It is, as the saying goes, the most wonderful time of the year. But between all the jingle-belling and good cheer, for some, it’s also a season of anxiety, particularly when it comes to family gatherings.
There’s the awkward political conversations, the awkward career conversations, the awkward romantic conversations — and then there are more serious conversations. Like how to interact with loved ones who are living with dementia.
Karin VonKay knows this anxiety well. When her mother was diagnosed with dementia, VonKay became her primary caregiver. And for seven years, she was flying by the seat of her pants. She did the best she could, but as she puts it, she didn’t know what she didn’t know. After her mom passed away, Karin decided she didn't want anyone else to go through what she went through. She went online and discovered an organization called Dementia Friends.
Now, she volunteers as what Dementia Friends calls a Champion — VonKay does free trainings with caregivers to help them understand dementia, and how they can integrate better with the person they're caring for. She joined The Show to talk about a lot of what she teaches people is how to be good company.
Full conversation
KARIN VONKAY: What I really was missing was I didn't know how to communicate with her to make the best possible experience for both of us. I have learned now that we have to try and figure out what time zone our loved one is living in and that might be back 30 or 40 years ago. And what would have helped then was to know that so that I could have engaged her in conversations about things and just relax and let her go with the flow. Whatever she said that she remembered might not have been the facts, but that really did not matter.
SAM DINGMAN: I see. I see. So was there anything that you did instinctively that you have since discovered was a good and, and productive practice?
VONKAY: I never told her she was wrong about anything she said. Sometimes I, I would acknowledge what she said if she asked me to do something or get something I would repeat back. I understand that you want and then repeat it. I can't get that right now and maybe distract her with something else. Let's go for a walk in the garden.
DINGMAN: That makes me think about what you were alluding to earlier. This idea that something that can be very valuable in an interaction with someone who's suffering from dementia is to, it sounds like almost try to time travel to the moment you think they're in and operate from there.
VONKAY: You are. So right about that, you know, you, you have to be who the person thinks you are at that moment. You know, there is an example close to the end of my mother's life, I was visiting her in the dining room at the assisted living place and she thought I was her mother and I somehow knew to just go along with the program. And I tried to be kind and gentle and understanding because she, you know, she was so fragile at that point.
DINGMAN: You know, Karen, I'm so struck by what you're saying because in situations in my own life where I've been with a relative who has dementia, I didn't have the tools that you're describing and sharing right now. And the experience for me of recognizing that my grandfather say, didn't know who I was or didn't know who someone was, was distressing.
But if I'm hearing you right, if you can just get over the mental hurdle and meet them where they are, that distress will kind of fade because you'll notice that your grandparent in this scenario will become less distressed because they won't feel like you're challenging their sense of reality.
VONKAY: Exactly. Fixing and correcting are not options. The biggest thing that I emphasize among many other things when I do my Dementia Friends session is how we make our person feel. They may not remember the conversation, but you have been warm and friendly and loving and that's what they will remember, even if you have to perhaps do a, what we call a therapeutic lie.
For instance, she could be asking, you know, where's John? John was her husband and he died 10 years ago. Why not say John's not here right now? Let's go have a cup of tea. You see, because if we told her the truth, he's dead, don't you remember? She's gonna be upset that she did not remember and she's gonna grieve all over again.
DINGMAN: You know, this makes me think that if that person is already dealing with reduced physical capacity, confusion and difficulty moving around, interacting with things. If you are creating a difficult or upsetting emotional situation, you're just taking a bad situation and making it worse.
Whereas if you just focus on trying to provide a warm, comfortable, emotional interaction, if nothing else, it'll be some measure of relief from those physical challenges that they're having to navigate all the time.
VONKAY: It's important too, especially over the holidays to be thinking about how you will deal with things with your loved one. When you have family and friends coming in, that persons with any form of dementia experience a much smaller world. So when you get all these people coming in and there's a lot of fuss and noise and music and glasses and dishes clanking, it can be upsetting for them.
So, you know, we try to advise that maybe you consider having another room where two or three people can go in and visit with your loved one and sit down and have a conversation away from all the noise and fuss.
DINGMAN: I would also have to imagine that the holidays are a time when emotions are running more highly, particularly maybe for the family members who don't have dementia. What is your advice for those family members as they move towards holiday interactions where they might be seeing a family member with dementia for the first time in a long time.
VONKAY: Maybe I would advise either sending them an email or a letter or picking up the phone and having a conversation, letting them know that you're really looking forward to having them come for a visit and, and mom is really gonna be happy to see you. If she has changed physically, you might wanna send a picture so the people coming will not be shocked and reassure them that what the doctor said is that she is getting the correct care, but these changes are part of the normal progression of the disease.
DINGMAN: One other thing I wanted to ask you about here, Karin, is what are the best ways to support someone in your family who doesn't have dementia but who has been doing a lot of that really heavy lifting in terms of caring for a person with dementia.
VONKAY: That is such a tremendously important question. You know, caregivers, especially caregivers of persons with dementia who don't take care of themselves are highly inclined to predecease the person that they're caring for. So it is very important that they take care of themselves while family and friends are around.
This is an opportunity to ask one of them to help you take care of your loved one for an hour or two so that you can take a nap, take a shower, watch TV and do what you need to de-stress.
DINGMAN: Well, you know, I, I feel like a major theme in this conversation, Karin, is there's not really anything any of us can do to reverse the effects of dementia or change the reality of dementia. But if we just acknowledge some of the defining factors that dementia is going to impose on our families, there is a way that we can live with it in a little bit less distressing way.
VONKAY: Yes, we want to make sure that the person that we're caring for has the best possible quality of life.
DINGMAN: Well, thank you for sharing these practices of, of just really deep listening and awareness. Karin VonKay works with Dementia Friends USA. She's a board member of the Northern Arizona Alzheimer's and Dementia Alliance.
