Arlene climbed the stairs to Judy’s home to find the latter standing on the threshold, looking out, holding the door wide open.
“Hello, Judy. It looks like you’re expecting me.” Arlene was more than a little surprised that Judy had remembered their appointment; with her dementia, Judy relies on her daughter to keep track of her appointments.
“I wasn’t expecting you,” Judy said. “But I was expecting someone. You’ll do just fine. Please come in.” Judy welcomed Arlene into her home, and they proceeded to have a lovely visit.
Arlene and Judy met though the Seivah volunteer Care Buddies program hosted in partnership with Westchester (NY) Jewish Community Services to create “A Community Response to Dementia.” Seivah trains regular people (hint!) to communicate effectively with people with dementia, accept and find beauty in their silences and non-sequiturs, share insights sensitively with family members, and help people with dementia stay creative and find meaning in life, despite their cognitive impairment.
Seivah carefully matches each volunteer with a nearby person with dementia for weekly friendly visits. The content of visits varies as the relationship develops. Right now, Arlene’s weekly visits with Judy usually involve Judy’s reminiscences about pictures in her family photo albums. And around Judy’s abundant wit.
Regular human contact is essential to keeping a person with dementia healthy and happy. Over the last twenty years, gerontologists have agreed that regular, deliberate eye contact, touch, and conversation improve health outcomes for people with dementia – and even help delay impairment. Practitioners have begun to regard “person-centered” treatment as just as essential as good medical care for the wellbeing of people with dementia.
A person with dementia who is physically well-cared for gets some of this much-needed interaction during sensitive routine care as the caregiver chats with the person while helping with bathing, dressing, dining, and reviewing the plan for the day.
But contact that happens while getting practical stuff done isn’t enough. Would you or I consider ourselves fulfilled if all our social interactions came about as a byproducts of practical transactions? Unlikely. We have friends not because they remind us to take our meds, but because we have an innate need to know others, and to be known.
Ironically, sometimes those closest to us fail to know us as we wish to be known. Those who have known you a long time know you in a complex way, based largely on who you have been, not on who you are at the moment. It’s inevitable that the adult child of a person with dementia has a hard time thinking of the parent as the receiver of care and not as the caregiver, because the latter is who the parent has always been. Yes, it’s wonderful when a person spends a whole lifetime earning the reputation of protector, nurturer, problem-solver. Alas, though, it is very hard for everyone whose identity is bound up with that role to cope with the present fact that he or she no longer is able to be that person.
This is the point when it helps for the person with dementia to spend time with someone new. If, when going through the photo album Judy misidentifies one of the faces, Arlene won’t say, “No, Mom. That’s not my sister. That’s me.” For Arlene, the person in the photo is whoever Judy says it is, and that’s okay.
What’s more, people with dementia often lose their ability to distinguish between longtime friends and new ones. Many people with dementia seem to grow the ability to find joy and meaning in interactions with strangers. The quality of the interaction—the body language, eye contact, and tenor of conversation—all these “in the moment” factors come to matter more, while shared history recedes in importance. Indeed, when Judy waits by the door for a visitor, it matters less who that someone is than that someone is ready and willing to listen.
Thomas Kitwood, a pioneer in the practice of person-centered care for people with dementia, named “respect, recognition, and trust”* as the fundamentals of communication for successful, minimally frustrating, therapeutic interaction. With a little training, all of us can master this art.
Contact us at Seivah to explore becoming a Care Buddy for a family affected by dementia. In just 40 minutes per week, you will do real good that will make a real difference in someone’s quality of life. And you’ll find meaning in those 40 minutes, too.
*Thomas Kitwood, Dementia Reconsidered: The Person Comes First (1997).