Who Else Besides Family Should I Tell About My MCI?

People usually let those around them know about personal information like a diagnosis of Mild Cognitive Impairment (MCI) by starting with the inner most circles and working their way out. Last week we discussed telling family about the MCI diagnosis.  This week we will focus on all of the other people in your life.

Closest Friends

Sometimes close friends may be like family, so you can follow the same general rule of thumb: it is likely best to tell them.  These are the people you turn to and who turn to you at times when you both need support.  So why not turn to them now?

Other Friends, Acquaintances, and Neighbors

When you move beyond telling your closest friends and family, the situation and advice becomes less concrete. Your personality will have a lot to do with it.  Some people are very private, and the list of those beyond family and closest friends who will know is very few if anybody.  Others describe themselves as more of an “open book” who do not mind everyone knowing.  But, those folks are not usually the ones asking us whom to tell!  When folks struggle with the question, they are usually concerned about the consequences.

Will they look at me differently? Treat me differently? Will they still want to be around me?

Truth be told, this often becomes one of those times in life when you “find out who your real friends are.” When people learn of something difficult, they often do not know how to best handle themselves or how to act around you. It is rare that someone would no longer like a person because of their memory difficulty. Usually it is more about them than you: they are afraid of doing or saying the wrong thing, or they just cannot handle their own emotions around the topic of aging and memory loss.

Honestly, some people may look at you differently or treat you differently. Again, it is because they don’t know how to act. They may overcompensate in how they talk to you in a way that feels patronizing. Or, they try to make you feel better by dismissing your memory loss as normal – “we all forget things, why worry!”  They may tell you stories of their experiences with someone with advanced dementia that is upsetting.  All these things are often not helpful, and you likely do not want to hear.

Teach them how to act around you. Tell them what is ok and not ok to say to you, or what you want to discuss.  Do this in a nice way, if you can, and especially if the relationship is important to you.

The wager you are making here is that you will find well-worth-it support from those who truly are your friends that will out weigh those who cannot handle the information.

A need to know basis

If they are not someone you know well, ask yourself, do they need to know? What would be the benefit of them knowing?  Perhaps it is a book club, golfing group, bible study class, or poker/bridge group. Letting them know about your memory may help them understand why you need extra time to keep track of the score or may forget the reading for the week. You may then find it less stressful to attend these groups for fear of people “finding out.” If you live alone, would it help if your neighbors knew so they could keep an eye out for you?  Should they keep an extra key if you misplace yours, or let you know if you forgot to turn the sprinklers off or close your garage door?

Put yourself in their shoes

You are the one diagnosed with MCI, but what if the shoe was on the other foot? Would you welcome knowing about it if your friend or neighbor had received a diagnosis? Most people say yes and can think of reasons why, in that relationship, they would welcome knowing. But maybe there are other relationships where you realize knowing maybe would not change anything, or the relationship is such that maybe there isn’t anything you could do to help. Perhaps that may guide if and how you share your diagnosis outside your family.

Committees/Organizations: Can You Responsibility Fulfill Your Role?

Sometimes individuals with MCI are on committees or have leadership roles in organizations. These people often struggle with how the group will react to the diagnosis, pitted against their fear that they will fail in their role because of memory loss. Ask yourself, who/what is at risk with you continuing in this role?  Can you put compensation strategies in place to help you keep doing this role well?

A particular struggle is that these sorts of groups are not always as supportive as a book club or other social group, especially if it is elected office, like on the Home Owner’s Association or local community organization. You may fear your opponents will use this against you, and they might.  Before making the decision to disclose your diagnosis, make the important decisions of 1) whether you can complete your current term and 2) whether you will run for that office again.

Every group is different. But, often even these groups do not want to see you suffer or fail.  Letting them know may allow you to get any help you need to get through your current term in the position. You may still have a lot of ideas to contribute—your short term memory problems may not change that. Or, if it is not realistic, feasible, or possible for you to continue in your role, other members of the group you trust can gracefully help you step away from that position. Leaders in these positions often are there because others value them.  In our experience, most groups react with support, and they are often impressed and inspired by the honesty and bravery you show in disclosing.

Final Thoughts

Some friends may need to know, and you tell them out of respect for them. Some colleagues/associates need to know, and you do it out of respect for the organization. In most cases, however, you are also telling others so that you benefit from support and understanding. Fear of embarrassment or being treated differently keeps you from receiving this support. Reactions from others will not always be peaches and cream; people are not perfect, and some of their reactions will be far from perfect. But, when you think through who you’d really like to know, the benefit of telling those people usually outweighs the cost.

Consider not just who you want to tell, but also think about giving your loved ones, like your spouse, permission to tell those they need to for support. Would it be OK if your wife told her best friend?  Would your husband feel relieved in being able to tell his adult children what you guys are going through?  Could you also encourage them to go to a support group where they could talk more anonymously?  Adjusting to a diagnosis of MCI does not just happen to you, and your loved one may need to reach out for support, too.