What Do I Do if My Loved One is in Denial of Their Cognitive Decline? - Lizzy Care Guide

A very common theme in providing care for older adults, particularly those who are experiencing cognitive decline, is denial and refusal of care. This can manifest in many ways, from total lack of awareness, to “it’s not that bad yet,” to outright refusal to accept their condition.

The implications of ignoring cognitive decline and subsequently delaying memory care can be serious:

• Your loved one continues to carry out daily tasks that may be dangerous, such as driving or going out alone.
• Their diminished judgment may make them vulnerable to scams.
• They may be making their own and others’ lives difficult, as well as putting undue pressure on you or your family members.
• They delay the implementation of effective treatment plans, from specialized therapies to clinical trials.
• It may accelerate admission into a nursing home or senior care facility, even though this may not be what they want or what is best for them.

Lizzy Care is reframing what it means to live with and care for someone with cognitive decline, empowering families to make better, informed decisions about their loved one’s memory care. Here you will learn how to address denial and move forward to provide your loved one with the best care possible.

My loved one is in denial about their cognitive decline—what do I do?

Recognizing they are in denial is a great first step, as it mobilizes you and your family into action to ensure your loved one can receive the care they need. 

One of the most common things we hear from Lizzy Care families is that their loved one responds to their concerns with “I don’t need help yet.” This response in itself demonstrates how complicated denial around cognitive decline can be:

• Depending on the state of their cognitive decline, they may not have the full capabilities to understand it.
• They are fearful of what it means for their quality of life, as well as what it means for their family members.
• There is a stigma around receiving a dementia diagnosis and they don’t want to be treated differently.

Understanding where they fall on this denial spectrum will inform how you speak to them about their condition. It’s natural to be worried that you will upset or anger a person you care deeply about but dealing with the conversation as early as possible can make sure that your loved one still has input in what they want in terms of care, treatment, and support.

Preparing to talk to your loved one about their memory care needs

1. Speak with your family first.

• You’re all on the same team. You want to see your loved one thrive for as long as possible. You also want to be there for one another to provide calm and comfort. Remind each other of these shared goals as you move through this process.
• Confirm that the changes you have noticed have been noticed by others. You may need to keep a diary to track these changes and then bring it with you to share with your loved one.
• Align on how you want to communicate with your loved one. Agree on whether you want to discuss your loved one’s health together as a family or only one person. Then, plan ahead and leave adequate time.

2. Plan conversation starters.

• “Have you noticed the same changes in your behavior that I have?”
• “Would you like me to tell you what changes I have noticed in your behavior?”
• “Lately, I have noticed that you have been having trouble doing X or trouble remembering Y, and I am getting concerned. I’d like to talk to you about it, can we have a conversation?”
• “I/we are concerned about what happens if you have a medical event or if you need additional support. Can we talk about what you’re looking for as you age and how I/we can best support you?”
• “Could we talk about your wishes if you get to the point that you can’t live alone? We want to make sure we honor them.”
• “What kinds of events–if they happened in your life–might make you think it was time to get some support?”

Having the conversation with your loved one

• Create a calm and comfortable environment with no distractions. This should be an environment where you believe your loved one will be the most receptive and focused, likely in their own home, and at a time of day that best works for them.
• Go into the conversation without expectations. It may take a few conversations to get them to fully understand and accept moving forward.
• Talk in short sentences using a simple vocabulary but remember they are adults. Make sure you pause between thoughts to let things sink in and give your loved one a chance to respond. Be kind, gentle, and supportive, and consider what Lizzy Care’s memory care coach Darryl describes as The Approach to Yes.
  
  Imagine your conversation with your loved one as two people trying to solve a common problem rather than two people fighting over a decision.

Wrong way: “Dad, you need to move into a memory care facility. Your memory is getting bad, and it is making it hard for all of us.”

Better: “Dad, I want to talk to you about something. We’re concerned that your needs in the future may not be met if everything stays the same. We don’t want to do something that is not in keeping with your wishes.“

• Acknowledge that this is not easy. No matter how much you plan and how sensitive you try to be, your loved one may not be ready or willing to discuss the changes you’ve noticed. They may become angry or defensive. Don’t force the issue. You can return to the issue in a later conversation. 
• Reframe the conversation to be less about you helping them, but them helping you. There may come a time when they can’t help make these decisions together and it’s better to start putting plans in place now to ensure you can honor their wishes.
• Gently bring up the negative consequences of delaying care. You can use concrete examples of how their life will change if they continue to ignore their cognitive decline.
• Keep a good sense of humor. Bringing levity to a difficult conversation can help you and your loved one work through the discomfort more easily.
• Look out for non-verbal signs of anxiety or irritation. Dementia and memory conditions can affect how a person communicates. Your loved one may find it difficult to complete their thoughts, so be patient. Make sure that only one person is talking at a time and that you’re looking at your loved one when talking to them.
• Gain consent to speak with their doctor or ask if you can join them on their next visit. Having someone to take notes and ask questions will be beneficial for documentation and enable you to advocate for their care.

Enlist the support of a memory care coach 

“Decisions around major life choices often are difficult conversations to have,” says Darryl, a Board-certified health coach who was the primary caregiver for his wife for 13 years at home. “It helps to have a neutral party who can help families discuss communication strategies, express frustrations, and provide accountability for moving forward on a care plan.”

The memory care journey will have its twists and turns, and the problems that arise will never be solved overnight. One of the most important aspects of the coaching role is to be a guide and support you to make informed decisions as well as brainstorm strategies as this problem evolves. 

A coach can help you reflect on what is working and how you might adapt your tone and approach to meet the circumstances. Plus, a coach will help you create a personalized plan, keeping your loved one involved as much as possible to facilitate effective care.

My family is in denial of my loved one’s need for memory care—what do I do?

Similar to how you would approach your loved one, your family’s denial can be managed by:

• Treating them with compassion and empathy. Remind them of your shared goals and that you are all in this together. It is also encouraged that they speak with an objective resource, such as a coach or a therapist.
• Getting to the root cause of their denial. If their denial is rooted in fear, talk to them about what they are fearful of, and how learning more about the condition and the ways in which you can find effective care and treatment may alleviate that fear. If their denial is rooted in overwhelm, enlist them to be an active part of the process with set tasks and responsibilities, such as exploring the range of services available to bring into your loved one’s home.
• Communicating with them openly and frequently. Keep everyone on the same page with updates and developments in your loved one’s condition, which can be made easier with a shared tool, such as the Lizzy Care app’s Care Feed. This communal channel allows you to plan and organize care together, as well as address urgent safety issues, and whether any burden of care is weighing too heavily on any one family member. Life circumstances will change for family members, too, so it’s important to remain flexible and in constant communication.
• Be patient. Hopefully, with time, they will come around. If they don’t, you may need to create boundaries to ensure they are not impeding your ability to provide for your loved one.

What’s next?

Addressing your loved one’s denial of their cognitive decline will be a difficult task, but with the right planning and support, you will be able to move forward and get your loved one the care they need.

One of the most important aspects of this journey is not going it alone: Speak with a Lizzy Care coach who is an expert in memory care. You and your family will get personalized support and guidance, be empowered to broach these complicated subjects, as well as build a personalized plan that meets your loved one’s needs. With Lizzy Care, feel confident in making memory-care decisions that ensure your loved one has the quality of life they want and deserve.