Overcoming the Stigma of Dementia and Isolation of Caregiving
'Teachable moments' that can help family and friends better understand
En español | After Joanne moved her 83-year-old mother into her home, she was delighted her friends embraced the two of them as part of their close social circle. Over the next few years, however, as Mom's memory and language skills got steadily worse, those friends began to drift away. Joanne found she and her mother received fewer invitations to join the group for Friday night dinners or holiday get-togethers. When she'd call the friends, they'd be unfailingly friendly, inquire about Mom's health and then waffle about making plans. Joanne eventually concluded they were avoiding her — because of cruel stigma toward dementia.
Stigma is defined as a “mark of shame.” When we stigmatize people, we engage in discrimination against them because of their backgrounds, attributes or circumstances, such as dire medical illnesses. By steering clear of people with stigmatized diseases, such as AIDS, schizophrenia and even cancer, it's as if we are trying to protect ourselves from “catching” their conditions. The same type of stigmatization has occurred with dementia as our society ages and more Americans experience severe cognitive decline. We want to be supportive of these unfortunate folks — many of whom are our neighbors, colleagues and acquaintances — but are fearful we may one day suffer their scourge. We therefore draw back, often subconsciously, to avoid being reminded of that threat. In the process, we hurt people with dementia — already victimized by an unrelenting disease — and their grieving family caregivers.
Joanne felt more than hurt; she was furious. It seemed despicable to her that “friends” were rejecting Mom and pushing her away, too. In the past, she'd stood with these same companions through their crises, but they were slinking away from hers. At a dementia caregivers support group, she'd heard other caregivers complain about similar betrayals but didn't think it could happen to her. Now it had. She swore to herself she'd never forgive those fickle people.
Is it possible for family caregivers to help others overcome their dementia stigma? Or, as the Serenity Prayer says, must we accept the things we cannot change, no matter how unfair they seem? Here are some ideas.
See the fear for what it is: It should be inexcusable that people abandon us during our hour of need. But, when faced with something terrifying, fear may override reason and even love as survival instincts kick in. Not everyone is built for handling crises. We don't know who we can really rely on in a fix until it happens. It's best for us to see those who backpedal when they should come forward as flawed, not malicious. As difficult as it sounds, we must try not to take their emotional limitations personally.
Beware of shaming self-stigma: Sometimes it isn't just others who regard dementia with overpowering trepidation. We may, too, by feeling ashamed of our loved ones’ embarrassing behaviors and then shielding them from others to preserve their dignity. But that sends signals that only strengthen the inclination of friends and relatives to shy away with the rationale of respecting our wishes. If we want others to be there for us through dementia caregiving, then we must have enough courage to keep reaching out to them with openness and honesty.
Don't answer, “Fine": It's easy to assume that no one really wants to know how we're doing, even if they ask as a conversational courtesy. But it's a mistake to respond with a one-word, perfunctory non-answer. Instead, create a short script that accurately reflects both the negative and positive aspects of how caregiving is going. It is a small but telling way to help others gain a more realistic and empathetic assessment of living with dementia, unclouded by misconceptions or fear.
Create teachable moments: Joanne could simply write off those friends who had disappeared and seek kinder and more reliable comrades. But then she'd be missing an opportunity to instruct. Stigma thrives with ignorance and inexperience. Exposing others to living with dementia increases their familiarity and reduces their fear. But the right conditions must hold. Reach out to an individual friend — not to a whole group — to invite her to lunch at your home with you and your cognitively impaired parent or spouse. Sometimes avoidance is simply due to a lack of understanding of how to act. During the time together, show your guest how you respond to awkward situations, by gentling steering conversations back on track or stroking your mom's arm when she seems agitated. Keep the conversation low-key and light in quiet surroundings so that everyone is put at ease and participates. If the meal is enjoyable and the meeting relatively short, then it should become evident to your friend that your loved one is not crazy, only challenged. One successful visit should beget others and decrease dementia stigma all the while.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.