9 Ways to Cope With Dementia-Related Personality Changes

When Luisa Paolone married her childhood sweetheart, Steven, 47 years ago, she couldn't have imagined that the reserved, selfless, kind and quiet man she knew would become egocentric and loquacious.

"It was a difficult journey," says the Spokane, Washington, resident. "I saw the decline a few years before diagnosis, like not knowing what a poinsettia was, or the names of bridges and mountains he had climbed as a youth — insisting they were called something other than their true names."

Over time, his behavior and personality shifted as his memory faded. Eventually, tearful and frustrated, Paolone spoke with a nurse about her husband's newly argumentative, cagey demeanor. Shortly after, a neurologist diagnosed him with Alzheimer's.

"He still did not think there was anything wrong. He argued with the neurologist and said I had Alzheimer's, not he, even though the scan was quite direct with the diagnosis," Paolone recalls.

Along with confusion and memory difficulties, behavior, mood and personality changes are hallmark symptoms of Alzheimer's and other forms of dementia. Often, these alterations are the most difficult part of the disease for loved ones to grapple with.

"Caring for someone you love who is living with dementia is unpredictable, relentless, hard, and, at times, terrifying, especially as the disease progresses," says Matt LeKrey, of Jackson, Wyoming, whose father experiences dementia-related delirium, among other symptoms. "It can feel like a long-term grieving process because, in some ways, you are slowly mourning the memory of someone you loved deeply while watching them lose so much of what made them who they were."

Research suggests more than 90% of people with dementia develop at least one dementia-related behavior, says Elizabeth Edgerly, senior director of community programs and services at the Alzheimer's Association, who resides in San Jose, California. She says these behaviors often have serious consequences for the patient and caregiver.

"These symptoms cause considerable caregiver stress and may lead to other medical complications and earlier placement in long-term care facilities," she says.

Common behavioral, mood and personality changes include irritability, aggression, depression, apathy, agitation, anxiety, mood fluctuations, wandering and inappropriate behaviors, according to the Alzheimer's Association. Some people also experience psychosis, with symptoms such as paranoia, delusions and hallucinations. Psychosis is particularly common in Lewy Body dementia.

Edgerly says these shifts primarily occur because brain cells deteriorate as the disease progresses, diminishing a person's ability to make sense of the world.

"This deterioration alters a person's ability to process, integrate and retrieve new information," she says, adding that many dementia-related behaviors are reactions to environmental stimuli or current frustrations.

"These behaviors are a form of communication and often are triggered by relatively minor events," she says.

She continues that the person may be uncomfortable, anxious, confused or have a need, such as having to use the bathroom. As it becomes harder for them to communicate, they may act out.

Additionally, neurological changes can directly affect mood, personality and behavior since the brain is the locus of control for these and various other functions, says Dakari Quimby, clinical psychologist for HelpGuide Handbook and assistant director of outreach and prevention services at the Keck School of Medicine of the University of Southern California in Los Angeles.

"Understanding that the person with Alzheimer's or dementia is not acting this way on purpose can help," Edgerly says. "These behaviors are not intentional; they are disease-related."

If your loved one's behavior or mood has changed, take notes and speak with their doctor, says Nancy Treaster, co-founder of The Caregiver's Journey, who resides in Johns Creek, Georgia. Although it may just be a symptom, it could also signal an underlying medical issue, like a urinary tract infection, depressive disorder or a medication side effect.

"Document potential triggers (time of day is common) and what strategies worked or didn't work," she says.

Besides helping your doctor reach a diagnosis, this can give other caregivers a valuable playbook, she says.

Additionally, caregivers and other experts recommend the following.

Educating yourself about your loved one's diagnosis can help you understand their perspective and prepare.

"It may seem scary to look into your future, but it will help you plan," says Jennifer Fink, volunteer with the Alzheimer's Association and host of the Fading Memories podcast, who resides in Auburn, California.

"Dealing with changes on the fly will always happen, but if you can be a little bit prepared, it'll benefit both of you in the long run."

Fink recommends the Alzheimer's Association's local and virtual courses, as well as Alz Authors, a compilation of books, blogs and other resources on Alzheimer's and other forms of dementia founded by caregivers. You can find additional resources at the University of California Los Angeles, the University of California San Francisco, Alzheimers.gov, and the Bright Focus Foundation.

When caregivers encounter dementia-related behaviors, the first step should be to try and understand what is triggering them, Edgerly says. To do so, she recommends asking the following questions:

• What is the person trying to communicate?
• Is the person in pain, cold, hungry, sad or bored?
• Is the person bothered by something in their environment?
• What is the emotion they may be expressing? Are they lonely or afraid?

Sometimes, removing the trigger — such as an environmental stimulus — or reassuring the person that you're there for them can help minimize the behavior, Edgerly says.

"The key during any stage of the disease is to meet people where they are," she says. "Alzheimer's affects individuals differently. The goal should always be to provide 'person-centered' care grounded in knowing the person. Knowing a person's likes, dislikes and preferences can help caregivers better understand what is triggering the behavior so you can take steps to address it in a way that is responsive to the individual."

Routines provide structure, familiarity and predictability, which are crucial for people with dementia.

"Setting up a predictable daily schedule can help reduce confusion and provide comfort and regularity for someone with dementia," Quimby says. "Keeping things consistent helps in reducing anxiety and behavioral challenges. Consistent activities create a familiar environment, which can ease stress and agitation."

Regular routines can also help people with dementia maintain a sense of independence, which can further reduce frustration, according to the Alzheimer's Project.

Moreover, integrating habits like daily morning walks and a consistent bedtime routine can help improve sleep and overall mood, which may help reduce problematic behaviors, Edgerly says.

Some behavior and mood changes, such as pacing or irritability, are challenging but not dangerous. Others, like wandering, can be. Quimby recommends creating a safe environment to reduce hazards.

"Modify the living space to lower risks and manage symptoms like wandering. Using safety locks and alarms and removing clutter can help prevent accidents like trips and falls," Quimby says. "A secure environment prevents accidents and can help you feel less anxious by avoiding emergencies from happening."

Because people with dementia can't process language as effectively, conversations can cause frustration and overwhelm. Aligning with the Alzheimer's Society, Quimby recommends using simple words and sentences, speaking slowly and maintaining eye contact.

"Make sure to give enough time for responses to avoid them from getting frustrated and causing misunderstandings," he says. "Adapting how you communicate to their changing cognitive abilities can make it easier to interact and decrease distress."

Using neutral or positive body language is also important, according to the Alzheimer's Society. For instance, having your arms crossed or hands on your hips can signify your frustration and feed into theirs.

Positive reinforcement for accomplishments and desirable behaviors is valuable as well, Quimby notes.

"Give praise right after the desired behavior and be clear about what they did well. The tone of your voice can be very comforting and reinforces the positivity of the interaction. Regular reinforcement makes these positive behaviors more likely to continue," he says. "Consistency also strengthens the association between the behavior and its reward. Trying these strategies can improve the quality of life for a person with dementia by creating more positive actions and interactions that benefit their well-being and your experience as a caregiver."

Sometimes, in the later stages of dementia, people forget the names and faces of those closest to them. They may also forget their age and become confused about their surroundings. In these heart-wrenching situations, it's important to stay calm, "meet them in their reality," and validate their feelings, Treaster says.

"When faced with situations like 'Who are you?' 'I'm Nancy' 'No, you're not,' resist your instinct to argue. Instead, pause, take a deep breath, and check your body language," says Treaster, whose husband has forgotten who she is after decades of marriage. "Don't argue, don't try to convince them otherwise, don't reason with them, and most importantly, don't take it personally. Your role is to diffuse what could become an emotionally charged situation."

Treaster instead recommends validating your loved one's feelings and listening non judgmentally. Sometimes, she says, you may need to fudge the truth to avoid upsetting them.

"When my father-in-law would say, 'I need to go home. My mom and dad don't know where I am,' I'd respond, 'Don't worry, they know where you are. They're expecting you to come home, but not until tomorrow,'" says Treaster, who also cared for her father-in-law. "When he'd question 'Tomorrow?' I'd confirm 'Yes, it's getting late tonight. It's dark outside. You're supposed to spend the night here tonight and then go home tomorrow.' This usually brought him comfort and made him say 'OK.'"

If you sense your loved one is frustrated, change the topic or redirect their attention, says Jenny Munro, a gerontologist at Home Instead, who resides in Omaha, Nebraska.

"If they are having trouble with a puzzle, for example, move on to something else like listening to music," she says. "Don't feed into their frustration."

Treaster says this tactic can also work when dealing with delusions.

"Once you've validated their feelings and provided reassurance, transition to a new activity," she says. "If someone claims their wallet was stolen, suggest looking for it together, then gradually shift to getting ice cream, turning on music, watching TV, walking the dog, or going to Walmart. The key is creating a smooth transition to something different."

Delusions can occur in middle or late-stage dementia, according to the Alzheimer's Association, and commonly involve believing an item has been lost or stolen. If this is a recurrent issue, Edgerly recommends duplicating the item and having several available.

"For example, if the individual is always looking for his or her wallet, purchase two of the same kind," she says.

Looking after someone with dementia can be demanding, so taking regular breaks and looking after yourself is essential, Quimby says.

"Avoiding burnout is vital as it impacts your ability to provide care," he says. "Your health is essential for maintaining your well-being and that of your loved one."

LeKrey agrees, noting the importance of physical exercise, a healthy diet, socializing and good sleep.

"I know this is easier said than done. You might not get to do these things every day, but you should carve out time for them," he says, adding that self-care looks different for everyone. "For some people … self-care could be going out on a bike ride, sitting quietly with coffee and the paper, perhaps working in the garden. The more you find the time to do whatever connects you back to yourself and what you need, the more you'll be able to show up for your loved one."

Quimby also emphasizes the importance of finding community and support, which may come in the form of friends and family, support groups and professionals, including counselors and other caregivers. Virtual and in-person support groups can be found through organizations like the Alzheimer's Association and the Alzheimer's Foundation of America. Your loved one's health care team may also be able to offer recommendations.

"None of us went to school for this. When my husband forgot who I was, it was heart-wrenching and difficult not to take it personally, especially when he would cry and beg me to help him find 'her,'" Traster says. "I had always promised to stay by his side through his dementia journey, and now he didn't know where I was. Finding a counselor and attending therapy helped me process these complex emotions and continue providing care."

LeKrey echoes this sentiment, saying that although caregiving can be a lonely journey, you don't have to go alone.

"I can't overstate how valuable and helpful it is to connect with others going through a similar experience — whether that means talking to a small support group or seeking advice from online community forums," he says. "Just know that there are people also going through a similar experience who really do understand and who can support you as you go through this incredibly challenging journey."

Kate Daniel is a freelance writer and award-winning journalist from the Pacific Northwest specializing in health and wellness, with a particular emphasis on mental health and nutrition. She's written for a broad array of publications, including HealthDay, Everyday Health, Lose It, Nice News, Get Me Giddy, and The Whidbey News-Times. You can find more of her work here. Read More