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 Culture Change—Dementia Care Isn’t What It Used To Be!

A Former Nurse Aide, Now Assisted Living Facility Director, Reflects on Past and Present Dementia Care

 

When I was very young, I worked at a nursing home that had 150 beds, tiled floors, and medical-looking equipment. Everything was sterile—nurses and aides wore white uniforms, and white sheets draped the hospital beds. Most of the folks living there were very old—in their 70s! And most demonstrated symptoms synonymous with Alzheimer’s disease or other cognitive impairments—they were identified as being “senile,” or having “hardening of the arteries,” or just plain “old and infirm.” Of course, several of the people living there (referred to as patients) needed physical care as well.

In the interest of patient safety, we usually tied them to their wheelchairs in jackets that looked like “straight-jackets.” When we put them to bed at the assigned time, we often restrained them in bed with those straight-jackets and put up bed rails. Additionally, if someone was incontinent, he/she either had a catheter or we simply put cloth pads under them to catch any body fluids.

The staffing for the 40 patients in our wing of the nursing home was a nurse (who spent eight hours passing all medications and working diligently on paperwork to document anything and everything that pertained to the patients) and two nurse aides. I was a nurse aide.

Rigorous Rounds

Each day when I came to work in the afternoon, I had assigned tasks for the 20 patients whose care attended: give baths to three patients, take two patients for a 20-foot walk (as part of his/her physical therapy plan), and feed two patients. The other aide had similar tasks for her 20 assigned patients. We were kept so busy that I rarely saw her except when I needed her help in transferring a particularly heavy patient from a wheelchair to a bed.

Dinner time was quite an ordeal—it was a stressful, 30-minute-start-to-finish event that began at exactly 5:00 p.m. each day. We scurried most patients to the central dining room, where we served their food on plastic trays that had those separators—much like one would see in an elementary school cafeteria. We knew of the patients who often spilled their food, so we had brightly colored, terry cloth bibs that we snapped around their necks—and then we left them all to their own devices while we went to different patient rooms to feed those who were bed-bound.

Things have changed dramatically—and for the better—in the past 40 years. Today, I am the executive director at Aspen House Memory Care Assisted Living in Loveland, Colo., a community where up to 40 people live. This is their home, and I (along with many others) work in it. The residents at Aspen House all have cognitive impairments, either with Alzheimer’s disease or some other form of dementia. The residents here aren’t in need of skilled nursing that nursing homes provide, they simply need help with their daily living activities and, like a lot of us, require lots of love and attention.


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A Home, Not An Institution

When you walk in to Aspen House, you know you are in a home and not an institution. Wherever you stand, you can see out a window. There are no dead-end halls: The halls either end at an exit door with a window or empty into another dining room. The stark white walls are a thing of the past and are now painted in warm colors.
 

The furniture is comfortable and inviting (it is not uncommon to find someone taking a nap on a sofa or on a reclining chair), beds are regular beds, and no medical-looking equipment is in sight. (Obviously there is a need for medication carts but those are kept in a separate room and not pushed around the building.)

The distance from a bedroom to a dining room is short—a dining room is designed for just eight to 10 people who sit around a large table, family style, and enjoy their meal along with a health care worker or two. There are no loudspeaker announcements, and there are no alarms or bells going off to intrude on the serenity of the atmosphere. The walls are decorated with family photos and paintings that are meaningful to the people who live there. There are items on shelves and bookcases that are there to be picked up, handled, and moved around as any resident desires.
 

Partners, Not Providers

At Aspen House, the entire staff are extremely well-trained in dementia care. They are “care partners” rather than certified nurse assistants (CNAs) or personal care providers (PCPs). They don’t “provide” care, they partner with the residents, the residents’ families, and other care partners to understand the person and what helpful care services they can provide.
 
Care partners do provide physical care such as assistance with taking showers, getting dressed, or help in the bathroom, but that’s just a small part of what they do. They develop relationships with the residents and understand the whole being of the resident. They immediately recognize when someone is acting differently and work to resolve the issue that is causing the change in the resident. The solutions are mostly creative, but all serve to respect and preserve the dignity of the residents.
 
It is not uncommon for some residents to become unsettled in the early and late afternoon. Often a resident will express that she “needs to go.” Upon further investigation of the resident’s life story, the care partner will figure out that she was a homemaker who waited for her children to come home from school at that time of day. That feeling is very real for the resident, and the care partners make no effort to argue or to try to convince the resident that her children are fully grown and not coming home from school. Instead, the care partner joins the resident in her reality and assures her that the children are safe and may be at the neighbor’s house having a snack and should be home shortly. Then the care partner offers to “wait” with the resident while they share a cup of coffee and a visit. The moment of worry and anxiety passes for the resident.
 
The mantra at Aspen House is “It’s a good idea until it’s not.”
 

Going With The Resident’s Flow

Aspen House espouses the theory of person-centered care, in which people are respected and treated as individuals. In younger years and in life, everyone is different, so it stands to reason that in one’s period of dementia, they will remain as individuals. What works well for one person may or may not satisfy another. Men and women seem to rarely have the same interests. What was successful in enriching someone’s life today may not do so tomorrow or may cause stress and anxiety an hour from now.
 
Yesterday it was a good idea to have music playing in the background during mealtime. Today the music is serving to disrupt mealtime. Last week it was a good idea to keep paper towels in all the bathrooms, but today (after calling the plumber for a clogged toilet) it’s not such a good idea.
 
Some women seem to appreciate “helping” the care partners with tasks such as folding laundry, sorting silverware, or mixing cookie dough.
 
Not the men! They will assist with carpet sweeping or dusting, but all other “house-wife” activities are off limits for them. Generally they like to sort tools or other mechanical-type things or nuts and bolts but none (so far) have expressed any interest in sorting silverware.
 
Some women had careers and are not interested in homemaker activities but seem to take pleasure in office work such as addressing envelopes or straightening out the desk.
 
Depending on his or her cognitive level and interests, some residents are most comfortable in simply observing what others are doing. One thing that is of interest to most is the daily “meeting” where small groups gather to meet about a topic. The meeting agenda is always something that is of interest to everyone: “Determine and outline the plan for the day.” “What is your opinion on how I should prepare for my upcoming wedding?” “Where should we go for our next vacation?” The meeting offers everyone an opportunity to share his or her dislikes, experiences, and opinions.
 

(Don’t) Let Me Call You Sweetheart

Aside from the emotional support that residents receive, the physical care looks completely different as well. No one is tied to a chair or bed. No one has bedrails on his or her bed. And at some time in the past 40 years, someone invented incontinence garments that look and feel like normal undies.
 
Four decades ago the “patients” were called “honey” or “sweetheart.” Not today. Everyone at Aspen House is referred to by the name they prefer. To date, no resident has suggested that one of the “youngsters” (care partners) call them “sweetie.”
 
The residents are adult people who have lived lives of meaning and purpose and now are saddled with a disease. They are adults and are treated as such. The games they play or the activities in which they are engaged are all adult-like and not childish in any way. The puzzle pieces may be large but are of pictures that appeal to adults, not children. The Aspen House game of Scrabble may have “rules” that don’t apply at most dining room tables, but it is adult-like.
 

People Before Procedures

Staff receive hours and hours of training in caring for the heightened needs of the residents. Furthermore, all employees are given the tools to help in providing care for residents in a safe, dignified, and compassionate way.
 
We rely on a person-centered approach—putting our residents before tasks. We focus on building loving and nurturing relationships that meets the need of the whole individual: mind, body, and soul. We are care partners, not care providers. We work with the residents and families as a team to meet their everyday needs.
 
Above all else, care partners at Aspen House understand and respect the fact that they are guests in their residents’ home and conduct themselves accordingly. “The best part of our job is our relationship with our residents,” says care partner Jessica Seely. “Our residents continue to be our greatest teachers and biggest inspirations.”
 
Jean Cannon is executive director of Aspen House, www.aspenhouse.org, and a board member of Colorado Culture Change Coalition (www.coculturechange.org). She is also dementia care-certified from the Colorado Alzheimer’s Association (www.alz.org/co). She can be reached at jeancannon3@outlook.com.
 
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