Helpful tips on talking with a caregiver

I have been living with dementia for over a year now, and I want to give some tips for how to handle this conversation with the person giving the care for someone with dementia or any terminal illness. These suggestions are not so different from the skills taught in my award-winning social skills curriculum.

What to do:

• When told, say, "I am so sorry." or words to that effect
• Listen.
• Do ask, "How is it going?"
• Do ask, "How is (name of person with illness) doing?"
• Do ask, "How can I be of support?"

What NOT to do:

• Do not presume you know what the caregiver is experiencing even if you have lived with a terminal illness yourself.
• Do not give unsolicited advice.
• Do not avoid asking how things are going.
• Do not say nothing if the caregiver says something to you. At least say, "I'm sorry to hear that." or some appropriate comment.
• If you are unwilling to listen, tell the caregiver. What are you willing to do?
• Don't presume that every type of dementia offers the same experience. Ask, "What is most difficult for you?" or words to that effect.

Living with dementia is difficult enough on its own without the added burden of people presuming what I am experiencing. Thank you for listening.