Supporting a Loved One in Denial of Their Diagnosis
Caring for a loved one with a memory loss disorder, especially when they actively deny their condition, can be challenging. The early stages of dementia are marked by forgetfulness and confusion due to changes in the memory center and other thought processing areas of the brain. Emotional stability can also be affected, leading to anxiety or depression. Understanding how their abilities are changing is often difficult or impossible for a loved one. Given this, it’s no wonder a loved one may not seem to understand the illness they have. And some outright deny it.
This denial adds a complicated layer to the already challenging role of caregiver. Before delving into how to best support your loved one, we start with a bit more information to help you understand this challenging situation.
Understanding Denial
If your loved one says, “I don’t have a problem with my memory, I remember the important things,” there are two possible explanations. They are either “in denial” and using a psychological reaction to cope with an upsetting idea about their health or making a mistake due to a thought processing error. Let’s learn more about these options.
Being “in denial” is more than merely stating a fact is untrue. Often it is a coping mechanism and enables us to avoid the emotional reality or stress related to the event or situation. Whether your loved one is able to be “in denial” is directly dependent on which intellectual centers are being affected by the disease. If the disease is impacting thought processing centers involved in insight they may not be able to fully comprehend the impact of their symptoms or diagnosis.
Denial vs Insight: Lack of insight is the inability to process information and arrive at a logical conclusion. It is caused by the physical changes in brain anatomy and dysfunction caused by dementia. For loved ones in the early stage of illness, truly being “in denial” is possible. As the illness progresses, however, a loved one may not be “in denial” and blocking out the fact they have dementia, more likely they may no longer have the ability to learn that fact and understand it due to the damage from the disease.
As with many aspects of dementia, there are many exceptions to the rule. You might encounter times when their insight seems just fine, and other times when the lack of insight can be puzzling. They might acknowledge they often forget where they’ve placed their glasses but aren’t recognizing that they can no longer manage their finances. It’s important to note that while denial might lessen over time, lack of insight typically worsens as dementia progresses.
Adding to the complexity, another area that worsens over time is functional ability. For caregivers needing to support and assist a loved one who denies their illness or limitations, specific strategies are needed.
Approach with Compassion
Acknowledge their feelings: As we’ve discussed, denial often stems from fear, confusion, or embarrassment. Instead of confronting them directly about their memory issues, validate their emotions. For example, "I know it must be frustrating to forget things or feel like things aren’t the way they used to be."
Provide reassurance: If they express confusion, reassure them by calmly explaining the situation. For example, "It’s okay that you don’t remember, it happens to all of us sometimes."
Be patient: Understand that they may be embarrassed or upset about the changes they’re experiencing. Give them time and space to process the emotion.
Minimize reminders of the diagnosis: Start now to emphasize and focus on the present. Constantly reminding them they have dementia can exacerbate their denial. Focus more on how they’re doing today rather than how things have changed over time.
Use Gentle Redirection
Avoid arguments: If they deny their condition, don’t feel you must correct them. Keeping in mind that their brain does not process information as it used to, the “truth” may not be information they can comprehend. Arguing with them can lead to frustration for both you and your loved one. Instead, gently redirect the conversation or change the topic.
Create a "memory tool kit ": If they get confused about recent events or people, create a “memory tool kit” of photos or objects that can help jog their memory gently, without confronting the issue directly.
Setting up for Success
Support their daily routines: Establish clear, consistent routines for the day that match your loved one’s decision-making abilities. For tasks with more than one step, consider writing out instructions.
For example: Feeding the dog:
Stormy eats when you eat breakfast and dinner.
The dog food and scoop are in the green container by the refrigerator.
Put 1 scoop of food in the blue bowl.
Fill the water bowl each time you feed Stormy.
This can ease anxiety and reduce the impact of memory loss. Having a calendar or planner with the routine, in plain sight for your loved one, can foster independence and confidence.
Organize their living space: As the illness progresses, labeling drawers, cabinets, and rooms can help reduce confusion. A well-organized space will give them a sense of structure and minimize disorientation.
Consider technology aids: Devices that provide medication reminders, GPS trackers, or smart home systems can enhance their safety without feeling invasive.
Empower with Choices
Support their independence: Help your loved one plan ahead by choosing what to wear each day or what they’d like to eat. Make it part of the nighttime routine to plan for the next day. Write down decisions and review again in the morning. Even if they have difficulty, this sense of autonomy can be comforting.
Provide choices, not commands: If your loved one has difficulty expressing what they need, help them by providing choices. For example, "Would you like soup or a sandwich for lunch?" This can make them feel in control while also maintaining their dignity.
Encourage Social Interaction
Engage in meaningful activities: Cognitive stimulation through games, light puzzles, or hobbies like drawing or gardening can be comforting and helpful. Activities can also provide a sense of accomplishment and further cultivate the use of brain healthy activities into their routine.
Foster social connections: Encourage visits from friends and family or involve your loved one in community activities, even if they’re just observing. Maintaining connections can help combat feelings of loneliness and isolation.
Keep Conversations Clear
Use clear language: Speak slowly, one point at a time, and be patient while they process information. Avoid overwhelming them with too much information. When discussing their condition or other important matters, keep it short and to the point.
Monitor for Changes in Behavior
Stay alert to signs of stress or anxiety: People with dementia who have not come to accept their diagnosis may be more likely to become agitated or anxious when they feel overwhelmed or confused. Look out for these signs of distress in your loved one and respond with calmness. Consider implementing deep breathing exercises, gentle stretching, or listening to calming music as part of their daily routine when these signs arise.
Remember the Person Beyond the Disease
Preserve their identity: Though your loved one’s memory may be fading, they are still the person you know and love. Try to focus on their interests, personality, and abilities. Engage them in activities that bring them joy and remind them of who they are.
Seek Support for Yourself
Join caregiver support groups: Talking to others who are in similar situations can provide comfort, new ideas, and emotional support. Whether in person or online, having a support network is vital for maintaining your own mental health.
Take care of yourself: Caregiving can be exhausting. Make sure to take breaks, practice self-care, and reach out for help when you need it.
It’s important to remember that dementia is a progressive condition, so the changes in your loved one’s abilities will evolve during the course of the illness, and you two will have to face these challenges together as they arise. Be gentle with yourself too, as caregiving is both emotionally and physically demanding. If possible, collaborate with other family members or a professional caregiver to create a team of support.
Remember, your NAN Navigator is here to support you and is available to guide you through the process.
