Are you in the throngs of overseeing a dementia patient who is refusing your care? If this is your reality, we know it can be frustrating for a caregiver, as well as frightening and heartbreaking if this is your parent. We want you to know that you are far from being alone in this difficult situation. Resistance to care and behaviors that look like stubbornness are counterparts to dementia!
What do you do when a dementia patient refuses care? The best starting place is to understand why a dementia patient might refuse care.
Why Dementia Patients Refuse Care
As we look at the symptoms of dementia and the multiple mental functions that are typically impaired, it gives us clarity as to why a dementia patient might refuse care.
In most of these situations, the dementia patient becomes confused, fearful, stressed, anxious, and this is what leads to resistance of care:
The patient may either not remember who you are (with either short-term or long-term memory loss), or why you are doing what you are doing. In many cases, the patient experiences memory loss without being aware of it.
The patient may be unable to express themselves. They may not be able to ask questions, and they might not understand what it is that they are supposed to be doing. The patient may be uncomfortable physically, and unable to tell you so.
Reasoning and judgment
The patient may still possess a level of independence. They may fully understand how to take care of themselves but may be unable to do so. They may have poor judgment. This can lead them to have differing ideas of how to care for themselves.
Dementia patients often suffer from vision changes. This ranges from deviations in their field of vision, detection of movement, contrast, color, reaction to light, as well as a loss of recognition of objects and familiar faces.
Mental aspects of decline combined with the uniqueness of each dementia patient (life experiences, personality, belief systems, etc.) can provoke your patient to disagree with your care and lead to refusal. It may look like this:
- The patient may not believe in eating certain foods (because of how they were raised, or perhaps religious beliefs).
- The patient may be more comfortable with a different waking and sleeping schedule (they may have worked a different shift during most of their adult life).
How to Approach Refusal of Care
At Sundara, we love to ask this simple question—what would we want for our parents?
We believe in an environment that provides simplicity, and that means less confusion and fewer complications for the one that is being cared for. This means that we focus on what matters, and the aspects of ‘what matters’ to us is principle to how any caregiver should approach refusal of care.
Use your patient’s denial of care as a tool that helps you to provide better support. The more that you know your patient as an individual with personal wants and needs, the more they will open up to you with discomforts and other things that you need to know as a caregiver, such as if the patient is experiencing bodily pain.
Proactive and consistent engagement and communication
Communication opens the gates to understanding how any dementia patient feels, which allows us to care individually, to understand, to be responsive, and to nurture based on what someone is feeling or experiencing. This is how trust is built, stress is diminished, and confusion is avoided.
Communication with a dementia patient requires clear and concise explanation and instruction. It may be necessary to repeat yourself several times. It may be necessary to rephrase until your patient clearly understands.
Engage and communicate with the patient’s family members. This enables you to work with an alliance that helps you to better understand your patient with dementia, and it empowers you to build better bridges of communication and cooperation.
Ask open-ended questions.
If the dementia patient is refusing care, such as food, consider asking, “I understand that you may be missing your kitchen. If you were preparing your own food, what would you like to have on your plate?”
If your patient resists medical care, ask, “I know you want to feel well. So, if the dispensing of this medication were up to you, what would you do for yourself?” Or consider asking, “I know you really like your doctor. What can you do to follow his/her instructions so you will feel well?”
Do not ask too many questions at a time, as this can lead to confusion and irritation. Take your time and do not apply pressure.
You bolster your patient’s mental health, despite dementia, when you form a trusting relationship. When you reach a level of trust, your patient will openly answer your questions because they know you have their best interests at heart.
Be patient and take it slow.
When you display patience, the one that you care for is given the gift of time to think, to put words together, and to express (through words, gestures, or body language) their needs or wants to you. Not only does this help you to understand where your patient is coming from, but it also gives your patient a sense of autonomy and self-worth.
Patience also means you do not argue with a dementia patient. Listen attentively, and this may mean that you move on from particularly trying subjects for the time being and approach the topic later with a different strategy designed around your patient’s inherent wants and needs.
Help from others
Asking for help from other caregivers can be the key that unlocks a patient’s refusal of care. Sometimes you are not the right match for the patient, and the dementia patient may not want to, or may not be able to, express that to you. If the dementia patient is your parent, consider bringing in some support. Ask the patient who they might prefer as a caregiver.
Keep in mind, sudden changes in environment, or a shift in scheduling or routine, as well as a change in caregiver(s) can create stress and add to a dementia patient’s anxiety. This added stress can also impair your patient’s reasoning and judgment, and lead to refusal of care.
Respite for Caregivers
We all need a little help from time to time.
Whether it be a few hours a day, or a few days a month, if you are in the Austin or Round Rock, Texas area, we offer a dynamic Respite Program designed to give caregivers a needed and welcome break.
We would love to talk with you about your respite needs. You can contact us by phone or email or make an appointment online. Your questions are welcome!