Changing the Narrative (CTN) believes that we need to reframe how we think about aging in every area of life. To accomplish this, the first people we started talking to were professionals who serve older adults, from older adult living communities to policy groups.
That is how we connected with Jill Vitale-Aussem, a powerful advocate for changing how we think about older adult communities. She is President & CEO of The Eden Alternative, a nonprofit dedicated to improving quality of life for older adults and caregivers, wherever they live. During her more than twenty years of experience, she has worked to understand the experience of living in these communities, including 24-hour stays as a resident herself.
“I’ve experienced cultures full of loneliness, helplessness, and boredom where few opportunities for growth, inclusion and purpose exist,” Vitale-Aussem recounts in her book Disrupting the Status Quo of Senior Living: A Mindshift. The Eden Alternative identifies “loneliness, helplessness, and boredom” as the root of older adult suffering.
This is not how it has to be. The problem starts with how we think about older adults and people with different physical and cognitive abilities. Hence the word “mindshift” in the title of her book. Her call to action is do more than change certain policies. We must change how we think about aging and caregiving, so we can create living situations where we would all like to age.
Changing how we think about elders
It is telling that most of us do not want to end up “in a facility”. According to Vitale-Aussem, people often resist living in older adult communities because that would mean admitting to being old. In our society, being old is equated with having no value, no purpose. These beliefs about aging affect our physical and mental health, as well as how we treat older adults.
The words we use make a difference. Vitale-Aussem and The Eden Alternative are working to shift how people think about living situations designed for older adults. “Community” is preferred over “facility”. As with other anti-ageism advocates, they are moving away from the word “senior” to “older adult” or their preferred term, “elder”.
The words are just the beginning. We need to change our beliefs to reflect reality. For instance, older people do not just need to be kept busy. At every age, we need purpose and meaningful engagement. We all need to make real choices, not have everything done for us. Elders are not the “other”. We all – regardless of age – find purpose in managing our own lives, serving others, and pursuing our unique interests.
Shifting thinking leads to better quality of life
Vitale-Aussem and her organization help older adult living communities create places where people find meaningful purpose and relationships and can direct their own lives. Solutions vary depending on the individual and the community, but general goals include building relationships and avoiding meaningless activity.
One place where we need to shift our thinking is around dementia, says Vitale-Aussem. For instance, many people “believe they can’t learn anything. The prevailing narrative about dementia is a story of tragedy”. However, the reality is that dementia is a disability that needs accommodation. Individuals living with dementia can continue to learn, find meaningful purpose, and give back to their community.
People are opening their minds about what those with different cognitive abilities can do and shifting thinking has resulted in some surprising changes. In one community in Australia, residents play an important role in regular chores, like lawn care and making meals. Some memory care communities have eliminated “locked neighborhoods” in favor of an inclusive community. Instead, they encourage open environments and solutions tailored to each resident. These communities find ways to include people in normal activities of daily living. Building individual relationships keeps people engaged and safe.
Shifting thinking also makes a difference to staff and caregivers. Communities that start thinking differently became places where residents are happier and staff feel more connected to each other and to residents. The result is increased job satisfaction and better staff retention.
Where we live as we age shouldn’t feel like a punishment and it doesn’t have to. This starts with shifting how we think about aging and older people, so we create places where people want to live as they age.
Reframing is more important than ever
With the current pandemic, the problems with our thinking about elder care are even more glaring. While the media has focused on cases of neglect, there are much bigger and more complex issues facing these communities, now and in the future. Vitale-Aussem and CTN’s Director, Janine Vandenburg recently discussed this in a live interview (recording below).
“The organizations and people that we work with around the world are really challenged the most, other than hospitals, with this COVID-19 situation,” says Vitale-Aussem. “Even the best leaders, the ones who’ve been running these amazing communities, are struggling to get PPE.” This includes battling to get personal protective equipment (PPE) such as masks, gloves and isolation gowns. These communities need the same PPE that hospitals and health care workers need to keep people safe.
Ageism has had a real impact on the ability to support people in elder communities during this time. “There should be honor for elder care workers like there is for medical care workers. Why don’t we?” asks Vitale-Aussem. She quotes Ashton Applewhite: “When a society doesn’t value older people, they don’t value the people who work with them.” She continues, “When we knew all the things we know about this virus, why weren’t nursing homes at the top of list for PPE along with hospitals?”
COVID-19 is impacting more than the short-term
“I have huge concerns about the impact of this on our field. We have an aging population. We already have a staffing crisis. I know, as a former nursing home administrator, it is already a profession of high burnout. It is devastating what is going on in these communities and then to be disregarded by society on top of that . . . I think we are going to have major, long-lasting impacts in not supporting these people. We cannot afford this with an aging population. We cannot stigmatize this population (people working in elder care) even more.”
The industry will need to re-think many things in light of the pandemic, like building new communities with consideration for infection control, privacy and more space. Communities that are faring better right now are also ones that have empowered their staff and residents to find their own solutions. This crisis is revealing an even greater and more pressing need to shift our thinking on aging and our actions when it comes to caring for those who need support.
Vitale-Aussem recently became trained to give Reframing Aging trainings, the basis of CTN’s mission. Work like hers is part of the broader movement to create a world where we can all find meaning and purpose at every age. We look forward to following her work and continuing to connect those who share this mission.
Read more about what can be done right now to support elder communities near you in this blog from Vitale-Aussem.
Read more about reframing aging.
Sara Breindel, Changing the Narrative blogger
UPDATE: September 2020: Read more about how older adult living facilities like Eden Alternative are weathering the pandemic better.