Could it Be Dementia? 10 Quick Questions

Joan Jackson
By Joan Jackson March 15, 2016 18:35

nurse, arm around elderly lady

This story appeared in FAN’s Spring 2016 issue along with Dr. James Galvin’s “Quick Dementia Rating System (QDRS)”.

It may begin with puzzling changes in behavior: odd lapses in memory, too many forgotten words, skipped showers, difficulty writing checks or some other shift that doesn’t quite make sense.

The signs multiply and you worry about your loved one.

While no one wants to confront the possibility of dementia, you know your husband, wife, mom or dad better than anyone else. It seems as if something is wrong – but how do you know if it’s dementia?

A simple new tool may help. By answering 10 questions, families now can assess early indicators of dementia with accuracy near that of professional clinicians.

Dr. James Galvin, a neurologist and nationally recognized expert on memory disorders, was seeking a way to help families and health care providers screen for early signs of dementia when he began work on the Quick Dementia Rating System (QDRS).

Many family doctors have neither the specialized training nor the two to three hours needed to assess a single patient, Galvin says, and early dementia sufferers may be able to hide symptoms during brief doctor visits. He designed the QDRS to fill those gaps which may delay diagnosis.

“For most patients and family members, access to a dementia specialist is limited,” says Galvin, associate dean of clinical research at Florida’s Charles E. Schmidt College of Medicine. “Nearly all their care is provided by internal medicine and family medicine doctors, nurse practitioners and physician assistants.”

Research has found the QDRS, now used by clinicians and researchers in 10 countries, to be a reliable indicator of various stages of dementia. With Galvin’s permission, FAN has posted the questionnaire and scoring instructions at this link: “Quick Dementia Rating System (QDRS).”

Dr. James Galvin

Dr. James Galvin

The survey is intended to help family members take the first steps – validating or relieving their suspicions – and lead them to conversations with health care providers. Though Galvin developed the QDRS primarily for use by family members, it’s also being evaluated as a self-assessment tool.

“It appears to work equally well for individuals who wish to score themselves, at least those at the mild stages of impairment,” says Galvin, a strong advocate of early diagnosis and early medication, counseling and planning.

Dr. Liza Ortiz, Tuolumne County Health Officer, calls the QDRS a “well-validated, widely used screening tool.”

She advises families who use it to follow up by seeking a formal diagnosis – “the earlier, the better.”

“Take the results to your primary care doctor,” Ortiz says. “Even if you start with a specialist, it’s important to keep your primary doctor in the loop.”

Doctors will typically order lab tests to rule out other causes of dementia symptoms, and may do a “mini mental-status” exam. If results indicate dementia, individuals or families can make plans.

Galvin says families may want to seek a referral to a specialist, such as a neurologist, psychiatrist or geriatrician. “They should also contact the Alzheimer’s Association for support services.”

Dementia is an umbrella term that describes a range of symptoms associated with decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease accounts for about 70 percent of all dementias, while a variety of other types – Lewy body, vascular dementia and Huntington’s disease among them – make up the other 30 percent.

Alzheimer’s is the nation’s sixth leading cause of death and the only one in the top 10 that cannot be prevented, cured or slowed.

Although there are no overall statistics on dementias in the U.S., Alzheimer’s cases totaled 5.3 million in 2015; California had 590,000 cases, according to the Alzheimer’s Association.

With the oldest Baby Boomers now entering their 70s, the number of dementia sufferers is expected to double in the next 15 years – and triple by 2050.

While the growing numbers have policymakers, social, medical and government agencies scrambling to plan for the future, the effects on family caregivers are immediate and personal: uncertainty about what to do and grief as their loved one changes and slips away.

Though Galvin and others emphasize the value of early assessment, getting an expert diagnosis can be difficult. Dr. Nina Silverberg of the National Institute on Aging (NIA), part of the National Institutes of Health, agrees that many physicians have neither the specialized training nor the time needed to fully assess a patient’s memory, thinking and behavior problems.

“In addition to the difficulties involved in diagnosing Alzheimer’s and related dementias, as of yet we do not have effective treatments for these very complex and devastating disorders. Physicians tend to ask, ‘Why should I diagnose when there is nothing that can be done?’ ” says Silverberg, program director of the NIA’s Alzheimer’s Disease Core Centers Program.

Ortiz’s advice: “If your doctor says that there is nothing that can be done, I’d say find another doctor.”

Both agree that lab work and further tests are important.

Nearly nine percent of people with dementia-like symptoms may not have dementia at all, according to a 2015 Alzheimer’s Association report. Thyroid disease, depression, medication side effects, certain vitamin deficiencies and other undiagnosed medical problems can mimic dementia. All benefit from early intervention.

“Even a really nasty urinary tract infection can cause symptoms that look like dementia,” notes Ortiz.

While there are no cures for most dementias, if symptoms are confirmed, medications may offer a patient more clarity for a time.

The five FDA-approved Alzheimer’s drugs are Aricept (donepezil), Exelon (rivastigmine), Namenda (memantine), Namzaric (memantine extended-release and donepezil) and Razadyne (galantamine).

Because not all dementias respond well to the same drugs, accurately identifying the type of dementia is critical, Ortiz says. “There is a huge difference between vascular dementia and Alzheimer’s.”

Early detection gives a patient’s family more time to prepare for the disease’s progression. A mildly impaired person may be able to participate in planning, express his or her preferences and sign necessary legal documents. Later diagnosis may make these tasks impossible.

Early diagnosis also may allow a patient to participate in clinical trials of new medications not publicly available.

Silverberg says that while the QDRS is not a substitute for a clinical diagnosis, it is a valuable tool for starting a conversation with health care providers. “It is helpful for the family, for the person, for the doctor.”

These can be difficult conversations for all concerned. Only 45 percent of all Alzheimer’s sufferers are told the diagnosis by their doctors – and only 27 percent of those with other dementias, according to a recent Alzheimer’s Association report.

“Everybody’s different, and some people don’t want to know, but research shows that most people and their families do want to know,” Silverberg says. “It allows people to understand why that person is acting the way they’re acting. It lets families get prepared.”

“I think people should be told,” says Ortiz.

“Physicians should be prepared to tell their patients difficult news. If they’re not able to, they should pass them on to someone who can. Dementia is a significant issue, and it is underdiagnosed.”

Find a Clinical Trial

There is no cure for Alzheimer’s disease and only five FDA-approved drugs are on the market to help deal with its symptoms.

Clinical trials help researchers find better treatments and possibly a cure. People who participate in a trial have an opportunity to test the newest treatments, learn more about their condition and receive care from experts. Many studies also recruit volunteers who are cognitively normal.

“Even if they can’t go to a center to participate, there are lots of things they can do to help, including online research projects,” says Dr. Nina Silverberg of the National Institute on Aging.

To find an Alzheimer’s or related clinical trial, go to nia.nih.gov/alzheimers/clinical-trials and search by location or keyword. You can also visit clinicaltrials.gov and type a state or region name (Northern California, for example) in the search box.

Dementia Diagnostic & Treatment Resources

Alzheimer’s Association, alz.org, 24/7 Helpline: 1-800-272-3900, resources for caregivers and patients; California-specific information, alz.org/norcal/in_my_community_12983.asp

National Institute on Aging, nia.nih.gov/alzheimers, 1-800-438-4380, information, news, resources and clinical trials for Alzheimer’s patients, caregivers and professionals.

California Alzheimer’s Disease Centers

The five centers below are part of a broader statewide network that offers diagnosis, education, clinical research and trials.

UC Davis/Sacramento, ucdmc.ucdavis.edu/alzheimers, 916-734-5496.

UC Davis/East Bay, ucdmc.ucdavis.edu/alzheimers, 855-420-2612.

UC San Francisco (UCSF), Memory and Aging Center, memory.ucsf.edu, 415-476-3898.

Stanford University/VA Alzheimer’s Research Center, med.stanford.edu/svalz, 650-858-3915.

UCSF Fresno, fresno.ucsf.edu/alzheimer, 559-227-4810.

Copyright © 2016 Friends and Neighbors Magazine

Joan Jackson
By Joan Jackson March 15, 2016 18:35
Write a comment

No Comments

No Comments Yet

Let me tell you a sad story. There are no comments yet, but yours can be the first!

Write a comment
View comments

Write a comment

Your e-mail address will not be published.
Required fields are marked*