Breaking the cycle of despair for people with dementia

A new book from Penn Nursing’s Nancy Hodgson and Drexel’s Laura Gitlin dissects the challenge of living with the disease for individuals who have it, and for their caregivers.

old photo album in the lap of an elderly person

This is an excerpt from the new book Better Living with Dementia: Implications for Individuals, Families, Communities, and Societies published in June by Elsevier. November is National Alzheimer’s Month. The Alzheimer’s Association offers information and research for those living with the disease and for their caregivers. 

In the past 20 years, we’ve made tremendous progress in understanding the underlying pathophysiology of dementia. Nevertheless, we have a long way to go before we fully comprehend this complex condition, and understand how to prevent, cure, and manage it. 

Early trials of solanezumab, one of Eli Lilly’s most promising Alzheimer’s drugs, for example, showed a slowing disease progression for some people living with mild cognitive impairment. However, in the most recent Phase III trial, those receiving the drug fared no better than those in the placebo group, leaving the field without much hope for an immediate disease-modifying treatment. Pfizer also recently announced termination of its dementia drug-discovery program. 

Rainbow colored clouds

Beyond drugs, there are other treatments worth serious consideration that may modify disease trajectory, reduce excess disabilities, or compress morbidity and disease burdens. But to date, a singular focus on research to find a cure has dominated policy discourse and resource allocation. This creates a “cycle of despair,” perpetuating barriers to developing and accessing effective care and services. To move forward, we must construct a new paradigm, one that involves viewing, understanding, and acting on the biological, social, psychological, and environmental context in which dementia occurs and transpires. 

Three research buckets 
Current research on dementia falls into three broad buckets—prevention, cure, and care and services—areas identified in most national plans on dementia as important for knowledge development and action. 

Prevention is a relatively new research pathway in response to consistent findings that dementia’s pathophysiology often begins many years prior to its clinical manifestations. Identifying strategies to prevent cognitive impairment is challenging, though, given how complex it can be to make the lifestyle changes identified as those that might lower dementia risk. There’s also the need to evaluate prevention at the population level over a long timeframe. 

Nevertheless, there’s been some initial headway alongside a growing corpus of research signaling four focus areas: regular physical activity, diet, social engagement and cognitive stimulation, and treatment of cardiovascular disease. 

Specifications for each of these preventive actions are still lacking. It’s unclear, for example, how much and what type of exercise is most beneficial, how early in life you must adopt healthy lifestyle choices to maximize benefit, and whether someone must pursue all areas simultaneously to significantly reduce risk. However, right now, these strategies remain the most promising.

Other candidates for lowering dementia risk include bilingualism, higher education, and addressing depression early on. These areas, which also warrant more research investment, have significant implications for health and social policies (e.g., assuring quality education and access to language learning). 

For example, a recent study in the United States using data from the nationally representative Health and Retirement Survey of individuals 65 years or older compared dementia prevalence among participants in 2000 and 2012. In that 12-year period, dementia declined from 11.6 percent in 2000 to 8.8 percent in 2012. The researchers attributed some of the drop to an increase in educational attainment and better control of cardiovascular risk factors like diabetes, although other factors may also have contributed. Similar trends have been reported in Western Europe and Scandinavia. If confirmed, these results could have dramatic implications for population health and national educational policies. 

Unlike prevention, finding a dementia “cure” has dominated research dollars, particularly in the United States. To date, drug trials have failed to result in promising treatments, with nothing on the horizon aimed at reversing the brain damage dementia causes. Consequently, attention has begun to shift to slowing disease progression—particularly in individuals with early or mild dementia—through therapies such as immunotherapies, which could compress morbidity and possibly reduce caregiver burden or time needed for care. This shift reflects the realization that a single methodology, treatment, or strategy won’t work for everyone with dementia. 

Head shot of Nancy Hodgson wearing a teal blazer with a black shirt
Nancy Hodgson is the Anthony Buividas Term Chair in Gerontology, and an associate professor of nursing.

That’s part of the reason research on care and services is slowly gaining momentum. Even with pharmacological treatments that can slow disease progression—which don’t currently exist—people living with dementia and their caregivers still require care and supportive services. In fact, this need will only increase as diagnoses come earlier in life and earlier in the disease’s progression. To that end, we must refocus and extend our energies to assuring appropriate care and services. A critical empirical question is whether providing evidence-informed care and services can modify disease course or slow it down. There is some evidence, for example, that effectively managing behavior and psychological factors can reduce decline rates. This is a critical area for investigation, even alongside the future discovery of a miracle breakthrough drug. 

Paradigm of despair
An unfortunate consequence of the singular but understandable focus on uncovering a cure has been to create a cycle of despair. Messaging has largely stated that there is no cure, therefore nothing can be done. Because nothing can be done, families receive little to no guidance, education, or support, which leads to hopelessness and poor quality of life. 

This mindset underlies and perpetuates various factors that inhibit access to adequate care and support. We have identified six key barriers to treatment planning and effective interventions, including payment structures that reward curative therapies rather than disease management and coordination approaches, an inadequately prepared workforce in dementia care, structural and perceptual stigma, and lack of access to diagnosticians and dementia-care specialists for treatment planning and services. 

Such barriers conspire to make it almost impossible for people living with dementia and their families to obtain even basic information, knowledge, skills, and resources to help them better manage disease progression and its complexities at home. Families often don’t receive even simple referrals to existing local, national, or global resources such as the Alzheimer’s Association, and rarely get encouragement to use local services such as adult day care or lawyers specializing in elder care. 

Individuals with dementia and their caregivers are basically left on their own, sent home with the parting words “there is nothing that can be done,” from health professionals. With little to no knowledge about the disease and potential resources and effective care strategies, families often feel lost. 

There is no question there are huge gaps in the evidence for providing effective care. For example, we have no proven protocols for reducing fall risk, enhancing mobility, or managing co-morbidities and sensory impairments. However, there are approaches we can use now and from which we can build comprehensive dementia care that improve quality of life for individuals and their caregivers. 

To move forward, we must construct a new paradigm, one that involves viewing, understanding, and acting on the biological, social, psychological, and environmental context in which dementia occurs and transpires.

Take the case of Mr. and Mrs. Smith. 

Mr. Smith, an 82-year-old African American cares for his wife, who was diagnosed with dementia four years ago, at their home in an urban area. Upon diagnosis, Mrs. Smith’s doctor prescribed the drug Aricept (used to treat confusion) but indicated that nothing else could be done. The medication caused side effects for Mrs. Smith and seemed ineffective, so she soon stopped taking it. Mr. Smith only learned of the Alzheimer’s Association by chance, from a neighbor, and though he gleaned some helpful information from the website, he was not interested in attending a support group. 

After about a year, Mrs. Smith was no longer safe at home alone, so Mr. Smith stopped working to care for his wife full time. He began to feel isolated, overwhelmed, and depressed. He couldn’t afford at-home assistance and was experiencing difficulty managing Mrs. Smith’s increasing physical dependencies and behavioral symptoms. His two grown children had full-time jobs and their own families and did not live nearby. Mr. Smith was also worried about his wife’s quality of life and felt despair over their finances and future. He, in turn, was aging with diabetes and high blood pressure and had no time for his own doctor’s appointments. 

Right now, Mr. and Mrs. Smith are on their own. However, we can design a model of dementia care to address their needs. What should that look like and what can we do for this family now? 

Although disease progression and the experience living with dementia, as well as family dynamics, are highly individualized, this case represents a common experience. Families confront similar challenges in understanding dementia and identifying and addressing a wide range of needs. The case also illustrates the necessity of rapidly advancing research on care and services. 

So how can we support Mr. and Mrs. Smith? What principles should underlie care and services and what are specific and obtainable treatment goals?

Given the complexities of dementia and its impact on all aspects of daily life, we must carefully craft an approach. To begin to reimagine dementia care, we’ve identified eight assumptions that must ground any new system, assumptions based on what we know about dementia and contrast present-day approaches, assumptions, and actions: 

  1. There’s no magic bullet, no single point-in-time intervention. 
  2. One treatment, care strategy, or clinical intervention will not address all unmet needs. 
  3. Given the multiple care and supportive service needs, it’s imperative to coordinate care and integrate social and medical approaches. 
  4. Effective strategies should arise through a systematic process that involves assessment, generating a treatment plan, implementing tailored care, and evaluating what works, followed by continuous opportunities for modification. 
  5. A strategy or approach that works for one individual or family may not work for another, even one with the same treatment goals and at the same disease stage. 
  6. All health care professionals have a role in dementia care. 
  7. Careful coordination across clinical encounters, care settings, and professionals is critical. 
  8. All aspects should involve the individual with dementia and that person’s caregivers. 

Funding for dementia is limited, so we must balance efforts focused on prevention, cure, and care. There is not now, nor will there ever be, one solution, treatment, approach, or strategy that works for all families living with dementia. It is a dynamic condition that defies simple solutions or traditional medical models of care. 

What can we do now? Seek opportunities to learn about the experience of having dementia from the perspective of individuals themselves. Derive a treatment plan responsive to individual preferences, etiologies, disease stage, and living contexts. Link individuals with community resources and keep them engaged in activities they value. And reassess the needs, preferences, capabilities, etiologies, and contexts of the disease.

Nancy Hodgson is the Anthony Buividas Term Chair in Gerontology and an associate professor of nursing in the School of Nursing

Laura N. Gitlin is a Distinguished University Professor and dean of the College of Nursing and Health Professions at Drexel University. 

The text above is excerpted from “Better Living with Dementia: Implications for Individuals, Families, Communities, and Societies” published in June 2018 by Elsevier. No part of the material may be reused without permission from the publisher. ©Nancy Hodgson and Laura Gitlin. Reprinted with permission from Elsevier. A book launch will take place on Wednesday, Nov. 28, 2018 from 5 to 8 p.m. at Mitchell Auditorium, Bossone Research Enterprise Center, Drexel University.