Topic: Living with memory loss

In response to Leslie’s question, I’m not sure that the decision to “go public” is a singular event in the life of the person with dementia, but rather a series of choices made over time. 

For instance, a woman with AD who is having trouble keeping up with the conversation in her book club might choose to withdraw from the conversation…or she might choose to say, “I’ve been diagnosed with early-Alzheimer’s disease and it takes me a little bit longer to process what you are saying.  Would you mind slowing down a bit?  I would really like to be a part of the conversation.”

The man who goes to an Alzheimer’s support group every Tuesday has a choice as to what to tell his friends about why he is unavailable to go out for lunch.  He might make an excuse of a doctor’s appointment or plans with his wife, or he might tell them about his condition and where he is going.

When opportunities arise to “go public” to a broader audience (i.e., to testify publicly or to be interviewed in the media), I see the professional’s role as being to present these opportunities in a way that makes it clear that the individual is free to say “no” or “yes” with no repercussions or changes in the relationship with that professional. 

I agree with Jesse’s point that it is important to take into account the needs and vulnerabilities of an individual when choosing whether and how to present the option of “going public.”  For example, I once had a client who was very eager to sign a publicity consent for her name and photograph to be used in the media in connection with the Alzheimer’s Foundation – but had also shared with me that she had not yet told one of her sons about her condition.  I gently suggested that she might want to hold off on such publicity until she reached resolution about whether and how to share the diagnosis with her son – and she agreed.  Some months later, once the issues of family disclosure had been resolved, she chose to become more public about her condition and has since appeared in several editions of our agency’s newsletter, as well as a piece about AD on a national news website.