What to Do When Those Living With Dementia Refuse Help: A Guide for Caregivers

By Mary Osborne
Sep 9, 2024

Key Takeaways:

Understanding the difference between refusal and reluctance is crucial for effectively managing the care of individuals living with dementia.
Identifying the underlying reasons for reluctance, such as cognitive impairments or physical discomfort, helps tailor a compassionate caregiving approach.
Adopting effective communication strategies and utilizing available tools and resources, such as getting incontinence supplies through insurance, can significantly enhance the caregiving experience and the well-being of those living with dementia.

Are you involved in the care of someone who is living with dementia? Have you ever attempted to help them get changed, bathed, or dressed, only to face what seems like a "refusal?"

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This scenario is shared across various care settings, including skilled nursing communities, assisted living communities, and memory care communities.

As we celebrate Assisted Living Week, it's an ideal time to delve into the complexities of this behavior and explore practical strategies to help caregivers manage these challenging situations effectively.

Understanding the underlying reasons for what is often perceived as a refusal and adopting helpful strategies and techniques can make a significant difference in the quality of care provided.

Are you involved in the care of someone who is living with dementia? Have you ever attempted to help them get changed, bathed, or dressed, only to face what seems like a "refusal"?

This scenario is shared across various care settings, including skilled nursing communities, assisted living communities, and memory care communities.

Understanding the underlying reasons for what is often perceived as a refusal and adopting helpful strategies and techniques can make a significant difference in the quality of care provided.

Jump To:

Understanding Refusal Vs. Reluctance

Underlying Reasons for Reluctance

Effective Communication Strategies

Tools & Resources for Caregivers

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Understanding Refusal Vs. Reluctance

Let's imagine a scenario: You're helping your loved one who has dementia or Alzheimer’s disease change out of their soiled clothes. You gently say, "It's time to change your clothes because they are wet." If they respond with, "No, I'm not wet; I don't need to be changed," it's easy to mark this as a refusal.

However, dementia affects the brain's ability to process awareness, meaning they might not even realize they need to change. So, is this a refusal, or is it reluctance driven by a lack of understanding?

Refusal is a conscious decision to reject assistance, while reluctance often stems from an inability to understand the need for help due to cognitive impairments. Recognizing this difference is crucial for caregivers.

Often, behaviors that appear stubborn or difficult are actually symptoms of the condition. Misinterpreting reluctance as refusal can lead to frustration for the caregiver and the person receiving care.

In various care settings, misunderstanding reluctance as refusal can increase tension and erode trust between caregivers and residents. By recognizing the true nature of these interactions, caregivers can adopt more empathetic and practical strategies to support their residents.

Underlying Reasons for Reluctance

There are many reasons for this reluctance, including cognitive impairments, physical impairments, emotional factors, environmental factors, and caregiver approaches.

Cognitive Impairments

Individuals living with dementia often experience memory impairments that can lead them to believe they have already completed a task. For example, they may resist changing clothes because they genuinely think they have already done so.

Physical Discomfort

Pain or physical mobility impairments can make daily tasks challenging. For instance, if the person has arthritis or another condition that causes pain, moving or changing clothes can be uncomfortable, leading to reluctance.

caregiver nurse brushing hair of male patient

Emotional Factors

Modesty and privacy are a significant part of refusals. A person living with dementia might feel embarrassed or uncomfortable changing in front of others, especially if they are not used to assistance from someone of the opposite sex.

Environmental Influences

The environment can trigger fear and anxiety. For example, if a person recently experienced a fall in the bathroom, they may associate that space with danger and feel unsafe performing tasks like showering.

Caregiver Approach

The manner in which caregivers approach the individual can significantly impact their willingness to cooperate. Using a direct tone and pointing out the need for help, such as saying, "I need to help you get changed because you are wet," can feel demanding and create resistance.

A more effective approach involves gentle encouragement and finding a creative solution to the problem without pointing out the problem. For example, saying, "Oh, it looks like [name someone they enjoy seeing] is coming to visit. Would you like to wear this outfit or this one today?"

Understanding these underlying reasons allows caregivers to tailor their approach, making it easier for individuals with dementia to feel comfortable and cooperative. This improves the caregiving experience and enhances the overall well-being of the person receiving care.

In the following sections, I will review some effective communication strategies, practical tips, and resources to help further address managing reluctance in individuals living with dementia.

Effective Communication Strategies

Communication breakdowns are a leading cause of frustration and challenging behaviors in dementia care. A communication breakdown happens when messages aren't shared effectively between people, causing misunderstandings and frustration.

If we want to experience less frustration as caregivers and allow the person living with dementia to experience less frustration, it's essential to understand what we can do to help everyone involved. Here are some strategies we can use to help make our interactions go as smoothly as possible:

Build rapport: When you greet the person living with dementia, always say your name and tell them about something you will be doing together for the day that they will enjoy. Sometimes, this involves better understanding the individual's likes and interests before you meet them. You can find this information from other staff members or family members involved in care.
Check your approach and tone: Use a calm and reassuring tone.
Simplify your instructions: Don't overwhelm them by giving them too much information at once. Simplify your instructions and break things down into simple steps, allowing them time to respond.
Use non-verbal communication: Your body language and eye contact go a long way. Make sure you are actively listening and tuning into their concerns and stories.
Don't point out their need for your help: Avoid pointing out their need for help. Instead, think of creative ways to motivate them to perform tasks. For example, if they need to change clothes, suggest a reason that would be motivating, like a new outfit from their family, a game of bingo with friends, or a visit from their grandchildren.

Tools & Resources for Caregivers

Caregivers can use tools and resources to make dressing and bathing easier and safer.

Adaptive equipment: Adaptive equipment, such as shower chairs or adaptive clothing, can make bathing and dressing easier. An Occupational Therapist can help you further in this area. An order from the doctor is required for an Occupational Therapist to assess safety in the environment, including equipment like shower chairs, toilet risers, and clothing to make life easier for everyone involved.
Incontinence supplies: If the person living with dementia experiences incontinence (bladder and / or bowel leakage), there are incontinence supplies that help manage their symptoms. Supplies like briefs and pull-ups allow for an extra layer of absorbency to help with accidents. Aeroflow Urology can determine your loved one's eligibility for incontinence supplies through insurance. Complete their Eligibility Form to check your loved one's coverage in under 2 minutes.
Professional support: If you are the Medical Power of Attorney (MPOA) and feel the person living with dementia can benefit from professional support to help with day-to-day tasks related to a decline in overall status, ask the doctor for an order for physical, occupational, and / or speech therapy (depending on the specific need).

Conclusion

Understanding the difference between refusal and reluctance, recognizing the underlying reasons for reluctance, and adopting effective communication strategies can significantly improve the caregiving experience and improve individuals’ quality of life and daily life.

Using the right tools and resources, caregivers can provide compassionate and effective care, enhancing the well-being of individuals with dementia.

Disclaimer

Information provided on the Aeroflow Urology blog is not intended as a substitute for medical advice or care from a healthcare professional. Aeroflow recommends consulting your healthcare provider if you are experiencing medical issues relating to incontinence.