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Resources available to help families cope

Living with Alzheimer’s isn’t easy.

Alzheimer’s disease can evade diagnosis in its early stages and even when the diagnosis comes, current medications may or may not help slow its progress.

Retired District Judge Kenneth Martinez and his wife, Vivian, of Albuquerque, say it was easier to deal with her cancer, because of available support, than it was to deal with his younger onset Alzheimer’s diagnosis.

“With Alzheimer’s there’s nothing,” Vivian says. “My whole world fell apart when my Ken was diagnosed with Alzheimer’s. The unknown was driving me crazy and I was feeling so helpless and so desperate for answers.”

Both Martinezes say that the Alzheimer’s Association has played a huge role in helping them cope with the complexities they face. Alzheimer’s disease is the sixth leading cause of death and has no cure, no long-lasting treatment and no prevention.

DuWayne Branscombe, also of Albuquerque, says resources at the association, like its educational course, Savvy Caregiver, its always open helpline and support groups helped him and his family deal with his wife’s five-year decline to Alzheimer’s disease. His wife, Lois Branscombe, died in 2014.

“We need more funding for research,” Branscombe says. “The Alzheimer’s Association was one of the only things that made this experience doable for us. If we are not going to find a cure soon, at least we have to teach people to be great caregivers.” He says he also found great support at his church.

Chris McCaffrey of the Alzheimer’s Association, New Mexico chapter, says the seven-week Savvy Caregiver course helps caregivers “wrap their arms around what they are dealing with. It helps them set realistic caregiving goals. We emphasize caregiver self-care. We get them shored up.” The course offers a philosophy of care and how to communicate effectively with someone with dementia.

McCaffrey says the association offers its services to help caregivers come up with an individual plan for their loved ones and has a respite program.

Cabinet Secretary Gino Rinaldi of the New Mexico Aging and Long-Term Care Department says the Savvy Caregiver course is the educational backbone of the state’s plan. The state is working to make the course available for people across the state and is recruiting volunteers to teach and support the program. “Alzheimer’s is one of the most expensive of diseases. It’s a looming public health concern. People with Alzheimer’s are living longer. It’s a long journey. The impact on caregivers can be horrendous. This is something we have to deal with as a community.”

In New Mexico last year an estimated 106,000 caregivers cared for 36,000 people with Alzheimer’s and other dementias, volunteering 121 million hours, valued at almost $1.5 billion, according to the Alzheimer’s Association.

Support needed

While researchers locally and across the globe are working to discover a cure or treatment, people with Alzheimer’s and their loved ones need support from the medical community, says Dr. Janice E. Knoefel, a neurologist and gerontologist. Knoefel runs the Cognitive Disorders Clinic in the Clinical Neurosciences Center at the University of New Mexico Health Sciences Center.

She’s conducting a study later this month with those diagnosed with Alzheimer’s and their caregivers to understand how health-care professionals can better meet their needs.

“There are pitfalls and deficiencies in our country’s health-care system. We need to focus our attention and energy to figure out how to make it better,” she says. “It could be you and I next year.”

People move through Alzheimer’s disease in stages as their brain is slowly dying. Most people with Alzheimer’s forget recent past events, have trouble keeping up with conversation or following a book or a movie. They may have trouble retrieving the right word or name. Individuals move through the disease at different paces, eventually losing the ability to care for themselves. Some exhibit challenging behavior, becoming anxious, agitated, aggressive and fearful. Many wander in later stages and get lost in once familiar places. Most everyone with Alzheimer’s eventually needs help with their activities of daily living and may not be able to swallow or talk.

“Many patients don’t recognize the change in their behavior or function,” she says. “It’s complex. The family has to be empowered and encouraged to take action on their loved one’s behalf. Alzheimer’s is not like any other disease condition. It’s why I have the Cognitive Disorders Clinic. At the first visit we put everything on the table, discussing memory, language, spatial skills, driving, sleeping, work life, social activities and many other aspects of their lives.”

Knoefel says detailed neurological and neuropsychological exams help her understand what part of the brain is having trouble and aids in her diagnosis. She does a battery of tests to rule out other problems that could resemble dementia. Dementia or thinking problems could have any one of a number of other causes, but Alzheimer’s is the most common kind of dementia.

About one in four of her patients is looking for a second opinion after seeing another doctor, she says.

Even if someone passes a basic screening test at their primary care provider, they can still have serious issues, she says. For example, someone could miss three answers on a screening test and still pass. However, if all three of those questions evaluated memory, the person may still have a problem. If the family sees a problem, she encourages them to push for further testing.

However, she doesn’t favor genetic testing: “We don’t have a way to prevent Alzheimer’s or to treat it.”

A small percentage of people with Alzheimer’s have an inherited gene that is associated with the disease. Those who have this gene may or may not develop Alzheimer’s later in life: “It’s not going to determine whether you do or not. In my 20 years of practice I haven’t ordered an APOE-4 (the gene that may or may not predict Alzheimer’s) test.” That is usually reserved for research.

The abnormal proteins, beta-amyloid and phosphorylated tau, present in the microscopic brain changes called plaques and tangles can be present in spinal fluid. Although someone could test for these, the outcome is still the same. “The end result is there is no treatment and a spinal tap is painful.” She says those kinds of tests are more often done in research settings.

Dr. Sofya Rubinchik, psychiatrist, Behavioral Health at Presbyterian, says she doesn’t recommend genetic testing either. “It’s not validated, because we can have false positives and we don’t have any prevention.”

However, genetic testing may be helpful in establishing a cause for early-onset dementia in some patients. She recommends documenting a clear family history when it’s suspected, but understands that information is not always available because a person may die before symptoms appear.

The decision to pursue genetic testing depends on the individual and factors such as age, other family members who may be at risk or may be affected, and cost and insurance. She says because test results could have wide-ranging implications, genetic counseling is always necessary.

What research does indicate is a healthy lifestyle with a good quality diet and regular exercise, the same that helps reduce the risk of heart disease and diabetes, may reduce the risk of Alzheimer’s and other dementia, she says. She recommends brain games, like Luminosity, to stay sharp, engaging socially and intellectually and alleviating stress.

Most patients come to her after they have done something unusual that caught their family’s attention. She recommends that people come to a specialist sooner rather than later, because the medications that are available are more effective in earlier stages of the disease. Also dementia must be distinguished from symptoms of memory loss or personality and behavioral change that are provoked by underlying systemic illness, medication, psychiatric disorder or substance abuse.

“Patients experience a wide range of severity of symptoms,” she says. “Every individual is different. Some people demonstrate rapid cognitive decline. In some patients we see slow progression for many years.”