“Memory care neighborhoods are really just another phrase for segregated living.”
That’s the gist of an article on the Senior Housing Forum about physician and author Dr. Al Power’s view of memory care. The article is called Better Think Before Building That Memory Care Unit
Here’s my response to the article:
First, I very much respect Dr. Power and can see the perspective the article presents. However, I want to challenge that perspective.
I don’t believe the problem with memory care is the concept of a secured, specialized neighborhood.
Instead, one of the root causes of the problems we all seek to solve is that there really isn’t much dementia care specialization happening in those environments. With no specialized staff and no specially built environment or programs, in so many environments, those with dementia don’t flourish or live to their potential.
Indeed, some providers simply hang a sign out that says “Specialized Memory Care,” and then lock the door. To no surprise, staff in those places often refer to this as “the lockdown unit.”
That is a horrible way to live and I agree that no one would rally behind this type of living environment.
Another root cause of poor memory care is our perception of dementia and aging.
Typically, the words used to describe an elder with dementia are categorically negative. How, then, would one make the leap to creating a positive living environment?
It’s hard to imagine a life of well-being borne out of seeds of negativity. So our paradigm
and our language must shift.
I believe our elders who have been diagnosed with dementia have many remaining abilities that must be seen and capitalized upon. As an example, “wandering” is a negative label that masks a person’s remaining strengths.
The reality is that the person who “wanders” CAN walk AND desires to engage with people or things in their environment.
That’s good, right?
It’s only bad when we label it as “wandering,” try to stop it, and/or leave the person alone to walk and don’t appropriately direct their energy, abilities, and interests into meaningful activities and social engagement.
I don’t believe peer-to-peer, specialized memory care neighborhoods are the problem. They don’t have to be places that are simply “segregating” and “doing harm.” Poor results like that arise from the underlying issues I’ve described.
I believe in peer-to-peer activities, dining, and/or living environments in order to create the right fit and challenge for the person's cognitive, social, and physical needs.
One example we can all relate to is schools. Children at various degrees of development are in a school room with their peers. The lesson plans, equipment and supplies, furnishings, and staff-to-student ratios are designed for a peer group so the group of individuals can thrive.
I think quality dementia care requires a similar approach: creating the right fit between social, physical, and cognitive abilities, delivered by specialized staff, in a supportive environment. And of course quality dementia care first and foremost prioritizes the interests and preferences of each person, while taking care of their medical needs and providing proper supports for their cognitive challenges.
We shouldn’t warehouse people, segregate, and hide them in the back of the facility or the basement, and we shouldn’t prevent them from engaging in environments outside of their memory care neighborhood, as long as the degree of supervision in the other environments is in place to maintain safety.
But we also shouldn’t move individuals with dementia care special needs into a generalized environment without understanding all that it would take to try to make that situation work for all and produce positive outcomes. Risks include lack of acceptance by other residents, a high degree of challenge for staff who must find a way to adapt activities and environment “on the fly,” and risks that the resident will feel they don’t belong, leading to isolation, sadness, anxiety, depression, or the desire to leave, also termed “elopement.”
In fact, I’ve seen cases where a resident with dementia is in an independent living facility with neighbors who do not have dementia, and administration asks the person’s family to move their loved one into specialized care, where staff and environments are equipped to meet their loved one’s needs.
In summary, I am sure none of us are advocating for what we often think of as that “lockdown unit” in which a person is “sentenced” to live, restricted and hidden behind a locked door, with others who share a diagnosis or (ugh) a “behavior problem.”
But I think we have to be careful not to create a groundswell around the idea that all memory care neighborhoods are bad and house prisoners because they have been created around commonalities.
What we need instead is high quality care.
The movement I advocate for, as we continue to improve the quality of memory care, challenges our belief system.
Make a list of the words and feelings associated with aging, old age, and Alzheimer’s/dementia. How many of your words, feelings, and beliefs embrace positives and potential? How many suggest respect and dignity?
Likely too few.
And that is what must change in order to create the commitment and excitement about the “worthiness” of putting in the effort to create specialized teams and environments for our elders who unfortunately are in the midst of decline. Only then can individuals with dementia have an opportunity to thrive as they live with a disease and experience the sunset phase of life.
Person-centered, abilities-focused dementia care delivered by a specialized team, in a specialized, secure, peer-to-peer living environment isn’t the problem.
I hope our society will continue to explore our perceptions about aging and dementia, and evolve to a point where our priority is how to provide compassionate, specialized care, instead of misperceiving addressing a person's special needs as discrimination, or focusing so much passion and energy on removing a secured door.
Thank you for listening. Please share your thoughts too. Let’s keep the conversation going.