Table 3 Pros and cons of early dementia diagnosis noted by participants

 Time/ability to adjust to the disease, plan and prepare

You can plan…We can know what we should be doing, for instance, physical, social, eating carefully. The earlier you know, the more you can gear your life that way.

Participant 5, MCI group

You can start working through and being very careful with your time, with people, working with machinery and stuff like that…You know, being aware, slowing down because your brain is slowing down anyway.

Participant 7, Dementia group

 Opportunity to gather information and resources

In terms of my own physical health and others, I always want to know as much as possible at the front end. I think you do go through potentially a fatalistic, “Oh, my God, I have such and such.” And then it helps you also figure out how to get access to things to help you.

Participant 2, Caregiver group

You can have timely and/or early referrals to things, like physical therapy rehab for safety and walking, and that type of a thing.

Participant 6, MCI group

 Early awareness for caregivers

A spouse would love to be able to be a better support system, but that does involve early knowledge. When you have the best time to learn, to figure out what it is the best things that you can do, and to get some real assistance in carrying them out.

Participant 6, MCI group

The early diagnosis [for my loved one] was helpful for me because it put me on alert that I now have a greater responsibility to stay healthy.

Participant 2, Caregiver group

 Understanding and accommodating cognitive and behavioral changes

If the person is diagnosed early and the family knows of the diagnosis, then they are considered having the dementia rather than being considered a normal person with terrible behavior.

Participant 1, No Diagnosis group 1

For me, an early diagnosis would have been helpful because I thought [the change] was all in my head.

Participant 5, Caregiver group

 Emotional/psychological distress about prognosis

Do I really want to know that? If there’s nothing that can be helped, I don’t want to worry about…it’s really bad, but there’s nothing that anybody can do for me. So why live like that?

Participant 7, No Diagnosis group 2

I guess the con would be, if it were for me, just knowing what was going to happen.

Participant 10, MCI group

 Negative/uncomfortable interactions

One of the disadvantages [of being diagnosed] is contacts with ill-informed people who without intention can be deeply hurtful to you.

Participant 6, MCI group

It’s still…a taboo type thing when you talk about short term memory loss. And people don’t like to hear it.

Participant 10, MCI group