Not Too Far Gone
“Elders are not some amorphous mass of old people. They are us. They are individuals with their own stories and problems and things to laugh about, and we should never fall into a way of thinking that stereotypes and marginalizes them.”
- Beth Baker in Old Age in a New Age
We all have heard the refrain in one form or another.
Frail elders with dementia are “too far gone” to enjoy the simple pleasures of home. Keeping them safe, clean and comfortable in hospital-like surroundings until they die is the best we can do for them.
Such was the gist of one individual’s response when Beth Baker presented the idea for her book, Old Age in a New Age: the Promise of Transformative Nursing Homes, at a writers’ workshop.
“Clearly, [the woman] indicated, it was a mistake for me to write a book that would give readers hope,” writes Baker.
Old Age in a New Age not only gives hope, but also illustrates why home, loving relationships and life’s everyday pleasures are just as important for cognitively impaired elders as for anyone.
“Having a sense of meaning to our lives - a reason to get out of bed in the morning - is vitally important no matter how old, forgetful or disabled we are,” said Baker in an interview with Action Pact. “I think we all thought… that somehow didn’t apply to persons living in nursing homes.”
Her book gives compelling evidence that problem “behaviors,” physical decline and total disengagement into “slumping” by those with dementia often result as much from the way care is given as from their disease.
Certainly elders living in nursing homes need clinical care, but it is far less effective when received in institutionalized surroundings devoid of nurturance and social support.
“I Wanted to Flee…”
Consider the contrast in two of the nursing homes Baker visited - the first a conventional facility in the Midwest where she found the environment and the residents’ behavior equally disturbing:
I wanted to flee. Everything about the place felt wrong. You exited the elevator to face an imposing nurse’s station. In the hallways, people sat in wheelchairs with nothing going on to engage them. The atmosphere was stifling, and particularly distressing as I knew this was a place with a good reputation. I felt I would go mad if I had to live there. Why should we expect anything different from residents, whatever their cognitive state?
Compare that with what she found at Arbor Place, a transformed nursing home in Rockville, Maryland:
As I entered, I heard Latin jazz throbbing. Before me, in the living room, the household was in full swing. A gentleman in a plaid shirt dipped into a romantic embrace with a regal woman wearing a full skirt, her hair tucked into a ballerina’s bun. Others held their partners’ hands and bobbed to the beat. Some who were in wheelchairs hand-danced with their partners. When the song ended, everyone laughed and hugged. It was hard for me to believe that every resident there had Alzheimer’s disease.
Many - perhaps most - nursing home residents are not as far gone as they seem, Baker notes. Some are simply forced by their infirmities to live at a much slower pace than other people.
“Skilled and loving caregivers have taught me that the key to being present for people with diminished capabilities is to slow down and get into their rhythm, rather than try to force them into ours,” Baker writes.
But in conventional nursing homes the pace is often hurried, with little time for caregivers to visit with residents and establish friendships. Indeed, such interactions are often discouraged by top management.
Unsettling noises from buzzers and intercoms, lack of privacy and a sea of strangers rushing about exacerbate the fear and confusion already felt by residents struggling with dementia. Add this to their difficulty in articulating their needs, and there is little wonder why some become completely withdrawn or fight their caregivers.
Their combativeness often is countered with anti-psychotic drugs which may cause further cognitive and physical decline.
As one doctor told Baker, these drugs don’t improve quality of life for residents: “All it does is sedate the behavior… chloroform does that too!”
More Choices, Fewer Meds
Giving elders choices and control can bring far more positive results.
Baker tells about an elder who was prescribed an anti-psychotic drug because she always fought when aides came to take her for a shower. The nursing home called a geriatric psychologist in for a consultation with the elder. After only a few minutes, the psychologist discovered the woman was upset because her shower was scheduled in the afternoon when her daughter might visit. After the schedule was changed to mornings, she no longer was combative and was taken off the medication.
Baker observed far less disturbing behavior by those with dementia in nursing homes that provide person-centered care in a homey environment: “This contrasted with many of the traditional homes I visited, where the cries of people with dementia seemed to be accepted as normal.”
The use of medications also was far less in the transformative homes she visited and in the research she examined. For example, a study in the British Medical Journal comparing residents in 12 nursing homes in England found that in facilities where staff received training and support in person-centered care, the number of residents taking anti-psychotic drugs dropped to 23 percent after one year. In the control group-those who did not receive person-centered care-use of anti-psychotic drugs was 42 percent. Behavior did not worsen when the drugs were eliminated for those in the person-centered environment.
What specific features of “person-centered” care make such a profound difference for frail elders? Some of those revealed in Baker’s investigation include:
Private, personalized bedrooms.
Residential living areas easy to understand and move about.
Caregivers permanently assigned to specific residents.
Involvement of family members in the elders’ daily lives.
Easy ways for residents to interact with the outside world.
Means to address residents’ spiritual needs and, in turn, foster hope.
Activities meaningful to elders.
As one aging participant at a Pioneer Network conference said: “Older people and people with dementia need someone to make them feel connected… Whenever we do that, we do an activity.”
But the most important factor, Baker told Action Pact, “is fostering relationships among everybody. if you could only do one thing, that would be the most meaningful.”