Education, Not Segregation: Addressing the Stigma of Dementia

June 27, 2018
Jill Vitale-Aussem

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:

  1. 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.
  2. 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.

10 Comments. Leave new

Neysa Peterson
June 27, 2018 3:33 pm

In assisted living , the issue of stage of dementia included turns more on the level of staffing Level than any discrimination issue. Most assisted livings are minimally staffed . I cared for my spouse for 10 years with Fronto-temporal degeneration and was able to keep him home and happy with help until her died. I myself have been a resident in assisted living for the past 6 years because of a partial paraplegia due to a spinal bleed. My background is nursing and counseling. I think provision for the needs of persons with cognitive dysfunction need to be specialized for those needs, frequently there is not adequate staff and physical environment to support those with dementia.

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Neysa makes a great point, but to be honest, nursing homes are not staffed very well either. They still remain better suited for people with complicated medical issues, more than those with cognitive ones. Also, I think that viewing people in the advanced stages of dementia is not so much the issue, but the intrusiveness of having to share space with them. Better dementia training for staff AND residents seems the best way to start. Are there any organizations that offer such a training for residents?

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Jill Vitale-Aussem
July 9, 2018 1:47 pm

Hi Dean, our Eden Alternative dementia-related classes work well for residents and team members. I agree, training for everyone is the way to go!

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Jill Vitale-Aussem
July 9, 2018 1:50 pm

Thank you for commenting, Neysa, and for sharing your story!

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Having worked at long care facilities for 25 years, I see most residents as caring, helping, and befriending their contemporaries with dementia, including feeding them, chatting, holding hands, playing along with their sometimes lack of being in reality (e.g. pretending to be Mom because someone’s calling her mom). I have even seen the former complement the latter-good artwork, great singing, etc. We can learn more from them than they can from us.

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Jill Vitale-Aussem
July 9, 2018 1:51 pm

Great point, Ann! We have much to learn from the other residents as well. Sadly, many community cultures foster bullying and ostracism. My experience has been that when we begin to address the culture, we bring out the best in everyone. Thank you for commenting and sharing your thoughts!

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Annemarie Manners
June 29, 2018 10:21 pm

I have worked in Aged Care for many years and have witnessed the wounding and trauma that is caused by locking people up in secure units … we MUST find a better way!

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Jill Vitale-Aussem
July 9, 2018 1:53 pm

Thanks for commenting, Annemarie! I completely agree with you. We’re putting together a great webinar for this fall that will explore this opportunity!

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Melanie Adair
July 1, 2018 6:53 am

We have a senior community of independent and assisted living in which people with varying levels of cognitive impairment and other disabilities live, play, and interact just as we all do in normal daily living. Staff understand how to cue, assist, and redirect as do residents, themselves. When you look at the functioning difficulty, not the diagnostic label or alleged “stage”, you get practical strategies. Helping someone with memory, focus, problem solving, sequencing, or word retrieval is quite doable and practical in a community setting. It simply becomes second nature for both staff and other residents.

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Jill Vitale-Aussem
July 9, 2018 1:46 pm

Thank you for sharing, Melanie! It sounds like your community has a really great approach to partnering with, and supporting, those living with dementia. What community are you with?

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