People in the early stages of dementia are able to notice the changes that are taking place in both their brain and their body, which can be one of the most challenging aspects of the condition. They are aware that they are forgetting things more frequently and feeling confused more often, making it difficult for them to deal with many of the typical challenges of daily living.
These shifts are not only frustrating and disheartening, but they can also be rather frightening at times. This frequently results in patients declining care or assistance with activities they can no longer complete on their own.
This list is intended to equip you with several strategies to support them: whether they are a parent who has dementia and refuses assistance or a loved one who has the most common type of dementia, Alzheimer’s disease and is going through similar challenges. When dealing with people who are having a difficult time or who refuse your assistance, it is essential to do so gently and carefully.
Are you looking after a person with dementia who refuses your care? For a family member or caregiver, this can be frustrating and upsetting. This is a challenging time for you, and we want you to understand that you are not alone. Throughout my practice, I’ve noticed that reluctancy and resistance to perform daily tasks are common concerns I’ve helped to address. It’s important to be a good observer and further investigate any unmet needs that could be contributing to the refusal.
Read on to learn more about why people with dementia refuse help and how you can help them despite the refusal.
What should you do when a person with dementia refuses to be cared for? Understanding why the person might resist care is the best place to begin. Is there some sort of unmet need occurring? Maybe they are in pain? Maybe they are cold? Maybe the environment needs to be set up in a more safer, effective way to decrease the chances of refusal? Maybe the approach we are using is causing them more distress? The are all things to consider when we think about ‘refusals’ in dementia care.
Why Do People with Dementia Refuse to Receive Care?
When taking a closer look at the symptoms and the numerous mental functions affected due to dementia: we have a better understanding of why a person with dementia might refuse care.
In the majority of these scenarios, a loved one will become confused, afraid, frightened, and anxious; this is what causes a loved one to refuse the treatment that is being provided:
1. Loss of Memory
The patient may have either short-term memory loss, in which case they might not remember who you are, or they may not understand why you’re doing what you’re doing. Unfortunately, memory loss is a common symptom in certain types of dementia that the person may not even recognize in themselves in many circumstances.
2. Communication Challenges
The patient may not be able to communicate effectively. Those living with dementia may be unable to ask inquiries or understand what they are meant to be doing in the situation. It’s possible that a loved one is in pain but isn’t able to communicate this to you.
3. Logic and Judgment
Some degree of autonomy may still be available to the loved one. They may know exactly how to take care of themselves, but they cannot. As a result, they may be prone to making unsafe decisions. And hence, they may have varying opinions on how best to care for themselves.
4. Visual Perception
Vision problems are common among those who have dementia. This can manifest as changes in the person’s field of vision, the ability to notice movement, contrast, color, and responsiveness to light, as well as the loss of the ability to recognize familiar faces and objects.
Providing objects & items that provide some contrast can help with easier location of items & objects. For example, offering food on a plate that is a different color than that of the food can help with locating the food more easily.
5. Personal Tastes and Daily Habits
Every single one of us has a propensity to spend our lives following a series of routines. Some are necessary, but many results from personal preferences and decisions, such as the time we go to bed and the time we wake up, whether we get ready before we eat breakfast or the other way around and so on.
A person with dementia may have difficulty following a routine that is different from their own and may refuse to do so. This demonstrates that the individual retains a feeling of their own identity as well as their own autonomy.
Care services must be adaptable enough to accommodate the individual’s daily habits.
For example, if an individual living with dementia was always accustomed to showering first thing in the morning, they may associate showering with the first part of their day. If you try to change this routine and make showering in the evening, this may result in frustration and more confusion, just depending on the stage of dementia they are in.
Common Instances in Which Dementia Patients Would Deny Assistance
1. Personal Care Activities
Because taking care of oneself is a private endeavor, the majority of people will struggle to cope with their emotions if they require assistance with this task.
We may need to devise an alternative method to provide the individual with the necessary level of personal care, along with allowing them to do as much as they can on their own safely, offering our assistance and support as necessary. Therefore, it is essential to acquire as much information as possible regarding the individual’s prior way of life and their preferences regarding their cleanliness level.
It could be that the individual only showered standing up during the week, but they never missed their weekly Sunday morning bath. We should be aware of their specific routines, so we can take this into consideration when caring for that person. We also need to take into consideration the safety of this task, because they may not be safe to perform these day to day tasks in the same way they were able to perform in the past.
We can get a sense of each person’s specific care routines and interests by obtaining this background information and paying attention to the person with dementia.
You may make the transition easier for the seniors you care about by adjusting your routine to match theirs and asking them what they feel most at ease.
For example, because dementia results in impairment in certain aspects of cognition, the person with the condition is far more likely to experience accidents, incontinence, and problems using the restroom than someone without the condition.
This is an essential thing to keep in mind. Always put their safety first by speaking with an occupational therapist for suggestions for home safety recommendations including things including but not limited to: grab bars, shower chairs, and non slip rugs.
2. Food
People with dementia may experience difficulty eating for many reasons as the level of brain activity decreases. A loss of appetite, dietary aversions, trouble chewing or swallowing properly, and even difficulties using cutlery due to a lack of specialized motor skills are some symptoms associated with Alzheimer’s disease.
When you are cooking meals for a member of your family who has dementia, you want to also make sure it’s something they enjoy.
In order to encourage seniors with dementia to eat more during mealtimes, consider the following suggestions:
- To help them recognize flavors, include sweet flavors in their meals. If you are concerned about sugar, they do have sugar free alternatives like stevia or splenda.
- Rather than overcrowding a plate with various foods, serve only one type at a time.
- Don’t rush them; give them time to eat their meal. Some people may not even realize they are eating, which would explain why they require extra time.
- Before serving, always check the food’s temperature. They may have difficulty processing pain and temperature when food is served excessively hot.
- Keep an eye on their moods, and don’t force them to eat if they aren’t feeling hungry.
- Create a calm environment during meals and remove any noise sources that could provoke or distract the person.
3. Medication
The refusal to take their medication as prescribed is potentially a serious issue that needs further investigation. For example, someone can be reluctant to take their prescription because of unpleasant side effects they could not articulate. On the other hand, maybe their recommended drug isn’t working for them, and they feel much better without it. Make sure to communicate your findings with the physician as soon as possible when any medication refusal is taking place, so they can address this as soon as possible.
They may also refuse to take prescribed medications if they don’t comprehend or forget what they should be used for. Each time a patient is given medication, they should be given a clear explanation, using signs and phrases, if necessary, that they comprehend. If a person is taking a number of different pills, they may only be willing to swallow each one if they are reminded of its purpose.
If a person with dementia does not trust the service member administering the medicine, they are considerably less inclined to accept it. The need to develop relationships based on trust with each individual living with dementia is once again brought to light by this.
Consider the following suggestions for helping your loved one better regulate their medication intake:
- Be gentle with them, and don’t try to rush them towards anything.
- Avoid using logic when trying to persuade them and stick to simple, direct statements.
- In order to keep them from feeling overwhelmed, create a peaceful and tranquil setting
- Be mindful of any side effects they may be having from the drug.
- Watch out for anything that may be too much for them or cause them grief.
- If a person has difficulty swallowing their medication, speak to the doctor to see what alternative methods you can take.
4. Going to The Doctor
A doctor’s appointment may not be required for some people with dementia who may not want to go. You can find out what’s causing the refusal by taking the advice in the following paragraphs.
- Does this matter need to be addressed right away? In such a case, pick your battles and think about scheduling an appointment via telehealth instead.
- Try to find out what apprehension or fear is. It’s possible that your loved one dislikes or is terrified of doctors. Be reassuring and refrain from speaking condescendingly.
- You may have to be more aggressive if the situation is dire to get an appointment. Acknowledge and respect the other person’s feelings.
5. Outside Caregivers
When caregivers are too busy to care for their loved ones, hiring professional caregivers is often a must. However, getting your loved one to accept a stranger who may also be taking care of intimate and personal requirements is the trickiest part of the process.
- Find a nice match for your loved one with the help of an agency. Most likely, some errors will be made along the way.
- Go gradually and start low. Begin with less time to give your loved one space to get used to the new schedule and make any necessary adjustments.
- As opposed to giving orders, ask the caregiver to present a few options to your loved one.
- If you have a problem with a caregiver, it’s best to give it a few weeks before making a change. You’ll be stuck in a never-ending cycle of new caregivers if you don’t.
- Consider spending the first few sessions with a caregiver with your senior loved one to help them adjust to their new surroundings.
How to Deal with Refusal of Care?
As we’ve gone through how to recognize a patient in need of help and the most common reasons people with dementia can be resistant, let’s discuss some suggestions to help.
Here are a few suggestions for handling the problem carefully and efficiently to get the best results and answers for them in the long term.
1. Make Them Comfortable
If you are looking for ways to help a loved one who still denies their condition – the first step is to ensure they are constantly feeling safe and comfortable. If they become difficult, it is obvious that an underlying issue is driving these feelings. We have to find creative ways to help with situations where they may be refusing.
2. Speak to Them in a Gentle and Calm Manner
In order to tell an aging family member that they require dementia care, there’s no easy method to do it. However, there are things you can do to make sure they don’t feel overwhelmed. When describing a situation, it’s crucial to use the proper words and convey the issue effectively.
People with dementia need to be spoken to with kindness and patience. When he or she is agitated or struggling, it is best not to raise your voice. If you’re having trouble expressing something to a close friend or family member, be patient and explain things slowly.
Maintaining a calm demeanor will make them feel more at ease with you in the future. An arm or shoulder embrace might help ease tension if the other person is comfortable with it.
3. Recognize and Take Into Account How They are Feeling
Even though it may be absolutely necessary for them to receive assistance for their self care tasks, they are nevertheless undergoing a significant adjustment. Accepting the fact that you are gradually losing pieces of your memory and how you function is not something that can be accomplished easily by anyone. Finding out what can serve as motivation, and using this in your approach can help out when it comes to your loved one demonstrating reluctancy to allow you to assist them with these self care tasks.
Telling the person they need assistance rarely works in dementia care, as reasoning skills are impaired, and become more impaired as dementia progresses.
4. Offer Simple Options And Instructions
Parents who deny they have dementia may struggle to understand and follow directions. Often times, what may look like denial is a term we call anosognosia. In addition, their problem-solving and day-to-day duties will become more difficult for them without your help as their memory deteriorates further.
If you find a loved one who is having difficulty comprehending, make sure to provide them with easy steps and basic direction from beginning to end. You’ll show them that you’re there for them and give them a sense of achievement as they do things independently.
5. Ensure That You Continue to Treat Them With Dignity
Perhaps you’ve stepped into the shoes of a primary caregiver for your aging parents. However, you should avoid treating your parents like children. People living with dementia do not appreciate their own children treating them like a child.
Regardless of the circumstances, your parents still want to be in charge of their own lives. Dementia does not entail that seniors are less deserving of respect. They should always be treated with respect, patience, and sensitivity.
6. Don’t Orient Them to Your Reality
If a parent or other loved one of yours is in denial about having dementia, there are moments when it may be impossible for you to assist them because they don’t believe they need assistance. Often times, what may appear as denial is a term called anosognosia, which is the lack of insight or awareness of deficits because of the damage being done to the brain.
If they don’t believe they have dementia (because of the damage dementia does, this could result in deficits in reasoning and awareness, and in this case, there’s no sense in orienting them to our reality (which we know is the diagnosis of dementia). If they are needing assistance with care and becoming more reluctant to perform tasks, we may have to consider changing our approach when addressing this. An example could be to enter into the situation with positivity and find a reason they should perform the task. Ex: “I have a new shirt I purchased for you here, I would love for you to check it out and let me know how it fits!”
The Bottom Line
One of the most difficult aspects of caring for a parent or a loved one with dementia is witnessing their decline. In addition, you may experience resentment or frustration. Recognize that these emotions are common, and finding creative ways to address these situations are key!
It is easy to assist your loved ones in accepting the care they require if you plan ahead and exercise patience. Because dementia can be exhausting on many fronts, including emotionally, psychologically, physically, and monetarily, it is very difficult to prepare for it.
Know that you are not alone in this. If you are struggling and need some extra assistance, find out what care options are available to help in your area. Although we are not able to stop or prevent dementia, we have the opportunity to select the care solutions that will be most beneficial to the requirements of our loved one.
Remember: Maintaining composure and assuring your loved one, which may be experiencing the same level of frustration as you are, will benefit both of you. Just try to put yourself in that person’s shoes and imagine what it would be like to lose your memory and the capacity to perform the most basic tasks required to live the independent life you are accustomed to.
References
- https://www.homage.sg/resources/how-to-convince-your-loved-one-to-seek-help-for-dementia/
- https://www.discoverycommons.com/senior-living-blog/how-to-help-someone-with-dementia-who-refuses-care/
- https://www.pacificangelshomecare.com/blog/when-dementia-patients-dont-want-help/
- https://sundaraliving.com/caregivers/what-do-you-do-when-a-dementia-patient-refuses-care/
- https://www.scie.org.uk/dementia/living-with-dementia/difficult-situations/refusing-help.asp
- https://www.joincake.com/blog/parent-with-dementia-refuses-help/
- https://info.careforfamily.com.au/blog/what-do-you-do-when-a-dementia-patient-refuses-care
