I believe @A myALZteam Member is correct: facing mortality is very difficult. It would probably be hard to get study participants.

The reluctance to face mortality is why most people don't want to think about buying life insurance, why 55% of people die without a will, why 63% don't have advanced directives, and why only 21% of people pre-plan a funeral.

I was at an Alzheimer's Conference last week and listened to a Hospice Director, who said that when a patient passes away, the Hospice person offers to call the funeral home on behalf of the family; but very often, they're told that the family hasn't thought about it -- despite the fact that their loved one has been on Hospice care, and they know that death is imminent. (She also said that most people wait far too long to bring Hospice in. The average patient stay on Hospice is just 90 days, but over 50% of patients spend less than 30 days on Hospice.)

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A myALZte...

@A myALZteam Member this is a great question! I can only share about my limited experience. When my husband had genetic testing that showed an “aberration” the genetic testing company was interested in his parents (both have already passed) and his siblings who do not want to know about or get involved with this sort of study. I’m guessing they are in denial and having a sibling with dementia is difficult enough. Facing one’s mortality can be very difficult. The testing/research company wasn’t interested in our daughters yet because they are currently not showing any dementia symptoms. They are 34 and 31. In case our daughters show symptoms in the future and my husband has already passed, they suggested I bank his genetic material to potentially help our daughters and others in the future.

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A myALZte...