The stress of loved ones who are no longer recognized.
- Today, over 6 million Americans suffer with dementia.
- In all too many of these individuals, the disease will progress to where they no longer recognize family members.
In a recent New York Times examination of the issue, Alison Lynn, Director of social work at the Penn Memory Center summed of the challenge, “It’s pretty universal at the later stages of the disease.”
Bracing, surely. Especially when you consider that dementia-driven recognition loss isn’t linear. Families and caregivers can attest; there are good days, bad days and, in some instances, remarkable days. Moments when, after months, even years of non-recognition, a dementia sufferer will suddenly use a person’s name, recall an event, hold a conversation with effortless clarity. Such incidents are called paradoxical lucidity.
And while they may give hope, they signal no real change in a person’s decline.
Given all this, it’s no wonder research has begun to better understand the effects of non-recognition on families dealing with dementia.
There’s no way around it. Non-recognition hurst all involved.
A recent study published in the journal Dementia outlined some of the negative effects no longer being recognized has on adult children. The study, co-authored by Kristie Wood, a clinical psychologist at the University of Colorado Anschultz Medical Campus revealed, in the words of Dr. Woods, a variety of “destabilizing emotions”:
- No longer recognized, adult children can feel a loss of their own identity.
- Adult children may blame themselves, even though they have no role in a parent’s cognitive decline.
- They can even wonder if, somehow, they’re not worthy remembering, which can cause them to withdraw and visit less or not at all.
That last point has the potential to cascade, according to family therapist Pauline Boss. Adult children begin to think of dementia suffers as deceased, then feel guilty about those feelings. Guilt builds on itself to make withdraw more likely, isolating all involved.
Making a bad situation less bad.
Dementia induced non-recognition is truly painful. As AgePros, there’s a good chance at least some of the families we work with are or will confront this challenge. Still, our proximity and the relationships we build leave us uniquely positioned to help.
For example, Dr. Boss, the family therapist, stresses the importance of support groups, in-person or virtual, “It’s important not to stay isolated.” Often, adult children are reluctant to seek out these groups. Your recommendation could make all the difference in getting someone to take that first step.
Alison Lynn, from Penn Memory Care, recommends people consider creating a ritual to mark the loss of recognition in a loved one — for example, think of the Jewish tradition of Shiva. Whatever form this marking takes, loved ones or close friends can participate.
As with support groups, the goal is to not go through this traumatizing experience alone. And as we prove countless times a day, AgePros are always there for the people we help.
Resources for your clients caring for loved ones with dementia.
Spreading the word about Memory Cafes.(Opens in a new browser tab)
