More than 5.8 million Americans are living with Alzheimer’s disease. By 2050, that number is expected to more than double to 14 million. Our helplessness in the face of this difficult disease has created great pressure to do something. One of the results of this has been an explosion in “memory care units.”
Our best idea is to segregate an entire group of people simply because they share the same disease? In other areas of life, such as education, we have retreated from this idea, recognizing that segregation hides those whom mainstream society find difficult or upsetting to deal with, rather than improve their lives.
At this point, even if separation as treatment initially was an attempt to improve lives, it has become an overwhelmingly profitable business — with little outcomes-based clinical research to support it. It is a tempting business model for any community, particularly as its near-ubiquitous acceptance brings the echo of received wisdom with it.
That alone should give us pause.
Rose Villa’s approach to supporting older adults to live the lives of their own choosing often has separated us from other continuing care retirement communities. Not offering memory care in a separate, locked unit is a good example.
It’s not an easy path to take; sometimes it takes more time and may appear to take more money to approach support in an individualized, person-centered manner. Often, however, it results in decreased “behaviors” when we cater our approach to the individual person — which in the end saves time and money.
The benefits far outweigh the effort needed — and we’ve learned some lessons along the way.
Lesson 1: Dementia-friendly activities and programming and person-centered architecture and design that appeal to residents living with Alzheimer’s disease appeal to all people.
No matter the diagnoses, aging adults share many of the same conditions that affect people living with dementia. It’s more difficult to hear and see, it’s more difficult to focus, noise becomes a bigger concern, and large groups can be alarming and stressful. The principles of one-on-one attention and focused activities benefit everyone living (and working) in 24-hour care and further encourage interaction and socialization in quieter, smaller circles.
The Opening Minds through Art program at Rose Villa is an excellent example of this lesson. OMA is an intergenerational art program designed to create positive bonds between people living with dementia and community volunteers. Year-over-year, this program has grown and expanded to include the greater community, staff, independent living and 24-hour care residents.
Architecture and design features customized to those with Alzheimer’s also appeal to all people, regardless of diagnoses. The right lighting, careful carpet selections and circular hallways reassure all people that they are in a safe, comforting and familiar space.
Lesson 2: Memory illness is a dynamic, changing disease that progresses in different ways for each person who has it.
Locking people up “for their own safety” makes much less sense when you understand that not everyone goes through the same stages as the disease progresses. In addition, whatever behavior they exhibit — such as exit-seeking — also will pass as the illness changes the way they interact with the world around them.
One example of the way we interact with folks who want to walk yet cannot navigate their way around the outside world is to send a staff person with them on their walkabout. (Either you spend the one-on-one time outside enjoying a walk, or inside dealing with a frustrated, high-energy resident who just wants to go outside. You choose.) One gentleman wanted to go on multiple walks every day. When he no longer was able to or interested in getting out and walking, staff members noted how much they missed their daily walks with him.
To say that everyone with dementia should live together and be served in a homogenous, regimented way does not make sense. Some people remain highly verbal and articulate. Some people lose words early on and experience the frustration of being unable to say what they mean. Understanding the stages and nuances means people can be comfortable to express themselves in a way that is accepted and embraced.
Lesson 3: Make your entire campus dementia-friendly, and train all staff in memory illness.
We invest heavily in training. And because we believe that everyone here remains a full member of our community regardless of physical or mental capability, it’s important to train the front desk staff, the drivers, the housekeepers and groundskeepers — everyone — every bit as much as the hands-on caregivers. Every staff member can add to a resident’s enjoyment of life, sense of safety, personal value and love. And each staff member gets those things in return.
Lesson 4: People with Alzheimer’s function at a higher level socially and emotionally for a longer period than they would if they were segregated and only able to interact with people who share the same disease.
People with dementia often become more isolated and depressed as their disease progresses. Some become nonverbal, further shrinking their world.
Recently, one of our more severely affected residents with Alzheimer’s was seated for lunch with a resident who requires 24-hour care for physical reasons. They spent the better part of an hour conversing over lunch. Not only did each consume more food because of the interaction — another benefit to inclusion — conversations and friendships were built that we wouldn’t see otherwise.
Integration keeps everyone’s world larger and richer and emphasizes and builds on everything the resident can still do rather than focusing on loss.
Lesson 5: Removing anyone from the fabric of the community they belong to impoverishes the rest of the community as much as it may underserve the person with the illness.
Part of our highest calling as humans is to love and support our friends, neighbors and family. Denying us the ability and opportunity to serve each other in those basic, caring ways diminishes our world and robs us of our own healing power.
I observed one example of this in action on a rainy night in Portland after an event in our performing arts center. I saw one of our independent residents walking two women with memory illness back to their rooms in our nursing facility. The three were arm-in-arm, laughing, just friends out for a night on the town. No one had a label; every one of them felt seen, heard and loved.
Frankly, I believe at some point we will look back at the practice of isolating people based their diagnosis as archaic. In the rush to not be left out of a profitable market trend, we have overlooked many fundamentals, such as research, how to best focus on building a memory-supporting environment and care, and how to most effectively train and support staff and families.
How does this affect the communities we have taken such care to nurture? How much more terrifying is it to receive a memory illness diagnosis when you know it means likely removal from your community? How much less rich do our lives together become when we are robbed of the chance to be fully present and walk down life’s road together?