The support group for families living with dementia has been meeting monthly since March. We all find Bethesda United Methodist Church (BUMC) to be an incredibly supportive congregation, and yet we know that having a conversation with someone who is living with a person affected by dementia can be uncomfortable. Thus, we would like to offer some helpful hints as to ways to offer support to those of us on this journey.

Living with dementia is exhausting, frightfully busy, overwhelming, boring, and lonely all at the same time. Phrases like “how are you doing?”, “how is [insert name here]”, “can I help with anything”, “call if you need anything”, are all very well-meaning but may be less than helpful. Life for us is unpredictable; “how are you?” can be a loaded question and an honest answer frequently includes more information than anyone wants to impart or to hear. In the same vein, “let me know if you need anything” often begs the question, “where do I start”?! On the other hand, an offer for coffee, lunch, or dinner for a specific time or date (“perhaps dinner next Tuesday or Wednesday”) is a winner.

While it is comforting to know that people are interested and caring, coffee hour chat does not necessarily need to revolve around the person living with dementia. Although we have been thrust into the role of caregiver, we are still interested in chatting about good books, the Nats game, and that new restaurant in Bethesda (especially as our world sometimes seems to have shrunk.). If our loved one is present, they can be included in the conversation too.

So, back to the casserole. Sometimes an offer of food can be very helpful; as in, “I’m making chili, can I bring you some on Wednesday?” Equally important though, and maybe more so, is the need to get away, to go out, to be in different surroundings with someone who is willing to simply listen. No advice, no suggestions, no comments, just to listen. And after the steam has cleared, the pleasant friendly conversation that sometimes seems to have become elusive. Finding time for a trip to Starbucks will always be welcomed, even if it takes a month to schedule.

So in no particular order….

Helpful Suggestions

• Chat with us during coffee hour, about ANYTHING, and include my loved one if they are present (if you notice they are wandering, please lead them back to me!)
• Suggest opportunities for socialization – e.g., “Are you free for dinner on Tuesday?”
• Listen to us vent and blow off steam – without giving any advice!
• Make specific offers of help – e.g., “I’m going to Costco …” or, “Can I visit your mom so you can ….”
• Reminisce about past times shared with the loved one
• Offer to visit the loved one either at home or in the facility
• Provide suggested resources from others living with dementia (not to be confused with unsolicited advice)
• Continue to provide offers of support and help throughout the LONG journey, e.g., “you mentioned your garden, can I help you on Saturday?”

Unhelpful but often well-intended:

• Giving unsolicited advice: The dynamics you see are likely only the tip of the iceberg, and thus unsolicited advice or comments on the living/care situation are not useful. (E.g., “why is [insert name here] still living at home”?). There are always complicated issues of family dynamics, finances, and emotions all lurking beneath the surface.
• Asking the question: “How are you doing?” is a difficult question to answer since it varies from day to day, stage to stage. Living with a loved one with dementia is always a challenge—there is no short answer to that question. Often the truth is, “I don’t know.”