An exciting movement known as "culture change" is sweeping through nursing homes. It seeks to transform nursing homes into homey environments that focus on what residents want, not what's best for the institution and its staff. They are supposed to let residents decide what they want to do--when they want to get up, when to have meals, what they'd like to eat, and how they spend their days. To this end, staff are empowered (they are supposed to get to know the residents for whom they provide care so they can figure out how best to help them) and cross-trained (all staff members perform all tasks, like a family rather than an institution). A recent study found that fully 85% of directors of nursing in a large sample of nursing homes say that their facilities have incorporated at least some features of culture change, compared to 56% in a study done by the Commonwealth Fund in 2008. But does culture change succeed in improving quality of life?
My father lives in a nursing home that is supposed to fully embody culture change. The facility is beautiful. Almost every resident has a private room. The building is carved up into "households" of only 14-15 residents. Life in the household is organized around a bright "country kitchen," similar to what many people experienced in their own homes. But as a home that is supposed to enhance well-being, it is unequivocally a failure.
My dad is 89 years old and has moderate dementia and Parkinson's. Like most of the people in his household, he needs help with the most basic activities--going to the bathroom, getting dressed, bathing, and walking. He cannot initiate activities. He expresses no interest in the various events that take place in the building such as concerts or discussion groups, so unless a visitor takes him, he does not attend. He used to spend most of his time in his room, looking at the New York Times or watching television; because he sometimes got up without calling for help and often fell, he is now required to spend all day sitting at the dining room table where the staff can keep an eye on him. He has nothing to do other than watch a large screen TV that is on continuously and study the daily "schedule of events" (none of which he attends) that is distributed to each resident.
As a group, the nursing assistants at this nursing home are kind and gentle and provide adequate personal care--though they often neglect to put in my father's hearing aid, forget to shave him, do not take him to the bathroom with sufficient regularity to avoid accidents, and leave him wearing soiled clothes. They do not try to engage him in conversation or come up with suggestions for how he might spend his time.
My father lives in an extremely high end facility that was designed from its inception to implement resident-centered care. Perhaps the facility succeeds with the small minority of residents who have no cognitive impairment. Perhaps the facility succeeds with residents who are mobile. The idea behind culture change is inspiring. But either it doesn't work or its implementation is tremendously flawed. In either case, it's time for high quality research to monitor the outcomes of culture change and to figure out what needs to be done to make the dream a reality.
Hi. I just discovered your blog. My parents are 87 and 90, Mom has dementia, Dad has multiple challenges. The comment you made about the caregivers failing to engage your dad in conversation or suggest ways for him to spend his time really struck me. While I know our loved ones with dementia have changed in how they experience a life that would be crushingly dull for us, I know they can be relatively content doing not much, I still crave dignity for them. One of the hardest things, even 10 years into dementia, is having my mom always referred to in the third person. All doctors' conversation default to them speaking directly to me about her, completely in her presence. She is mostly oblivious, yes. But when spoken to directly, she does engage. As a caregiver and daughter I have grieved my mom slipping away. It makes it worse when others treat her as if she was truly invisible. Your blog is a thoughtful reminder we are not alone. No matter our stations in life, at the most basic level we are all sons and daughters.... Thanks
ReplyDeleteIt is possible to achieve the benefits from the cultural changes you described.
ReplyDeleteI recently moved my Mother-In-Law from a group home to Beatitudes, the skilled nursing facility written up in The New Yorker, May 20th.
She has moderate dementia and spends a lot of time in the common room with many other residents. I now have seen her smile for the first time in months. None of the residents are agitated and difficult behavior is minimal.
She is mildly stimulated by other residents and is actually enjoying her time there ! !
The staff focuses on limiting the confusion and maintaining the comfort of the residents. I have seen that their approach works.
John Shiner
Phoenix, AZ
Icouldn't agree more. Having spent time in nursing homes both as a family member and a long term care ombudsman what you describe is all too common.
ReplyDeleteCulture change is a great buzz word but doesn't hold up to the reality of moderately and severly impaired residents.
Sadly, any effort at nursing home improvement is prevented by the staffing policies of the large chains that funnel the monthly income to headquarters through a variety of subterfuges (primarily a multiplication of wholly-owned "independent contractor" entities that each take a slice of patient payments as their profit). The result is patients becoming dehydrated, developing pressure ulcers or lying in their own waste for hours because of to few caregivers. I know from personal experience that nursing homes can be run well with huge profits for the owners, but it is simpler to skimp on care and not really manage well. Many, if not most, large chains are now owned by real estate investment trusts, which tells you where their real interests lie.
ReplyDeleteYour disheartening analysis of the limited success of the culture change in nursing homes crystalized for me some of the differences between my elderly mother's and my elderly father-in-law's experiences at similarly progressive facilities. Both suffered from cognitive impairment, but my father-in-law also had serious physical handicaps that confined him to a wheelchair, whereas my mother remained physically healthy and mobile, with dementia as her only symptom. My mother was fully able and enthusiastic about participating in that list of daily activities. She was socially outgoing and never wanted to stay in her room. She needed to be busy and active and around people, and thus the facility worked for her. These were personality traits she had had throughout her life. So the enrichment opportunities served her well because she was already inclined toward reaching out to others. My father-in-law had a more introspective, less outgoing personality, combined with serious physical impairments, and thus needed more help than was available to participate in the cultural enrichment activities. Yet he was the one who needed them more (my mother would have reached out socially even without the daily schedule of events). If residents aren't offered the necessary help to facilitate their participation, the culturally enriched nursing home will not serve those who need it most.
ReplyDeleteI would like to read your suggestions on HOW the high end nursing home could do more for your father.More personnel? One-on-one socialization? I have cared for my husband for 13 years following a stroke at age 74; during the last 3 he has been bed bound. All my skills as a former professor in psychology have functioned to give him a meaningful quality of life: playing Sousa March music while we drum on spoons and bells; watching Charlie Rose together and having a rudimentary discussion afterwards; reading from books he has selected, talking about his childhood and family gossip. But those activities are now past. I participate in a support group (something of an old-timer by now) and have gradually increased the hours of his caregiver who now comes 4-5 hours per day, 6 days a week. We're very lucky to have this wonderful helper who does the heavy lifting. I have no intention of placing my husband in a nursing home. He no longer wants to participate in much. His hearing is poor; his sight is greatly impaired; he doesn't want music or TV playing and of course can no longer read the NYTimes or "see" photos of his grandchildren. His speaking is labored and frustrating (for him, not for me because I've become accustomed to playing 20 questions and getting clues from nods and facial expression). This is labor intensive and a labor of love. How is a nation going to provide this kind of care for our elderly? What kind of nursing home can give this focused attention to an 87 year old man with dementia and stroke disabilities? If the care is going to be done household by household, we will be lost as we the elderly, outliving our active years, require far too much of our loved ones. I certainly will not do this to our children. And if even high end nursing homes cannot offer something more than you have described, what do you suggest should be done? Use your father as a case history and tell us what a better nursing home or home care could do for him.
ReplyDeleteI have followed the new fad in these theoretically home-like cottage SNF environments. I've spent considerable time around a very well thought of CCRC with good conventional assisted living and SNF facilities and a pretty stable and high morale staff.
ReplyDeleteI have wondered how the cottage environment would work for residents like your father who are into the stage of dementia where they rarely initiate any activity rationally. I have also supposed that with staff more scattered it would be difficult to maintain in aides high standards of what I will call psychological and social care, which are harder to teach out of context. These cottage facilities emphasize that there is value in having the same caregivers for the same residents on a consistent basis - yes if they are all pretty good at what they do.
The other problem I see is that the smaller the resident population the more likely it is that the unit will go through periods when a high proportion of them need more help than your long-term average. Will the care plan and business plan allow staffing up that cottage for those needs?
A further issue is one that is not unique to the cottage model but may be exacerbated by it. Some dementia patients in good physical health tend to wonder about at all hours. Their unwanted intrusions are not easily avoided by the physically seriously impaired.
In short, to me the cottage plan sounds great for folks with serious chronic physical impairment and perhaps (I can't tell) for those in early stage dementia. Not for those like your father who are past noticing whether it is homelike or not.
The following brief excerpt from a paper about nursing homes starts to explain what's wrong. I can e-mail the paper (pdf) to anyone interested.
ReplyDeleteTThe latest oversimplification of design principles is the enthusiasm for small-scale nursing homes built to resemble elegant homes and woven into the community. With great rooms and carpeted bedrooms suites, every design and program element is recalibrated to declare independence and luxury. These are some wonderful ideas. But the packaging imposes characteristics that clash with the nature of the frailty challenge. The threats come in a variety of forms.
One is the physical design. The quest to create more privacy and independence pushes the private (bedroom) spaces away from the semiprivate (great room), ironically recreating, if on a smaller scale, the problematic corridors of the old-style nursing homes. The distant great room contains the seeds of an even more insidious old-style nursing station, pulling and holding staff away from the resident rooms. Rather than the desk and chart of the traditional nursing station, the great room, with its kitchen, dining, laundry, social spaces, tables for planning and communication center, is a magnet for staff. It would take superhuman resistance not to feel the pull.
Finally, there is minimal public space. The small-scale house may have wonderful private and semiprivate space. But there is insufficient volume to accommodate the community space that is critical for sustaining a public persona.
This new architecture is often accompanied by a new distribution of tasks. The scale is too small for departments; the duties of nurse’s aide, dietary aide, housekeeper and launderer can be combined into a universal worker. This is attractive in a number of ways. But it also can set up a competitive dynamic between people tasks (helping residents in the bathroom, answering call bells, assisting residents with dressing) and mechanical tasks (laundry, cleaning, kitchen chores). These two types of tasks are often on very different schedules. The mechanical tasks take place in rich, socially engaging spaces; the results of the work are visible and subject to easy evaluation (as with meals). This can privilege them over private, boring, perhaps unpleasant personal care tasks, distant from the fun and stimulation.
There is another staffing difficulty built into small-scale design that arises not from the design but rather from its apparent principal virtue: the small number of old people in the facility. The small environment may not generate sufficient revenue to hire and retain the sophisticated expertise and judgment required for the care of today’s profoundly frail older people. To see the problem in this requires consideration of who those people will be.
The splay of differences among old people has great significance for the design of health-associated buildings for very old people. The dramatically increased numbers of frail older people enable us to design very different specialized settings, programs, protocols and staff training around groupings of people. With the increasing overall number, there is an increase in the variety of niche groups for whom distinct specialized programming will be beneficial.
And here, isolated, small-scale settings do not favor good care for the frail old. First, there are insufficient numbers in each niche to develop the optimum specialization. If the small setting selects a niche in which to specialize, when a resident no longer fits that category, when her needs change, she is either stranded in discontinuity or in an environment no longer optimally fitted for her needs. The small-scale setting can easily evolve into a beautifully appointed setting for doing a bit of this and a bit of that and none of it well. The only real specialization may be around the higher socioeconomic status of the clients. And in this sense, their wealth would be a disadvantage.
We are always saddened to hear of stories of elders who need support but receive only the basics or less. In fact, that is what drives us every day: to grow awareness, new skills and attitudes in organizations that serve frail elders. The culture change movement mentioned above in this blog has many paths and many leaders. Individuals and organizations learn about it, want it and interpret it as it guides their actions. As a result, the outcomes are as different and varied as the elders we serve.
ReplyDeleteIn time, as organizations and models excel, standards will grow and shape the terminology of culture change. We are working toward that day.
The Household Model pioneered by Action Pact emphasizes three initiatives that are imperative. Without all three we don't consider it true "culture change."
The first is renewal of the spirit, helping all of us understand that anyone who lives with frailty is a person and an adult and deserves to be interacted with in the same way, and with the same respect, that any other adult would expect.
The second initiative is renovating into home. This can mean all kinds of things, making sure the environment is filled with loving interactions; with life - (friends, animals, plants); with comfortable surroundings; with access to food and the outdoors; and with choice. Households (cottages, small houses) are some of the best ways to accomplish this. The warm homey spaces are dedicated to a smaller group of elders, with a living room, dining room, kitchen and often a porch, deck or patio.
The third initiative is reframing the work we do to put decisions in the hands of the elders. This means sharing duties. Not necessarily "universal work" but cross-trained or blended roles with the purpose of meeting the elders' needs when they have those needs - getting to the bathroom, getting something to eat, spending time with someone to listen to them and comfort them.
Our process is to help transform organizations into organisms, living entities who grow and learn and change. We believe in high involvement. That means engaging all stakeholders: elders, families, staff, board members and the local community, all working together to improve opportunities for a good life every day for each and every resident. This requires continuous commitment, growth of staff's critical thinking skills, and leadership willing to role-model and work alongside.
I don't disagree that there are many places using the words “culture change" to describe what they are doing, and it may not always be enough to truly serve the needs of our loved ones. Perhaps there are even those who use the words as a marketing ploy. But please don’t throw the baby out with the bathwater. This is a young movement and serious work is being done. Yes, there is still much to learn, there are folks who espouse the values but haven’t yet grown all the needed skills. But believe this: many elders across the country feel at home every day and and many of those who serve them find their work not only satisfying but sacred.
I encourage anyone that is interested to contact any of us at Action Pact to learn more or to inquire about visiting someplace where the goal of the staff and the organization is to provide a good life every day. A good life in a homey place.
Megan Hannan & LaVrene Norton