My Mother is in Denial about Dementia

The Caring Generation®—Episode 247, June 17, 2026.  My mother is in denial about dementia, my father doesn’t want to talk about it, and I’m feeling a bit helpless. These and other frustrations are common, especially when siblings have similar feelings. Caregiving expert Pamela D. Wilson shares three considerations of why talking about dementia in families is critical to having choices about care.

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My Mother is In Denial about Dementia

My mother is in denial about dementia, and she won’t listen to anyone in the family, is a common frustration of adult children. Parents with dementia in denial can be like a ticking bomb. You know something bad is going to happen; you’re just not sure when.
So how can families become more comfortable talking about memory loss so that good choices can be made by the person with dementia and the family before a crisis strikes and it’s too late?
Let’s look at dementia from three perspectives:
1) the loss of opportunity for the person diagnosed to make choices,
2) the physical and health risks for the caregiver spouse, and
3) medical and ethical decisions around truth-telling—many spouses or families don’t want to tell their loved one they have memory loss or dementia

Dementia and Denial

Thoughts around discussing dementia in families are mixed. While denial can be a coping mechanism, the progression of memory loss doesn’t wait for the right time. It can be a slow yet constant progression to the land of the forgetful.
Many older adults realize that they’re not the same. They can’t do the things they used to do. But they’re not sure why.
Their experience of change or memory loss may relate to a stroke or another problem. Many attribute forgetfulness to old age.
Memory loss isn’t commonly correlated with cardiovascular, circulatory, endocrine or other conditions until someone connects the dots.
The challenge is that many medical general practitioners, also called primary care physicians, lack the skills to suspect or diagnose dementia in elderly patients, unless the individual specifically asks.
Geriatricians, neurologists, and neuropsychologists are the better choice to evaluate and diagnose memory loss.

Doctor Appointments Focus on Specific Problems

When you think of it, primary care doctor appointments are initially driven by the patient. A problem exists. The patient makes an appointment and sees the doctor.  A solution is offered for the problem.
However, with memory loss, it’s different because there isn’t a solution. For this reason, caregivers who say my mother is in denial about dementia may not realize that their mother is aware of the diagnosis and refuses to discuss it.
Parents with a diagnosis may not want to see a doctor. 
Many older adults don’t realize that they have memory problems unless someone mentions that they’re forgetful. Some think family members are making up stories about their forgetfulness to aggravate them.
This is the case of adult children who say, “My mother is in denial about dementia. My father is in denial about dementia. My family is in denial about dementia. Or, we don’t talk about those things in our family.”
Family culture and religious beliefs can impact the way families deal with dementia.  These beliefs frame how memory loss is viewed.
Sometimes dementia is referred to as a medical condition. Other times, memory loss is viewed as a normal part of aging or a karmic or spiritual hardship.
Language barriers and education can influence whether dementia is diagnosed early, missed, or delayed in diagnosis.

Risks of a Spouse or Parent with Dementia in Denial

The first challenge with memory loss or dementia is recognizing the symptoms early enough to seek a diagnosis, understand the disease, and to make choices.
When spouses avoid talking about dementia or children realize something is wrong with a parent but don’t want to bring up the topic, everyone in the family suffers.
Let’s begin with the person diagnosed with memory loss. No one wants to hear bad news about their health. Even doctors don’t want to give patients bad news.
Dementia research confirms that while many patients want to know the truth, others don’t.
The question of when to be truthful or ignore the truth can be complicated and is explored in dementia research.

Spouse in Denial of Dementia

Memory loss worsens over time, along with declines in organizational skills (executive function), decision-making, and physical health.
So while keeping the secret may work for a time, spouses and children will eventually find out.
Which leads to the question: what’s wrong with waiting to tell family until you have to?
It’s because by the time a person has to disclose the diagnosis, their brain may not know it’s time.
Here are common events that occur that call attention to memory loss concerns:

• A mother in denial about dementia will lose the skills to take action to protect herself from harmful events she is unable to control. Mom forgets to take her heart medications and has a heart attack and a stroke.
• Persons with dementia become susceptible to being taken advantage of. That filter that once said, “this feels uncomfortable or dangerous,” is gone. And if the person is a family member, the harmful intentions of a son or daughter are even more difficult to detect. Money disappears from bank accounts.
• Elder neglect, financial exploitation, and elder abuse most often happen within families. Parents want to believe they can trust their children.

So, rather than trusting a spouse or children or someone else to do the right thing for your care, set up a plan that describes what you want.
Ensure that others do the right things, rather than making decisions that go against your wishes.

What are the Risks of Being in Denial About a Parent With Dementia or a Spouse With Dementia?

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1 Loss of Opportunity to Make Choices

Dementia is associated with a loss of ability to initiate actions and apathy.

• Clean the kitchen? Sure, someday. Dishes piled up in the sink. Spoiled food is in the refrigerator.
• That pile of mail on the kitchen table? It grows and grows and grows. One day, the electricity is turned off because the bill wasn’t paid.
• Shop for groceries? The ability to create a list of items is no longer available.

Days and weeks pass, and nothing gets done. Persons with dementia are easily distracted. They become more forgetful. The choices they were once able to make are behind them.
Others begin making choices for them, with or without legal responsibility. Sometimes the court appoints a guardian or conservator.

Here’s an example of how this begins

You have four children. Your goal is to live independently as long as possible. Early on, you chose two retirement communities that have assisted living and memory care. This is your plan when you can no longer live independently in your home.
You would be okay living with one of your children, but not with the other three. Due to a lack of initiative, you never get around to putting these very specific wishes in writing.
Fortunately, years ago, you appointed a friend as your medical and financial power of attorney.
Your memory loss progresses. You don’t realize that it’s time to sell your home and move to one of the retirement communities you chose.
Your friend, appointed under your power of attorney, realizes it’s time because they were contacted by one of your children sharing scary stories about your daily activities.
The POA agent decides that spending your money on a retirement community is unnecessary when you have a ready, able, willing, and interested child who agrees to care for you in return for rent and a spending allowance.
No one, not even your friend, knows that this is not the child you would have chosen to live with. You didn’t write it down or tell anyone.
Your other children are against the move. The POA makes the decision.

Family Caregiver Negligence

You are living in your worst nightmare. Because of your level of dementia, you can’t object.
Over time, the child you live with pays less attention to you. They’re busy with work and their own family.
You have a room in the basement. No visitors. No activity. You’re isolated.
Your other children visit and express concern, but even they don’t know what to do. While everything may look good from the outside, problems exist.
Family disagreements or neglect of care for a parent by a controlling child can be difficult to correct if not identified early.
The controlling sibling becomes the only constant in a parent’s life and becomes entrenched in their financial interests.
Change would require a legal battle. Litigation. Something most families can’t afford.
Early discovery of these issues, in a family still willing to work together even if there is a controlling sibling, can be addressed through a private family elder mediation session.

That Can’t Happen to Me

While you may think that family members, like a spouse or an adult child, neglecting your care or taking advantage of you won’t happen in your family, it can.
According to Wilson,
“I know these things happen because of my personal experience as a professional medical and durable power of attorney agent, guardian, conservator, trustee, and personal representative of the estate. Individuals, families, and courts appointed me to make decisions for vulnerable persons with dementia.”
So it’s best to become educated about how a diagnosis of mild memory loss, dementia, or Alzheimer’s progresses. If your family has no experience with this type of memory loss, seek assistance from caregiving expert Pamela D. Wilson.

2 Risks for the Spouse Caring for a Spouse With Dementia

Dementia, Alzheimer’s, Parkinsons are several progressive neurological diseases that can span over a number of years.
While the diagnosis is life-changing for the dementia diagnosed spouse, it’s also life-changing for the caregiver spouse.

• According to research, a spouse caring for a spouse with dementia is 14.8% more likely to be diagnosed themselves due to a number of health and lifestyle factors.

However, the more shocking statistic relates to the length of time caring for a spouse with dementia, which can be 5, 20, 25, or 20 years.
The longer a spouse cares for a spouse with dementia, the greater the chance the caregiving spouse will also be diagnosed with dementia. The percentage of diagnosis ranges from 48 to 600%.
That’s a phone call that no one wants to receive from their doctor.

What’s the Cause of Spousal Caregiver Dementia Decline?

If you are watching and thinking my mother is in denial about dementia, how do you think your father feels about the situation?

• Spousal caregivers of persons with dementia experience physical and emotional health declines due to a lack of activity, socialization, and inattention to health.
• Caregivers experience depression and isolation.
• They lose vocabulary skills because they spend time with a spouse who is losing their ability to speak in full sentences.

The stress of dementia spouse caregiving has long-reaching effects that many couples never know to discuss or plan for.
Caring for the caregiver is a nice thing to talk about, but it’s rarely taken seriously because the people needing care require a high level of time and attention from the caregiver.

A Spouse’s Denial of Dementia

So while one spouse may not want to talk about dementia or plan for dementia care, the couple needs a plan.  A plan for the spouse with dementia and a plan for the caregiver.
Let’s take a step back and remove the diagnosis of dementia.
Couples, partners, and married people need a caregiving plan for both the person needing care and the spouse-caregiver.
If adult children are potential second-level caregivers, parents need a conflict management plan. Discussions with the entire family present can offer transparency and avoid information that can easily be misunderstood.
These plans include financial, legal, health, caregiving, and conflict management.

The Healthy Spouse and The Sick Spouse

The health status of spouses can be similar or very different. This, in part, relates to the idea of “assortative mating,” which refers to how individuals select partners with similar or opposite traits, such as educational attainment, height, health status, mental health status, and physical fitness.
Your traits and the traits of the person you marry can affect your lifestyle, where you live, your health, and your earning potential. So, if you’re already married, you probably have a little experience in how these traits affect your marriage and your life.
Some spouses are planners; others wait until the very last minute. Some spouses are interested in health; others are not. As the years advance, these differences become more significant, especially when unexpected changes like health diagnoses, including a diagnosis of dementia, occur.
One spouse may be thinking, Oh my gosh, we need a plan and the other, “It’s too much. I can’t think about this right now.” Somewhere in the middle sits practicality and realism.

Practicality and Realism

Some people are more practical than others. They’d rather have the hard conversations and consider worst-case scenarios to plan for the unexpected.
Others, as the saying goes, “fly by the seat of their pants with their hair on fire.”
For example, let’s say you have a big house and a yard. Your husband takes care of these tasks. But he’s the one diagnosed with dementia.
How practical will it be for you to take care of the house and the yard when your time is committed to caring for your husband? Can you hire out the work? Or is that even something you want to consider?
Do you have hobbies or a social life you want to maintain as a spouse caregiver?
Routine tasks and daily preferences are topics couples may wait to discuss until an event prompts a conversation.
So, thinking about yard work, home maintenance, and a husband with dementia, is it time to talk about downsizing a house or moving to a lower-maintenance living situation that doesn’t require as much upkeep?
Or reverse the situation, your mom has dementia, and she ran the household, did all of the cooking, etc. How difficult will it be for your father to take over these tasks, or will he need assistance?
A mother being in denial about dementia can make life more difficult for her to give up tasks she’s always done, even if she isn’t doing those tasks very well anymore. For example: handwashed dishes aren’t really clean, so they are removed from the cabinets and placed in the dishwasher.

Get Comfortable Talking About Dementia

Not talking about dementia won’t make it go away. It will make life more difficult for everyone in the family.
Once the topic has been addressed, the conversations can shift to “under the circumstances, how will we agree to handle these tasks?”
It’s not necessary that the words dementia or memory loss are mentioned in every conversation. The goal of talking about dementia isn’t to make the person with memory loss feel bad about their condition.
The hope of family conversations about dementia is to make the best of life, knowing what the diagnosed person wants, especially when they’re unable to put their wishes into words.

3 Ethical Decisions and Truth Telling

Ethical decisions and truth-telling around dementia and what information to provide can be a dilemma. Physicians have an ethical duty to their patients. Family members may favor detailed explanations.

Medical Ethics

From a medical perspective, let’s say that your spouse or mother sees their doctor. The doctor tells them that they have dementia.
Their response, “Thanks, doc. I don’t want to know anymore. I don’t want further diagnostic testing, and I never want to talk about it again.”
Memory loss progresses. Your husband or mother is doing unsafe things.

• Driving the car and causing accidents.
• The basement of the house flooded because the bathtub faucet was left running.
• A fire started in the kitchen because a cardboard box was placed on the stove with the burners on.
• Or even worse, a spouse or parent with dementia has been financially exploited by scammers. Their bank account was emptied.

Your first thought is to contact their doctor, but the doctor won’t help or even discuss concerns about memory loss. Why?
Because doctors have an ethical duty to their patients, not to family members. If your mother said no conversations about dementia, then that’s what the physician honors.

Family Truth Telling

Inexperienced family caregivers often deliver long explanations or give explicit instructions. What they don’t realize is that a parent with dementia has a short attention span and poor memory.
So by the time the explanation reaches the second sentence, the first is forgotten. As memory loss progresses, long conversations and detailed instructions become difficult. They’re only more confusing for the person with dementia.
Adult children say, “Mom is purposely trying to irritate me by not remembering what I tell her.”
My response, “No. Mom has a brain disease that prevents her from remembering what you tell her. At this point, she cannot conceptualize the steps to take to purposely irritate you.”

Who or What is the Message About?

While it’s impossible to know of every family situation, the most compassionate question to ask is: who is the message about, who benefits, and how?
Saying my mother is in denial about dementia and attempting to force her to acknowledge she has dementia when the disease has progressed so far that she can’t understand the discussion is futile and unkind.
To this point, there may come a time when the legally responsible party, a power of attorney agent, guardian, or conservator, has to make a hard choice because of safety issues.

When Hard Decisions May Have to Be Made

Wilson shares a story,
“Individuals for whom I was appointed guardian refused to move to a care community, take medications, or bathe. So, I kept them as safe as possible by bringing in caregivers to assist with bathing, meals, dressing, and medications as I waited for the event.
The event or tipping point was something that took them to the hospital emergency room – a fall, a broken hip, a severe urinary tract infection. That point of change was the catalyst for moving them to a care community rather than returning them home.”
The important aspect of making hard decisions as a legally responsible party is having a well-thought-out plan for when “something happens,” so you can implement it quickly.
So, regardless of your situation- my mother is in denial about dementia, my dad or spouse doesn’t want to talk about it, we don’t know how to talk about it, or we don’t talk about those things in our family- I encourage you to start talking.
Start having conversations. Become more informed about the diagnosis so that you and your loved ones can make good choices about the future.

If you’re looking for caregiver or family support for care planning, dementia discussions, or other topics, schedule a virtual meeting with Pamela D Wilson.

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