Break the cycle of desperation for people with dementia

This is an excerpt from the new book "Living better with dementia: consequences for individuals, families, communities and societies" published in June by Elsevier. November is the national month of Alzheimer's disease. Alzheimer's Association provides information and research to people living with the disease and their caregivers.

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

The first trials of solanezumab, one of Ali Lilly's most promising drugs, for example, have shown a slowdown in the progression of the disease in some people with mild cognitive impairment. However, in the last phase III trial, patients receiving the drug did not perform better than those in the placebo group, leaving the field with little hope for immediate disease-modifying treatment. Pfizer also recently announced the discontinuation of its drug discovery program for dementia.

In addition to medications, there are other treatments of interest that can alter the path of the disease, reduce excessive disability or reduce morbidity and burden of disease. But to date, special attention to research to find a cure has dominated the political discourse and the allocation of resources. This creates a "cycle of desperation," perpetuating barriers to development and access to effective care and services. To move forward, we must build a new paradigm, which involves visualizing, understanding and acting on the biological, social, psychological and environmental context in which dementia occurs and manifests itself.

Three buckets of research
Current research on dementia is divided into three broad areas – prevention, treatment, care and services – as areas identified in most national dementia plans as important for knowledge development and action.

Prevention is a relatively new avenue of research in response to consistent findings that the pathophysiology of dementia often begins many years before its clinical manifestations. However, identifying strategies to prevent cognitive impairment is a challenge given the complexity of lifestyle changes identified as potentially reducing the risk of dementia. There is also a need to evaluate prevention at the population level over a long period.

Nevertheless, a growing body of research has begun to progress, highlighting four areas of activity: regular physical activity, diet, social engagement and cognitive stimulation, and treatment of cardiovascular disease.

The specifications for each of these preventive actions are still lacking. For example, it is unclear to what extent and what type of exercise is most beneficial, to what extent to adopt healthy lifestyle habits to adopt a healthy lifestyle in order to maximize the benefits, and if it is necessary to simultaneously pursue all areas to significantly reduce risks. However, at present, these strategies remain the most promising.

Other candidates for reducing the risk of dementia include bilingualism, higher education and early treatment of depression. These areas, which also require more investment in research, have important implications for social and health policies (eg ensuring 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 conducted among people aged 65 and over compared to the prevalence of dementia among participants in 2000 and 2012. Over this 12-year period, dementia went from 11.6% in 2000 Researchers attributed some of this decline to an increase in the level of education and a better control of cardiovascular risk factors such as diabetes, although other factors also contributed to this decline. Similar trends have been reported in Western Europe and Scandinavia. If confirmed, these results could have dramatic consequences for the health of the population and national education policies.

Unlike prevention, the search for a "cure" for dementia dominated research budgets, particularly in the United States. To date, drug trials have not resulted in promising treatments. Nothing on the horizon is intended to reverse the causes of brain damage caused by dementia. As a result, we have begun to slow down the progression of the disease, particularly in people with early or mild dementia, through therapies such as immunotherapies, which could reduce morbidity and possibly reduce caregiver burden or time. necessary to care. This change reflects the awareness that a single methodology, treatment or strategy will not work for all people with dementia.

This is one of the reasons why research on care and services is slowly gaining ground. Even with pharmacological treatments that can slow the progression of the disease – which does not exist at present – people with dementia and their caregivers still need care and support services. In fact, this need will only grow as diagnoses come earlier in life and earlier in the progression of the disease. To that end, we must refocus and deploy our energies to provide appropriate care and services. A crucial empirical question is whether the provision of evidence-based care and services can change the course of the disease or slow it down. There is some evidence, for example, that effective management of behavior and psychological factors can reduce rates of decline. It is an area of ​​critical investigation, even with the future discovery of a revolutionary drug.

Paradigm of despair
The singular but understandable consequence of finding a cure was to create a cycle of despair. Messaging largely declared that there was no cure, so nothing could be done. Because nothing can be done, families receive little or no advice, education or support, leading to despair and a poor quality of life.

This state of mind underlies and perpetuates various factors that hinder access to adequate care and support. We identified six key barriers to effective treatment planning and interventions, including payment structures that reward curative therapies rather than disease management and coordination approaches, inadequately prepared staff in dementia care, Structural and perceptual stigma and lack of access to diagnoses and disrupted care specialists for planning and treatment services.

These barriers prevent people with dementia and their families from even getting basic information, knowledge, skills and resources to help them better manage the progression of the disease and its complexities at home. Families often do not even receive simple references to local, national or global resources, such as the Alzheimer's Association, and are rarely encouraged to use local services such as adult care or specialized care lawyers. the elderly.

People with dementia and their caregivers are usually left alone, sent home with the words "There is nothing that can be done" from health professionals. With little or no knowledge about illness, potential resources, and effective care strategies, families often feel lost.

There is no doubt that evidence of the provision of effective care is extremely deficient. For example, we have no proven protocol for reducing the risk of falling, improving mobility or managing comorbidities and sensory impairments. However, there are approaches that we can use now and from which we can build comprehensive dementia care that improves the quality of life of individuals and their caregivers.

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 home in an urban area. Once the diagnosis was made, Ms. Smith's physician prescribed the drug Aricept (used to treat confusion) but said nothing else could be done. The drug had side effects for Mrs. Smith and seemed ineffective. She quickly stopped taking it. Mr. Smith only learned of the existence of the Alzheimer's Association by chance from a neighbor. Although he had collected useful information on the website, he did not want to participate in a support group.

After about a year, Mrs. Smith was no longer home alone, so Mr. Smith stopped working to look after his wife on a full-time basis. He began to feel isolated, overwhelmed and depressed. He could not afford home care and had difficulty managing Ms. Smith's physical addictions and behavioral symptoms. His two adult children had a full-time job and their own family and did not live nearby. Mr. Smith was also concerned about his wife's quality of life and was desperate for their finances and their future. In turn, he had diabetes and high blood pressure and did not have time to go to his doctor.

At this moment, Mr. and Mrs. Smith are alone. However, we can design a dementia treatment model to meet their needs. What should it look like and what can we do for this family now?

Although the progression of the disease and the lived experience with dementia, as well as the family dynamics, are highly individualized, this case represents a common experience. Families face similar challenges in understanding dementia and identifying and responding to a wide range of needs. The case also illustrates the need to move quickly in research on care and services.

Then how can we support Mr. and Mrs. Smith? What principles should underlie care and services and what are the specific treatment goals that can be achieved?

Given the complexity of dementia and its impact on all aspects of daily life, we must carefully develop an approach. To begin reinventing the care of dementia, we have identified eight hypotheses that must ground any new system, based on what we know about dementia and contrast current approaches, badumptions, and actions:

1. There is no quick fix, no one-off intervention.
2. Treatment, care strategy or clinical intervention will not meet all unmet needs.
3. Given the multiple needs in care and support services, it is imperative to coordinate care and integrate social and medical approaches.
4. Effective strategies must stem from a systematic process involving an badessment, creating a treatment plan, implementing appropriate care and badessing what works, followed by an badessment. continuous modification opportunities.
5. A strategy or approach that works for one individual or family may not work for another, even with the same treatment objective and at the same stage of the disease.
6. All health professionals have a role to play in the treatment of dementia.
7. Careful coordination between clinical encounters, care settings and professionals is essential.
8. All aspects should relate to the person with dementia and their caregivers.

Since funding for dementia is limited, we need to balance prevention, curative and care efforts. There is not, and there will never be, a solution, treatment, approach or strategy that works for all families living with dementia. It's a dynamic condition that challenges simple solutions or traditional medical care models.

What can we do now? Seek opportunities to learn about the experience of dementia from the perspective of the individuals themselves. Develop a treatment plan based on individual preferences, etiologies, stage of illness and life circumstances. Link people to community resources and keep them engaged in the activities they care about and rebadess the needs, preferences, abilities, etiologies and contexts of the disease.

Nancy Hodgson holds the Anthony Buividas Chair in Gerontology and Associate Professor of Nursing at School of Nursing.

Laura N. Gitlin is Professor Emeritus and Dean of the Faculty of Nursing and Health Professions at Drexel University.

The text above is from "Living better with dementia: consequences for individuals, families, communities and societies"Published in June 2018 by Elsevier. No part of the material may be reused without the permission of the publisher. © Nancy Hodgson and Laura Gitlin. Reprinted with permission of Elsevier. A book launch will take place on Sunday, November 28, 2018 from 17h to 19h. Mitchell Auditorium, Bossone Research Center, University of Drexel.