By William McIvor, Executive Vice President, Chief Development Officer, Seniorlink on Apr 27, 2021 3:58:02 PM
Caring for aging parents gives adult children peace of mind to know they are providing loving care. It also allows for them to make more memories and spend more time with parents in the final chapter of their lives. But caregiving is far from easy, especially when loved ones are diagnosed with dementia. Resisting care and general stubbornness are two hallmarks of dementia, and they are among the most common reasons that adult children look for help as caregivers.
If you’re unsure how to deal with stubbornness in parents with dementia, you’re not alone. Most family caregivers of loved ones with dementia struggle daily with getting them to the doctor, gaining their cooperation, convincing them to bathe and brush their teeth, and communicating with them. Read on for a comprehensive list of tips from other caregivers, medical professionals, gerontologists, and dementia experts. Tips are categorized and listed them alphabetically within each category, but are not ranked or rated in any way.
If you need help caring for a parent or a loved one with dementia at home, learn more about Seniorlink’s coaching and financial assistance program for caregivers of Medicaid-eligible friends and family members.
Tips for Communicating with Your Parent
- Avoid power struggles.
“Don’t push, nag or harangue your parents. Making ultimatums will only get their backs up, and yelling, arguing or slamming doors could seriously damage the relationship.”
– Laura Ellen Christian, 15 Expert Tips for When Your Aging Parents Won't Listen, The Arbor Company; Twitter: @ArborCompany
- Ask about your loved one's preferences.
“Does your loved one have a preference about which family member or what type of service provides care? While you might not be able to meet all of your loved one's wishes, it's important to take them into consideration. If your loved one has trouble understanding you, simplify your explanations and the decisions you expect him or her to make.”
– Mayo Clinic Staff, Caring for the Elderly: Dealing with Resistance, Mayo Clinic; Twitter: @MayoClinic
- Ask simple, answerable questions.
“Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.”
– Caregiver's Guide to Understanding Dementia Behaviors, Family Caregiver Alliance; Twitter: @CaregiverAlly
- Avoid overwhelming questions.
“It’s important to offer manageable choices with visual cues. Asking a questions like, ‘What would you like to wear?’ can be overwhelming — it presents too many options. Instead, hold up two shirts and ask, ’Would you like the shirt with the yellow flowers or the shirt with the blue stripes?’ This simplifies the choice and makes it easier to communicate with a person who has dementia.”
– Merritt Whitley, How to Talk to Someone With Dementia: 10 Expert Alzheimer’s Communication Strategies, A Place for Mom; Twitter: @APlaceForMom
- Be straightforward when speaking to your parent.
“Less information is sometimes more. When it comes to elderly parents who won’t listen, bogging them down with in-depth details about the day’s activities or why certain things need to happen is a mistake. Instead, give them the broad strokes of the situation and leave things simple. By leaving things straightforward and easy to understand, they’re much more likely to be okay with something they would typically show a lot of resistance to.”
– 10 Tips for When Elderly Parents Won't Listen, Colonial Home Care Services; Twitter: @ColonialCare
- Communicate with your parent assertively.
“Good communication can reduce frustration by allowing you to express yourself while helping others to understand your limits and needs. Assertive communication is different from passive or aggressive communication. When you communicate passively, you may be keeping your own needs and desires inside to avoid conflict with others. While this may seem easier on the surface, the long-term result may be that others feel they can push you around to get their way. When you communicate aggressively, you may be forcing your needs and desires onto others. While this allows you to express your feelings, aggressive communication generally makes others more defensive and less cooperative. When you communicate assertively, you express your own needs and desires while respecting the needs and desires of others. Assertive communication allows both parties to engage in a dignified discussion about the issue at hand.”
– Dementia, Caregiving, and Controlling Frustration, Family Caregiver Alliance; Twitter: @CaregiverAlly
- Don't fire off questions or ask complicated questions.
“First off, don't pepper elders with questions or complicated choices. Instead of saying, ‘Do you have to use the bathroom?’ say, ‘We are going to the bathroom.’ If the word shower upsets them, don't use it. ‘Come with me,’ you say, and you end up at the shower. If someone with dementia is frightened, acknowledge it and say, ‘You are safe with me. I'll protect you.’ After they're calmer, you can try to get them to do something. The one question that people with dementia often respond to is this: ‘I really need your help. Can you help me with this?’"
– Stacey Burling, They're Not Just Stubborn: How to Get People with Dementia to Participate, Philly.com; Twitter: @phillydotcom
- Use non-verbal cues to facilitation conversation. “The challenges of communication evolve as the disease progresses. You will likely find that nonverbal communication with your family member or friend — such as touch or the comforting sound of your voice — will become not only important but also meaningful.”
– Alzheimer's and dementia: Tips for better communication, Mayo Clinic; Twitter: @MayoClinic
- Evaluate your attitude.
“The problem at hand is that your loved one is resisting help — but [director of programs at the Los Angeles Caregiver Resource Center Shawn] Herz says you may be contributing to the situation by telegraphing your anger, resentment, and frustration through your body language. Many caregivers are not aware of the power of nonverbal communication even with dementia patients, she says.”
– Madeline R. Vann, When Dementia Patients Resist Help, Everyday Health; Twitter: @EverydayHealth
- Focus on the positives.
“Discuss what activities they can still do independently. Perhaps they are still able to prepare their meals or do the laundry. List all the normal activities they can manage, but then have them tell you what is starting to become more difficult, like paying the bills or climbing stairs. If they can admit some problem areas, then you may be able to reach a compromise.”
– How to Deal with Elderly Resistance, C-Care Health Services; Twitter: @CCareHealth
- Listen more than you talk.
“Listen more than you talk. A good idea in almost any situation and particularly useful when with your parents. How will you know what is bothering them (and making them stubborn) if you don’t listen, no matter how trivial the conversation. They may be trying to tell you something without telling you. Sometimes you’ll have to read between the lines.”
– Trick and Tips For Dealing with Stubbornness In Seniors, Assisted Senior Living
- Pay attention to what your loved one is attempting to communicate through stubborn behavior.
“While understanding dementia begins with knowing what to expect, it continues with knowing what prompts these behaviors. As soon as you can identify what prompts the behaviors, you will then able to deal with them properly. Generally speaking, these emotions can be triggered by almost anything. The most powerful trigger is the brain, since it’s the main source of the disease. However, stimuli from the environment, your loved one’s health, or his or her medication can also contribute. Other times, patients may be more prone to these behaviors simply because they are not feeling well or even because of an unfamiliar activity. For many, these behaviors are the only way they remember how to communicate.”
– Nathan McVeigh, Understanding Dementia and Dealing with Difficult Behavior, Lotsa Helping Hands; Twitter: @LotsaHelping
- Talk less and use more visual cues when communicating with your parent.
“When someone has dementia, they tend to pay more attention to what they see, not what they hear. As humans, our instinct is to get information from what we see. Visual information becomes even more dominant as changes in the brain make it more difficult to understand speech. That’s why it’s necessary to reduce the amount of talking and use clear visual cues when you’re helping someone with dementia. This increases your older adult’s understanding of what’s happening and helps them cooperate better.”
– DailyCaring Editorial Team, How to Reduce Resistance to Care in Dementia: An Expert Demonstrates, DailyCaring; Twitter: @DailyCaring
- Use the appropriate body language when communicating with your parent.
“You may need to use some hand gestures and facial expressions to make yourself understood. Pointing or demonstrating can help. Touching and holding the person’s hand may help keep their attention and show them that you care. A warm smile and shared laughter can often communicate more than words can.”
– Dementia – Communication, Better Health Channel; Twitter: @BetterHealthGov
Tips for Gaining Cooperation
- Be flexible.
“People with dementia need to be treated as autonomous and competent people who have unique skills and abilities that can be helpful. They may, however, benefit from some accommodation for any challenges they may be facing due to fluctuating abilities.”
– Meaningful Engagement of People With Dementia, The Alzheimer Society of Canada; Twitter: @AlzCanada
- Validate, distract, and redirect.
“If your relative gets upset and acts out any time you try to help her get her dressed or bathed, there is a good reason: Tasks that people with healthy brains can do on autopilot can be completely overwhelming for those with dementia, who struggle to remember and master every little step: how to put an arm through a sleeve, pull on socks, button a blouse. Keeping things as simple as possible, by choosing clothing with few buttons or zippers, for example, can help, as well as calmly giving clear, simple instructions every step of the way.”
– Marisa Cohen, Behavioral challenges with Alzheimer’s: Tips for caregivers, Care.com; Twitter: @CareDotCom
- Be patient and distract your loved one instead of forcing him to do something.
“Do not force your loved one to do anything since this could lead to aggression. Try again later, after using a distraction of something he or she finds pleasant. Perhaps you could offer a walk, watching a favorite television show, listening to music, or feeding the birds.”
– Carol Duff, Caregiver Tips for Those with Dementias Alzheimer's Stubbornness and Uncooperativeness, Veterans Today Network; Twitter: @veteranstoday
- Be willing to compromise.
“If your loved one won’t shower, for example, will he or she at least agree to a sponge bath? What about washing their hair? What about simply washing their hands before eating? Sometimes compromise leads directly to a ‘yes.’”
– 5 Creative Ways to Gain Cooperation from a Senior with Dementia, Home Instead Senior Care; Twitter: @homeinstead
- Break the process of taking medication into steps.
“Resisting medications can be a response to feeling rushed, afraid, or confused about what they are supposed to do. Feeling a loss of control can also trigger resistance and anger. Try breaking the process down into steps, and reassuringly and calmly, explain what you are doing. Give them time. Any part of the process they can participate in should be encouraged. Perhaps you will need to pour the water into the glass, but they can pick the pill up from the table and put it in their own mouth. If they need assistance getting the glass to their mouth, gently provide that assistance.”
– Kathleen Allen, Refusing to Take Medications: Tips for the Alzheimer's Caregiver, BrightFocus Foundation; Twitter: @_BrightFocus
- Create a calm, quiet environment when trying to get your parent to take medication.
“When it’s time to give medication, start with a calm environment. Make sure there aren’t any loud sounds like TV or commotion like lots of people around. You could also try playing soft, soothing music. You should also be calm yourself. If you’re agitated, frustrated, or angry, they’ll be able to sense it and will also become agitated and less likely to cooperate. Take some deep breaths before you start and stay calm throughout the process.”
– DailyCaring Editorial Team, 11 Ways to Get Someone with Dementia to Take Medication, DailyCaring; Twitter: @DailyCaring
- Distract parents who stubbornly refuses to brush their teeth.
“Once again, the key is to keep things relaxed and casual. You do not have to make them entirely forget that they are brushing their teeth but introduce something which makes the process fun or more interesting. Over the years, studies have demonstrated the remarkable impact of music on dementia. Even in the late stages of the illness, many sufferers remember their favorite tunes and light up when they are played. This technique is definitely worth a try if you keep encountering resistance when it comes time to brush.”
– Dementia and Oral Health: How to Help Sufferers Care for Their Teeth, Carefree Dental; Twitter: @CarefreeDental
- Get creative to gain agreement from the patient.
“Some time ago a highly regarded colleague, Sharon Roberts, RN, performed a small study on bathing challenges in persons with dementia. She informed me that she learned one of the greatest methods to reduce resistance or refusal was simply to gain agreement from the patient. This often means the caregiver must get creative in order to identify a situation that might encourage patient agreement."
- Telling the patient they will/might have a family or clergy visit later in the day and therefore it would be nice to get freshened up.
- Taking the patient into the kitchen or garden, having fun, and getting obviously dirty. This blatant dirt can trigger the client to ask for the bath or shower.
- Honoring the preferences of the patient based upon their individual life story. For example, a patient might have always preferred a tub bath at night to relax and therefore will value the activity of bathing versus the task of getting clean.
– Kim Warchol, Tips to Reduce Bathing and Showering Challenges – A Therapist's Role, CPI Training; Twitter: @CPI_Training
- Give your loved one as much autonomy in daily tasks as possible.
“Much of the frustration in Alzheimer’s patients come from losing the ability to perform basic daily tasks. If you are caring for your parent, it may be based on their having taught you how to perform these tasks when you were a child. This loss of ability can lead to stubbornness when you try to step in and do the tasks for them. When possible, let your loved one perform intimate or basic tasks on their own. This can reduce stress and frustration for both parties.”
– How to Deal with Stubbornness in an Alzheimer’s Patient, Alzheimers Inspire; Twitter: @ALzDementiaHelp
- Provide conversational crutches.
“Stick to familiar, easy-to-understand topics, too. A person with Alzheimer’s or other forms of dementia is less likely to be confused if you talk about his favorite subjects or things he’s demonstrated he remembers or relates to well — the weather, what’s for lunch, the birds at the feeder, a ball game. Discussions that require abstract thinking or a great deal of concentration — politics and current events, for example — may prove too complicated.”
– A Guide to Alzheimer’s Caregiving, Caring.com; Twitter: @Caring
- Make accommodations to make bathing easier.
“The first step is to determine why they have stopped bathing. If depression is the cause, speak with their doctor. Therapy and medications can help. If modesty is a problem and the elder doesn’t want a family member helping them bathe, they may be open to having a professional caregiver provide bathing assistance. If they are afraid of the water (or slipping in the tub), there are many types of shower chairs, showerheads and other products that can help. If the person has dementia and is afraid of bathing, then you must be gentle. Don’t insist on a full shower or bath. Begin with a small request, like asking if you can simply wipe off their face. As they get used to this, you can gradually add cleaning other parts of the body. Be sure to chat with them during the process and let them know what you are doing as you go. Do your best to keep your parent clean, but keep your expectations realistic. Too much nagging is counter-productive, and at the end of the day, you may have to lower your standards and adapt your definition of cleanliness.”
– Marlo Sollitto, Dealing With an Elderly Parent's Bad Behavior, AgingCare.com; Twitter: @AgingCare
Respond to the Emotion.
“If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations.”
–Tanis J. Ferman, PhD, Mayo Clinic, Glenn E. Smith, PhD, Mayo Clinic, and Briana Melom, MA, LSW, Understanding Behavioral Changes in Dementia, Lewy Body Dementia Association; Twitter: @LBDAssoc
- Offer only the level of bathing help that is necessary.
“When bathing a person with dementia, allow the person to do as much as possible. Be ready to assist when needed but try to offer only the level of help necessary. In the earlier stages, the person may only need a reminder to bathe. As the disease progresses, he or she will require more assistance.”
– Bathing, Alzheimer’s Association; Twitter: @alzassociation
- Put medication in jam.
“Teepa Snow, an acclaimed dementia-care education specialist, reminds us that the sense of taste changes with the progress of the disease. Unfortunately, the ability to detect bitterness remains strong. This is one reason why it becomes more difficult to sneak medications into food. The other reason is that people with the disease can still detect texture… “What does Snow suggest? Jam. Not jelly, which is smooth, but sweet, lumpy jam. This is, in my opinion, sheer brilliance. It’s both sweet and textured. Most people who like sweets will not bulk at a spoonful of their favorite jam. If the pill is one that can be crushed, make it as fine as possible and then add it to a spoon of jam.”
– Carol Bradley Bursack, How To Get People With Dementia To Take Pills, HealthCentral; Twitter: @healthcentral
- Put the need for change on yourself instead of on your parent.
“When we want our parent to make some kind of change, make it our problem and take all the blame. If we’re trying to get mom to accept a home helper, think about pitching it as our need, not hers, such as, ‘Mom, I’m such a worry wart, I can’t help myself. I’m losing sleep over you not getting enough good food in the house. Please help me. I need you to put my crazy mind at rest. Could I ask you to try a person out to come in and shop and cook for you a few times a week? I’ll help you find someone. Please, for me?’”
– 6 Ways To Handle Stubbornness In Seniors, Alternatives for Seniors; Twitter: @Alternatives4Sr
- Rely on your family to determine how to handle your parent's stubborn behavior.
“Second, if your aging parent is not only refusing help but is clearly unable to care for himself or herself, you can call a family meeting and brainstorm about the best way to approach your parent. Two heads really are better than one. One adult child may be able to get through to Mom better than anyone and it's worth a try to make that person the kids' emissary. If everyone in the family and perhaps a best friend is willing to approach your parent, you may be able to get your parent to accept that help is necessary.”
– Carolyn Rosenblatt, "My Dad Has Dementia-He's Being Horrible to Me!", Forbes; Twitter: @Forbes
- Turn a no into a yes by stating it's on a trial basis.
“If you face resistance when starting in home care services or starting any new routine, stress that it’s on a trial basis or mention that it’s ‘doctor’s orders.’ Mom or Dad may be mad at you for taking him or her to the doctor, but once it’s over he or she may soon forget and move past the negative feelings. If you can get the person with dementia into a new routine centered on additional home care services, he or she may actually begin to enjoy the socialization and attention.”
– How Can I Turn a NO into a YES?, Help for Alzheimer’s Families; Twitter: @homeinstead
- Use bribery if it is warranted.
“Sometimes adult caregivers can view their elderly parents’ uncooperativeness as a type of temper tantrum. Realize this is not the case. Small children possess the ability to reason, which is why you don’t want to reward a tantrum. However, cognitive decline in seniors can lead to an inability to reason effectively. That’s why reward systems are A-OK when trying to elicit cooperation from an older adult. When you make a request you expect will be met with resistance, try adding a reward to it. You may be surprised to discover how eager your loved one is to please you when they think they’re getting something out of it.”
– 5 Creative Ways to Gain Cooperation from a Senior with Dementia, CaregiverStress.com; Twitter: @homeinstead
- Use the appropriate demeanor when trying to gain cooperation.
“A cheerful, calm, open and soothing demeanor of the caregiver helps ensure cooperation. Even extreme dementia behavior such as pacing, rummaging, and wandering should be met with serenity and compassion. This usually wins more cooperation from a dementia patient than anger or shouting, which add to the person’s mental burden.”
– Joy Intriago, Winning Dementia Patients’ Cooperation, SeniorsMatter.com; Twitter: @Seniorsmatter
Tips for Handling Outside Help
- Be prepared for a stubborn parent to refuse a non-family caregiver's help.
“Many times in-home caregivers’ best efforts are met with anger or even abuse dished out by the elder they are intended to care for. It is crucial for the family and hired caregiver(s) to determine the underlying reason for a senior’s lack of cooperation and find ways to remedy the situation. I believe that fear is the foundation of much of a senior’s reluctance and even disrespect for non-family caregivers. The presence of an outsider may suggest to them that their family can't (or doesn't want to) take care of their needs. It also magnifies the extent of the elder’s care needs, making them feel especially vulnerable. This combination of concerns can create the perfect storm, especially if they are prone to lashing out when angry. Of course, the family members who arrange these services get an earful, but the professional caregiver becomes the primary target for sending the message that outside help is neither wanted nor needed.”
– Carol Bradley Bursack, Coping with Seniors Who Won’t Accept In-Home Caregivers, AgingCare.com; Twitter: @AgingCare
- Change the narrative when hiring a non-family caregiver.
“You describe it as your problem, not theirs. You talk about something most parents don't ever want, which is to be a burden to their kids. You ask them to help you and ease your worry. If they agree to consider something, that is when you suggest the help you had in mind. You describe what would make you feel better, like hiring a worker to assist with bathing or grocery shopping, etc. Acknowledge that you still want your parent to be in complete control over the decision about hiring anyone. Offer to help research the best places to find a helper and the prices. You can also offer to help with the interviewing process.”
– Carolyn Rosenblatt, How to Handle a Stubborn Aging Parent, Forbes; Twitter: @Forbes
- Enlist the help of a doctor or the police when necessary.
“Stopping a strong-minded elder can be tricky when the elder refuses to listen to family, can't or won't accept the concept of being too impaired to drive and is stubborn about the issue. If your loved one is in this situation, enlist the help of the doctor when you can, or law enforcement when possible. You could be saving your loved one's life or that of others.”
– Carolyn Rosenblatt, True Story: The Prominent Dad With Dementia Who Refused to Stop Driving, Forbes; Twitter: @Forbes
- Offer options when hiring in-home care.
“If possible, include your parent in interviews or in setting schedules when hiring in-home care, says [Care.com senior care advisor Mary] Stehle. Let them choose certain days of the week or times of day to have a home health aide come. Emphasize an aide will be a companion for walks, concerts, museum visits and other favorite activities.”
– Elizabeth Pope, 9 Strategies to Help a Parent Who Refuses Care, Care.com; Twitter: @CareDotCom
- Work with a professional trained in helping adult children with aging parents.
“Talk to a professional trained to help people struggling with aging parents, such as a geriatric care manager (now known as an aging life care professional) or a senior care adviser.”
– Leslie Kernisan, Q&A: What to do if your aging parent becomes rude & resistant, Better Health While Aging; Twitter: @drkernisan
Tips for Understanding Your Parent’s Behavior
- Examine the behavior objectively.
“When your parent or other loved one begins to act aggressively, consider if their actions are really a problem. A problem behavior is one that can result in an adverse outcome for the individual, or someone else. For example, ask yourself – can the action cause harm to the person or someone else? While some behaviors may be uncomfortable to be around or perhaps disruptive or embarrassing, they may not truly be harmful. Try not to correct, intervene, or even unintentionally escalate a situation if it’s not necessary.”
– Top 9 Tips for Dealing With Aggressive Behavior in Parents With Dementia, Maple Heights Senior Living; Twitter: @MapleHeightsDC
- Avoid intervening when it is better to let things go.
“Some behavior can be embarrassing, disruptive or uncomfortable to be around, but may not actually be harmful. Avoid correcting, intervening or unintentionally escalating situations by knowing when to let some things go. If Mom would rather wear four layers of pants at a time and rummage through her closet non-stop, let her. Protect your loved one from harm and then allow some sense of freedom and control by creating space for your loved one to make their own choices when possible.”
– Mara Botonis, New Approaches for Dealing with Difficult Dementia Behaviors, Alzheimers.net; Twitter: @Alzheimersnet
- Include your parent in the process.
“Nobody wants to lose control of their life, especially someone who’s already concerned about losing independence. That’s why it’s so important to involve your parent as much as possible when you’re planning for their care. This helps them see you more as a partner rather than someone who’s swooping in to make changes. They’re likely to be resistant in the beginning, so it will probably take multiple conversations. As long as they’re not in immediate danger, try not to force changes too quickly.”
– 7 Steps To Take When Aging Parents Need Help, DailyCaring; Twitter: @dailycaring
- Carefully weigh decisions about tasks for a stubborn parent.
“Some sort of tasks are difficult to take help for. The person may feel bad about being cleaned/ bathed etc. This sometimes results in the person resisting help, even if the person cannot do the task alone. The person may even try to hit out. Find ways to relax the persons with dementia and to make them feel comfortable. Soft, soothing music can be helpful for many persons because such music creates a more relaxed mood, reduces agitation, and improves their cooperation. Softly talking to them about something they are interested in may also help to relax them/ distract them from the unpleasantness of the task being done.”
– Helping with Activities of Daily Living, Dementia Care Notes; Twitter: @dementiaDCN
- Depersonalize the behavior.
Suzanne Alexander, a social worker with the Mills-Peninsula Hospital Wellness Center in the San Francisco Bay Area, gives this advice on dealing with stubbornness and aggression: "First, depersonalize the behavior. You need to realize it isn't aimed at you. Your loved one isn't doing this to cause trouble. Second, see the resistant behavior as a form of nonverbal communication. Try to figure out what your loved one is trying to say, then address the issue. Often the resistance is rooted in fear, according to the Alzheimer's Association. For example, people with Alzheimer's may resist taking a bath because being naked and enclosed in a shower frightens them. They may feel humiliated by their loss of ability and react to this emotion when asked to do something they don't understand. In the earliest stages, they may become angry at any suggestion that they are no longer fully competent, because the reality of what's happening to them is too terrifying to acknowledge.”
– Beth Witrogen, Uncooperativeness and Alzheimer's, HealthDay; Twitter: @HealthDayEditor
- Identify the cause of the aggression.
“The most important thing to remember about verbal or physical aggression, says the Alzheimer’s Association, is that your loved one is not doing it on purpose. Aggression is usually triggered by something—often physical discomfort, environmental factors such as being in an unfamiliar situation, or even poor communication. ‘A lot of times aggression is coming from pure fear,’ says Tresa Mariotto, Family Ambassador at Silverado Senior Living in Bellingham, WA. ‘People with dementia are more apt to hit, kick or bite” in response to feeling helpless or afraid.’”
– Sarah Stevenson, Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems, A Place for Mom; Twitter: @APlaceForMom
- Keep in mind that parents with dementia lose vocabulary and have difficulty following conversations.
“With the progression of this disease, patients lose more and more vocabulary, and it becomes very hard for them to follow a complex conversation. That’s why, for you to be understood, it is important to use simple and short sentences, speak slowly and clearly, ask one question or give one instruction at a time, and use non-verbal cues. Thus, patients will find it easier to understand you and they will be more likely to cooperate and participate during care and activities.”
– Philippe Voyer, Communicating with People with Dementia: Avoiding Mistakes, Canadian Nurse; Twitter: @canadanurses
- Look through the stubbornness for clues about an underlying problem.
“Caregivers need patience and persistence to sort through patients' behavioral clues. They should begin by ruling out straightforward physical factors such as pain, injury, constipation, infection, wet briefs, tight or uncomfortable clothes, or a patient feeling too hot or too cold. A patient may provide clues about an underlying problem. In one actual situation, a patient complained bitterly that his foot hurt. In the emergency department, an assessment revealed a severe bladder infection. Following treatment, the patient said his foot no longer hurt. He had provided the biggest clue—that he had pain—and it was up to caregivers and health care professionals to find the source. Caregivers should review the events of the previous day to evaluate whether a patient is fatigued from lack of sleep or whether there are changes to a patient's routine or environment, including the presence of simple holiday decorations, for example. Change is the enemy of people with dementia.”
– Linda Conti, Managing Difficult Behaviors in Dementia, Today’s Geriatric Medicine; Twitter: @TodaysGeriMed
- Make the tough decisions.
“So I commiserate here, but what if your elder/infirmed parent is being stubborn about not taking their meds, not going to the neurologist for a diagnosis, not giving up driving when they’ve already had a couple of fender benders, or insisting on living on their own–only it’s not on their own–neighbors, friends, church members and you are there all the time and still, you worry about them falling or burning down the house not because you’re paranoid, but because it’s a valid concern. I know because my mom had Parkinson’s and what I thought was early stages dementia (turned out to be Alzheimer’s) when she was still insisting on living on her own. It took a village to keep my mom going, and I so appreciated everyone’s help, but it was wearing me out to coordinate it all and go over there all the time–and worry about her going to the mailbox and tripping, wearing a long, flouncy house robe (with shaky Parkinson’s tremors) and cooking something that could catch her sleeve on fire. And she was paranoid and believing that every squirrel that traipsed across her roof was a burglar. A call to 911 was a weekly thing.
“That was my situation, and while frustrating and worrisome, there are many horror stories of elder situations that have had catastrophic endings. So, what do you do when you want your parent to feel respected and you really don’t want to take away their independence, but you’re worried about them? Let them know you’d like to be their care/decision partner. Hopefully, you can get them to agree to a partnership. Do what’s right. Stop being a people pleaser. Reach deep inside you and find the resolve to make the tough decisions when you need to.”
– Carol D. O’Dell, How To Deal With a Stubborn Parent, Caregiving, mothering Mother and More; Twitter: @CarolDOdell
- Be aware of nonverbal communication.
“As people lose the ability to talk clearly, they may rely on other ways to communicate their thoughts and feelings. For example, their facial expressions may show sadness, anger, or frustration. Grasping at their undergarments may tell you they need to use the bathroom.”
– Alzheimer's Caregiving: Changes in Communication Skills, National Institute on Aging; Twitter: @Alzheimers_NIH
- Talk to your parent from their perspective. “One of the most common reasons why an elderly loved one becomes stubborn is because they don’t see your request from the perspective that you do. For example, if you have to administer medicine but they refuse, rather than trying to force it down, sit with them and explain the importance of taking the medication. Talk to them from a viewpoint that they would understand in order to get them to do what you want.” – Stubborn Aging Parents Or Misunderstood? 12 Experts Weigh In, Approved Senior Network; Twitter: @approvedsrnet
- Remember that your parent is still your parent. “Imagine your children treating you as a child. Would you react by feeling frustrated and stubborn? Placing yourself in their position may help understand the situation. Never patronize. Be respectful. Honor them as your parent.” – When Aging Parents Don't Listen, Bridge to Better Living
How to Deal with Abusive Behavior from a Parent with Dementia
Older adults may feel most comfortable around their family members and caregivers, so they feel safe to show every side of themselves, freely sharing their feelings and frustrations. Unfortunately, in some cases an elderly parent’s stubborn behavior can cross the line into physical or verbal abuse. Researchers estimate that between 30 percent and 90 percent of patients with dementia suffer from behavioral disorders, with symptoms such as anxiety, psychosis, depression, aggression, agitation, and sleep disturbances. An estimated 15 to 20 percent of patients with dementia develop violent behavior.
They may be frustrated about their loss of independence and the symptoms they’re experiencing, and they feel safe venting those frustrations to those closest to them. In these situations, they may not realize that their behavior is hurtful to their caregivers and family members. In some cases, a history of abusive behavior can become prominent later in life as dementia progresses, and in other cases, an underlying mental illness can lead to abusive behavior towards loved ones and caregivers. Personality traits that have always been present can also become more prominent later in life.
These situations can be particularly isolating for family caregivers who feel an obligation to shoulder the full burden of caregiving. Other family members may be unwilling or unable to assist with caregiving duties, and family members may not be receptive or understanding when a caregiver discusses the abusive behavior with them.
Caregivers should try not to take outbursts personally, although this is difficult in practice. Acknowledge your loved one’s feelings and pain, but also try to get to the root of the problem. Aggressive behaviors can be caused by a number of emotional and physical factors, such as pain, medications, hallucinations or delusions, boredom, loneliness, or even a loss of control. If you understand the factors contributing to the behavior, you can take steps to alleviate them.
If possible, remove yourself from the situation to give yourself and your loved one time to move past your anger and frustration. Every family caregiver should prioritize self-care to maintain their health and well-being, but this is especially important for those who are the target of abusive behavior.
Arranging respite care can give family caregivers a break from the day-to-day challenges of caregiving and can often give care recipients a new appreciation for everything their caregiver does for them each day. If the occasional respite doesn’t eliminate an older adult’s abusive behavior, it may be time to consider a professional in-home caregiving service or moving your loved one to an assisted living community or memory care community. Of course, it’s important to talk to your loved one’s healthcare provider before making any major decisions. There may be medications that can help reduce the symptoms they’re experiencing or other treatment options that can help to improve the situation for both you and your loved one.
Need help caring for a parent or a loved one with dementia at home? Learn more about Seniorlink’s coaching and financial assistance program for caregivers of Medicaid-eligible friends and family members.