An international commission states 1 in 3 dementia cases could be prevented by targeting risk factors from childhood onward. A Michigan Medicine expert explains more.
Alzheimer’s and related dementias are the “greatest global challenge for health and social care in the 21st century,” according to a new report from The Lancet Commission on Dementia Care.
A 24-member international commission panel convened last year to examine the diseases’ burden, author the report and share key messages. Recently, representatives from the group, including Helen C. Kales, M.D., a University of Michigan professor of psychiatry and founding director of the U-M Program for Positive Aging (PPA), unveiled their findings at the Alzheimer’s Association International Conference in London.
We sat down with Kales to discuss her take — and what health care providers and policymakers should know.
What is the takeaway for those interested in dementia care and policy?
Kales: While the commission’s comprehensive report contains 10 key messages, my focus is on one overarching takeaway, plus three other messages from within the report.
The overarching message is the importance of a focus on dementia care. This focus by a journal as prestigious as The Lancet is at once both critical and revolutionary. A quick look at the AAIC 2017 program reveals that the vast majority of research in dementia is related to cure. Research on the “care” part is far outnumbered. But there is no current cure for dementia, with any such disease-altering treatment at least 10 to 20 years in the future, and there’s an aging population, meaning the prevalence of dementia will triple by 2030. A greater focus on care is imperative. I hear this regularly from families of those with dementia: “We need help now.”
Unfortunately, in the U.S. and in many other countries, access to comprehensive and coordinated services for dementia care often depends on where you live, what resources you have and whom you know. Poorly coordinated, fragmented care leads to inappropriate use of health care in the form of potentially preventable emergency room visits and hospitalizations, rather than having case management so that referrals can be made earlier and often for supportive and outpatient services. It is my hope that The Lancet report will be a change agent.
There are three more subtle messages in the report that I also wanted to focus on.
What are those three key messages?
Kales: The first message I want to focus on is becoming ambitious about prevention.
We do not know the causes of many types of dementia, as detailed in the report, though we are starting to accumulate evidence for risk factors that, if altered, could prevent or delay dementia in up to a third of cases. Many of these are interventions, such as improving social engagement, managing hearing loss and stopping smoking, have general health benefits and minimal risk.
It is believed that the compression of dementia incidence that we are seeing in the U.S. is a result of healthier lifestyles in more recently aging cohorts. So, while we are waiting for more studies on how to implement interventions for these risk factors on a larger scale in our countries, it is certainly worth “preaching” about modifying these risk factors to our middle-aged and older patients in clinical settings. This is really what “positive aging” is about and is clearly a focus of the University of Michigan Program for Positive Aging. With age, most of us will face some combination of medical problems, cognitive changes, anxiety, depression or the stress of being a caregiver. The good news is that much of what comes with aging can be managed — and it is this management that can improve quality of life markedly in later life.
The second message is about individualizing dementia care and caring for family caregivers. Inherently, dementia care must be both person-centered and caregiver-centered. I believe that this message has come through loud and clear throughout the commission’s report. Good dementia care is comprehensive and links medical care with social and supportive care in the community. Contrary to popular belief, most people with dementia are cared for in the community by family caregivers who, as noted in the commission’s report, “are the most important resources available for people with dementia.” We need to treat them as such. Family caregivers are drafted into an unpaid profession without training and are highly prone to depression and anxiety; caregiving can literally cause them to “go down with the ship.”
The commission report underscores the value of these caregivers and the types of resources, education and services they need access to be effective and healthy. We are so proud of the caregiver interventions that we have created and are implementing in the PPA. These include DICE (Describe, Investigate, Create and Evaluate) training for family and staff caregivers and the web-based dementia care tool, WeCareAdvisor, that we have developed and tested successfully in a recent National Institutes of Health-funded trial. The commission’s report gives added impetus to pursue such interventions for caregivers.
The third and final message I would like to highlight is that of assessing and managing neuropsychiatric symptoms. While dementia is thought of as a memory problem, behavioral symptoms occur universally and are among the most complex and challenging symptoms faced by caregivers and providers. The good news is that while we are fairly limited in what we can do for memory at this point, we are accumulating evidence on the ability to improve outcomes and quality of life for people with dementia and their caregivers by managing behaviors. The report outlines the utility of approaches like DICE to assess and manage behaviors through an emphasis on training caregivers as well as health care providers in the treatment of modifiable underlying causes (e.g., pain, negative caregiver communication style or an overstimulating environment), and selection of tailored nonpharmacologic strategies over the knee-jerk use of sedating medications.