How to Advocate to Overcome Ageism in Long-Term Elder Care
“Denial goes hand in glove with the rampant ageism in our society and our culture.” ~ Irving Stackpole, Stackpole & Associates
I recently returned to Austin, TX, from my quarterly 2-week visit to my mom, who resides in a nursing home in Connecticut. The facility in which she lives is far better than many I’ve worked in as a psychologist in the NYC metro area, Austin, TX, and the Rio Grande Valley of Texas. And, yet, there are still many challenges for which I’ve had to spend hours on the phone from across the miles, to deal with.
There have been problems with her care, especially by substitute staff who don’t know her and are called in so often because of the ongoing staffing shortage. Issues in obtaining the physical, occupational, and speech therapy she requires to have the quality of life we’d all like to enjoy in our “golden years” have also occurred. Being there, in person, I was able iron out some of the issues that remained.
I worked as a psychologist with elderly clients residing in long-term care facilities, including nursing homes, assisted living facilities, “independent living communities,” and personal care homes from the time I received my doctorate in 1992 until about 2012. During my graduate school education in the mid- and late-1980s, I first felt called to work with the elderly population. At that time, I discovered the ageism that existed with regard to care for the elderly. More than one of my clinical supervisors questioned my choice, questioning my plan to “waste” my time and talent working with such a “depressing and hopeless population.”
Except that, I never found older adults to be a depressing group of people. It was their treatment, or lack thereof, and the conditions of some places where they resided that were depressing.
Recently, when the geriatrician and advocate for older adults, Dr. Michael Wasserman, spoke to me on my internet radio program, he reported the same response from his professors in medical school when he chose to study geriatric medicine — that it was a “waste of time.”
I expected that my professional experience would prepare me for having my own parents in long-term care. But, I can tell you that, while my professional life gave me the advantage of understanding my mom’s needs and knowing the system that she was residing within, being a family member is a completely different experience. And I’ve discovered that the ageism I witnessed when entering the field in the 1980s still exists today in 2023.
When Irving Stackpole joined me for an interview on my program to discuss some of the systemic issues in long-term care, he pointed out that our treatment of the elderly in the United States “stands in stark contrast to other places where persons of age are actually respected, even revered, and, certainly, far-better cared for.”
While going through some old paperwork, I came across a term paper that I wrote in 1987 for a graduate school course on aging. I was shocked to read what I had written and how it so closely matches some very recent experiences with helping my mom through some healthcare emergencies, as well as getting her the therapies she now benefits from. “The stereotype of poor prognosis for the older person may lead to treatment bias in regard to older patients,” I wrote all those decades ago.
In a study I cited in my paper by Rodney M. Coe, Ph.D., the attitudes regarding older patients held by health professionals, including physicians, dentists, physical therapists, nurses, and social workers, were investigated. Coe found that all of the health professionals who participated in the study viewed aging as a deteriorative process, whether physical, mental, or social. In addition, older persons were viewed as rigid, inadaptable, and slow to respond to treatment. Furthermore, because of the poor prognosis believed to be true of treatment with the older patient, professionals agreed upon therapy as largely custodially-oriented. This study was published in the professional journal, The Gerontologist, in 1967. That was almost 60 years ago and the attitudes are not very different today.
Dr. Robert N. Butler first published his article, “Age-Ism: Another Form of Bigotry,” in the journal, The Gerontologist, in December 1969. Dr. Butler was the one to coin the term, “ageism,” to describe the systemic discrimination against older people. It’s now over a half-century later and ageism remains, continuing to hamper the abilities of older adults to live to their fullest potential and highest quality of life, while diminishing their value and their worthiness to receive our best care and treatment.
In fact, recent research published in the Journal of the American Geriatrics Society in October 2022, found that ageism is still “pervasive” and “insidious” in our healthcare system, “as well as society at large.” The authors found that ageism in healthcare became much more overt during the Covid-19 pandemic, “exemplified by pronouncements that older adults were universally frail, that their contributions to society were minimal, and that they did not deserve to be prioritized for COVID-19-related resources. Some pronounced that older adults should be prepared to step aside (e.g., relinquish limited healthcare resources to younger adults, or even die).” The study authors also went on to discuss findings that the negative health outcomes can be magnified when racism and ageism intersect. For example, a study published in the Centers for Disease Control Weekly Report in March 2021, by Florence Lee and her colleagues, found that older African-American adults suffered disproportionally higher rates of Covid during the pandemic, as well as higher rates of death as a result of contracting Covid.
Unfortunately, ageism is the one “ism” that we don’t frequently speak about. Yet, as the research above has found, it continues to run rampant in Western culture, directly affecting the health care of our elders, as well as in the long-term care of these most vulnerable of our population. As Stackpole pointed out in our discussion, we are in complete denial about the existence of ageism. Without facing it head-on, ageism will continue to hurt our elders in very real ways. And ageism starts from the top, legislatively with the policies, on down to the hands-on care, greatly affecting the quality of life of our elders, a population that we will all be part of, if we’re fortunate to live long enough.
Even a typically progressive state and one that ranks 4th highest nationally for people in the 85-and-older age group, Connecticut has hit a political wall in proposals to raise mandated hours for resident care, to provide air conditioning in every resident room, and to boost the number of positions in the long-term care ombudsman’s office. Financial commitments required and “a lack of political will,” are cited according to the CT Mirror.
Ways that Ageism Affects the Care of Older Adults in Long-Term Care
1. Ageism causes medical and care providers to give up on treatment for the elderly much more quickly. I wrote about my experience with my mom when she was in the hospital for a month in 2021 in my blog, Holding Onto Hope — in Spite of The Doctor Who Gave Up: The Sad Truth About Health Care and the Elderly.
“The attending physician gave up hope after a short period of time and actually stated his intention to take away my family’s hope of my mom’s recovery. When we sounded like we might be faltering in our hope, he stated, ‘I’m so glad. I’ve done my job to convince you not to have false hope.’ This was in spite of clear evidence that all potential for recovery was not, in fact, gone, even if not guaranteed. By his own admission, the attending physician said that it could ‘go either way.’ Unfortunately, he also set the tone for other medical practitioners at the hospital involved in her care. This added a significant obstacle to her recovery.”
I have no doubt that the desire of the physician involved in my mom’s care to take away our hope and refusal to treat more aggressively, in spite of my mom’s desire to try it, had to do with her advanced age. Luckily, in that situation, my brother and I were able to enlist the aid of her long-time cardiologist to take over her care and to try an increase of the treating medication. Within a week, my mom was out of the hospital and she is now enjoying her life.
2. Ageism leads to the perception of treatment, therapy, and/or mental health treatment of the elderly as “a waste of time and money.” This is seen in long-term care and in healthcare, in general, with the elderly. Patients and long-term care residents are denied treatments that can help to significantly improve their quality of life. While it’s important to have realistic expectations about functioning, ageism causes the tendency for lower expectations regarding the abilities of an elderly patient or long-term care resident. Often this results in the person’s lessened ability level. This was recently an issue for my mom, with regard to physical therapy, which my family had to assertively advocate for my mom to receive. The outcome has been a higher level of functioning for my mom and an overall better quality of life.
3. Ageism often causes providers, caregivers, and family members to assume that a mild memory impairment means dementia. Psychologist and geriatric specialist, Jeanne Devine, PhD., pointed out to me that there are many other potentially reversible conditions that could be causing the memory issues, including depression, poor sleep, and health issues, but that the first assumption of dementia is the one that often sticks. Instead, the onset of a significant memory impairment should trigger a thorough evaluation for the cause, without making assumptions based on the individual’s advanced age. Depression in an older adult can show up as a “pseudo-dementia” that counseling and/or medication could, potentially, resolve. If an older person is not obtaining restful sleep, this, too, can appear as a cognitive impairment, such as a memory impairment. And there are many treatable medical issues that can show up as cognitive symptoms, as well.
4. Ageism often causes providers, caregivers, and family members to assume that a communication impairment means that the person has dementia, causing lack of attempting to understand what the person is trying to communicate. This is often a frustration for my mom because her speech is impaired by a mild stroke she suffered several years ago, while she remains cognitively sharp. Often, providers and caregivers who don’t know her will ignore her attempts to communicate her needs, assuming that she has dementia. I will add that this is not an appropriate response by a provider or caregiver, even if the resident actually does have dementia, but, nevertheless, it is a common response.
5. Ageism leads to the expectation that the resident “go along with” what’s most efficient for the insitution rather than providing person-centered care. Expressions of individuality can often be seen as a problem if they interfere with a smooth routine by staff. And this can be detrimental to the resident and their ability to continue to live their highest quality of life and remain true to who they are. For example, my mom enjoys meeting on the main floor with friends who live on other floors or sitting in her room, where she can watch a movie she prefers on her television or talk on the phone, while staff will sometimes prefer that she sit in the common room with others on her floor. This was an issue in which our family had to intervene about, as simple as it might seem.
6. Ageism leads to low pay for workers, as the jobs that they do are not considered to be important for society, meriting compensation for what might be considered an essential occupation. This has led to severe staffing shortages, which is currently a national crisis, and lower investment in providing high quality of care by some of the caregivers who are just rotating through as substitute staff.
7. Ageism leads to lack of money put into elderly care by lawmakers. In the example, I gave above, proposals to improve quality of long-term care were recently decided against in Connecticut in order to save money. And CT happens to be one of the better states in this regard.
What Families Can Do to Improve Quality of Care in an Ageist System
1. Join or establish a Family Council. This is a powerful avenue in order to have a unified voice with other resident family members, addressing problems and coming up with ways to improve our loved ones’ quality of life. The Family Council can also coordinate with the Residents’ council, thus giving residents more of a voice in improving their own quality of life. As I’ve written about in my last blog, Advocating in the Nursing Home: Starting a Family Council Part I, I recently organized a virtual family council. The response from resident family members has been even better than expected, and I’m excited that we’ll be able to make a difference in improving the quality of life for our loved ones. And we are now coordinating with the Residents’ Council to help them to have a more powerful voice in having their concerns addressed, as well.
2. Get to know your regional ombudsman. Mark Miller, President of the National Association of State Ombudsman Programs, recommends developing a working relationship with your local ombudsman. The ombudsman can give guidance about how to deal with issues of care in a long-term care facility, even if it doesn’t rise to the level of having the ombudsman step in. But, as Miller states, the ombudsman can be a great liaison, when they do step in, to address the issues with the nursing home. As he pointed out in our interview, most facilities are open to working out issues with the ombudsman because the ombudsman can “identify issues before they become large, systemic problems…Because if we identify these issues and they address them, there will be much less of a chance that, when the Health Department, who are the regulators, come in, that they’re going to find that issue and then cite the facility or fine them.”
3. Stay involved in your loved one’s care and assertively advocate for them. Find your allies in the facility who have power to make effective changes. Be firm, while polite, when pointing out problems in your loved one’s care. Again, speak to the ombudsman to receive guidance in addressing the problem and to find out if this issue might require their help.
We do have power as family members, and there are things we can do, even though we can often feel helpless. It took some time for me to find my allies within my mom’s residence, but, after several wrong turns, I have found the staff members whom I can reach out to when there’s a problem, and I know they will effectively address the issues. This is a great relief to me and my family, as well as to my mom. She knows now that if she tells me about something that went wrong, I will call someone who can do something about it and prevent it from happening again.
4. Speak to the care staff about who our loved one really is underneath the gray hair and wrinkles. Dr. Devine suggests that we talk about our loved-one’s lived history and hang up a photo of them from when they were younger on the wall or outside their door. This gives those who care for them as a full person, with a long and interesting life, rather than as a snapshot of an elderly fragile person, and this can make a big difference in breaking through any unconscious ageist biases they might hold.
5. Be mindful of your own ageist biases. These biases are pervasive in our society and we often don’t even realize that we carry these beliefs within ourselves. If they go unnoticed, we are less able to effectively advocate for our loved ones. For example, if we go along with the belief “that’s just how it is when you get old” or “she/he is just senile,” we will be less likely to advocate for further investigate into the causes for our loved one’s changes in behaviors or cognitive abilities. Or we will be more likely to allow the facility to automatically do what is most efficient for the staff, but not necessarily the best for our loved one’s quality of life.
6. Get involved in politics! Vote for candidates who stand with elderly issues. Push candidates and elected representatives toward taking more action to support issues that improve the quality of life for older adults. Write letters, sign petitions, etc. Alice Bonner, Chair of Moving Forward: Nursing Home Quality Coalition, discussed with me the benefits of joining a group, such as Moving Forward, to influence legislation affecting the quality of nursing home care.
And, as Alice Bonner tells us, “We can do this. We can eliminate ageism….And we can do a much better job in long-term care settings.” Let’s do it!
You can read similar blogs by Dr. Mara and listen to her internet radio show. Now also on Apple Podcasts. Check out Dr. Mara’s internationally best-selling book, The Passionate Life: Creating Vitality & Joy at Any Age, now available on Audible! And be sure to follow her on Facebook!
