Dementia Conversations Program Recap

Thank you to Robyn Kohn and Debby Montone from the Alzheimer’s Association, Greater New Jersey Chapter, for going over some of the tough conversations that must be had with someone suffering from Alzheimer’s or other dementia-related conditions.  As someone’s condition worsens, they may start to neglect their health by refusing to go to the doctor or may jeopardize other peoples’ lives while driving.  Many of the difficult conversations revolve around facing the realities of the diagnosis, especially when it comes to someone loosing their independence.  Therefore, having the right tools to approach those delicate conversations can help achieve better outcomes with the least amount of conflict.

Tips for Successful Conversations

There are a few general tips that can be used across the many types of conversations that one might have with someone suffering from Alzheimer’s or other dementia-related conditions:

• The sooner, the better – The earlier you can have the difficult conversations, the better for a multitude of reasons.  The person will be better able to make rational and informed decisions when the disease is at the early-stage, leading to agency in making those tough decisions.  Additionally, they may have more options available to solve some of the issues they are facing, such as in-home care rather than an assisted living facility.  This can also help everyone plan better for the future and tackle eventual problems with more confidence.
• Develop a plan for using finesse – Having these difficult conversations can require some planning and tact.  Knowing how to approach someone in a positive way, using the right words, and framing topics in a way the person best understands can be the difference between defiance and acceptance.  Therefore, it is very important to understand your loved one’s moods, quirks, special interests, etc. to best use them to your advantage.  For example, conversations and appointments might be best first thing in the morning when their head is clearest and most rational; perhaps they trust in authority figures so it might be best to have a doctor or “expert” in a certain field speak with them.
• Take notes about the changes you see – Being able to back up your assertions or recommendations with facts based on recorded observations (first or second-hand) might be enough to convince someone of making an important change in their life.  You may also be able to spot patterns that can identify areas of concern that need to be discussed.  These notes can also be very helpful to medical professionals in establishing a diagnosis or developing a treatment plan.
• Involve others as needed – As mentioned before, it may be necessary for others to be part of the tough conversations in order to achieve the best outcomes.  Whether that comes from doctors, lawyers, financial planners, social workers, family members, or friends, your loved one may listen to or become more accepting if more people or the “right” people are involved in the conversations.  This is where the Care Team becomes crucial and will probably consist of persons from the family, medical team, peers or friends, co-workers, and representatives from community organizations or resources.

The Difficult Conversations

Let’s take a look at the 3 most difficult conversations and how we can better deal with them.

Going to the Doctor

One of the biggest and most challenging aspects of getting older is the uncertainly and fear of a medical diagnosis that will significantly alter someone’s quality of life.  This is particularly true when dealing with Alzheimer’s or other dementia-related conditions since there are no cures.  This fear can paralyze people and prevent them from going the doctor and can lead to a significant delay in receiving proper medical care and the all-important diagnosis.  However, continued evaluation and care is of the utmost importance for someone suffering from Alzheimer’s so making sure that person is routinely getting medical help is a top priority.

So how do we have conversations surrounding this topic?  Try and use words that are comfortable for the person; for example, instead of saying “We need to go to the doctor” maybe try “Let’s go have a chat with Dr. _____; it’s been a while since they’ve talked with you.”  You can make the conversation more general by suggesting that it is time for the person’s FREE Medicare Annual Wellness visit instead of focusing on a specific condition or symptom that needs to be addressed.  You can try using a “therapeutic fib” to convince them to go that might not be true, such as “We need to go to the doctor so they can refill your prescriptions.”  You may be able to pair the doctor’s visit with an enjoyable outings such as to the park or a favorite place to eat.  Lastly, invite family members to communicate concerns and questions to the doctor, who may be better able to convince a loved one to come and see them.

Time to Stop Driving

Driving can be a very difficult topic to address since many older people associate driving with their independence.  By taking away their ability to drive, you are taking away one of their last activities that they feel gives them any independence from care-givers and the disease.  How do you know when you need to have this conversation?  There are some tell-tale signs that someone is struggling with operating a vehicle, such as accidents, traffic tickets, scrapes on the vehicle, or an uptick in mistakes while driving.  If you start noticing these things, start documenting them as it can be helpful to refer to specific incidents to show that you are not just making something up to hurt them or take control of their life.

One of the best ways to approach these conversations is coming from a place a empathy; this will make it seem like you are focusing on your concern for them rather than trying to control their life.  Express concern for the changes you’ve noticed and appeal to their sense of responsibility and concern for others.  By framing the discussion around how their actions can impact others, it makes it less focused on what you want.  Have alternate plans for their transportation needs ready to alleviate any fears of being home-bound.  If needed, you may also want to incorporate the voice of an esteemed professional that they may trust, such as doctor or professional caregiver.

Legal and Financial Plans to Cover Future Needs

An early diagnosis of dementia can provide you and your loved with an opportunity to plan well in advance for future financial and medical needs, including legal documentation for things like power of attorney and medical directives.  Additionally, having these conversations as early as possible will allow your loved one to have the most agency in making those decisions; money can be a very large concern for older people so ensuring that they have say in what happens to it can go a long way toward ensuring their financial stability.  Start by explaining to them that you and anyone else who will be responsible in any capacity for their medical or financial care are all in this together and everyone is looking out for their best interest.

Begin asking questions regarding their financial and medical wishes and be sure to get all the appropriate documents together in one place for ease of reference.  If there is hesitation, frame it as this is something that everyone does as they get older.  It may be best to tackle one document or topic at a time so as not to overwhelm the individual.  It is also good practice to review these documents periodically in case their situation changes or to check for any frauds or scams, such as an outside caregiver controlling their finances.  It also may be best to try different times and locations (at home, someone else’s house, a lawyer’s or financial planner’s office) to make the individual the most comfortable and agreeable.

For More Information

The Alzheimer’s Association is a clearing house of information and resources for all things related to Alzheimer’s.  Check out their Resources page or their Community Resource Finder which can help you find financial planners, attorneys, doctors, support groups, and other community organizations of benefit.  If you have any questions about the presentation, please reach out to Robyn Kohn at rmkohn@alz.org.  You can view a recording of the webinar at https://youtu.be/oBKr0Nf4o8o.  Please click on the links below to download copies of handouts:

• Dementia Conversations Presentation Slides
• Dementia Conversations Tip Sheet
• Helpline Flyer
• Alzheimer’s Facts and Figures
• New Jersey Alzheimer’s Statistics