Overcoming the Stigma of Dementia and Isolation of Caregiving

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.