LeadingAge Magazine · September/October 2014 • Volume 04 • Number 05

Creating Inclusivity in Aging Services

August 23, 2014 | by Thomas Chang, Ilana Grossman, Debbie Hedges, Nikole Jay, Alla Rubinstein, Chris Sintros, Katherine Streeter and Jill Vitale-Aussem

Are we doing enough to eliminate ageism, ableism and segregation in retirement communities?

In 2014, the LeadingAge Leadership Academy curriculum for the first time included a small group learning project to identify and study a gap or issue in aging services. Four teams of eight to nine participants were formed and the groups set out to come to consensus on an issue to address.

Our team included a very diverse group of individuals from across the spectrum of aging services providers. Initially, finding a single focus area seemed impossible. Then we began discussing ageism in society. That discussion led to the realization that some of the most blatant examples of ageism and ableism occur right under our noses—specifically, within retirement living settings.

In studying this issue we examined the practices in our own organizations, researched existing literature, reached out to industry thought leaders, interviewed residents and staff at our own communities, talked with peers from other countries, and looked for bright spots—communities where the culture was becoming more inclusive.

Many of us had experienced residents complaining about living with “old people,” had heard from marketing professionals that you can’t sell a community to active seniors when you have the exact opposite sitting in the lobby, and had worked in or toured communities where frail elders were hidden away from the rest of the population. We quickly realized that the very basic physical and operational structures of retirement communities often serve to segregate frail elders from the rest of the population. Some communities have policies and operational practices that make it difficult for, or even expressly prohibit, residents of assisted living or skilled nursing from participating in the dining or activity programs of independent living. And frail elders aging in place within their independent living apartment homes often experience the pain of being shunned and ostracized by their neighbors. We realized that there is a cruel irony at play. If there is one place in society where an elder should be accepted and honored, no matter how frail and no matter what challenges he or she is living with, shouldn’t it be a retirement community?

We started asking ourselves some painful questions: Are we really honoring older adults when we focus on and celebrate only those who are well? Where else in society would it be acceptable to segregate and marginalize people who are deemed “undesirable” by their peers? Why is this happening? And most importantly, what can we do about it?

A sense of belonging is a fundamental human need. When an individual experiences social rejection and is marginalized or ostracized, there are devastating results. People experience this rejection in a variety of ways, as described by these CCRC residents:

  • “They seem to be looking at me but they are really looking over me,” explains Jane, an assisted living resident. (All resident names have been changed to protect privacy.) Patricia, who also lives in assisted living, fondly recalls a friend who would accept her and didn’t mind that Patricia had to eat with her hands. She now self-isolates, saying, “I am shy about who I eat with because I can’t use my fork and spoon. I sometimes choose to eat alone in the dining room because I know my eating with my hands can be upsetting to some.”
  • Sally, who lives in a nursing home, boldly puts herself out there, despite the reactions of “healthy and well” residents. “I go where I want and do what I want. They [meaning the IL residents] don’t like it all the time and that is tough,” she says as she sticks out her tongue and laughs. “I am a person! I am not this!” Sally points to her wheelchair. “I am a person and I have a right to go wherever I want. I have wheels and they have legs but we are all the same.”

Regardless of the circumstances, social acceptance is crucial to self-image. Jaya Seenichamy, a practitioner who specializes in the mental health needs of older adults, explains that an individual’s self-image is constantly evolving and developing. “When one’s self-image is negatively impacted, we see rapid decline. When people are ostracized or marginalized they will compensate in some way,” explains Dr. Seenichamy. “Some become aggressive, some self-isolate, some end up with depression and anxiety.”

We usually think of such devastation resulting from years of mistreatment and fail to see how occasional whispered comments about a person’s cognitive or physical status or exclusion from a dining table could have an impact. However, those seemingly harmless interactions are very dangerous. Research has shown that even a very short-lived experience of feeling ostracized can have a strong negative and long-lasting impact.

Over 5,000 people participated in a Purdue University ostracism study that utilized a computer game. These participants, regardless of personality type, had a powerful negative reaction to social exclusion after only two to three minutes—and without ever seeing the other person face-to-face. Even those living with Alzheimer’s disease are not immune. Dr. Seenichamy reminds us that while people living with dementia have cognitive impairment, their emotional perception is still very much intact.

Social rejection and negative views of aging can also affect physical health. Interestingly, the pain from social injury is registered in the same part of the brain as physical pain. A study published in the Journal of Personality and Social Psychologyfound that those with negative self-perceptions of aging had life spans that were 7.5 years shorter than those with positive self-perceptions of aging. There is significant, and potentially life-threatening, damage being inflicted on those who are marginalized or ostracized in retirement communities.

So, why does this situation exist? Why would the very communities that work so hard to honor elders condone this type of culture?

Dr. G. Alan Power, author of the book Dementia Beyond Drugs: Changing the Culture of Care, has introduced the somewhat radical proposal that people living with dementia should not be segregated in memory care neighborhoods but should, instead, live among their peers. In his new book, Dementia Beyond Disease: Enhancing Well-Being, Power makes many powerful arguments for this change. However, the biggest stumbling block to integration is a lack of acceptance by other residents. “There is a stigma,” he explains. “People are afraid of getting Alzheimer’s disease so they avoid those who are living with it.”

Fear of future disease or decline, indeed, seems to be a driving force. In an article in The Society for the Psychological Study of Social Issues, Todd D. Nelson defined ageism as “prejudice against our feared future self.” That’s a definition that resonates with people who live and work in retirement communities. As one woman living in independent living in a CCRC says, “It’s somewhat depressing to have a care center here. Odds are that I will end up needing to live there and no one looks forward to that. When you see people with infirmities you wonder when you’ll be one of them … it keeps it in the forefront of your mind.”

A fascinating study published in The Gerontologistdescribes the clash between existing older residents of a retirement community and an influx of boomers. Interestingly, ageism, in its traditional definition of prejudice against people of a certain age, was not the main root of the divide. Those of advanced age who were still active and “well” were readily accepted by the Boomers. Rather, ableism, defined as prejudice against those living with physical or cognitive disabilities, and fear of age-related illness and debilitation was at play.

This prejudice against the feared future self is so strong that some senior living organizations bow to the expressed wishes of their current and potential customers. Some marketing professionals may avoid the nursing home or request that frail elders not be present during tours. Organizations may create or maintain policies or practices that promote continued segregation by specifying who may dine in or participate in programs in different parts of the community. Even the budget process may be impacted with organizations allocating less money to provide for the dining or programmatic needs of higher levels of care.

All of these practices devalue frail elders and strengthen the unhealthy culture of segregation, ageism and ableism. In fact, when it comes to the avoidance of those living with Alzheimer’s disease, Power believes that part of the stigma of the disease comes from the less-than-optimal environment and living experience that our society provides for these individuals. We, in fact, may be part of the problem.

Brittany Wake, a young African American marketing professional working in a CCRC, has been exploring the issue of segregation, ageism and ableism in her community. Wake, a graduate student in a multicultural counseling program, is devoting her career to “creating a world where people who are not part of the dominant culture are valued.” She likens the situation she sees in retirement communities to the civil rights movement and the discrimination against and segregation of African Americans that was so widely accepted in our country only fifty years ago and is using that comparison in discussions of the topic with residents. And indeed, there are parallels. In his Letter from a Birmingham Jail, Dr. Martin Luther King described segregation in this way: “… any law that uplifts human personality is just. Any law that degrades human personality is unjust. All segregation statutes are unjust because segregation distorts the soul and damages the personality.”

Thought leaders in the field of aging services have made similar comparisons. “Ageism and ableism, like all prejudices, influence the behavior of their victims,” says Dr. Bill Thomas, founder of the Eden Alternative and the Changing Aging website. “It is our obligation to address ageism and ableism just as we would address sexism or racism.”

It comes down to changing the culture of a community and creating new norms. And leadership must take a strong and unwavering stand, according to Dr. Roger Landry, president of Masterpiece Living and author of Live Long and Die Short. “We have a moral imperative to address this issue,” he says. “Communities must set clear expectations for a culture of inclusiveness and be unwilling to accept behaviors that marginalize or ostracize others. All it takes is one person to contaminate a culture.”

While calls to action from professionals are motivating, even more compelling is this request from Patricia, a woman who lives in assisted living in a CCRC. Patricia called upon her community’s leadership to “help us to trust that we will continue to be accepted even when our hands and words stop working and help us believe that our friends will always be our friends.”

In 2012, a group of CCRC residents in Virginia hired an attorney to protest a new policy that had been put in place banning nursing home and assisted living residents from the independent living dining room and activity programs. The residents and their attorney believed that the policy violated the Fair Housing Act and the Americans with Disabilities Act. While the community partially changed the policy in response to the backlash and the case never went to court, it brings to light an issue that must be evaluated.

Accommodations that would fundamentally alter the nature of a program or impose an undue financial or administrative burden on the community are not required. “This is tricky, though,” says Daniel Sternthal, an attorney specializing in the health care and senior living field with the firm Seyfarth Shaw, “as there are not firm universal definitions of these elements that can be applied across the board.” Sternthal goes on to say that he works with a number of clients trying to accommodate the use of motorized scooters. “Providers can restrict usage if they have good reason, like overcrowding leading to safety concerns in the dining room,” he says. Other reasons, like refusing admittance because it makes others uncomfortable or could negatively impact marketing efforts, would likely be considered unlawful discrimination.

Imagine a restaurant refusing to serve a patron because they have had a stroke, or have dementia or are in a wheelchair. It would be completely unacceptable, and illegal, in our society. As the son of one of the Virginia CCRC residents stated about his father, “I can take him to any restaurant in Norfolk or the state of Virginia, except the one in the building he paid $600,000 to move into.” Sternthal agrees: “It is difficult to imagine a scenario in which a restaurant would be able to legally discriminate against a disabled patron.”

More and more providers are recognizing that the status quo is unacceptable and are working to create environments of acceptance. Changing a deeply-rooted culture is difficult but well worth the effort.

Moriah Bernhardt, director of community life at Clermont Park, a Denver, CO, CCRC that has been working on eliminating ageism, ableism and segregation for three years, says the community knew there would be significant challenges and opposition from residents and staff, but leadership held firm because they had seen first-hand the damage that was being done. “We realized that challenging the status quo would likely not come from residents who had become accustomed to this culture,” says Bernhardt, “but after we started changing things we quickly found many residents who shared our beliefs. They just needed a voice of leadership to take action.”

The community went from one with a significant divide between those who lived in independent living and those who lived in the nursing home, or “the dying center” as residents once called it, to a true community where people with different needs and levels of ability regularly come together through dining, programs and outings. And it’s not the paternalistic relationship the community used to see when more “able” residents felt pity for those who were frail. Instead, they are equals. “Once people started knowing each other as human beings, they stopped defining each other by their disabilities,” adds Bernhardt. The culture of inclusivity is now so deeply rooted that residents educate each other when someone is making discriminatory remarks or not honoring another resident.

Judson Park, a CCRC in Des Moines, WA, has seen such benefits firsthand. During an inclusive community dance, team members commented on seeing one of the nursing home residents “moving so gracefully in her wheelchair, even with limitations of movement on one side of her body due to health history.” A resident of the community’s independent living neighborhood had similar thoughts. While she spent very little time on the dance floor, she explains that what made her evening enjoyable was to “watch those residents who live in the nursing home enjoying the music and not being held back by use of mobility aids.” By gathering everyone together, regardless of health care needs, the community broke down the invisible walls that existed within their community.

Team members can play an integral role in breaking down these barriers. When Helen, a woman who lived in independent living at St. Ann’s Community in Rochester, NY, for 16 years, transitioned to the nursing home, she missed having a kitchen so she could host her friends for dinner parties. When St. Ann’s team heard about this wish, they mobilized to coordinate a series of get-togethers so Helen could once again enjoy being with her friends. They secured funding through an employee-sponsored fund designed to support such resident-directed care needs, and worked with multiple departments to map out the details. Helen has since hosted her friends twice. This experience has helped her embrace the nursing home as her home and has kept her engaged in the larger community. She credits St. Ann’s staff for keeping her connected with her longtime friends, who themselves are becoming less mobile as they age. “They seem to enjoy coming over,” says Helen. “I like it … it makes living here more enjoyable.”

Like Helen, other people living in environments where barriers have been removed are reaping the benefits of creating and maintaining relationships with their friends. “I have continued to deepen my relationships by seeing my friends and make new ones by sitting with them regularly,” says Alice, an assisted living resident who moved from residential living at Judson Park. Resident leaders have emerged to show others the way, adds Alice, “I admire my friend who lives in the residences. She treats everyone the same, no matter if they live in independent living or are sick in the nursing home. She is getting to know the people. She is a real leader to bring people together.”

In the highly competitive retirement community market, an inclusive culture may also become a competitive niche. Nicole Pollard, sales and marketing director at Clermont Park, says her sales team proudly communicates their culture and beliefs to prospects. “When someone is on a tour and comments on wheelchairs or walkers or seeing so many ‘old people,’ we tell them about this amazing culture and the way that we honor each individual. We tell them they won’t find that in most communities. It’s become a selling point.” And it works. The community is at 100% occupancy. The community has experienced family members shopping specifically for a community where their loved ones, who would be living in assisted living, would be accepted by the general population and able to use all of the amenities. The competitors lost out because they didn’t allow assisted living residents to dine or attend programs with the rest of the community. As more communities become inclusive, and begin selling this culture, those with a traditional model of segregation may lose out.

Donna, the daughter of residents of Newbury Court, a CCRC in Concord, MA, explains how difficult it was for her parents to find a community where her parents would be accepted. Other communities “wanted their facility to be a showcase,” she explains. “People wracked by the tremors of Parkinson’s, debilitated by dementia, or simply gnarled by age, were made to feel they were an embarrassment—beings unfit to be seen in public.” It is imperative that we challenge the status quo and put an end to cultures in which frail elders must endure the pain of discrimination. Our communities deserve better. Our residents deserve better.

Changing the mindset and deeply-rooted culture of a retirement community may seem impossible. It isn’t. But it does take a firm commitment, hard work, and an understanding of the principles of change management. Just as the culture change movement has created a new reality for nursing homes, if we become knowledgeable about and address the issues of ageism, ableism, and segregation, we can create senior living environments that embody the true meaning of the word “community.”