Education, Not Segregation: Addressing the Stigma of Dementia
As you may have seen in last week’s Washington Post article, there was a provision in a bill before the DC Council that would affect the future of assisted living communities in the Washington, DC. Area. The provision proposed that these communities be prohibited from accepting a resident who “is or has ever been diagnosed with moderate to severe dementia, or requires hospice care.”
The reasoning behind the proposed ban, according to the Post, isn’t the protection of those living with dementia. Instead, it appears that its purpose is to protect the well-being and comfort of other residents who must witness “the horrible effects of late-stage Alzheimer’s disease.”
There are many diseases that bring what others might describe as “horrible effects” in their late stages. Should we also segregate and ban from assisted living those living with cancer, ALS, or Parkinson’s disease?
As someone who has managed senior living communities for two decades, I understand the push to segregate people living with dementia. There is a terrible stigma surrounding the disease, which often leads active, healthy residents to ostracize those living with different cognitive abilities.
These residents aren’t bad people, they’re just scared and uncomfortable. Residents, I’ve learned, are often fearful for two reasons:
- They’re afraid of getting dementia. There are some that say they fear dementia more than death. When we’re afraid of something, it’s human nature to want to avoid any reminder of it.
- They don’t know how to talk with, support and interact with someone living with cognitive challenges. We spend much time educating our team members, but rarely do we provide education for the residents themselves… education that empowers them to understand the experiences of those who live with dementia and shows them how to build meaningful relationships with them.
The antidote to fear is not segregation, but education. Rather than further stigmatizing those with dementia, we should focus our time and efforts on creating inclusive cultures. This means educating the rest of society, including residents in congregate living settings, about how to support their friends and neighbors who are living with dementia.
Spurred by Dr. Al Power and his push for radical inclusion, there is a strong movement underway to unlock the doors and create communities of inclusion for people living with dementia. I believe in the future we’ll look back at ‘locked memory care units’ as a barbaric practice – much the way we now view restraints.
It’s time that we take steps toward inclusivity and push back against the stigma of dementia. It won’t be easy, but nothing worthwhile is. Stay tuned for news of a webinar event co-hosted by The Eden Alternative and the Dementia Action Alliance focused on this important topic. In the meantime, leave a comment below and consider having a discussion with teammates about this issue and what steps you can take together to deepen understanding and create more inclusive communities.