There was no medical reason for Maude’s rapid decline and death. Though in the middle stages of Alzheimer’s, she could still do for herself many of the daily tasks of living—she just needed help filling in the gaps. So they took her to the county’s finest nursing home, a deficiency free facility where they efficiently and methodically saw to her every bodily need.

When she first arrived she could still clean and dress herself, though slowly, and she needed help with the soap and buttons. But they did it all for her, pulling her up from her pillow every morning promptly at 6 and hurriedly washing and dressing her without her participation. She often fought them, but would eventually surrender and become like a mannequin in their hands.

She could have walked, slowly, to the dining room. But to ensure she got to breakfast on time, they routinely plopped her into a wheelchair and whisked her down the corridor until she could no longer walk at all. She had always loved gardening and the outdoors, and she longed to investigate the rose bushes outside her window. But there was no one to take her, and staff thought it too risky to let her go alone.

She was intelligent and could have conversed with her caregivers. But they knew her only by her dementia and assorted frailties, thus she was much diminished as a person in their eyes. Often, they talked about her to others in her presence as if she was not there. With each benign act of neglect Maude retreated further within herself, and it was not long before she spent her days drooling and slumping like a rag doll in her wheelchair. The light in her eyes slowly faded until it was gone forever.

Maude is a fictional character, but her story is all too real for countless frail elders throughout the country, whether living at home or in the finest nursing facility. We are led to believe that until there is some revolutionary medical breakthrough, all we can do for the cognitively impaired is keep them safe and alleviate their physical suffering in the most medically efficient way possible. The focus is to treat their weaknesses rather than develop their strengths.

Institutional realities crush sense of self

Often stressed out, under-staffed and minimally trained, workers are evaluated more on cleanliness and the timely completion of routines than by the level of joyful living they enable for elders. Personal relationships with residents are so discouraged by the system, elders often are better known to staff by diagnosis and room number than by name.

Even the elders’ most basic individual choices—when to get up, what to eat and how to spend the day—are trampled beneath the mad rush to meet the demands of the institution. Like cars on an assembly line, elders too often are “done to” rather than “assisted” or “cared for.” Whatever abilities and self-identity are left to the elder waste away until he or she reaches what the internationally renowned dementia researcher, Dr. Thomas Kitwood, called a state of “unbeing.”

Add to this cultural mindset a sterile physical environment with no semblance of home, is there any wonder even reasonably healthy elders become increasingly disoriented and depressed; their caregivers ever more disillusioned and discouraged?

It does not have to be this way

The Omnibus Budget Reconciliation Act of 1987 (OBRA) directs nursing facilities to provide care “in a manner and in an environment that maintains or enhances each resident's dignity and respect in full recognition of his or her individuality.”

“Person-centered” strategies to do just that were being pioneered and shared among eldercare advocates even before OBRA. And it was in this spirit that LaVrene Norton started Action Pact, Inc. http://www.actionpact.com/index.html, a consulting and education company that assists organizations in creating true home for frail elders in a person-centered environment.

At Action Pact, we have drawn together what we believe are the best of current practices of person-centered care into an integrated approach called PersonFirst®. Our aim is to cultivate “personhood” by recognizing every elder, no matter how frail, has the potential to grow socially and spiritually, and the right to live life to the fullest.

To that end, we focus attention on retaining their individuality and nurturing their special abilities rather than merely treating their disabilities. Action Pact originally conceived PersonFirst® as a way to encourage caregivers to treat people living with dementia with the dignity and respect afforded to any mature adult, but soon realized it is the proper perspective for working with any elders, whether they live at home or in long-term care. For example, you would not normally pull an adult out of a deep sleep and wash and dress him as you would an infant. More likely, you would allow her to awaken naturally and attend to her own hygienic needs to the extent possible—just like she did at home.

Collaboration, communication are key

In a person-centered environment, Maude would walk to breakfast with her stroller if she wished, perhaps with a caregiver following closely behind with his hand at her back. As for the chance she might fall, there is a fine line between calculated risk and repressing a person’s choices. There needs to be ongoing discussion among staff, residents, family members and regulators about where to strike the balance.

Right from the start, residents should be directing their own care as full partners in the care planning process. We’ve found ways of softening the assessment process to help ease elders’ transition into their new home by putting them in the driver’s seat and really getting to know them as individuals. Our DVD and workbook pack, Soften the Assessment Process http://www.actionpact.com/kit-sap.html, is filled with ideas for making this happen.

Continued direction from elders about how they receive care and play out their day is essential to their comfort and well being. You will find several techniques for person-centered care planning that involves the elders and their families in every step in the workbook Changing the Culture of Care Planning http://www.actionpact.com/wb-cccp.html.

Nurturing the caregiver’s spirit

A person centered-environment nurtures the caregiver’s spirit as much as the resident’s. The new care philosophy is usually accompanied by changes in the organizational structure and physical design that puts more authority for decision-making into the hands of front-line staff. For example, person-centered strategies work best when the physical plant is divided into smaller living units comprised of no more than 10-12 residents. Small caregiver teams are permanently assigned to each unit, enabling residents and staff to know one another. Unlike in the traditional care environment, personal relationships between elders and their caregivers are encouraged.

Team members often are cross-trained so they can respond to the immediate needs of residents. Housekeepers, for example, might also become CNA-certified, while CNAs may learn food preparation and other homemaker skills. Meanwhile, everyone in the facility is trained in person-first techniques. As a result, workers in positions that normally afford little opportunity for advancement—like housekeeping or dietary—often find themselves in leadership roles in the person-first environment. The focus on providing for residents’ full spectrum of needs rather than catering to the timelines and procedures of the system validates the reason caregivers began working in long-term care to begin with.

This environment is embodied in the Household Model, pioneered by Action Pact and detailed in In Pursuit of the Sunbeam http://www.actionpact.com/book-ipots.html written by LaVrene Norton and Steve Shields. The book is full of practical guidance for change on personal, organization and physical levels, all with a focus on leadership shared by all stakeholders in the organization. In Pursuit of the Sunbeam is also a component of The Household Matters Toolkit http://www.actionpact.com/kit-hm.html along with training guides, DVDs, policies and procedures and a human resources system. Organizations around the country have used it to support the success of their transformation to the Household Model. Steve Shields and David Slack lay out exactly how it can be done in The Household Model Business Case http://www.actionpact.com/wb-hmbc.html

What a change in Maude, the woman who used to speak to no one and spent the day alone slumped in her wheelchair (when she was not fighting with her attendants!)

That was before her daughter began bringing her to the Community Learning Circle where we learned Maude likes Elvis Presley and gardening. So we bought some old Elvis albums at the used record store and set up a cozy little corner in the family room with a stereo. It wasn’t long before Maude was sitting there with the headphones on, singing “You ain’t nothin’ but a hound dog, crying all the time.”

About that same time we finished building the community garden on the patio with raised planters accessible to residents in wheel chairs. Since then, Maude has discarded her wheelchair for a stroller and is on the patio nearly every day tending to her tomatoes. It warmed our hearts so the day she smiled and handed a ripe tomato to one of the caregivers she used to scream at.

Again, Maude is a fictitious character, but the story related here is based on real experiences recorded in nursing homes that have adopted a person-centered philosophy.

We relish the day is will a story shared by countless frail elders living at home or in long-term care communities across the country.

Chances are this isn’t the first time you’ve heard or thought about how life could be better for elders living in long-term care. Ready to broach the subject with the rest of your team? The Chances Are http://www.actionpact.com/vid-ca.html DVD is an introduction to the culture change movement. Just 15 minutes can get the winds of change blowing in your organization. When you have questions or are ready to take steps toward building a more person-centered organization, Action Pact is there to help.

Action Pact is a culture change consulting and education company that works with organizations around the country as they move from institution to neighborhoods or households. For more information call Action Pact – 414-258-3649