Looking in the Rearview Mirror and to the Road Ahead on Dementia & Living Well


The number of Americans living with Alzheimer’s and all other dementias continues to increase. Most of them will need long-term and community-based services as the disease progresses. While medical research is making advances, there is more work to be done to ensure that every person receives care that is person-centered and allows them to live with dignity and respect.

Key Words:

Alzheimer’s, dementia, person-centered care, quality improvement, nursing homes, home- and community-based services

Today there are an estimated 6.5 million Americans ages 65 and older living with Alzheimer’s dementia, a number that is projected to increase to 12.7 million by 2050 (Alzheimer’s Association, 2022a). And we know that most of them will need long-term and community-based care as the disease progresses.

Today 48% of nursing home residents, 34% of assisted living residents, and 32% of individuals using home health services have Alzheimer’s or other dementias. According to one report, 75% of surviving Alzheimer’s disease patients diagnosed at age 70 will live in a nursing home by age 80, compared to only 4% of the general population surviving at age 80 (Alzheimer’s Association, 2022a). For persons living with dementia to truly live well throughout the course of the disease, long-term and community-based care settings must embrace person-centered care.

My first interaction/encounter with dementia occurred when I was around 10 years old, growing up in a small rural town in western Kentucky. I had started to notice changes in my grandfather and overheard conversations between my grandmother and my parents about their concerns. After consulting with our local physician, he was diagnosed with a condition called “hardening of the arteries.” Over the next couple of years, his memory, judgement, and demeanor began declining fairly quickly. I remember vividly the day my father had to have “the talk” with him about his ability to drive and I remember him taking his keys away. In the 1960s there were no resources or supports to help my family and others navigate these types of conversations or even to know what to expect as the disease progressed, and a lot of stigma remained.

From that experience forward, and in each subsequent decade of my life, dementia has affected those in my own family, my extended family, friends, and acquaintances.

After college, I enjoyed a successful career in business in an industry that was undergoing massive changes and consolidation. As I began exploring other possibilities, a friend who worked in long-term care asked me if I was looking to change careers. Long-term care was a field that I had never considered but those childhood experiences and wonderful memories of spending time with my grandparents made me think that it might be a good fit.

From that fortuitous meeting, I have had a rewarding career working in long-term and community-based care. As a licensed nursing home administrator, I was able to use my business background with my newfound skills in health services to be on the frontlines of caring for elders, including those living with dementia. Yearning to have a bigger impact in the field, eventually I transitioned to becoming an association executive at the state and national levels, which allowed me to dig deeper into practice, policy, and research.

Joining a New Culture-change Movement

Early on in my association career, I met Dr. Bill Thomas, a geriatrician from upstate New York, and founder of the Eden Alternative. He talked about revolutionizing how nursing homes support people with changing abilities, by focusing, instead of on the traditional task-driven system, on delivering care and services based on the person’s preferences, with the hope of eliminating loneliness, helplessness, and boredom (Baker, 2016).

As Bill has heard me relay many times, listening to him speak that day at Fort Sanders Medical Center in Knoxville, Tennessee, totally changed my perspective and instilled a passion to do my part to ensure that the care delivered in long-term care to those who most need our support is delivered in a person-directed system instead of one driven by staff efficiency.

‘I, along with many others, joined a new culture-change movement with a determination to place the person at the center of care.’

It was truly an aha moment. I, along with many others, joined a new culture-change movement with a determination to place the person at the center of care. New organizations were created, such as the Pioneer Network, which brings together professionals determined to change the culture of aging and The Green House Project, which promotes a small house nursing-home model based on the belief that everyone has the right to age without sacrificing the joys of life.

Over the following years my passion grew stronger to help advance culture change. In 2018, I was fortunate to play a leadership role in updating the Alzheimer’s Association Dementia Care Practice Recommendations (Fazio, Pace, Maslow, et al., 2018). These recommendations, intended for all professionals working in long-term and community-based care settings, were developed by some of the nation’s leading researchers and published in a special supplement of The Gerontologist.

Fifty-six recommendations covering 10 topic areas provide the foundation for how dementia care is delivered in long-term and community-based care settings. Grounded in person-centered care, the very first recommendation is “Know the Person” (Fazio, Pace, Flinner, & Kallmyer, 2018).

Knowing the person living with dementia is more than a diagnosis. It is important to know the unique and complete person. This information should inform every interaction and experience. Also, key is to see the world from the perspective of the person living with dementia. Doing so recognizes behavior as a form of communication, thereby promoting effective and empathetic communication that validates feelings and connects with the individual living with dementia. Every experience and interaction should be seen as an opportunity for engagement. Persons living with dementia should be a part of relationships that treat them with dignity and respect and where their individuality is always supported.

This type of caring relationship means being present and concentrating on the interaction, rather than on the task. It is about “doing with” rather than “doing for” as part of a supportive and mutually beneficial relationship (Fazio, Pace, Flinner, & Kallmyer, 2018).

Early Detection and Diagnosis Are Key

Early detection and a diagnosis of Alzheimer’s and other dementias is crucial. Research suggests that as many as half of people living with dementia have never been diagnosed. In addition, data shows that more than half of those diagnosed with dementia, or their caregivers, have not been told of their diagnosis. (Alzheimer’s Association, 2022a).

Dementia-related behaviors are among the most distressing sequelae of Alzheimer’s and related dementias. Up to 97% of persons living with dementia will experience at least one dementia-related behavior, the most common being apathy, depression, irritability, agitation, and anxiety (Scales et al., 2018). Unfortunately, there has been an overuse of antipsychotic medications to treat dementia-related behaviors. In 2011 the Centers for Medicare & Medicaid Services (CMS) launched the National Partnership to Improve Dementia Care in Nursing Homes. Since then, there has been a decrease of 39.1% among long-stay nursing home residents receiving an antipsychotic medication (Centers for Medicare & Medicaid Services [CMS], 2022a). Now we have a growing body of evidence that supports the use of non–pharmacological approaches as the first line of defense in reducing dementia-related behaviors. Sensory practices such as aromatherapy and massage therapy, and psychological practices including music and pet therapy should be used as the first course of action to reduce dementia-related behaviors (Scales, Zimmerman, & Miller, 2018).

‘It appears that nursing home reform may be finally getting some attention.’

In addition to the 10 topic areas outlined in the Dementia Care Practice Recommendations, there are two themes that cut across all of the recommendations—the importance of continuous quality improvement and advance care planning.

It is crucial to regularly evaluate practices and models, share findings, and make changes to interactions, programs, and practices as needed. The Affordable Care Act of 2010 requires nursing homes to have an acceptable QAPI (Quality Assurance Performance Improvement) plan to ensure a systematic, comprehensive, data-driven approach to care. (CMS, 2022b). Using a Plan-Do-Study-Act (PDSA) tool to plan and document their process, tests of change can be conducted through performance improvement projects (PIPs). This type of quality improvement process can and should be expanded to assisted living and other home- and community-based settings. Progress is being made as CMS in July 2022 released its first voluntary quality measures for home-and community-based services (HCBS) to promote consistent quality measurement across and within state Medicaid HCBS programs (CMS, 2022c).

Also, encouraging advance planning to optimize physical, psychosocial, and fiscal well-being and increasing awareness of all care options, including palliative and hospice care, is critical to living well with dementia during the latter stage of the disease. Early and ongoing discussions of what matters, including values, quality of life, and goals for care, are essential for person-centered care (Molony et al., 2018).

While progress to move toward a more person-centered care delivery system has been made, the recent COVID-19 pandemic was definitely a setback. More than 200,000 long-term care facility residents and staff have died due to COVID since the start of the pandemic. (Chidambaram, 2022). In addition, persons living with dementia showed significant decline due to the social isolation during the months when they were confined to their rooms and had no access to outside family or friends.

Now Is the Time for Action!

In the next two years, the number of people ages 65 and older will be equal to those younger than 18 in the United States (The Super Age, 2022). When the oldest baby boomers begin turning 80 in 2025, there will be a growing wave of people who need more support and services, and as previously noted, more and more of them will have Alzheimer's and other dementias. There are now 14 million people receiving some form of long-term care. That number will double by 2050, according to estimates from CMS. And about 70% of people older than age 65 will need some form of long-term care before they die, per an analysis by the Urban Institute (2021).

And it appears that nursing home reform may be finally getting some attention. The last major nursing home reforms were in the Omnibus Budget Reconciliation Act of 1987 (OBRA ’87) following the passage of the Medicaid and Medicare programs in the mid-1960s. OBRA ’87 included a uniform assessment process for all nursing homes to report in a consistent format, and it included basic resident rights such as the ability to welcome or refuse visitors, the freedom to make their own choices, the ability to refuse medications or treatments, and the right to be free from physical restraints.

During the State of the Union address on March 1, 2022, President Biden announced that reforming long-term care is a national priority. This is the first time in history that a U.S. President has explicitly stated a desire to “set higher standards for nursing homes” to “make sure your loved ones get the care they deserve and expect.” The reforms aim to ensure that, “every nursing home provides a sufficient number of staff who are adequately trained to provide high-quality care; poorly performing nursing homes are held accountable for improper and unsafe care and immediately improve their services or be cut off from taxpayer dollars; and the public has better information about nursing home conditions so that they can find the best available options” (The White House, 2022).

Additionally, in April 2022 the National Academies of Science, Engineering and Medicine (NASEM) issued a 578-page landmark report—The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families and Staff. The report lists seven goals and an interrelated set of recommendations provide an overarching framework for improving the quality of care in nursing homes.

The goals are:
  1. Deliver comprehensive, person-centered, equitable care that ensures residents’ health, quality of life, and safety; promotes autonomy; and manages risks.
  2. Ensure a well-prepared, empowered, and appropriately compensated workforce.
  3. Increase the transparency and accountability of finances, operations, and ownership.
  4. Create a more rational and robust financing system.
  5. Design a more effective and responsive system of quality assurance.
  6. Expand and enhance quality measurement and continuous quality improvement.
  7. Adopt health information technology in all nursing homes. (National Academies of Science, Education & Medicine, 2022)
The report reached the following overarching conclusions:
  1. The way in which the United States finances, delivers, and regulates care in nursing home settings is ineffective, inefficient, fragmented, and unsustainable.
  2. Immediate action to initiate fundamental change is necessary.
  3. Stakeholders need to make clear a shared commitment to the care of nursing home residents.
  4. Ensure that quality improvement initiatives are implemented using strategies that do not exacerbate disparities in resource allocation, quality of care, or resident outcomes. (National Academies of Science, Education & Medicine, 2022)

Since the release of the NASEM Report, the John A. Hartford Foundation has launched the Moving Forward Nursing Home Quality Coalition. The two-year initiative to improve nursing home quality will develop, test, and promote action plans around each of seven NASEM Report goals (Moving Forward Nursing Home Quality Coalition, 2022).

In addition, assisted living, home care, home health, adult day care and other home- and community-based services are all seeing an increase in the number of persons living with dementia as part of their total census. And while nursing home reform may be leading the way, each of these settings faces similar challenges in providing quality person-centered dementia care. It is important that these residential and community-based settings receive equal attention.

But there is some good news! We are living in historic times for Alzheimer’s disease treatment. The most exciting report of positive results in Alzheimer's disease clinical trials came out recently, giving those facing Alzheimer's incredible hope for more effective treatments. For people in the earliest stages of Alzheimer’s, it is encouraging that we may soon have another FDA-approved drug that may change the course of Alzheimer’s disease. These treatments can give people more time at or near their full abilities to participate in daily life, remain independent, and make future healthcare decisions (Alzheimer’s Association, 2022b).

The road ahead for persons living with dementia will be filled with curves and bumps, but I am hopeful and confident that it is leading to a newly paved path with advances in diagnosis and treatments and a suite of services grounded in knowing the person, which will allow them to live their best lives.

Douglas D. Pace, NHA, is senior director, Long-Term & Community-Based Care, at the Alzheimer’s Association in Chicago, IL. He may be contacted at dpace@alz.org.

Photo credit: CREATISTA/Shutterstock


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Chidambaram, P. (2022). Over 200,00 residents and staff in long-term care facilities have died from COVID-19. Kaiser Family Foundation. www.kff.org/policy-watch/over-200000-residents-and-staff-in-long-term-care-facilities-have-died-from-covid-19/Co

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