter, she would not have to drive over here to check on me. It would be nice to have company every evening.“
Tell me who your decision may hurt.
“True, I’ll be with someone but she works every day so I’ll still be by myself while she is at work. And I still won’t have my own space.”
Is someone or something “pushing” you to make this decision?
“I feel like my children are pushing me to move so that they won’t have to worry about me.”
In this situation, the reality is that the move is not a question of “if” but a question of “when.” At least the parent is sharing some of his concerns about feeling homeless and becoming a permanent house guest. His daughter may be able to come up with some compromises based on this conversation. Perhaps it would be better if he were to relocate to an apartment in a senior community or to an assisted living environment; this may not have occurred to the adult children as a possibility because they were so focused on one potential “solution” to their concerns about their father’s safety.
These five questions can also be useful in checking to see if the person living with dementia is refusing care, medication, or some other necessary item due to true autonomy or instead, due to refusals based on dementia or fear.
Decisional Capacity versus Decisional Competence
Decisional capacity is the ability to make a decision and can be evaluated by a clinician, such as a nurse practitioner, physician, social worker, or psychologist. Decisional capacity is situational. That is, a person may have the ability to make a decision about wanting someone listed as a healthcare proxy. However, that person may lack the decisional capacity to decide how to safely invest retirement funds. This blog is all about dementia, so I’m discussing decisional capacity within the context of dementia. Someone may lack decisional capacity due to being intoxicated, impaired by medication, deathly ill, or being overwhelmed by a traumatic event.
Decisional competence is a legal term. Competence is ultimately decided by a judge, who weighs opinions rendered by court-appointed or court-recognized experts.
Decisional capacity can be assessed by a thorough examination. If memory issues are present, the first thing needed is to identify what parts of the mind are working, and which parts are having trouble. Dementia is more than memory loss. In someone with behavioral variant frontotemporal dementia (bvFTD), the main problems usually involve judgment and control. The person with bvFTD can recall a list of words and count backward from 100 by 7. Yet, the person with bvFTD may struggle with mimicking the examiner’s hand gestures or drawing a cube. That person may easily fly into road rage and try to run the “offending” driver off the road or hand a complete stranger a check for $50,000. The part of the brain that controls judgment and self-restraint is slipping away. A person with mild bvFTD may have less decisional capacity for a financial problem than a person with mild vascular dementia.
Once the examiner has a general idea as to which parts of the brain (and what cognitive abilities) are strong and which ones are struggling, the examiner can ask some questions. Let’s say the person living with dementia wants to help out an adult child who is struggling financially. The person receiving the financial assistance will likely exclaim that “mom knows what she is doing.” The other siblings may express concern: “Is mom being taken advantage of?” Financial exploitation is a real problem that impacts persons living with dementia and their families. Families struggle with balancing independence with providing safety. One way to gain some clarity is to see if mom understands the problem, appreciates the impact of the problem, understands the pros and cons of the issue, and can articulate her decision and why she made it in a way that shows she systematically thought through the issue. If I were asked to weigh in, I’d ask these questions:
1. What is the problem?
In other words, I would want to ask the person living with dementia, what is going on with your adult children? What is the problem? Compare these potential responses.
Response #1:“Fred lost his job and he is unable to pay his bills. I’m going to give him $10k until he is able to find a new job. I don’t expect him to pay it back. I paid for the other two daughters’ weddings, I never helped him the way I had helped the girls.”
Response #2: “Oh, they are always arguing about something. The girls get angry when I help Fred.”
If I received response #1, I would likely say that the person living with dementia understands the situation. If I received response #2, I would have concerns about her decisional capacity for lending money.
2. What are some other options?
I would ask if the person living with dementia has some alternative ideas or solutions. What alternatives were offered by the other children?
3. What are the pros and cons of the proposed action? What are potential consequences (intended and unintended) of the proposed action?
Although the adult children may already know the answers to the following questions, it is helpful to hear the responses from the person living with dementia in order to determine their understanding of the decision. And possible outcomes of the decision on his or her life:
- Does $10K represent the person’s entire life savings? Will giving that much money away cause hardship to the individual or future caregivers? For someone with seven figures in investments, $10K is a much smaller percentage than $100K in the retirement portfolio.
- Is this an isolated incident, or is Fred expecting ongoing financial support while he searches for a job?
- Is Fred making promises in exchange for the funds? Promises such as, “I’ll always be here to care for you, Mom. I won’t let them put you in a nursing home.” It may be that the other siblings’ concerns about financial exploitation and coercion are founded.
It is interesting to hear what the person living with dementia reports as the pros and cons. She may sorrowfully admit that yes, this is an ongoing problem but she feels guilty if her son is homeless. Or, she may assert that Fred isn’t asking her for help, she decided to broach the topic and he accepted.
4. What is the final decision and why?
The challenge here is asking the question so that the person living with dementia does not feel attacked or doubted. Those emotions can cause the person with dementia to stop any discussion with the family. One approach is, “I’m curious what you finally decided to do for Fred.” After the person living with dementia gives the decision, a follow-up could be, “OK. How did you get to that decision?”
For financial matters, it is a good idea to put everything in writing, even if the person living with dementia exhibits decisional capacity for that specific issue. Naming a trusted person as power of attorney is also important. Decisional capacity does not mean everyone agrees with the person’s final decision; I can have the ability to make a decision, but may still make a poor one because I allowed emotions to affect my decision or failed to heed good advice.
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Categories: Alzheimer's Disease Caregiving communication Help Lewy Body Dementia Vascular Dementia
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
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