An Interview with Mary Lou Ciolfi, JD, MS
Senior Program Manager
University of Maine Center on Aging
~Kathryn Harnish, Advocate, Elder Abuse Institute of Maine
From my very first encounter with Mary Lou Ciolfi, as a new advocate learning about the impact of ageism, I’ve admired the passion and commitment she brings to understanding and addressing the complex health and social needs of older adults in a world imbued with ageist beliefs. A licensed attorney, former assisted living facility administrator, and public policy researcher, Mary Lou now serves as a senior program manager at the University of Maine Center on Aging, where she is currently exploring person-centered long-term care. Needless to say, it was a pleasure to have an opportunity to engage with Mary Lou in a “deep-dive” conversation about her work, and I’m excited to share some of the highlights of our discussion here.
Our conversation began as Mary Lou reflected on her experience as a care facility administrator and how that work has informed her thinking about ageism (discrimination based on age).
Mary Lou: I can honestly say that, for as long as I was in the aging services field, I had zero awareness of inequities and injustices that older people experienced…and I feel a certain amount of healthy shame about that. It was only when I went to Muskie [School of Public Service] that my thinking reoriented around older adults as a marginalized group. The Reframing Aging project had just started its work to create greater public understanding of what “aging” means. Reading those reports just got my wheels turning, and I suddenly started to see the world very, very differently. I began to understand how, not knowing what I didn’t know, I had perpetuated stereotypes and unhelpful attitudes of overprotection, condescension, and “elderspeak” in my work. But now that I know better, I do better. And then of course, becoming an older person has a way of changing your views on lots of things!
Kathryn: I’ve become very sensitized to many of these issues in working with older people through the Elder Service Connections program…and in seeing interactions with my mother and the staff at her residential care facility. It’s well-intentioned, but the harm it causes is insidious.
Mary Lou: The history of ageism – especially how we got off on the wrong track of overprotection after the Civil War – is very much with us today, informing our attitudes toward older people. The marginalization of older people has been around for centuries, but it intersected with protectionism with Civil War pension benefits and, later, Social Security benefits. These were – and are – important public safety nets, of course, but we seem to have taken the protection of older people to a ridiculous extreme by eroding their autonomy and sense of agency. As a society, we’ve ended up in a place where we truly do see older people as lesser; through our ageist beliefs, we deprive older people of their essential humanity. And that's unfortunate. But what's most unfortunate is that people don't see anything wrong with that. We think it's a good thing – that we are protecting older people from poor decisions, hardship, or risk…and that's the mindset that has to shift.
Kathryn: I have a client that I've been working with for a while who has been through a rough patch. And he said, “Kathryn, thank you for treating me like a human being.” That just stopped me short, with a huge lump in my throat.
Mary Lou: Those exact words – “treat me like a human being” – were uttered by several residents in the Designation of Excellence project, which explores person-centered long-term care, that I'm working on. And there were lots of similar themes – you know, “I'm an adult” or “I have a long history, please respect my experience.” The desire to be visible came through, loud and clear. Older people feel this ageism that’s directed at them acutely, and they don’t like it. And worse, nobody's really listening to their feedback about how this feels. Our project is trying to listen to and amplify these voices.
Kathryn: In so many cases, folks end up in a situation in which the options for independence that are afforded them are so limited. How do we promote self-determination and autonomy when there might be choices, but it's a matter of choosing between bad option A or bad option B? That's really hard and dehumanizing, too.
Mary Lou: I often talk about the structures that exist for older people moving into long-term care. Folks realize that there are going to be some changes when they move into a residential setting, but I don't think they really expect them to be so dramatic, to be such a dehumanizing experience. There's so much loss there, loss that’s made worse because there’s no continuity – of environment, of self, of identity. We don’t have the systems and structures, practices and policies, in long-term care to create a better experience for people making this transition. How do we expect people to react to such a tremendous upending of their previous lives?
And even though we have laws and regulations and, here in Maine, residents’ rights for people in long-term care, these really are just token rights. There's a fundamental disconnect between truly giving someone agency and just paying lip service to that notion. People in long-term care don't feel like they can make choices, just like you said…we totally forget that these are people who have lived long lives and have lots of skills to help them evaluate risk and benefit. Yes, some individuals may have diminished capacity to evaluate certain types of risk, but there’s no infrastructure that allows people choices about the most basic things – what to eat, what to wear, what activities to participate in. Not only do we lack a forum for conversation about these issues, but we lack the means to memorialize and honor those wishes. We have a long way to go.
All this said, I do want to recognize that most of the long-term care facilities are doing the very best they can in a dysfunctional system in which the care that they provide is constrained by poor reimbursements, labor shortages, and other factors well beyond their control. In my previous work as a facility administrator, I felt these pressures acutely, every day, and I have lots of empathy for their position.
Kathryn: I know that you’ve spoken about your father, who recently passed away at the age of 97, and the challenges that you and your siblings faced in balancing rights and risks.
Mary Lou: Yes. We really don’t have space for conversations about the impact of older people’s choices on other family members. If my father had wanted to do something unsafe and was injured or otherwise harmed as a result, the consequences would have been shouldered largely by me and my siblings. There’s no place for a conversation about this, no negotiation, no compromise. For my family, it was either, as an adult child, I made the decision for Dad, or Dad made his decisions entirely on his own…there’s little guidance for anything in between.
Kathryn: As you know, that supported decision-making model is one that is central to the work that Elder Service Connections advocates do, so hopefully our work can inspire some evidence-based change in the field!
This discussion of rights, freedom of choice, and dignity of risk reminds me of a terrific Department of Justice symposium on capacity determination that I recently had the opportunity to attend. It was good to spend “virtual time” with so many colleagues across different domains that share a deep understanding of the dignity of risk and a passionate desire to protect people’s rights.
Mary Lou: One of the hurdles for the Reframing Aging initiative is to make inroads into the healthcare and legal communities. In the legal community, there’s been virtually no work to understand how lawyers and judges, who are very familiar with the whole idea of autonomy and self-determination, respond to the contextual, social, and systemic factors involved in the process and experience of aging. How can they make the leap into allowing older individuals to have a greater sense of agency? Some states have done a bit of work on uniform practices for guardianships and conservatorships, and the wildly abusive guardianship practices in Nevada have prompted changes to laws and set off efforts for other states to reform the guardianship process. But again, we have a long way to go.
Kathryn: I recently spoke to a gentleman whose sibling, acting as his Power of Attorney, put his home on the market without any conversation with him. Neither this man nor his sibling really understood the scope of an agent’s authority, and he felt completely powerless, completely without rights in this situation. When I informed him that he could revoke that POA or assign it to someone else of his choosing, he was so surprised…and so relieved.
Mary Lou: Feeling devalued by your community, however you define that as an individual, is a barrier to asking questions or speaking up or being assertive about your rights. And that’s how ageism makes us feel – devalued, not good enough, less than. Pretty soon, older people get stuck in their own internalized ageism, a type of self-stereotyping that reduces our self-efficacy. This gentleman probably didn’t feel empowered enough to question what is a clear violation, felt powerless to make change for himself. We see this every day when we’re working with older people. And I even see it as an older person myself, when I feel like I can’t speak up about something.
Kathryn: There was an article in the New York Times recently about the work of Dr. Becca Levy, an epidemiologist who researches the psychosocial factors that influence older people’s cognitive and physical functioning and overall longevity. I believe that her research shows that people who have low levels of internalized ageism live, on average, seven years longer than their counterparts with high levels of internalized ageism.
Mary Lou: Yes, seven and a half years. And that figure was first documented almost twenty years ago, and we’re only now starting to talk about it outside the research community, which is incredible. If we were to replicate that study now, it might even be a bigger gap, because we know more about the health impacts of ageism thanks largely to Dr. Levy’s research. Maybe for some people, seven and a half years doesn't seem like very long, but for those of us who are older, for those of us who have health conditions or who are at the intersections of gender, race, and age…well, we know the impact of it, we feel those seven and a half years.
And this doesn’t only start to happen later in life. I cited some of Dr. Levy’s research in a presentation the other day: young people who have less positive outlooks on aging and older people have twice as higher risk of cardiovascular disease 40 years later. So it’s important for even younger folks to internalize a more positive and hopeful perspective on getting older.
Kathryn: I’ve been doing some work with intergenerational engagement as part of my community’s Age-Friendly initiative. There’s value on so many levels in bringing together generations to learn from one another and to change perceptions…
Mary Lou: There are definitely studies that confirm that intergenerational programming and education have an impact on how we see things. Lately, I’ve been somewhat obsessed with understanding what it takes to shift one’s belief system, so we can truly understand the impact of bias, prejudice, stereotyping, and discrimination. Transformational learning theory speaks of a process known as a disorienting dilemma, a situation in which your belief system is shaken up in a way that allows you to see things through a different lens. It seems to me that, no matter how much education we do or how we reframe aging, we won’t have an impact unless we can figure out how to weave in these disorienting elements.
Kathryn: Speaking of disorienting dilemmas, let’s talk for a moment about COVID.
Mary Lou: Obviously, the pandemic had such a profound effect on older people, not just those who died, but those who were isolated, those whose physical and mental health declined over the past two years. The silver lining is that COVID did shine a light on how poorly we were doing by older people. It’s really a disorienting dilemma…or in a policy context, a rupture. It’s tragic that it took something like this to prompt consideration of this population and its needs, and I hope that policymakers working in the aging space will leverage the opportunity to make change. We have a brand-new report from the National Academies on the national imperative to improve the quality of nursing home care, a report that stems from the experience of COVID in our residential care facilities. My hope is that this – and the emergence of a political champion – will help to fuel conversation and emphasize the need for funding in this area. Because if it doesn’t, policies will not change. At the grassroots level, of course, you and the other members of the EAIME team and my colleagues and I at the Center on Aging will keep going. But grassroots efforts can only take us so far…we really need that political champion to impact policy -- and we need good policy solutions. The National Academies are explicit in stating that they want to take advantage of this political moment, this societal moment, this public health moment to create change, since it’s entirely possible that soon we’ll forget that it ever happened…that more than a million people – nearly three-quarters of them older –
have perished from this disease.
Kathryn: This has been a fascinating conversation, Mary Lou. I’m grateful that you’ve been willing to share so openly, not only with me, but with EAIME supporters who will read this newsletter. I’ll leave us all with one last question: As you think about different strategies for combating ageism and improving the experiences of older people, where do you think the best starting places are?
Mary Lou: I’ve started to think about work in this domain as being divided into two aspects: the technical and the transformational. Some people start at the technical: how do we change our language, our imagery, our stories about aging? What are the aspects of our communications that we can manipulate to change attitudes? And then there are the folks who start in the tougher place of self-reflection, focusing on how to reorient a belief system from the inside out. We need to pay attention to both ways of addressing ageism, to learn about and do both. That’s the way we make progress.