Rebecca Wyant (left) is the primary caregiver for her mother Mary, who suffers from Alzheimer’s. Photo by Mike Fritz / PBS NewsHour
Mary Wyant loved words. She loved to speak them and write them and read them. She was a stickler for proper grammar and a “mean” Scrabble player. “Mean in both senses of the word,” according to those who played with her.
That’s why her daughter Rebecca noticed right away when her mother began calling a female friend “him” while telling a story. The small mistake was enough to make Rebecca think something big was wrong.
“My mother was a master of the English language,” she said. “I knew it wasn’t a tic.”
She was right. As much as Mary tried to fight it, the confusion intensified and she began losing her memory at age 65. The official diagnosis of Alzheimer’s disease came next, followed by frustration, depression and divorce. She moved in with Rebecca shortly thereafter.
Like two-thirds of Americans, Mary had done virtually nothing to plan for long-term care.
Rebecca became her mother’s legal guardian, but they didn’t discuss specifics for the future, “except for me to create a home where she could stay as long as she possibly could stay.”
As Mary began losing control of most of her independence and ability to communicate, that meant Rebecca had to assist her mother with everything from getting out of bed in the morning to helping her bathe. There are days Mary becomes “combative and agitated” and other days she wanders. But occasionally there are glimpses of her old self, like when her face brightens as she looks at old photos or when she gasps and smiles when she sees someone she recognizes.
On Thursday’s PBS NewsHour broadcast, Ray Suarez examines what it takes for people like Rebecca to maintain that kind of care. More than five million Americans now suffer from the disease and related dementias. Barring a breakthrough, the figure could triple by 2050. Like Mary, many of them will fade slowly and require years of long-term care during the decline. Tune in Thursday for the NewsHour’s full report.
In the meantime, the New York-based Alzheimer’s Foundation of America has compiled a list of “10 Things You Should Know About Alzheimer’s Disease” — how to recognize it early and steps every family impacted should take to plan for the future.
Signs of Alzheimer’s Disease: 10 Things You Should Know, According to the Alzheimer’s Foundation of America
1. “Old age” is not an excuse.
While some memory loss, cognitive decline and behavioral changes are normal as we age, Alzheimer’s disease is not a normal part of aging. Advanced age is the greatest known risk factor, however, with incidence of the disease doubling every five years after age 65. Also, while Alzheimer’s disease typically strikes people 65 and older, a rarer form of the disease, known as young-onset or early-onset Alzheimer’s disease, presents in people as young as in their 30s and 40s.
2. Look for patterns.
All of us from time to time forget someone’s name or what we ate for breakfast. But consistent forgetting raises a red flag. It’s easy for anyone to forget to pay a bill once. There is a problem if the same statement gets paid five times or if months go by without paying bills.
3. Symptoms can mimic other conditions.
Identifying the disease or problem that is causing memory loss helps with next steps. Some memory problems can be readily treated, such as those caused by vitamin deficiencies, depression or thyroid conditions. Other memory problems might result from causes that are not currently reversible, such as Alzheimer’s disease. With Alzheimer’s disease, symptoms gradually increase and become more persistent.
4. Not every case is the same.
There are general warning signs of Alzheimer’s disease, but not everyone exhibits the same ones or at the same time in the progression of the illness. In addition, some individuals with the disease manage to cover up symptoms: for example, they might hide behind jokes or disinterest.
5. Alzheimer’s impacts day-to-day living.
Alzheimer’s disease is not only about memory problems; it also affects a person’s ability to function day-to-day. It can cause difficulty performing familiar, pre-programmed tasks like dressing or bathing; misplacing items more frequently; becoming lost while walking or driving; and loss of interest in important responsibilities, such as paying bills. The concern is not so much if someone forgets where the car keys are, but if the person does not know what the keys are used for.
For pre-retirees, symptoms of Alzheimer’s disease often first become noticeable in the work environment. A supervisor, for example, might note that the person is unable to concentrate, can no longer multi-task or is performing at a lower level than in the past.
6. Alzheimer’s disease has cognitive symptoms.
Common cognitive symptoms include:
short-term memory loss
problems with verbal communication such as not finding the right words or repeating things
confusion about time, place or people
lack of judgment
difficulty performing familiar, pre-programmed tasks like dressing or bathing
misplacing items more frequently
becoming lost while walking or driving
- disinterest in important responsibilities, such as paying bills
7. Alzheimer’s disease has behavioral symptoms.
Behavioral symptoms might include:
unexplainable mood swings
sundowning — increased agitation in the late afternoon/early evening
expressing false beliefs
- inappropriate sexual behavior
Behavioral symptoms are often what trigger family caregivers to more seriously weigh additional help, such as a home health aide or long-term care placement. The results of a Harris Interactive survey prepared for the Alzheimer’s Foundation of America found that about half of family caregivers surveyed said they would consider long-term care if aggression became too difficult to handle, the person self-harms or they fear injury or harm to themselves or other family members.
8. Check out warning signs.
According to a study of participants who obtained free, confidential memory screenings during the Alzheimer’s Foundation of America’s National Memory Screening Day in 2010, 74 percent were worried about their memory, but 83 percent of them had not discussed concerns with their health care provider. Why not? Forty-six percent said that they did not think that their memory issues were severe enough, and 20 percent said that their health care provider had never asked them about their memory.
Start with your primary care physician. Depending on findings, the physician may recommend follow-up with a specialist. If you’re a Medicare beneficiary, it’s important to know that “detection of cognitive impairment” is a feature of the new Medicare annual wellness exam.
9. Diagnosis is 90 percent accurate.
Although Alzheimer’s disease can only be confirmed by an autopsy, clinicians can now diagnose Alzheimer’s disease with up to 90 percent accuracy. Diagnosing “probable” Alzheimer’s disease involves taking a complete medical history and conducting lab tests, a physical exam, neuro-psychological tests that gauge memory, attention, language skills and problem-solving abilities, and brain scans.
10. Don’t just take the diagnosis and run.
Good communication can maximize your visit to a physician. Ask questions such as:
What other tests should I take?
Should I see a neurologist, geriatrician or other specialist?
How does the disease progress?
What are all the available treatments, and their effectiveness in terms of helping to slow progression of symptoms?
Do the medications come in different forms (liquid, capsule, patch)?
Are there clinical drug trials that would be appropriate for me?
- Besides medication, are there behavioral interventions and lifestyle changes, such as diet, exercise and mental activities, that might help?
Next steps should include getting better-educated about the disease, obtaining support services and planning for the future. With that in mind, be proactive by:
Finding out about national, local and online resources, such as educational workshops, support groups and discussion boards for both diagnosed individuals and family members
Checking out the availability of various professional care services, such as adult day programs or home health agencies, in order to help a person remain independent longer and provide respite to family caregivers; and long-term care facilities when appropriate in the future
Preparing estate planning documents and advance directives, such as a will, a living will that states end-of-life wishes and a durable power of attorney that appoints a person to make medical decisions on an individual’s behalf
- Modifying the home environment in order to prolong independence, maximize safety and improve quality of life; this might range from de-cluttering walkways to prevent falls to securing doors in a way that are difficult to open to thwart wandering — a common behavior that results in about 60 percent of people with the disease
This process involves — and helps — both the person with Alzheimer’s disease and family members. Someone who obtains a diagnosis earlier in the disease process when cognitive skills are more intact can make legal decisions and express wishes for end-of-life care, relieving family members of that decision-making. Support services can help lessen the emotional, practical and even financial toll of the disease; research studies show that caregivers who receive counseling and support services can help delay placing their loved ones in nursing homes.
Given that Alzheimer’s disease can last two to 20 years from diagnosis, caregivers often face a long and bumpy journey with loved ones. As one caregiver whose husband has Alzheimer’s disease noted: “It is a devastating disease that you know won’t get better. You just have to try and hope for a good day and then prepare yourself for a bad day.”
Do you have questions about Alzheimer’s disease? Email them to firstname.lastname@example.org or leave them in the comments below. Someone from the Alzheimer’s Foundation of America will answer next week.
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