May 13, 2022
I recently received a letter that touched my heart.
“Dear Ms. Arabian, I’ve always read your columns with interest. However, maybe someday you could write about the friends that have stayed away from a person with mild to moderate dementia. They would be surprised at the reaction to a known face.”
“Do people feel afraid of a Friend’s condition? Believe me, it is not catching! Our home is open to all. There is nothing that would frighten anyone.”
“I am sure this is happening to many people. So, maybe some kind of column might mention this on-going problem.”
This letter was signed “I am a spouse and down deep, I hurt for him.”
In a 2020 interview with AARP, Monica Moreno, Senior Director of Care and Support for the Alzheimer’s Association said “It’s not uncommon, unfortunately, to hear stories where individuals have been diagnosed and their families lose friends. One of our advisers says it best when he says, ‘It’s not a casserole disease.’ People don’t come flocking to your house bringing you food and checking in and asking to see how you’re doing.”
Ms. Moreno gave the following advice for people who have learned a friend or family member is living with dementia and wishes to be supportive and continue being an active part of their loved one’s life.
- Learn more about dementia.
- Take time to adjust.
- Talk with your loved one about what you are feeling, rather than walking away.
- Let your loved one set the tone—ask them how you can be supportive.
- Adjust how you communicate.
- Consider possibilities, not limitations.
Dementia can take many forms and impact people in a variety of ways. Unfortunately, many people do not understand dementia and can be frightened by it. Learning about which type of dementia your loved one is experiencing can help ease your concerns about doing or saying the wrong thing. An amazing resource to learn about dementia is www.alz.org– the Alzheimer’s Association website. In Massachusetts, there is a program called “Dementia Friends” that is an hour-long information session focused on helping participants understand how living with dementia can look and feel. To learn about upcoming Dementia Friends Information Sessions, contact SeniorCare’s Age & Dementia Friendly team at 978-281-1750.
Communicating with a person living with dementia can require more empathy and focus. Listen closely to what your loved one is saying and respond to their reality. It is not unusual for a person living with advanced dementia to have different beliefs about what is happening in their world. For example, my Father has advanced dementia, and now lives in an Assisted Living complex. He believes he is staying in a hotel and talks about what he’s planning to do after his vacation. Rather than arguing with him that he is not on a vacation, I ask him what he likes most about his wonderful hotel. Not only does this give us the chance to continue chatting, but I get information about how he feels about the Assisted Living Staff (a truly wonderful group of people). If I insisted on correcting my Father, it would likely upset him. This would not benefit either of us, and we would likely have the same upsetting conversation every time we talk.
It can take a while to accept and understand a dementia diagnosis. This is a big pill to swallow. But, remember, your friend or family member is still the wonderful person you’ve always loved. Asking them how you can support them is an act of love. Pretending like it isn’t happening or walking away because of fear or discomfort will hurt both you and your loved one.