Hope for an Alzheimer’s Cure?
By Diane Walker, RN, MS
By Diane Walker, RN, MS
Promising advancements for diagnosing Alzheimer’s disease provide researchers with optimism related to better treatments options.
November, which is National Alzheimer’s Disease Awareness Month, is a time of optimism among professionals working to find a cure for Alzheimer’s disease (AD) and other forms of dementia. New reports detail the research and clinical trials being conducted to find a cure and slow the progression of AD, using new forms of treatment earlier in the course of the disease.
November is also National Family Caregivers Month, and AD-related advances give hope to the millions of caregivers affected by this illness.
AD is the most common form of dementia, currently affecting more than 5 million Americans. Dementia, characterized by memory loss, confusion, and cognitive decline, usually develops in adults aged 65 or older, affecting about 10% of older adults. That percentage increases to about 50% of adults over the age of 85.
The number of people diagnosed with dementia is rising dramatically, and new estimates indicate the number of people affected will triple to more than 16 million by 2050. In the United States, someone develops AD every 70 seconds and by 2050, this number will increase to every 33 seconds. An AD diagnosis will disrupt the lives of millions of family members and close friends, and the impact is projected to severely inhibit Medicare, the nation’s healthcare system, and the country’s economy. Projected costs are estimated to reach $627 billion.
Although we still do not know its cause or how to treat it effectively, our understanding of AD has increased greatly as many studies, both completed and currently under way, are giving us new hope and insight.
“We have a greater understanding of the biology of the disease now,” says Carol Lippa, MD, director of the Memory Disorders Program at Drexel University in Philadelphia. “We have a much clearer picture of the proteins at work in the brain that kill brain cells and generate the formation of plaque which disrupts the neurotransmissions we observe as the hallmark signs of the disease: memory loss and confusion.”
A major focus of the research at Drexel is to prevent the formation of amyloid plaques using vaccines. The initial trials were generally unsuccessful, although this was largely due to the side effects caused by the removal of these proteins. However, Lippa sees a positive indication, observing that researchers learned from those studies, and she remains optimistic that the current phase 2 and 3 trials will be more successful.
Some of researchers’ optimism is related to two recent developments. First, new diagnostic tests will enable clinicians to identify asymptomatic individuals who are at risk of developing AD and test potential treatments on asymptomatic middle-aged adults. This breakthrough occurred as part of the Alzheimer’s Disease Neuroimaging Initiative at the National Institute on Aging (NIA). Studies have identified differences or biomarkers in the blood, spinal fluid, and PET scans of individuals with the disease and those unaffected by it. There is growing hope that treating AD early in its course, before extensive damage occurs in the brain, will lead to ways to slow the disease or prevent its development altogether.
The second development is a change in the way AD is diagnosed. The NIA and the Alzheimer’s Association are encouraging physicians to define three distinct groups of individuals with AD: those at high risk who remain asymptomatic, those with mild cognitive impairment, and those with AD and other forms of dementia. While the early diagnosis of AD can help prepare future “victims” for the challenges to come, the severity of the diagnosis raises many questions about the best way to proceed for both physicians and their patients. Lippa says, “We want to be sure before we tell someone they have this diagnosis—it’s like a death sentence—but as painful as it is, it will be better because we can work with the client and their family to be proactive.”
If a diagnosis is made early in the course of the disease, or even decades before the first symptoms surface, affected adults will be able to take part in the decision-making process and decide whether to enroll in clinical trials that may assist in slowing or preventing the disease.
According to the Shriver Report, 90% of Americans who know someone with AD are concerned that they or someone close to them will be afflicted. However, planning ahead for this possibility is difficult, and family members—primarily women—assume the burden of day-to-day care.
More than 65 million Americans are actively involved in caregiving and provide up to 80% of the required personal care for individuals who need assistance with the basic activities of daily living. Becoming a caregiver is a transition that often requires a restructuring of personal goals, daily activities, and responsibilities. For some caregivers, this role can cause stress and feelings of burden. Caregivers need to consider the implications of long-term caregiving and ensure family and community resources are in place to support their caregiving activities.
As anyone who has been a caregiver will tell you, caring for a person with AD is deeply challenging due to the responsibility of managing difficult behaviors such as wandering, agitation, aggression, and social isolation. A caregiver’s reaction to these challenges must be levelheaded and sensitive to avoid the escalation or exacerbation of such behaviors. Elizabeth Gonzalez, PhD, PMHCNS-BC, an associate professor of nursing at Drexel University, has developed a program to help caregivers enhance their resourceful skills in dealing with chronic stress and handling challenging behaviors of loved ones with AD.
“Caregivers are at risk for negative health outcomes because of chronic stress that alters immune function, slows wound healing, and leads to mild hypertension and coronary heart disease,” Gonzalez says. The program provides caregivers with skills enabling them to adapt to the multitude of challenges associated with caring for someone with AD. “Caregivers have little time for self-care, recreational activities, or a social life,” she says. “We designed the program to occur in a group setting so caregivers can socialize and develop a support network.”
Family caregivers who intend to provide care at home for their loved one for as long as possible need a great deal of support if they want to avoid personal burnout, depression, illness, and the premature institutionalization of their care recipient. As the number of individuals providing care to loved ones increases dramatically over the next 20 years, healthcare providers will need to be especially vigilant in detecting the “hidden patients” they work with. If we are able to diagnose the disease years before symptoms appear, the acceptance and use of respite will be critical for caregivers maintaining their health. Healthcare professionals can work with caregivers to plan ahead with a qualified home care agency to maintain loved ones in the community with their family and friends.
Experience has taught us that professional caregivers are invaluable partners to families on their AD journey. As we celebrate efforts of professional and family caregivers and dedicated research and health practitioners this month—and throughout the year—we look forward with great hope and even greater understanding of how best to serve this population.
— Diane Walker, RN, MS, is vice president of learning and performance systems at Griswold Special Care and the editor of CaringTimes, a publication and website for family caregivers and healthcare professionals (www.caringtimes.org).