This is an excerpt from the new book "Better life with dementia: impact on individuals, families, communities and societies" published by Elsevier in June. November is the national Alzheimer's month. The Alzheimer's Association provides information and research to people who have the disease and their loved ones.
Over the last 20 years, we have made tremendous progress in understanding the underlying pathophysiology of dementia. Nevertheless, we still have a long way to go to fully understand this complex state and how to prevent, cure and manage it.
For example, initial studies with solanezumab, one of Eli Lilly's most promising Alzheimer's drugs, showed slower disease progression in some people with mild cognitive impairment. In the final Phase III study, patients receiving the drug were no better off than those in the placebo group and the field remained without much hope for immediate disease-modifying treatment. Pfizer also recently announced the termination of its dementia drug discovery program.
In addition to the medications, there are other treatments that are worth considering seriously, altering the trajectory of the disease, reducing excessive disability, or reducing morbidity and disease burden. To date, a unique focus on healing research has dominated political discourse and resource allocation. This leads to a "cycle of despair" that maintains the barriers to development and access to effective care and services. To move forward, we need to build a new paradigm, one that looks at the biological, social, psychological, and environmental context in which dementia occurs and occurs.
Three research buckets
The current research on dementia covers three broad areas – prevention, cure, care and services – areas identified as important for knowledge development and action in most national dementia plans.
Prevention is a relatively new research path based on consistent evidence that the pathophysiology of dementia often begins many years before its clinical manifestations. However, recognizing strategies to prevent cognitive impairment is challenging given how complex it can be to identify lifestyle changes as those that can reduce the risk of dementia. It is also necessary to assess prevention at the population level over a long period of time.
Nonetheless, there is first progress alongside a growing body of research signaling four priority areas: regular physical activity, nutrition, social engagement and cognitive stimulation, and the treatment of cardiovascular disease.
For each of these preventive measures are still missing specifications. It is unclear, for example, how much and what type of exercise is most beneficial, how early you must choose to live a healthy lifestyle in order to maximize benefits, and whether someone needs to pursue all areas at the same time to significantly reduce the risk. For the moment, however, these strategies are the most promising.
Other candidates for the reduction of dementia risk include bilingualism, higher education and the early fight against depression. These areas, which also require more research investment, have a significant impact on health and social policies (eg ensuring quality education and access to language learning).
A study recently conducted in the United States using data from the nationally representative health and pension survey of people aged 65 years or older compared the prevalence of dementia between participants in the years 2000 and 2012. During this period of 12 Dementia declined by 11.6 percent in 2000. Researchers attributed a portion of the decline to an increase in education levels and better control of cardiovascular risk factors such as diabetes, although other factors could have contributed. Similar trends were reported in Western Europe and Scandinavia. If confirmed, these outcomes could have a dramatic impact on public health and national education policies.
In contrast to prevention, the search for "dementia" predominated, especially in the USA. To date, drug trials have failed to deliver promising therapies, and there is nothing on the horizon to reverse the causes of dementia brain damage. As a result, especially in those with early or mild dementia, attention has slowed down by therapies such as immunotherapies to slow the progression of the disease. This can reduce morbidity and possibly reduce the burden on the caregiver or the need for care. This shift reflects the realization that a single methodology, treatment, or strategy is not appropriate for anyone with dementia.
This is one of the reasons why research on care and services is slowly gaining in importance. Even with pharmacological treatments that can slow the progression of the disease – which is currently not the case – dementia patients and their caregivers continue to need care and support services. In fact, this need will only increase as the diagnoses are made earlier in life and earlier in the disease process. To this end, we need to redirect and expand our forces to ensure proper care and services. A critical empirical question is whether providing evidence-based care and nursing services can alter or slow down the disease process. For example, there are indications that effective management of behavior and psychological factors can reduce the rate of decline. This is a critical area of investigation, including the future discovery of a miracle breakthrough.
Paradigm of desperation
An unfortunate consequence of the unique but understandable focus on revealing a cure was the creation of a cycle of despair. Messaging has largely stated that there is no cure, so nothing can be done. Since nothing can be done, families receive little to no guidance, training, or support, leading to hopelessness and poor quality of life.
This mindset is based on several factors that hinder access to adequate care and support. We identified six main barriers to treatment planning and effective interventions, including payment structures that reward curative therapies rather than approaches to disease management and coordination, insufficient prepared workforce for dementia, structural and perceptual stigma, and lack of access to diagnosticians and dementia. Nursing specialists for treatment planning and services.
Such barriers are conspiring to make it almost impossible for people with dementia and their families to obtain even basic information, knowledge, skills, and resources that will help them better manage the progression of the disease and its complexity at home. Families often do not even receive simple recommendations for existing local, national or global resources, such as the Alzheimer's Association, and are rarely encouraged to use local services such as day care for adults or lawyers for the elderly.
Dementia sufferers and their caregivers are basically on their own and are sent home with farewell words "home" that can not be done by healthcare professionals. With little to no knowledge about the disease and potential resources and effective care strategies, families often feel lost.
There is no doubt that there are major gaps in the evidence of effective care. For example, there are no established protocols for reducing fall risk, improving mobility or dealing with comorbidities and sensory impairments. However, there are approaches that we can now use and from which we can build comprehensive dementia care that improves the quality of life for individuals and their caregivers.
To move forward, we need to build a new paradigm, one that looks at the biological, social, psychological, and environmental context in which dementia occurs and occurs.
Take the case of Mr. and Mrs. Smith.
Mr. Smith, an 82-year-old African American, looks after his wife, who was diagnosed with dementia four years ago, in her apartment in an urban area. At the time of the diagnosis, Ms. Smith's doctor prescribed the drug Aricept (used to treat confusion), but said that nothing else could be done. The medication caused side effects for Mrs. Smith and seemed to be ineffective, soon stopping her. Mr. Smith learned of the Alzheimer's Association only by chance from a neighbor, and although he received some helpful information from the site, he was not interested in joining a support group.
After about a year, Mrs. Smith was no longer alone at home, so Mr. Smith stopped looking after his wife. He felt isolated, overwhelmed and depressed. He could not afford home support and had difficulty coping with Ms. Smith's increasing physical dependence and behavioral problems. His two adult children had full-time jobs and their own families and did not live nearby. Mr. Smith also worried about his wife's quality of life and was desperate with her finances and future. He, in turn, was aging with diabetes and high blood pressure and had no time for his doctor's appointments.
At the moment Mr. and Mrs. Smith are alone. However, we can develop a model of dementia that meets their needs. What should that look like and what can we do for this family now?
Although disease progression and experience with dementia and family dynamics are very individualized, this case is a shared experience. Families face similar challenges when it comes to understanding dementia and identifying and addressing a wide range of needs. The case also highlights the need for rapid research into care and services.
Such as can we support Mr. and Mrs. Smith? What principles should be based on care and services and what concrete and achievable treatment goals are there?
Given the complexity of dementia and its implications for all aspects of daily life, we must carefully develop an approach. To redefine dementia care, we identified eight assumptions that must justify a new system, assumptions that contrast with what we know about dementia and contrast current approaches, assumptions, and actions:
- There is no magic bullet, no punctual intervention.
- A treatment, care strategy or clinical intervention does not meet all unmet needs.
- Given the diverse care and support needs, it is vital to coordinate care and integrate social and medical approaches.
- Effective strategies should be developed through a systematic process that includes assessment, preparation of a treatment plan, implementation of tailor-made care and assessment of functioning, and subsequent opportunities for change.
- A strategy or approach that is appropriate for one individual or family may not work for another, even for a strategy with the same treatment goals and disease stage.
- All health professionals have a role in dementia care.
- Careful coordination between clinical encounters, care facilities and professionals is crucial.
- All aspects should concern the person with dementia and the carers of that person.
The financing of dementia is limited, so we need to balance efforts on prevention, cure and care. There is now no solution, no treatment, no approach or strategy that applies to all families with dementia. It is a dynamic state that defies simple solutions or traditional medical models of care.
What can we do now? Looking for ways to get to know the experience of dementia from the perspective of the individual. Derive a treatment plan that responds to individual preferences, etiologies, stage of disease and living conditions. Associate individuals with community resources and engage in activities that they value. And check the needs, preferences, abilities, causes and contexts of the disease.
Nancy Hodgson is the Anthony Buividas Chair of Gerontology and Associate Professor of Nursing in the School of Nursing,
Laura N. Gitlin is a respected university professor and dean of the College of Nursing and Health Professions at Drexel University.
The above text is excerptedBetter life with dementia: impact on individuals, families, communities and societies"Published by Elsevier in June 2018. No part of the material may be reused without permission of the publisher. © Nancy Hodgson and Laura Gitlin. Courtesy of Elsevier. A book launch will take place on Sunday, November 28, 2018, from 5 to 7 pm. Mitchell Auditorium, Bossone Research Enterprise Center, Drexel University.