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Talking with a Family Member about Alzheimer's

Having a conversation about Alzheimer’s is never easy. A new survey from the Alzheimer’s Association found that 76 percent of Americans are concerned about offending and 69 percent worry about ruining their relationship if they confront a family member about observed signs of Alzheimer’s. With June being Alzheimer’s and Brain Awareness Month, the Alzheimer’s Association is encouraging families to talk about memory and cognition concerns. A big part of that effort involves educating oneself about the illness.

thirdAGE spoke with Ruth Drew, director of Family and Information Services of the Alzheimer’s Association, for some candid advice on talking with a family member who is showing signs of Alzheimer’s and what you can do to help them, and yourself, navigate a diagnosis and learn more about Alzheimer’s.

What’s the first thing that goes through a person’s mind when they learn someone close to them – usually a parent or grandparent – has Alzheimer’s?

A lot of people are in shock and denial. Many of us have a picture in our minds of what Alzheimer’s looks like, which may be the very late stages of the disease. It can be hard to reconcile that image with the vibrant, engaged person your family member may be. In the early stages, he or she may be walking and talking and living life pretty much as that he or she had before, and just needing help with a few things. For many, there is a lot of fear over what does this mean and what’s going to happen next.

Is there anything you can do to help quell those fears?

It helps to talk about what you’re going through. You can do that with family and friends, but sometimes, you may need someone else to reach out to: a trusted advisor or clergyperson or someone at the Alzheimer’s Association. And as soon as you are ready, it really does help to become educated. If you don’t know much about the disease and what to expect, let’s start with that. If a person is going to be in a caregiving role, it’s important to know and understand about person-centered dementia care – what that looks like and means planning ahead – knowing who’s going to be making medical decisions, talking finances and figuring out care progress is extremely helpful.

How do you prepare to tell a family member that he or she has Alzheimer’s?

We don’t want to hide a diagnosis. If it’s been determined that someone has Alzheimer’s, he or she should be told that. Do they have to be reminded on the hour and every day if they forget? No. But we do need to respect people and treat them with dignity and tell them of their diagnosis, as well as the family.

Why is it so important to have that conversation?

At some point, you’re balancing a person’s autonomy and his or her right to live life on his or her terms with that person’s safety and the safety of the community. This can be really tough stuff: How do you tell your dad, the one who taught you how to drive, that it’s not safe for him to drive the car anymore? That’s a much trickier conversation and family members struggle with how to bring it up. I know of one family where the mom gave a gift to her kids by saying, “I want to tell you this now, if you ever see signs of Alzheimer’s or dementia, I want you to tell me. Don’t protect me, don’t hide it from me, don’t gloss over it. I want to have a conversation.” I’ve talked to families where the person with the disease is the first one to know. They are very aware and have tremendous insight to what’s going on with them. I’ve talked to other families where they say, “We knew something was wrong, but mom never knew she had Alzheimer’s. Even when she was told, she didn’t believe it.” Self-awareness can be affected – that is a symptom of the disease. So we meet people where they are and then we and then we take the right next steps after that.

How can you successfully communicate with someone with Alzheimer’s – especially in the later stages of the disease?

Once somebody has Alzheimer’s, particularly people who are further into the disease, it really makes sense to enter their world a little bit. It’s not about trying to make sure they know what day it is and what’s the weather report. That may not be the most important thing for a person who has a damaged brain and short-term memory loss. Focus on having days where they are engaged in meaningful activities and they are safe and happy. That can happen through human connection and a sense of humor and meeting them where they are.

Any examples?

I know of a sister and sister-in-law caring for their father. The sister said, “When I go and talk to my dad, I just figure out where his mind is that day. You wouldn’t believe all the stories of his childhood that I’ve learned that I never knew before.” Her sister-in-law would try to relate to him as he had been ten or 20 years earlier, discussing grandkids and current events. He couldn’t follow or track that – it wasn’t of interest to him – so their conversations were not as productive. But his daughter was still able to have a really lovely connection because she would go to where he was. That’s the key to communicating with some with Alzheimer’s. You can’t make them be like they used to be. It’s up to us to be flexible and meet them where they are.

Should you share traumatic information with somebody suffering from Alzheimer’s or dementia?

I would tend to err on the side of telling people the truth, but not beating them over the head with it. They can receive the information, but you don’t have to go in every day to remind them of it. One example is of a father who had Alzheimer’s in the middle stages. His wife died and the family wasn’t sure if he would be able to understand what was going on at her viewing. But they thought, “Gosh how can we not? They had been married for over 60 years.” In the end, he was able to see her at the viewing and he knew what was going on and who she was. It was clear it was meaningful to him and to the family.

Of course, there’s always the flip side. Two daughters were so smart and caring and amazing with their mother. Their dad had died some years earlier but their mom would forget. They were distraught over what to do – they kept telling her but it was agonizing, because it was fresh news every time for mom. They even took her to his grave hoping it would help. She just sobbed and it was awful. They shared that “Daddy used to travel all the time.” They asked if their mother said, “When’s Daddy getting home, could we just say – oh he’s still on his trip?” They questioned if they were bad people if they were lying to their mother. But they were speaking in a way that makes sense to her – something she could understand. We have to change how we communicate and be able to see the world through their eyes.

Having patience and empathy for someone with Alzheimer’s isn’t always the easiest, especially when roles reverse and the child becomes the caregiver. How do we build a loving and welcoming environment for someone who most likely took care of us when we needed it?

It can be hard for family members when it’s your dad or mom – you want them to be their old selves. It’s very painful to realize these people have changed and the way they are today with this disease attacking their brain is different from the way they were before. If we can accept that, we can go where they are and connect with them in the way they are able to connect with us. When we go to them without expectation – not trying to quiz them or make them be the way they were before – but just being where they are right this moment, that opens the door for such rich connection, which makes for better moments and days for them and for us.

Any last advice for someone who is caring for a person with Alzheimer’s?

People feel so alone sometimes when they are dealing with this disease. It’s overwhelming to try and handle everything by yourself. No one should and no one has to – there is always help available. Oftentimes friends and family want to help. And if there aren’t friends and family, I always encourage to reach out to organizations like the Alzheimer’s Association. We have a 24-hour helpline that’s available – sometimes it really helps to talk to someone who gets it. On our website there is a very active online community so people can connect with other people going through the same thing. And we have even more tips and guidance on this and how to have these conversations because it is important to talk about.