A neighbor of mine, recently diagnosed with dementia of the Alzheimer’s type, has shared with me that he hardly ever leaves his house anymore, because he doesn’t want anyone to know his situation. How heartbreaking this is for him and illustrates the powerful stigma that is associated with dementia. This is a man who developed and managed several successful companies and has the reputation in the business world as a “take charge” kind of person. Now he’s hiding in his house…
What’s his fear? He held my hand and said, “ I don’t want to be treated as a child.”
The stigma attached to dementia is real and has emotional and social implications. Within just a short time, my successful, confident neighbor has lost his self-esteem and is fearful of the judgement of others. The stigma and devaluation that is associated with dementia can be paralyzing, as witnessed by my neighbor’s fears and abrupt change in his social interactions.
Facing stigma is often a primary concern of people living with Alzheimer’s and their care partners. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease. https://www.alz.org/help-support/i-have-alz/overcoming-stigma
One of the most common myths and misconceptions about the diagnosis is that people become “child-like” or retrogenesis (aging in reverse). Of course, this isn’t possible and an adult with the diagnosis of dementia is and always will be an adult, with their full history of accomplishments and talents as part of their identity.
What can we do to help counteract this stigma which marginalizes PLWD and assumes they’re “unable”?
At the Green House Homes, we strive to decrease the stigma and devaluation of PLWD and treat them as adults – not children. We can approach them as adults and involve them in adult activities. Relate to them as adults, not children, and don’t assume they “don’t know”. How often I hear from nurses and physicians that “They won’t know the difference.”
On a recent tour of a nursing home, I witnessed a group of female residents, all PLWD, being handed baby dolls out of a basket that was being passed around. Some of the women tried to cradle and rock the dolls while others appears uninterested and left them lying in their laps.
The distribution of the baby dolls I’m sure came from the staff’s good intentions to engage the women and also comfort them. But the vision of the women being handed out baby dolls seemed like a real example of reducing their abilities to child-like levels, while assuming “they won’t know the difference”.
If a PLWD has always been a doll collector and that is part of her/his story, it would be so fitting to surround them with their doll collection. But if a person does not have that history, why offer them a doll, a “fake” baby? Is the assumption being made that they won’t know the difference? Is the assumption being made that they don’t have the ability to respond or have a relationship with a real baby?
Investors are developing more and more almost real baby dolls and robotic pets to comfort and distract PLWD. I am frequently asked to endorse and introduce these life-like dolls and pets to the PLWD that I work with. I can’t do that, because the image of a group of PLWD holding plastic dolls immediately speaks to their inabilities and losses. Anyone can look at a group of grown women being handed out dolls and think, “These aren’t capable adults, why would they be holding dolls instead of real children”?
One ability that PLWD retain is the ability to have real relationships. Yes, a PLWD might respond to a doll or robot, but just watch them with the real thing! The interactions, the feelings, the real relationships are evident and powerful. When someone tells me, “But she loves her doll!”, I say, “She’ll love a real child even more.”
So if we want to comfort and engage PLWD, why would we offer fake babies and pets? More and more care centers are partnering with children’s’ play groups and preschools to have regular interactions. PLWD can provide warmth and real love to the young children. And many places now have dogs and cats who reside with the PLWD, offering opportunities for real interactions and purpose.
As a professional working with PLWD, I remind myself to focus on retained abilities and talents of a PLWD, not on their losses. And to always be mindful that I never want to treat them as children or in any way devalue them.
Let’s bring real children, real pets to PLWD and watch real relationships develop!