Having Difficult but Crucial Conversations with Loved Ones with Cognitive Impairment

We have conversations with family, friends and others to exchange pleasantries, gather new information or confirm important facts. Connecting with others is an important part of our daily life, and can be a refreshing break from our other tasks.

When conversations have a specific purpose beyond just small talk, the message we convey becomes even more important. All the people involved in the conversation will have a stake in its outcome. Will the message be received as intended? Will the messenger provide thoughtful and welcome insight? Who will come away not feeling like a winner? These are the crucial conversations we face as caregivers that may be necessary, but difficult to begin.

Why we have difficult conversations

Let us think about the reason behind these crucial conversations. Many times, these discussions are needed to take action, change behavior, offer criticism and make essential decisions in different situations. There is a history of decision-making that influences each of us. Sometimes we know exactly what to say or do based on our own intuition. Our lifetime of personal values and experience guide the way. Decision making is also impacted by our ability to gather facts, talk over the situation with others and use logic.  

Many times, the need for crucial conversations arise because the person that is the focus for the conversation may have a cognitive impairment. Aging does not guarantee such an impairment, but according to research, around 11.7 percent of adults age 65 and older experience symptoms of cognitive decline. Cognition is our ability to acquire new knowledge and comprehend it. It involves thinking, remembering, judgment and problem-solving. If the reason behind this conversation is because we noticed a loved one is having a problem, the conversation can take on a new dimension, and may come across as a personal attack to the loved one being questioned. While the message is still important, what can we do to make it more tolerable and even accepted?

Pitfalls of having difficult conversations

There are pitfalls that can hinder good decisions and make those crucial conversations uncomfortable. Our emotions can easily complicate matters. If it is something we want to do, it’s an easier decision than if it’s something that we must do, and we feel more motivated to start those conversations. During our conversations, we may also struggle with feeling like our opinion is being ignored, which can lead the conversation down a frustrating and combative path that might eventually derail it.  

Information is also important, but too little or too much information can be overwhelming and complicate the situation. While it is good to bounce off our thoughts and ideas with another person, it is also important to separate out their opinion and the situation as they understand it. For loved ones with cognitive impairment, decision making, even those everyday decisions such as what to eat for breakfast or choosing between outfits to wear, can be overwhelming. When we pile on too many decisions, it can cause a loved one to experience information overload and result in decision fatigue.   

For a loved one with cognitive impairment, so many things are happening outside of their control that taking away their ability to make decisions can add to their stress and anxiety. However, we may still recognize that they may be having difficulty completing simple tasks. The effect their cognitive impairment has on their ability to remember, sequence steps of a task and retrieve information can result in a dangerous situation. So how do we honor a loved one and support their personal autonomy yet still keep them safe?  

Respecting a loved one’s ability to choose

When possible, we should:

• Include a loved one in decision-making in a manner that recognizes their limitations.
• Provide guided decisions by limiting choices rather than offering unlimited options.
• Know when the best time of day is for a loved one to be able to focus whether it’s after a nap or first thing in the morning. 
• Remember that a loved one’s values and preferences should guide decisions, rather than just our own.  

If we need to step in to make a change for the safety of not only a loved one, but potentially other people, the conversation will need to look different. Taking away the car keys involves a loss of independence because the restriction is imposed rather than willing, and can add to a loved one’s feeling that their life is not their own anymore. We can prepare for these kinds of conversations with some options that will allow a loved one to maintain activities that are important to them. For example, there are resources available for transportation, such as Lyft, Uber and GoGoGrandparent, in addition to specialized services for loved ones with cognitive impairment. Family members may also want to be scheduled in to provide trips not only to the doctor, but also to church, grocery shopping and visiting friends.  

Remember that we have all had to adjust in life. It is how we handle this adjustment that will help dictate our success.  

When families face challenging situations, emotions can run high and information may be misinterpreted. WeCare…because you do from the Benjamin Rose Institute on Aging supports both caregivers and their loved ones. Through discussion and relationship building, WeCare Care Consultants identify resources with you to guide the conversation and provide support. Understanding not only about a loved one’s diagnosis, but also looking at the capacity of a loved one, will help you formulate effective action plans to support yourself and your loved ones.