By Amy Meadows
Say hi to ..." Her voice trailed off. "Your buddy!" She chirped a moment later.
I knew what my grandmother was trying to say as we exchanged goodbyes on the phone. But she couldn't remember my husband's name. She couldn't even remember the word "husband." It was the first time I had experienced her symptoms directly, and it was frightening. It's hard not to feel helpless when someone you love is diagnosed with Alzheimer's disease. Although it's such a prevalent affliction, there still seems to be so much mystery associated with the progressive neurological disorder, which affects an estimated 5.3 million Americans, according to the Alzheimer's Association. That's because, while memory loss is the symptom most correlated with the disease, there is so much more to it.
"There are a lot of misconceptions about the disease," explains Allan Levey, MD, PhD, chair of the Department of Neurology at Emory University and director of the Emory Alzheimer's Disease Research Center. "Most of the time, the first symptoms are those of memory loss—forgetfulness, losing things and repeating stories, conversations or questions." However, the indicators go far beyond those initial, well-recognized symptoms. Other early clues can include everything from loss of appetite and trouble writing to a change in sleeping habits and lack of bladder control or even spacial disorientation and depression. And those myriad symptoms often lead to a misdiagnosis. In fact, many people assume that their symptoms can simply be chalked up to the aging process. "It's the accumulation of those events, the frequency and persistence, that distinguishes age-related changes from those that really are the onset of symptoms of Alzheimer's disease," Levey notes.
Alzheimer's or Dementia?
It's not uncommon for people to use the words "Alzheimer's" and "dementia" interchangeably, but they're actually two different things. "'Dementia' is the general term for changes in cognitive abilities that are severe enough to impair the ability to function," Levey elaborates. "Alzheimer's disease is a type of dementia."
A variety of diseases and ailments can cause dementia, including Parkinson's disease, multiple strokes, frontal temporal degeneration, Huntington's disease, Lewy body dementia and other conditions. According to Lisa Kaufman, MS, CTRS, CMC, Certified Professional Aging Life Care™ Manager and owner of SeniorCare Options, getting a proper diagnosis—and an early one at that—is key. "Some of the treatments for these different diseases may be similar, but it is so important to know why someone is having memory loss so you know what you're really dealing with," she says.
Causes and Treatments
"Alzheimer's disease is an irreversible, progressive brain disease," explains Kajal Patel, MD, adult psychiatry and psychosomatic medicine psychiatrist with WellStar Psychology and Psychiatry Services. "It is characterized by the development of amyloid plaques and neurofibrillary or tau tangles, the loss of connections between nerve cells (neurons) in the brain and the death of these nerve cells."
Why this happens is the issue at hand. Patel explains that, while there is no single gene mutation that is known to cause Alzheimer's, some evidence now shows that there may be a hereditary component involved. This is particularly true when it comes to early-onset Alzheimer's, which Patel says "is caused by a mutation in one of three genes inherited from a parent."
According to Cristiane L. Fukuda, RN, MSN, ANP-BC, clinical specialist, NICHE coordinator and Transitions of Care leader for Northside Hospital, Alzheimer's can go undetected for many years as it begins to develop. "Changes in the brain start happening much earlier than the onset of symptoms," she notes. "Some of the early signs are sometimes missed because the person is able to carry on simple activities of daily living as long as their routine is maintained."
However, once symptoms are identified and a diagnosis is given, treatment must begin. Unfortunately, there really is no treatment—or cure—for the disease itself. "Alzheimer's disease is one of the leading causes of death for which we don't have a single effective treatment to slow the disease," Levey reveals. "So, the treatments are aimed at symptoms rather than, at this point, slowing the disease process." And, medications can provide a better quality of life as patients—and their caregivers—try to manage the disease.
For Alzheimer's patients and their caregivers (who most often are family members), the focus eventually must be on managing the disease as it progresses. "Persons living with Alzheimer's gradually, but progressively, lose their ability to guide their own way through daily life. The illness causes losses in all of the ways the brain allows us to act autonomously," says Ken Hepburn, PhD, education core director for the Emory Alzheimer's Disease Research Center.
Navigating the many changes can be overwhelming. Kaufman suggests that caregivers begin by consulting an aging-life-care expert, who can lead families through the twists and turns and ups and downs of daily life with Alzheimer's. "An aging-life-care expert can tell you what types of things you'll see at what stages," she explains. "The road map may be different for different people, but some of the stops along the way will be the same."
There are a number of services and options available as you and your loved one take the Alzheimer's journey together. Costs vary, but can be expensive, yet necessary. Some will be relevant right away, while others will be more useful during the later stages of the disease's progression.
In-Home Health Care
When you choose to have a loved one with Alzheimer's live with you (or if your loved one still lives alone in their own home), you need support. For many families, in-home health care can be invaluable. The level of service needed depends on how far the disease has progressed in the individual.
As the Alzheimer's Association explains, services available can include:
- Companion services—supervision and basic activities
- Personal-care services—assistance with bathing, dressing, eating and more
- Homemaker services—housekeeping and shopping
- Skilled health care—wound care, injections and other medical needs
"Helping an individual feel included in everyday life and focusing on their abilities and not on their impairments is very important to helping manage the disease on a daily basis," says Georgia Gunter, executive director of Adult Day of Dunwoody. "We need to give them the opportunity to participate in things that give them back a sense of self-worth."
Adult day services can help individuals stay physically, mentally and spiritually alert with exercise programs, and group activities as well as offer everything from medication administration and meal assistance to physical, occupational and speech therapy. The services also give caregivers a bit of respite from the daily routine of attending to a family member with Alzheimer's.
Assisted-Living Facilities and Memory Units
While difficult to imagine, there may be a time when finding another permanent living arrangement for your loved one will be the best option for both of you. According to Fukuda, that time comes "when poor cognition is jeopardizing their safety and ability to care for themselves." Give yourself time to research your local options and find the right facility for everyone involved, so that you make a move at the right time. "It is likely that most caregivers wait too long to think about this question, and when they do, the question about placement in a facility is asked with some urgency," Hepburn states.
In cases of moderate to severe Alzheimer's, a memory-care unit may be needed. "As the symptoms of Alzheimer's dementia progress, it may become difficult to meet a patient's everyday care needs," Patel explains. "A patient's behavior may become difficult to manage and they may start to wander, 'sundown' [a term for behavioral issues intensifying in late afternoon to evening hours] or become more aggressive and pose a danger to themselves or others. In these situations, a higher level of care, such as a memory-care unit, dementia-care unit or nursing home should be considered." Some assisted-living facilities feature a memory-care unit onsite; if a person is already living in such a facility, a move to the new unit can be seamless.
Caregiver Support Services
Caring for a loved one with Alzheimer's can be exhausting and draining. It's easy to lose perspective and feel defeated by the ongoing strain. "Self-care is so important. The number-one thing is to keep yourself sane and healthy. You have to rest and exercise," Kaufman says. "You have to take care of yourself because, if you don't, you will not be able to take care of someone else." Personal counseling or Alzheimer's caregiver support groups can provide an outlet for sharing feelings and serve as a place to gather resources as your loved one moves through the stages of the disease.
As Hepburn advises, be aware of what is happening in your relationship with your loved one. "Recognize that you are in a new role," he says. "What is happening in front of you is not personal—it is a disease at work.
This new role—caregiving—is likely not one for which you have been trained ... recognize that you need to learn new skills. Get information from reliable sources."
What Lies Ahead
Ongoing research is providing hope for everyone who currently lives with Alzheimer's and for those who may be touched by it in the future. "The breakthroughs in Alzheimer's research over the last several years have shown us that the disease starts decades before symptom onset, so that has really changed our frame of thinking—to recognize the importance of early detection," Levey notes. "We have to identify people as early as possible and begin treatment as early as possible."
In the meantime, it's crucial to support those currently in the midst of the struggle. "We need to look at the individual who has received a diagnosis of Alzheimer's disease as still living—not suffering or demented or victimized," Gunter says. "The term 'person living with dementia' acknowledges that this person is living and can still love, laugh and grow every day."
"Alzheimer's disease is frightening and powerful, but there are blessings there," Kaufman concludes. "There can be great days. Those are the moments you can treasure—those moments of providing care for another person. You just have to look for them."
Adult Day of Dunwoody, adultdayofdunwoody.com
Alzheimer's Association, alz.org
Atlanta Home Care Partners, atlantahomecarepartners.com
Emory Alzheimer's Disease Research Center, alzheimers.emory.edu
National Institute on Aging's Alzheimer's Disease Education and Referral Center, nia.nih.gov/alzheimers
Northside Hospital, northside.com
SeniorCare Options, seniorcareopt.com
WellStar Psychology and Psychiatry Services, wellstar.org