Making Decisions for an Elderly Parent With Dementia
Making decisions for an elderly parent with dementia is a serious responsibility for family caregivers who might also be a power of attorney agent or guardian. As memory loss progresses and decision-making skills decrease, caring for elderly parents with dementia presents unique challenges for family caregivers.
Gain insights and examples around decision-making for elderly parents and tips for family interactions to support positive care relationships.
The Role of the Legally Responsible Party: Medical or Financial Power of Attorney Agent, Guardian, or Conservator
The person or persons named as the legally responsible party play a critical role in making decisions for an elderly parent with dementia. Making decisions for an elderly parent isn’t a topic to be taken lightly.
If you are an adult child named as a medical or financial power of attorney agent, or a court-appointed guardian or conservator, you are held to a higher decision-making standard.
This isn’t a role that you delegate to your husband or wife or another family member because you’re too busy or have too many other responsibilities.
You are legally responsible for the care, well-being, and financial matters of your elderly parent. If you can’t fill the role, then resign and pass the decision-making responsibility along to someone who will take it seriously and commit the time to it.
The Risk of Delegating Legal Responsibility
If you are the legally responsible party and you delegate responsibility to your spouse, think twice about the short and long-term consequences.
- A husband or wife “helping out” who is not the legal power of attorney or guardian might be a nice person, but they do not have a fiduciary duty to act in the best interests or follow the substituted judgment of the person they are helping.
- In most cases, they opt for the easiest path to relieve stress and work from their spouse (the legally responsible party, who doesn’t have time to do the job they were appointed to do.
- Stressed-out spouses who agree to help may cause more problems and division in the family. After all, they are not an immediate family member. They are related through marriage.
- Many times, a spouse who helps out refuses to communicate, work with siblings, or be transparent with immediate famiy members. After all, their primary loyalty lies with their spouse, not with other family members.
Huge family disagreements and rifts arise when a son or daughter who has accepted the legal role passes decision-making power to their spouse.
The result is family turmoil that can lead to legal battles and complaints about breach of contract, fiduciary negligence, isolation, and abuse. Families end up in court battles because a son or daughter fails to fulfill their fiduciary role, and their siblings won’t stand for it.
Legal Responsibility and Accountability
Any person accepting legal responsibility is accountable to the person who appointed them and to other family members. If a legally responsible person acts in ways that are contradictory to the wishes of an elderly parent with dementia, engages in situations that are a conflict of interest, or takes an action that appears to be self-serving, it’s time for family members to start asking questions.
Family members can request a review of financial and health records. While the power of attorney agent, guardian, or conservator may refuse to share this information, a court order can compel disclosure.
Additionally, a judge can and will remove a legally responsible party proven to breach their fiduciary duty to an elderly parent with dementia.
If you are the legally responsible party, you can be held accountable for decisions your helpful spouse made. If you are not in a position to fulfill your legal role. Resign and pass along the responsibility and the accountability.
Documenting Wishes in Writing and Using Substituted Judgment
Making life-affecting decisions for an elderly parent with dementia requires thoughtfulness, problem-solving, evaluating options, and, in some cases, using substituted judgment.
Using substituted judgment means the legally responsible person makes the decision a parent would have made if the parent were able to make it themselves.
Individuals in a legal or fiduciary role are not in that role to do what they think is best. They are there to follow the previously stated wishes of an elderly parent with dementia whenever possible. This is important.
If you are not yet at the point where your elderly parent with dementia can no longer make decisions, make sure they place all of their wishes in writing and have the document notarized. This can avoid family squabbles and court battles about what dad or mom would have wanted.
Elderly Parents Can’t Always Trust Their Children
If you are an older adult with early or mild cognitive impairment, document your wishes. Direct your attorney to add provisions in your legal documents stating that the person you appoint can be removed for breaching or failing to fulfill their duty, neglecting your care, or mismanaging your financial affairs.
Add a provision that your estate will fund litigation by family members questioning the fiduciary. Require that the named fiduciary pay their own legal fees if they are deemed guilty of mismanagement, and that they be disinherited from the will and estate.
While parents like to believe that children named as legally responsible parties are trustworthy and honorable, unexpected circumstances and timing of care needs might not be a match for where your child is in their life if they have children, a career, or a spouse who disagrees with their fulfilling this legal role.
Resignation of Legally Responsible Parties
In situations where an adult child is not or cannot fulfill their fiduciary responsibilities, they may need to resign, with the next person named stepping into this role.
This idea reinforces the importance of naming successors in legal documents. There can be times when the first person you choose isn’t available or cannot take on the responsibility of decision-making about your care and money.
If no successor is named, a petition for guardianship and conservatorship can be initiated for the elderly parent with dementia. The court will appoint another qualified individual who agrees to accept this responsibility. Even still, naming a successor guardian and conservator is wise.
How to Respond to Elderly Parents With Dementia Who Refuse Care
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Pamela’s YouTube ChannelWhy Decision-Making for Elderly Parents With Dementia Can Be Challenging
Interacting and managing care for elderly parents with dementia who resist care or decisions can be frustrating. Dementia care requires extreme patience and high levels of empathy and compassion.
During Pamela D Wilson’s 25 years with over a decade as a professional fiduciary, she encountered many care refusals. Pamela developed practical steps and strategies to address refusals that could be reasonably and logically tested.
Questions for family members acting in the role of a caregiver or a fiduciary include:
- How can caregivers balance being worried about an elderly parent versus allowing an elderly parent to live their life and have as much control as they want?
- When is it time to make the decision that your elderly parent cannot make for themselves due to the advancement of their memory loss?
Pamela D Wilson’s Experience as a Professional Fiduciary
One of the most challenging aspects of being a professional fiduciary is to honor the rights, self-determination, and dignity of persons with dementia or any cognitive deficit.
Many of Pamela’s clients were not safe living alone at home. Her challenge was getting them to accept caregivers coming into the home or moving to a care community if finances did not allow for 24-hour in-home care.
Yet some clients financially planned ahead to afford 24-hour in-home care. These individuals wished to stay in their homes. Not all individuals are in a position to have this level of unlimited choices.
As a power of attorney agent, guardian, or conservator, Pamela managed these situations employing and supervising multiple care agencies and other services. Family members in a fiduciary role can do the same with well-considered plans and supervision.
Why Explaining or Rationalizing Doesn’t Work with Advanced Dementia
Often, family caregivers and the legally responsible party want to provide detailed, lengthy explanations and rationales for decision-making. Depending on an individual’s level of memory loss, they may be able to comprehend and evaluate information. Other times it’s simply not.
Thoughtful conversations are easier with persons who have dementia, know they have dementia, and can recognize that they forget to eat, bathe, take medications, or change their clothes.
These individuals also recognize that they have difficulty managing other parts of their lives. With these individuals, it is possible to have conversations about risks and choices.
It can be challenging for a fiduciary to determine when asking or expecting an elderly parent with dementia to understand information is no longer possible. At some point, the legally responsible party has a duty to make the decision.
Then it’s best to offer a short explanation, such as, “We will be doing this because of this.” And then do it.
The Emotional Impact of Care Refusals on Decision-Making
However, past the stage of understanding is a stage where care refusals are adamant. You might hear statements like:
- I’m not doing that
- I don’t have memory loss
- There’s nothing wrong with me
- The only way I’m going out of this house is feet first
- Stop making my life so difficult
In these cases, the fiduciary must balance the risk against the potential consequences of the refusal.
This is an area where family caregivers can experience a lot of emotional distress because they don’t want to force Mom or Dad to do something they do not want to do.
In cases where making difficult decisions for elderly parents with dementia is necessary, siblings can be in violent disagreement. This happens on a variety of topics, including choices around medical care and financial matters.
- Prescribed medications
- Nutrition and diet
- Exercise
- Medical professionals
- Medical treatments
- Activities, socialization, and travel
- Family member visits
- Hiring in-home caregivers
- Moving a parent out of their home, or from assisted living to memory care to a nursing home
- Financial expenditures for care
Benefits of Family Meetings and Transparency
Family meetings and being transparent in these challenging situations of making decisions for elderly parents with dementia are necessary so that everyone feels heard.
Then, even if the power of attorney agent or guardian has to make a hard decision that not everyone will like, they are not surprised by it and know the rationale.
Making hard decisions, informing family members who may disagree, and being transparent are part of a fiduciary duty and responsibility.
If you are the legally responsible person and harm comes to Mom or Dad because you didn’t take an action that you knew was necessary, you can be held accountable.
The emotional impact of delaying decisions that result in harm can occur when a fiduciary allows a sibling to pressure or influence them into making a choice, when they allow feelings to outweigh facts, or when they feel sorry for Mom or Dad or guilty.
Acting in a fiduciary role requires a balance of fact and emotion. Overly emotional people may not be appropriate or wise choices as fiduciaries because they may avoid making hard decisions.
Two Scenarios Around Decision-Making for Elderly Parents
Let’s look at two scenarios around making difficult decisions for elderly parents with dementia that might help you more easily make these decisions.
1 Taking away the car or the car keys
You know that Mom or Dad should not be driving, given the severity of their memory loss.
- They lose their keys and things around the house.
- They drive and get lost. Can’t find where they left the car.
- The car is dented and scratched.
- The garage door is damaged.
- The mailbox next to the driveway has been knocked over for the fourth time.
Even still, the fiduciary is trying to reason with Mom or Dad that they should stop driving. The conversation is going nowhere. You may hear:
- I started driving when I was 14, and I still drive as well today as I did then.
- There’s nothing wrong with my driving; it’s all the other people on the road and so on.
But the hard facts are that your parent with memory loss may hit a child crossing or playing in the street. They may injure someone else or be harmed themselves.
As the fiduciary, you allowed your parent with memory loss and a cognitive issue to drive a car.
The result is that a person is seriously injured or dead. Maybe Mom or Dad is seriously injured.
This is a lawsuit waiting to happen. It’s not only the insurance company that may have to pay out. Your parents’ estate, you as a fiduciary, and you as an individual may be sued.
All of your parents’ money that was going to go to their care can be taken away in a lawsuit that could cost hundreds of thousands, if not millions, of dollars in damages.
And you allowed it to happen because you were indecisive and refused to make a difficult decision. The medical evidence about the extent of your parents’ memory loss is in their health record. Maybe they have a speeding ticket or another incident on their driving record.
Your parent can’t remember the accident and certainly couldn’t testify to their innocence in court.
There’s no need to place your parent or yourself in this situation when you have information that places their driving skills in question.
2 Safety risks exist for Mom and Dad, who live at home
Mom or Dad lives at home. You have concerns about their safety because of their memory loss, but nothing significant has happened yet.
- The house hasn’t burned down because a space heater was left near a flammable item, or the stove wasn’t turned off
- They haven’t forgotten to turn off the water faucets, so there hasn’t been a flood
- They’re not wandering out of the house and getting lost
- They are calling you at work 10 times a day because they forget how to use the TV remote
- They use oxygen and still smoke cigarettes while wearing the oxygen tubing under their nose
- They forget to take their medications and eat, and they’re starting to lose weight
- They sit all day and are becoming more of a fall risk due to poor balance and physical weakness
- Bathing and hygiene are questionable as Mom or Dad has a body odor, never previously noticeable
You can take intermediate steps.
- Unplug or turn off the stove.
- Install an automatic water shut-off device
- Remove the space heater
- Have parents use the microwave and stock the refrigerator and freezer with easy-to-heat meals
- Type out instructions for use of the TV remote
- Install cameras so that you can see what’s happening inside and outside of the house
- Make sure there are smoke and carbon monoxide detectors
- Consider nicotine patches to wean them off cigarettes
- Create a timer to remind them to take medications and set up med boxes with times of day
You know you need to hire caregivers, but Mom or Dad says no. Fortunately, they are at a point where they can still have thoughtful and rational conversations.
Develop a plan and set a trial period of a week or two weeks to allow your parent the opportunity to succeed on their own.
Have a conversation about this and outline the details and consequences. For example:
“Mom or Dad, I’m worried about your safety because of your memory loss. I feel having a caregiver during the day would be a good idea.”I know you don’t want that, so let’s see how you do for the next 1 to 2 weeks. As long as there are no issues with you not eating, losing weight, forgetting to take medications, and so on, we can continue this way.
But when X happens, caregivers will be here.
Put this agreement in writing. You sign it, your parent signs it, and you date it. If possible, include your siblings in this conversation to avoid surprises and disagreements.
Knowing When to Make Important Decisions
Knowing when to make decisions for elderly parents, who can no longer make good choices or evaluate information, can be difficult and uncomfortable. Most elderly parents with dementia can still make decisions about their daily activities. For example, what they want to eat, what clothing they want to wear, what to watch on television, etc.
It’s the more difficult and consequential decisions they struggle to make.
It can be easier for a fiduciary to make decisions when an elderly parent is clear about their wishes before their memory loss advances. This allows the fiduciary to do their best to make these wishes come true, even in the most challenging circumstances.
Sometimes, following a parent’s wishes is not possible due to financial constraints or worsening health issues. This is when making complex decisions is necessary.
Family transparency and discussing care concerns with your siblings can minimize family disagreements for the care of elderly parents with dementia.
Even if you have the decision-making power, don’t act with absolute power. Making decisions without offering a rationale and having discussions with family members may result in sibling resentment and dislike.
It’s crucial to maintain positive relationships with your siblings. You may need their help one day.
Communicate and collaborate – that’s likely what your elderly parents would have wanted. No parent wants to see their children battling over disagreements that could be resolved through planned discussions and information sharing.
Caveat: This excludes parents who have dysfunctional behaviors and who create divisive experiences and relationships with their children.
Families aren’t perfect. Dementia care is challenging. Making the right decisions can be emotionally stressful and guilt-filled.
If you are the fiduciary for an elderly parent, gather as much information and input as possible before making decisions. Do not delegate decision-making to your spouse or anyone else.
Instead, hire consultants and advisors who have the experience to offer the pros and cons of decision-making. Have these individuals hold family meetings to address questions or disagreements.
Be transparent. Share rationale. Do your best, knowing that you are accountable for the results of the decisions you make.
Being a fiduciary isn’t for everyone. If it’s not for you, resign and let another person who can commit to the job do the job.
©2025 Pamela D. Wilson All Rights Reserved