What to Do if a Parent with Dementia Refuses Help?

As our loved ones grow old, some may start to show signs of dementia and cognitive decline.

When your parent starts to refuse care and help, do not nag them, make them feel bad, or give them ultimatums for compliance. These are the opposite of what they need.

Emotionally, this will be a hard pill to swallow for both parties. There are ways though, to cope with their refusal. With an effective strategy, you may even be able to turn refusal into an agreement. How to handle this is just as important as to understand why.

Why is this happening?

There are multiple reasons a person with dementia may not comply. They may communicate this non-verbally or verbally. It is essential to understand why they may resist, or flat out refuse.

One example may be that they do not understand requests due to cognitive decline. Your demands could also conflict with their standards and preferences. It may be as simple as feeding them something they do not like or attempting to send them to bed when they are not tired.

They may feel that the tone or manner they are spoken to is rude and demeaning. This refusal can feel like a last-ditch effort to retain some control over your parents’ lives. They may also perceive the environment as something else than what it is. A shiny floor to them may seem wet and dangerous. Pushing them beyond their limits can, over time, ruin the trust between parties. (Scie.org)

Understand that aging is scary

Many times the usual reaction is to suggest that someone in decline should go to an assisted living facility or seek home services. Seniors who have dementia are sometimes aware of their slump and maybe afraid. They may show anger as a response to this change in their life. Even though they may be mindful of the difference, they may not understand it. Their children may have a hard time empathizing with the situation.

Function loss is challenging to handle. It’s best to provide gentle reassurances to reduce fears. Calm environments will keep them less frustrated and may fight feelings of helplessness and anger. It’s not uncommon for your loved one to refuse care in the beginning.

Make them feel like a whole person with value. Empathy, respect, and validation go a long way to providing comfort and care for your loved one during this time. (SeniorLiving.org)

Accepting aging is the most difficult thing anyone can do. Coupled with diminishing capacities; loss of independence is a painful thing to manage. Understanding how they feel will make conversations about care in the future much easier to handle.

Compassion and facts are crucial to talk about assisted living and home care options. Pictures of possible homes and caregivers can bring peace of mind and make the process much more comfortable for all those involved. (HomeCareAssistance.com)

Refusing food

Sometimes those with dementia will refuse food. This is, of course, something to take seriously. There are a handful of reasons our loved ones with dementia refuse food.

It may be that they have difficulty managing cutlery. They may be unable to recognize food. Their decision-making skills may have deteriorated. If it becomes severe, consult your doctor about feeding options. (Scie.org)

Refusing medications

Sometimes an older person with dementia may refuse medicine. It may be more than just a cognitive decline. They may dislike how the medication makes them feel. It is best to make sure that all medication prescribed has clear benefits and that they, within reason, agree.

Sometimes they may forget what the medicine does and will refuse to take it. It is in these moments it’s best to clearly describe what they are taking and why. Someone with dementia may not trust their staff. Lack of trust highlights how vital understanding and empathy are when building a relationship during the beginning of the transition. (Scie.org)

What is reasonable?

You may find yourself finding their refusal unacceptable. It will be essential to examine your standards as to what is a reasonable denial and what puts your loved one in harm’s way.

Refusing to go to bed because they do not want to would be an example of a reasonable refusal so long as no one is hurt. Rejecting help with hygiene to the point of harm to one’s health may require more consideration. Your standards will have to be adjusted. You will not win every battle, and that’s okay. (Scie.org)

Stick it out with them

Pride may also stop them from accepting help. They may believe they are just fine on their own. This struggle may feel like an adolescent reversal for your loved one. Regardless, stick with them. Some reactions may consist of yelling, walking out, and throwing fits. This can stress anyone out. However, those actions are not enough to give up on them. Try to meet them in the middle where you can. (SeniorLiving.org)

Seek cooperation from your parents’ doctor

It is important early in the process to obtain the cooperation of their doctor. Without your parents’ permission, the doctor will be unable to discuss medical affairs. If you’re unable to get permission, you may still be able to communicate with the doctor.

One of the ways you can interface is to write a letter to the doctor. If things become out of hand or your parent is becoming abusive and erratic, a signed letter from your family may allow the doctor to consider an appropriate evaluation. The doctor may even find luck in persuading your parent. (Forbes.com)

Strategies you can implement

There are some actionable steps you can take to minimize issues with your loved one during this confusing and challenging time.

Start early

Start having conversations early, before cognitive impairment. “Where would you prefer to grow old at?” “Will you stay if someone transports you for your grocery shopping and other sorties?” Will you stay if you have household help?” Discuss future caregiving options. An ounce of prevention, a pound of cure, will save you heartache. (Care.com)

Be patient

Open-ended questions allow your loved one time to answer. You may find yourself asking several questions to get to the bottom of behaviors, but be patient. Keep digging, sit back, and listen to them. At the very least, this strategy will make them feel valued, and with that, will come added benefits. (Care.com)

Ask simple questions

Ask one question at a time and keep them simple. When you need a direct answer, ask yes or no questions. It is crucial to be patient, but be firm if something serious is on the line. Simple choice questions like the color of a shirt work well. Hold up a visual cue, such as both colored shirts, to effectively communicate. (CaregiverHomes.com)

Avoid the power struggle

Don’t make ultimatums of your parents. Regardless of cognitive decline, no one likes dealing in ultimatums. Nagging and pushing your parents will only escalate the situation. With any relationship, warnings and nagging do more harm than good. (CaregiverHomes.com)

Offer options

Don’t take over the whole process; involve them. Include your loved one in caregiver interviews, hiring, and scheduling if they are capable. Choosing which days they will receive care can make your parent feel in control and valued. Explain to them the benefits they will obtain with these new changes. Whether it’s companionship, a ride to something fun, or a chance to engage in social activities, this will add dignity to their lives. (Care.com)

Prioritize problems

An effective strategy is to make two lists. One list is for your parents’ problems; the other is for steps you’ve already taken to solve them. Organizing your efforts into what’s useful and what isn’t makes it much easier to provide care and move forward. At the very least, it can help you manage your stress. (Care.com)

Take it slow

Do not rush the process. Your parent is probably already dealing with the stress and changes in their new reality. Start by introducing their caregiver over coffee or a walk. See if the caregiver is willing to join your parent in a doctor’s visit. Consider grocery shopping together with a caregiver.

Whatever strategies you attempt to implement, find a way to get your parent accustomed to someone else besides you. They will be more likely to accept the help if it’s not thrown at them all at once. An added benefit of this strategy is to decide if the caregiver is a good fit. (HomeCareAssistance.com)

Consider guardianship

There may come the point when your loved one is unable to make sound choices for themselves. A cooperative parent may not be as challenging with diminished capacities. A parent that refuses care beyond reason and becomes a safety issue may be too dangerous to themselves.

When this happens, a guardianship may become necessary for you and your family. If they are unable to sign a power of attorney due to incapacitation legally, consider guardianship. (Alzheimers.net)

Establishing emergency guardianship

You may have to establish temporary or permanent legal guardianship if your loved one is financially exploited. Sometimes, those with dementia are the targets of scam-artists. They take advantage of those with little support and family and through manipulation gain access to their funds. Sometimes, the perpetrators are caregivers or family members. Protect your loved one if you suspect anything like this is happening to them.

Another reason to establish emergency guardianship is that your loved one cannot make their own decisions. This is more common with a younger person in a traumatic accident, but it does happen on occasion to those with dementia.

In the case of emergency guardianship, a physician and judge will have to declare the patient unable to direct their care in any manner. After that, guardianship comes down to showing full commitment and capability of acting in their best interest. (Alzheimers.net)

Accept your limits

The most important thing you can do is honestly accepting where your limits lie. You will be unable to stay with your parents at all times and properly live your life. Unfortunately, with diminished capacity, bad things can and do happen. You can do your best to prevent them, but be fair to yourself.

Do not feel guilty if you are unable to handle every problem they face. This sounds like the opposite of empathy, but the reality is you are one person. Sometimes going without a meal or two can push an elder into accepting help or care. At the end of the day, you can only do your best. (Care.com)

Expert advice does help

Some seniors are so stubborn they will not believe anything you say. It is not until a professional doctor tells them the same thing you have said before, that they would consider it.

Experts come in all forms, from doctors, social workers, priests, and nurses. It is their credibility that can convince an elderly parent to accept assisted living or help from a caregiver. Experts can explain the benefits of receiving support and different treatments. Seek out and use these professionals as they can quickly change the mood of your loved one.

Merely speaking to an expert or professional can give a loved one the confidence in a correct answer. During this process, it is essential to utilize every tool and strategy you can. (SeniorLiving.com)

Final word

There is no catch-all answer for parents with dementia. There are ways to minimize your difficulties by starting early, being kind, and listening. This process will be equally, if not more, demanding on your loved one. Do not give up on them as they will need you now more than ever.

At some point, it is highly likely they will refuse the care they need. You will have to decide when a refusal is minimal or life-threatening. You will have to listen to them and dig deep to get what seems like a standard everyday information. You will also have to look out for yourself as neglecting yourself is a disservice. Seek out help, write down your problems, and handle them one at a time. Do not feel guilty and do your best. After all, it’s what they need.