‘I’m having a baby!’ announced my 87-year-old patient as she gently rubbed her belly.
‘That’s great Jan, is it going to be a girl or a boy?’ I asked, interested.
‘A girl.’ She beamed.
‘Wow. What wonderful news!’ and then in a whisper only she could hear, ‘Is Jimmy the father?’
‘Nope’, she giggled, ‘but don’t tell him!’
It’s been described as a dance, ‘mental gymnastics’ and just plain hard work! Communicating with a loved one who has dementia can be mentally and emotionally exhausting. And as difficult as it is for you – it can be even more distressing and frustrating for someone suffering from this heartbreaking disease.
The goal is to communicate in a way that conveys warmth and acceptance, leaving the patient feeling supported and loved – not belittled and like they have failed you somehow.
When all is said and done, they may not remember specific things you discussed or who said what, but they will recall the feeling they had in your presence. They may not be able to recall your name, but they know that you make them feel loved.
The following are some practical tips that may help you avoid unintentionally stepping on a toe or kicking a shin. The dance can be beautiful. It just takes someone who cares enough to lead well.
10 Tips on How to Effectively Communicate with Someone with Dementia
Recognize what you’re up against. Dementia inevitably gets worse with time. People with dementia will gradually have a more difficult time understanding others, as well as communicating in general. Your ‘coaching’ or trying to help your loved one improve their memory will most likely lead to frustration and hurt. Strive to accept them the way they are – not ‘improve’ them.
Spread a little sunshine. Your loved one with dementia is not the one to share the woes of the world with. They do not need to know there is a blizzard in New York or that someone they know passed away. Keep topics light and happy. Bad news will not be remembered, but the bad feeling that goes with it will linger.
Talk about one thing at a time. Someone with dementia will have a hard time maintaining a conversation with multiple threads. Have one thing you are trying to get across and focus on only one thing at a time. Long, one-sided ‘lectures’ where you describe many details, feelings and ideas will result in heightened anxiety because they just can’t follow.
Stay in the moment. Telling someone with dementia what will be happening or who they will be with the following day, or even hours later, can be overwhelming. There is no ‘preparing’ someone with dementia for future events – they can’t think ahead and so will react to these comments with frustration and/or distress. Instead, when it’s time to go somewhere or do something, tell them what you are doing and simply go do that thing. No prior conversation about it is necessary. Then, when leaving your loved one, simply say how much you enjoyed being with them and that you love them.
Avoid the word ‘remember’. People with dementia live in the now – moment by moment – each new day. Instead of asking, ‘Remember when we did that?’ Try, ‘It was so good to be with you that day – I always like being together.’ While it’s true that long-term memories are sometimes intact, they are often difficult to access ‘on demand’ – better to affirm and ‘tell stories’ about what you remember with your loved one and not expect them to recall experiences and people.
Listen actively. If you don’t understand something your loved one is telling you, politely let them know. Sometimes they can’t find the words to describe something — look for body language and other clues that help you understand what they are trying to convey. Ask, “Are you saying …. ?”
Don’t quibble. Your conversations are not likely to go very far if you try to correct every inaccurate statement your loved one makes. It’s okay to let incorrect and clearly impossible statements go. For example, if they say, “I talked with my mom last night”, when you know their mom died many years ago, try, “Really, what did grandma have to say? She loves you so much. I’m glad you can talk with her,” instead of, “No, mom, grandma died, remember?”
Side note: I had an 80-something patient once who was convinced she had a baby in her belly. We had long talks about the baby, what she would name it, how she would dress it, etc. She remained ‘pregnant’ for a couple of years until she passed away peacefully in the knowledge that all was well and that she had been a wonderful mother.
Slow down. Speaking with someone with dementia requires shifting into a lower conversational gear. If someone with dementia is hurried or pressured, they will often get upset and flustered. Patience is so important. If rushed, they are quite capable of ‘figuring out’ that you are frustrated with them and conclude that they are bad or it’s ‘all their fault’.
Groundhog Day: Repetition is standard fare for communicating with someone with dementia. You will tell them something, and then tell them again, and then again. As frustrating as this can be, try to avoid phrases like, ‘I just told you that’, and, ‘Remember? We just talked about that a minute ago’. They live in the ‘right now’ and very little time cleans the slate of their mind. This is normal and to be expected, it is not their fault, they are not trying to frustrate you. Stay patient, breathe, take a break and step away if you need to.
Acceptance: This is your turn to be patient and care for the needs of your loved one. They cannot do it anymore. Making peace with this new reality, that your loved one needs you now, goes a long way to alleviating your frustration. The key is accepting the situation as it is, not how you wish it to be. There will be days that you will be frustrated and sad. It’s ok. Get support from your friends and family and take care of yourself. And in every interaction with someone who has dementia, lead with love.