It’s been 18 months since I lost my husband Byron to early onset Alzheimer’s disease. I will never forget what he went through as well as what our family went through during the seven years of his illness. It changes you, and you can’t look away anymore. You want to do something.
That’s the reason I’m grateful to be part of the East Texas Alzheimer’s Alliance (ETAA). Everyone on the board is passionate about working to serve local families affected by Alzheimer’s disease and related dementias. The alliance provides support to family members in myriad ways, including respite care grants, support groups and free monthly educational seminars.*
At our recent conference, internationally-known speaker Michael Verde, president and founder of Memory Bridge (a nonprofit dedicated to healing the emotional and social isolation of elders living with dementia) spoke about “Love is Listening: Dementia without Loneliness” (also the title of his recent documentary). I wish everyone who has a family member, friend, neighbor, fellow church member or acquaintance with dementia could have heard Verde’s potentially life-changing message.
He explained that the new paradigm of dementia care stresses a person’s well-being depends on belonging to a community, not just having biological needs met and being “managed.” People with dementia still desire to give and receive love, he said. However, a majority of the time, care focuses on a person’s biological needs and managing their behavior rather than meeting emotional and social needs.
“The main source of suffering in Alzheimer’s disease and other forms of dementia is not primarily because a person's brain cells are dying,” Verde said, “but rather because of emotional isolation and feeling disconnected.” He emphasized that the loneliness and disconnection a person experiences does not have to be part of the diagnosis.
People with dementia need to feel like they belong and matter because it is a primary human need, Verde said. They need to feel valued and connected. “Being with” is the kind of care they need, not just "doing for." This means when you are with a person with dementia, you give that person all of your attention. You reflect to them that they are valuable. You touch and empathize with them. You listen to them. You become a bridge to their remembering.
Unfortunately, a common problem in some memory care facilities (where management may value profit over care) is understaffing. The employees stay busy trying to meet the functional needs of their residents and have little time to meet their emotional needs as well.
When a loved one with dementia is cared for at home, meeting emotional needs can also become difficult, Verde noted. As the person progresses, meeting functional needs begins to take more and more time, and family members giving care around the clock get worn out. They just don’t have the energy to focus on emotional needs as much as they would like to.
Emotional isolation can also occur when friends, acquaintances, church members and others are uncomfortable being around people with dementia. It’s usually not because they are uncaring, it’s just easier not to reach out when you're not sure what to do or say. (Verde refers to this as “othering.”) I admit that long before Alzheimer’s came across our radar, I was guilty of that at times.
“After all,” we tell ourselves, “they won’t notice since they have dementia, right?” Verde assures us that they will.
Maybe each of us can reach out and commit to helping fill the emotional void of at least one person with dementia. We can make a difference in their quality of life by helping them feel loved, listened to, accepted and affirmed. We can become part of their community, (or we may even be the person that starts their community).
Isn't this what “being Jesus' hands and feet” to our brothers and sisters with dementia should look like?
“A new command I give you: Love one another.
As I have loved you, so you must love one another.”
—John 13:34 (NIV)
* ETAA's next monthly “Hope & Help Hour” — “Planning for the Future,” will be Nov. 21st, 6-7:00 p.m. at the Longview Museum of Fine Arts, 215 E. Tyler St.; Free of charge. Email firstname.lastname@example.org or call (903) 230-8001 for more information.
Need help or want to volunteer? Please contact us!
** To learn more about Memory Bridge and Michael Verde’s philosophy of care, go to www.memorybridge.org .