This is a copy of the new book "It's better to live with dementia: implications for individuals, families, communities, and societies" published in June Elsevier. November is the National Alzheimer's Month. Alzheimer's Association It offers information and research for those living with diseases and their carers.
Over the past 20 years, we have made enormous progress in understanding the pathophysiology of dementia that is basically. However, we have a far-reaching path before we fully understand this complex state and understand how to prevent, cure and manage it.
At the beginning of the trial, solanezumab, one of the most common Alzheimer's drugs, Eli Lilli, for example, showed a slowing down of progression of the disease in some people living with mild cognitive impairment. However, in the most recent Phase III study, those who received the drug were better than those in the placebo group, leaving a field of no hopes for the immediate treatment of the disease. Pfizer recently announced the discontinuation of the dementia drug detection program.
In addition to drugs, there are other treatments that are seriously evaluated, which can modify the trajectory of the disease, reduce the disability or compromise morbidity and disease burden. But to this day, a unique focus on research to find drugs has been dominated by political discourse and resource allocation. This creates a "desolation cycle", reinforcing barriers to development and access to effective care and services. In order to progress, we need to create a new paradigm, which involves viewing, understanding and acting on the biological, social, psychological and ecological context in which dementia appears and occurs.
Three research baskets
Current research on dementia comes in three broad bases – prevention, treatment and care and services – areas identified in most national dementia plans, which is important for knowledge development and action.
Prevention is a relatively new way of research in response to consistent findings that the pathophysiology of dementia often begins many years before its clinical manifestations. Identifying strategies to prevent cognitive impairment is challenging, given how complex it is that lifestyle changes are identified as those that can reduce the risk of dementia. There is also a need to estimate prevention at the population level over a long period of time.
In spite of this, there was initial progress with a growing research corpus that signaled four focus areas: regular physical activity, nutrition, social engagement and cognitive stimulation, and the treatment of cardiovascular diseases.
The specifications for each of these preventive measures are still missing. It's unclear, for example, how much and what kind of exercise is most useful, how early in life you need to adopt a healthy lifestyle to maximize the benefit and whether one must simultaneously follow all areas to significantly reduce the risk. At the moment, however, these strategies remain the most dangerous.
Other candidates to reduce the risk of dementia include bilingualism, high school and early depression. These areas, which also guarantee more investment in research, have significant implications for health and social policies (eg ensuring quality education and access to language learning).
For example, a recent study in the United States using data from a nationally representative Health Survey and Retirement Survey for individuals aged 65 years or older compared the prevalence of dementia among participants in 2000 and 2012. In this two-year period, dementia fell from 11.6 percent in 2000 to 8.8 percent in 2012. Researchers attributed some falls to increasing educational success and better control of cardiovascular risk factors such as diabetes, although other factors could have contributed. Similar trends were recorded in Western Europe and Scandinavia. If confirmed, these results can have dramatic implications for the health of the population and the national education policy.
Unlike prevention, finding "dementia" dementia has dominated research dollars, especially in the United States. To date, drug trials have failed to result in promising treatments, and nothing on the horizon has been designed to change the cause of brain dementia. Consequently, attention has begun to shift to slowing progression of the disease – especially in people with an early or mild dementia – through therapies such as immunotherapy, which could compress morbidity and possibly reduce the burden of care or the time needed for care. This change reflects the understanding that one methodology, treatment or strategy will not work for all people with dementia.
This is part of the reason that the research on care and services is slowly gaining momentum. Even with pharmacological treatments that can slow down the progression of disease – which currently do not exist – people living with dementia and their carers still require care and support services. In fact, this need will only increase because diagnoses come earlier in life and earlier in the progression of the disease. For this purpose, we need to refocus and expand our energy to ensure proper care and service. A critical empirical question is whether providing care and evidence-based services can change the course or slow down. There is some evidence, for example, that effective behavior management and psychological factors can reduce falling rates. This is a critical area for investigation, even with the future discovery of a miraculous breakthrough drug.
The paradigm of despair
The unfortunate consequence of a unique yet understandable focus on the discovery of the drug was the creation of a desperation cycle. The messages have largely led to the absence of a drug, so nothing can be done. Because nothing can be done, families do not receive any instruction, education or support, which leads to hopelessness and poor quality of life.
This way of thinking is the basis and maintains various factors that prevent access to adequate care and support. We identified six key barriers to treatment planning and effective intervention, including payment structures that reward medical therapies, and not illness and coordination, inadequately prepared workforce in dementia care, structural and perceptual stigma, and lack of access to diagnostic and dementia – nursing care specialists and treatment service.
Such barriers actually make it possible for people living with dementia and their families to have even the 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 receive even simple recommendations for existing local, national or global resources such as Alzheimer's Association, and are rarely encouraged to use local services such as adult living or advocates specializing in aging.
Individuals with dementia and their caregivers are essentially left alone, sent home with separate words "nothing that can not be done" by health workers. With little knowledge of disease and potential resources and effective care strategies, families often feel lost.
There is no doubt that there are huge gaps in evidence to provide effective care. For example, we do not have proven protocols to reduce the risk of falling, increasing mobility or managing comorbidities and sensory impairment. However, there are approaches that we can use now and from which we can build a comprehensive concern for dementia that improves the quality of life of individuals and their caregivers.
In order to progress, we need to create a new paradigm, which involves viewing, understanding and acting on the biological, social, psychological and ecological context in which dementia appears and occurs.
Take the case of Mr. and Mrs. Smith.
Mr Smith, a 82-year-old African-American, takes care of his wife, who was diagnosed with dementia four years ago in their home in urban areas. After diagnosis, Ms. Smith's doctor prescribed the Aricept medication (used to treat confusion), but pointed out that nothing else could be done. The drugs caused unwanted effects for Mrs Smith and seemed ineffective, so she soon stopped taking it. Mr. Smith had learned about Alzheimer's association accidentally from his neighbor, although he had collected some useful information on the website, he was not interested in attending a support group.
After a year, Ms. Smith was no longer safe at home, so Mr. Smith stopped working on his wife's full-time job. He began to feel isolated, overwhelmed and depressed. He could not afford home help and had difficulty in managing the growing physical addiction of Mrs. Smith and the symptoms of behavior. His two grown children had full time and their families and did not live nearby. G. Smith was also concerned about the quality of his wife's life and felt despair over his finances and the future. He, however, had diabetes and high blood pressure and did not have time to appoint his doctors.
Right now, Mr. and Mrs. Smith are alone. However, we can design a dementia model to meet their needs. What does it look like and what can we do now for this family?
Although progression of disease and experience with dementia, as well as family dynamics, are very individualized, this case represents a common experience. Families face similar challenges in understanding dementia and identifying and addressing a wide range of needs. This case also illustrates the need for a fast-moving research on care and services.
So how be able to Do we support Mr. and Mrs. Smith? What principles should be given attention and services and what are the specific and accessible treatment objectives?
Considering the complexity of dementia and its impact on all aspects of everyday life, we must carefully make an approach. To start re-dealing with the issue of dementia, we identified eight assumptions that each new system must establish, assumptions based on what we know about dementia and the contrast of today's approaches, assumptions and actions:
- No magic bullet, no intervention at the moment.
- One treatment, a care strategy or a clinical intervention will not address all unmet needs.
- Given the multiple needs for care and support, it is imperative to coordinate care and integrate social and medical approaches.
- Effective strategies should be created through a systematic process that involves assessment, creates a treatment plan, applies customized care and evaluates what it is doing, followed by continuous modification capabilities.
- A strategy or approach that works for an individual or family may not work for another, even for those who have the same treatment goals and the same stage of the disease.
- All health professionals have a role in dementia care.
- Coordination between clinical meetings, care settings and professionals is important.
- All aspects should include a person with dementia and caregivers of that person.
Dementia is limited, so we have to balance efforts aimed at prevention, treatment and care. There is, or will ever be, a solution, treatment, approach, or strategy that works for all families living with dementia. It is a dynamic situation that opposes simple solutions or traditional medical models of care.
What should we do now? Seek out opportunities to learn about the experience of dementia from the point of view of individuals themselves. Develop a treatment plan that meets individual preferences, etiologies, stage of illness and life contexts. Link individuals with community resources and keep them involved in valued activities. And re-evaluate the needs, preferences, abilities, etiologies and contexts of the disease.
Nancy Hodgson Chairwoman of the mandate Anthony Buividas in Gerontology and associate professor of care in School for care.
Laura N. Gitlin is a professor of a prestigious university and Dean of the College for Health and Health Professionals at Drekel University.
The above text is an exception from "It's better to live with dementia: implications for individuals, families, communities, and societies"Published by Elsevier in June 2018. No part of the material can be used again without the permission of the publisher." © Nancy Hodgson and Laura Gitlin Reproduced with Elsevier's permission, the book launch will be held on Sunday, November 28, 2018, from 5 to 7 pm at Mitchell Auditorium, Bossone Research Enterprise Center, Drekel University.