Family Caregivers Communication Class — The Language of Dementia, Part 2

This is Part 2 in a series. Please click here to read Part 1 which contains the background ideas these lessons are built on.

It isn’t easy to change our way of communicating with our memory-impaired aging parents, but in order to make their lives (and ours) easier, it is helpful to follow some basic Do’s and Don’ts.

A Word of Warning

As I cover some “Don’ts” about using the language of dementia, you will most likely feel guilty because you will be hit with the horrible realization you’ve been doing them. Don’t beat yourselves up — we have all done them! And done them many times. And are still doing them — yes, even though I’ve been a family caregiver for over 10 years, I still screw up and communicate poorly sometimes when in theory I know better.

But just like learning any new language, begin with the basic underlying “grammatical rules” and start using them in your next conversations with your Golden Oldies who have dementia. It takes time to become fluent in a new language, so cut yourself some slack. Use each subsequent conversation as a practice session and see how you do. Just the fact that you’re aware of these better ways to communicate with your Golden Oldies is a wonderful step in the right direction!

So, put the guilt aside, read on and learn.

Don’t Remind Them They Forgot and Don’t Question Recent Memory

I recently wrote a post explaining why I don’t like being asked the question, “Does she know you?” when I tell people my mom has Alzheimer’s disease. There is another side to that issue when family caregivers speak with loved ones experiencing memory loss or dementia. I’ll explain . . . .

My mom and I were sitting in her board & care’s living room a few weeks ago with another resident who has dementia. (I will call her Sally, but that is not her real name.) Sally’s sister arrived for a visit with another couple. They all greeted Sally with hugs. Her sister then said, “Sally, do you know who this is?” referring to the other couple. When she didn’t respond right away, the gentleman visitor said, “Of course you do, Sally! I’m your brother-in-law, Joe, and this is your sister, Mary. Don’t you remember us?”

I know, you’re probably thinking no big deal, but I cringed when I heard her ask “Do you know who this is?” Sally is aware enough to understand the question, but based on her blank stare and lack of a reply, she probably did not remember who the other couple was (even though they were relatives but ones she doesn’t see too often).

I know the visitors meant no disrespect to Sally, and used the words we all use automatically when greeting people. But with that exchange, Sally might have felt embarrassed that she didn’t know who they were, especially when she was then told they were family members. She also could have been upset that she didn’t remember who they were. I cringed again when her brother-in-law said “Don’t you remember us?” Ouch!

It is not kind to someone with dementia or Alzheimer’s disease to point out their memory loss (which is a disability like any other) over and over again. It may take a minute or two of thought before speaking to avoid doing this, but the words we use matter a great deal.

Instant Replay: Instead of saying to Sally “Do you know who this is?” it would be kinder to say, “Sally, look who’s here to visit you today: Mary, your sister and her husband, Joe.” Immediately identify who is visiting, rather than putting the memory-impaired person in an awkward or embarrassing situation.

In addition, try to avoid using these questions in conversations:

• Do you remember when we ________?

• What did you do today?

• How was lunch (or any recent activity)?

True Confessions

Another example comes from my own experience. And believe me, I look back and regret doing this, but I didn’t know any better at the time.

One of the first signs my mom had Alzheimer’s disease was that she repeated the same question multiple times within five minutes. It could have been something as simple as, “Is today Thursday?” I would answer her sweetly the first time, but then every time after that when she’d ask the same question, I’d say something like, “Mom, I just told you that. Yes, it’s Thursday.” She would look at me with a blank stare or sometimes say “You did?” Then she’d shrug and we’d go on. I had very little patience for her repeated questions, and looking back I realize how unkind I was by pointing out her memory loss repeatedly. And then compounding it by speaking in a frustrated tone of voice or rolling my eyes when my patience was completely shot. UGH!!

Here’s another example of how to not remind them they forgot:

Golden Oldie: “Steve hasn’t called for a long time. I hope he’s feeling OK.”

Don’t say: “Steve called yesterday and you talked with him for quite awhile.”

Say instead: “You really like talking with Steve, don’t you? Let’s call him when we get back from lunch.”

Kinder Solutions

If your Golden Oldies repeat the same question multiple times they are not trying to annoy you. They truly believe it is the first time they’re asking you the question. Our job is to reply as if it’s the first time they’re asking the question. This isn’t easy and it takes a load of patience to accomplish, but try your best! Remember, their reality is now different than ours. Reminding them they forgot won’t change this fact, and will only make them feel worse.

Keep in mind this new language will take lots of practice to become comfortable with! So hang in there and keep practicing in everyday interactions with your aging parents.

Have you had these type of conversations with your Golden Oldies with dementia? Can you add any tips you’ve learned?

Please write them in the comment section below. If you’d like an easy guide on how to leave comments on the TLeC blog, click here.

Outside Resource:

Compassionate Communication with the Memory Impaired by Liz Ayres