Talking - and listening - to a dementia patient

If you're caring for one of the 7 million or so Americans with dementia, you probably noticed there was some promising news just after New Year's.

The U.S. Food and Drug Administration approved a new therapy, Leqembi, which was shown to remove sticky clumps of beta amyloid plaque from the brain, slowing progression of the disease in those with mild cognitive impairment. The medication is expected to cost around $25,000 a year for one patient, however, so it's unlikely to come into wide usage anytime soon.

While we wait on new treatments, even cures, we continue to provide the best care we can. To improve caregiving and make everyone's lives easier, it's important to practice some "rules of the road" when it comes to effective and loving communication with those whose communication and cognitive abilities may be fading day by day.

As a patient advocate, I have a fair number of clients who have cognitive impairment. Here are some of the things I've learned:

Encourage conversation

As the illness progresses, you may notice your loved one is not starting conversations themselves as often as they used to, so it's up to you to encourage communication. Speak clearly and slowly, make eye contact and use short sentences. Also, give them time to respond - they are likely processing information more slowly.

Be an unintimidating presence

Keep your tone of voice positive and friendly. Communicate from a respectful distance to avoid having your loved one feel frightened or intimidated. Being at the same level or lower - if they're sitting, you also sit or kneel - can also help.

Let them speak for themselves

When it comes to discussing their welfare or health, give your loved one time to express themselves. Rather than assuming you know what they want to say, you can ask clarifying questions like "Is this what you mean?" or repeat what they said.

Acknowledge what they say

Even if what they said isn't true, seems out of context or didn't answer your question, let them know that you heard them and encourage them to say more. Above all, please don't sound patronizing or ridicule what they said.

Give simple choices

We want to avoid giving them lots of options, creating complicated choices. "Do you want soup or a sandwich for lunch?" is better than open-ended questions like "What do you want for lunch?"

Communicate with body language and touch

Body language and physical contact become significant when speech is difficult for a person with dementia. Pat or hold your loved one's hand while talking to them, but watch their body language so you can see whether they're comfortable with that physical contact.

Be aware of nonverbal messages

Your loved one may not be able to express themselves in words, but you might be able to see what they're thinking or feeling through facial expressions and body language. Smile while you're speaking and give reassuring pats on the arm.

Minimize distractions

Ask your loved one if it's OK to turn down (or turn off) the TV. The fewer sources of stimulation the more your loved one can concentrate on what you're saying and what they're trying to say.

Learn what NOT to say

Here are some of the unhelpful things you can say to someone with dementia.

• "Do you remember when ...?" Some people with dementia keep their long-term memories, but rather than having them feel embarrassed if they don't remember, say, "I remember when ..."

• "I just told you that!" Caring for someone with dementia is often a frustrating experience. Even if you feel like you're on your last nerve, take a deep breath and stay as polite as you can.

• "Your wife is dead." A person with dementia may well forget past bereavements - spouse, siblings, even parents. Reminding them that someone is dead isn't helpful; instead, come up with another reason that someone isn't there.

• "Do you know who I am?" Rather than pressuring the patient to recall your name or who you are, a friendly hello may be enough.

• "Do you need help with that, sweetie?" If you called your spouse "sweetie" before they had dementia, feel free to continue. But don't start using pet names while they're sick - it's disrespectful.

The state of dementia research is always evolving, and maybe one day we will see effective and affordable treatments. Until then, all we can do is our best for our loved ones.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.