Generally people, even family members, don’t know how to provide comfort once a diagnosis of dementia has been made.  You read all sorts of stories of family and friends not keeping touch, once dementia takes hold.  If they do ‘hang on in there’ they may be unsure what to say, or how to help.  I think the following suggestions from a book by Mara Botonis, ‘When Caring Takes Courage’,  are really helpful on this front:

1. A small gesture goes a long, long way. The gifts that matter most are the ones that help me save time and energy and are a treat that I can enjoy at home without arranging care. I don’t always have time to read a book or watch a movie, or take advantage of invites to restaurant meals or spa treatments, but these are things that I can and will enjoy. Dropping off a pre-made dinner, a CD with my favorite songs, a favorite dessert or snack, a photo album you made of pictures of us over the years, a soft cuddly blanket, fresh flowers or a selection of teas and coffees would be so welcome.
2. Please don’t make me feel guilty. I’m sorry I may be missing family gatherings, not remembering important events or not calling as often as I used to. Please try to understand my whole world is turned upside down right now.
3. Write me a note or an email. I can’t always talk on the phone or devote the time to an in-person visit. The times during the day when I’m “free” to socialize are usually only the hours when my loved one is sleeping and, even then, I keep watchful eyes and listening ears tuned into what’s going on around me. If you write to me, I can read it when I have time to truly enjoy it.
4. Be patient with me when we do connect. It may seem like I’m tired, cranky, consumed by everything Alzheimer’s- and dementia-related and almost incapable of summoning the social graces to make “small talk.” Just know that I care about you, I miss you, and I’m very interested in your life. I’m just really wiped out right now. As hard as this is for me, I wouldn’t change it. Love is about being there for the other person, especially when they need you most.
5. Reminisce with me. I willingly, loving and without hesitation put another person first for most parts of my every day. Sometimes I feel like big parts of me get “lost.” Please remind me of a time before Alzheimer’s and dementia entered our lives. You may be the only one in my life that I get to do this with.
6. If you think I’m doing a good job, please tell me. Most days I feel like I’m failing, trying to fight an incurable disease and the only witness to my efforts is often unable to let me know if I’m doing anything right.
7. Please don’t keep telling me about the latest miracle cure, research study or scientific article. I hate this disease as well, but right now, my focus is on the person I love that is currently living with it, not those in the future that may be positively impacted by these efforts decades from now.
8. You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes, and I’m here every day. We’ll get through this, you and I, together.
9. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying.

©2014, “When Caring Takes Courage.” by Mara Botonis

 One futher quote from Mara’s book:

‘even those who are are ‘swamped’ can find one thing on this list they can absorb or do’.