Four out of five families fall apart when dementia becomes part of their lives. This reflection by Teepa Snow, a renowned dementia expert, highlights the harsh reality of the disease if and when a family doesn’t have adequate support in place.
Dementia affects each member of a family. A spouse may feel they’ve taken on the role of caregiver, significantly changing the intimate relationship of life-long friend and lover. An adult child may feel torn between acknowledging their parent as the older and wiser person who raised them versus seeing their parent as someone who now needs a wiser, guiding hand.
Additionally, family members may have different perspectives on how well (or not well) the loved one with dementia is doing. A daughter who lives out-of-state and talks to Dad once a week on the phone may think he’s managing the disease quite well. But Mom—who is with Dad 24/7—feels like she’s at the end of her rope.
And if the family needs to have those difficult conversations—”Dad can’t stay alone anymore” or “Dad needs to go to a memory care unit”—tensions can rise quickly.
What’s a family to do? Here are some ideas.
Make sure all family members are hearing the same information. For instance, findings from a recent visit to the neurologist should be shared with everyone. If there are recommendations on how to respond to a certain behavior of Dad’s, be sure everyone uses that approach consistently.
It’s helpful if everyone is operating with the same level of knowledge about dementia. In the Family & Friends Caregiver course that the Dementia Institute offers, it’s not uncommon for someone to say, “I really would like my older sister to hear this. I’m going to encourage her to sign up for this class.” When family members can have discussions and make decisions based on a shared understanding of dementia, there tends to be more consensus and agreement.
Differing opinions—and perhaps heated exchanges—may still occur, however. After all, navigating the disease process of dementia is not easy, and old, familiar tensions can quickly come into play. The oldest child may be used to calling the shots for Mom and Dad, but a younger sibling has now had about enough of that!
Remembering who the focus is can be helpful. Letting go of a personal agenda for the sake of the individual living with dementia is sometimes necessary. “Hey, Sis, let’s take a step back and think about what is best for Dad.” Remind yourselves that you’re on a shared journey. At the end of the day, we all want our loved ones to thrive and flourish as much as possible.
Rosemary Apol-Hoezee, RN, MPH, CPHRM
Dementia Specialist
If you’re interested in learning more about our Family & Friends caregiver course, please visit the link below. Virtual and in-person classes are available!