You hear your brother in the kitchen, fumbling around with some car keys. “Shoot, he found them,” you whisper to yourself as you try to intervene. His doctor estimates he’s in the middle stages of mixed dementia, and everyone on the care-partner team (your brother included) agreed several years ago it would no longer be safe for him to drive.
But in recent months, he’s taken on some suspected manipulation tactics — common among Alzheimer’s and dementia behaviors. “But you said I could drive to the store if I finished the dishes,” he sometimes says, or, “But we agreed it would be OK to drive to the beach.” Was there an agreement? Probably not. Were dishes, the beach or any other variable part of the equation? Not likely. Does he remember it would be unsafe to drive? Maybe or maybe not.
For loved ones with Alzheimer’s and other types of dementia, manipulation can be a frequent behavior for a variety of reasons ranging from bargaining for things they want to legitimate confusion. As with any of these behaviors we’ve been writing about recently, it’s helpful to understand the states of mind behind them to address sensible and meaningful solutions. (And a word of caution: It’s regrettably common for care partners of persons living with dementia to be manipulative for things they want, as well. So this conversation requires some serious, two-way honesty.)
Understanding Manipulation as a Common Alzheimer’s and Dementia Behavior
As we’ve often said on this blog and elsewhere: Dementia is so much more than memory loss alone. While memory loss may indeed be a root cause of confusion around whether an activity is safe or reasonable, many other factors could cause actions or statements to appear or sound manipulative.
Here’s a more detailed understanding:
Filling the Gaps
Your loved one goes for the keys or tries to explain why she’s wandering in the yard. “You told me I could go to X, Y or Z” or “I wanted to see the neighbor’s flowers” might be some likely responses. Perhaps they’re confused or disoriented, thinking they’re heading to a former workplace. Or maybe they’re uncomfortable and aggravated, trying to find “home” even if they’re already at home.
They may rely on some fibbing, when asked, to fill in the gaps in memory or to reach for a reason they can’t express.
Living with advancing stages of dementia doesn’t mean living without needs and desires. An individual may simply be incapable of expressing or acting accordingly to achieve them. A loved one may understandably want a taste of freedom — to drive off and watch a sunset, visit an old friend, pick up a bottle of wine, anything “normal” that was once routine.
They may resort to slight dishonesty, bargaining to get what they want. “If I did X, you said I could do Y or Z.” Of course, there was no agreement, but in their mind a this-for-that transaction works logically and fairly. Some who are still relatively cognizant may even bend or distort reality. Some may feign confusion, taking advantage of their own condition to earn sympathy points. “Since when do I need permission to withdraw from my bank account?” they may say, knowing full well a relative with power of attorney set up precautions against poor financial decisions.
Type of Dementia
Different types of dementia affect different areas of the brain, well, differently. Frontotemporal dementia, for instance, damages the frontal lobe, which governs self control and good judgment. Vascular dementia from brain tissue damaged by blood loss (i.e., stroke, heart disease, vascular disease) may cause impaired concentration and memory loss.
Thus, vastly different behaviors may result from specific styles and areas of deterioration.
Stage of Dementia
In an early stage of dementia, your loved one may not experience any negative personality effects at all. They’ll be cooperative and supportive of their care-partner team. They’ll almost certainly show respect and appreciation for the immense responsibility and sacrifice the journey will bring.
With time, sometimes even a few short years, they’ll likely grow increasingly confused and even combative, at which point manipulation may become a personality trait beyond control.
A loved one “just isn’t the same person anymore.” I hear that from clients so often. But I always assure them their loved one’s soul still lives in there, but their mind is just transitioning through a different stage. That said, they’re not wrong. Alzheimer’s and/or other dementias can arouse new characteristics and amplify old traits.
Dishonesty and manipulation may be out of character for someone who lived by a strict moral code. Perhaps they are a genuinely caring person who always spoke the truth and served others before themselves. Likewise, someone with a gruff and self-centered nature could grow worse with time.
Caregiver Manipulation of Loved Ones with Alzheimer’s and Dementia
This section requires some honesty. Admittedly, caregivers (or care partners, as we prefer to call them) sometimes use dishonest tactics for goals that may or may not be so helpful. Caring for persons living with dementia can be a long and complicated dance. Despite our best efforts, we may step on some toes learning the steps.
A range of possible scenarios can occur daily, requiring careful consideration of another’s dignity, feelings, wishes and best interests. The line may be fuzzy between what’s appropriate and what’s necessary when one may no longer think or execute decisions for themselves.
As dementia progresses, managing routine tasks like eating, bathing and taking medications can become very difficult. Your loved one may refuse beneficial tasks. They may become argumentative, combative and even aggressive. Care partners sometimes resort to “therapeutic fibbing” to avoid confrontation or ease the process.
But is it lying to withhold information or distort the truth? If a loved one takes a pill or eats a meal, do the ends justify the means? Is it deceptive to withhold an upcoming doctor appointment to avoid many repeated questions and anxiety? Sometimes the daily tightrope between right and wrong is so thin and wobbly, it’s hard to make the distinction.
Honoring the Trust Bestowed
Somewhere in the process, your loved one trusted and chose you to serve a primary role in the care-partner team. Somewhere around receiving a dementia diagnosis — maybe even when first they noticed subtle changes in memory and cognition — you worked together to set a plan in motion. This plan likely involves many progressive steps maintaining independence and dignity as long as possible.
Your loved one picked you knowing you’d be responsible for making very difficult decisions and fighting daily battles. Entering the mid- and final (terminal) stages, they may not be able to remember or express their appreciation, but your responsibilities for care, comfort and strong judgment in tough situations live on.
The Test: Who Benefits Most?
So in situations that may require stretching the truth or withholding information, a good care partner must assess reality. Who benefits? Are you not bringing up an upcoming doctor appointment because your loved one’s questions and anxiety will be tougher for you or them? Are you trying to get them to eat, bathe, take a medication that will help you or them? Should they have the ability and opportunity to decide? Do they still have the capacity?
Manipulation: The Alzheimer’s and Dementia Behavior that Goes Both Ways
#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to guide the process in a caring and compassionate way.