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Getting our Heads Around Talking about Alzheimer’s

Lets talk imageA missed credit card payment.  Forgetting why you entered a room. Misplacing your keys. Not being able to remember someone’s name.

Sound familiar? Probably. Reason for alarm? Probably not.  These types of “slips” typically fall into the category of normal cognitive decline. Cognitive abilities are the mental skills you need to carry out any task from the most simple to the most complex. These include awareness, information handling, memory and reasoning. As we get older, our cognitive abilities gradually deteriorate as part of ageing.

But what about when memory issues become more significant? What if a loved one begins to show signs of mild cognitive impairment – an intermediate stage between the expected cognitive decline and the more-serious decline of dementia or Alzheimer’s disease? 

As New York Times writer N. R. Kleinfield uncovered in his recent narrative Fraying at the Edges – a story that follows an Alzheimer’s patient from the time of her diagnosis - “the most important stage of Alzheimer’s is the initial one.”  The introductory stretch – where recognizing the signs, addressing the situation and getting a diagnosis – can set the stage for how a patient will live with the disease.

Unfortunately, for many, these early “signs” -- which can include consistent poor judgment and decision making, the loss of ability to manage money or the inability to keep track of the date or season -- are often ignored, “laughed off” or even denied. And more unfortunate is the missed opportunity: if these “signs” were addressed early, intervention could slow decline.

Barring a cure, or preventative breakthrough, the number of Americans with Alzheimer’s is projected to be 13.8 million by the year 2050– that’s nearly triple the number of Americans, age 65 or older, who currently have the disease (5.2 million).  Faced with the possibility of this staggering increase in new cases, early action becomes critical.

  Vaishnavi-sanjeev 6-16“Early detection and diagnosis result in the ability to get patients started with early interventions,” said Sanjeev Vaishnavi, MD, an assistant professor of Neurology, Penn Memory Center. “Medications can result in an initial stabilization in memory and functional impairment, especially when used early in the course of the disease. Unfortunately, the reverse is also true, meaning the longer a patient waits for intervention the less likely these treatments will be effective.”

While their effects are modest, cholinesterase inhibitors have been shown to delay cognitive decline in several studies, including a study that appeared in the New England Journal of Medicine in 2012.  Likewise, in a 2003 study in the Journal of the American Geriatrics Society, these same medicines also helped delay progressive functional impairment that resulted in admission to nursing homes.

 “We believe that early interventions are important, and will grow increasingly more important as new treatments are being developed for Alzheimer's disease that have the possibility to actually slow the rate of cognitive decline,” Vaishnavi said. “And perhaps equally important for many is that early interventions can also help patients and families plan for the future, with financial safeguarding, increased supervision, and interventions into driving that can help maintain quality of life and health.”

But in order to achieve an early diagnosis one very critical, but often extremely difficult, thing has to happen. 

Someone has to start a conversation.

Someone has to be brave enough to have a discussion that no one wants to have.

“This is certainly not an easy conversation to start,” Vaishnavi said.  “People are scared of the words dementia and Alzheimer’s disease. It’s rare that a person hasn’t seen the devastating effects of Alzheimer’s on someone else.  They don’t want to think about themselves in that position.  People are afraid they will be labeled as ‘no longer smart.’ People are concerned that they might lose their job, or become a burden on their loved ones, or that someone may become unrecognizable to them. It’s scary, scary stuff.” 

In fact, data from a 2012 Behavioral Risk Factor Surveillance System (BRFSS) survey, which included questions on self-perceived confusion and memory loss conducted in 21 states, showed that 13 percent of Americans age 45 and older reported experiencing worsening confusion or memory loss, but 77 percent of these had not consulted a health care professional about it.

Staff-felicia-greenfield2.200.280.s-1There are, however, ways to approach the subject in a non-threatening, respectful and supportive way.  According to Felicia Greenfield, MSW, director of the Penn Memory Center Care Programs, starting a conversation about the deterioration or decline of someone’s health is always difficult, but there are approaches that can lead to positive outcomes.

“More often than not the people closest to a person with memory loss are the ones who notice and become concerned,” Greenfield said. “My first piece of advice is always ‘strike while the iron is cold’. Don’t bring it up when the person is experiencing a moment of confusion or disorientation. Rather, find a time and place when it is safe to have this conversation. When both parties are feeling relaxed and content, gently ask the person if he or she has been more forgetful. If he or she admits that they have been, then offer to accompany them to the doctor’s for an evaluation.”

Sometimes a person with memory problems is aware but afraid, and avoids going to the doctor. One approach is to provide a bit of education, Greenfield said. For example, suggesting that thyroid function, depression, or a vitamin deficiency can cause memory problems, and that a visit to the doctor’s office can help them figure out what’s causing the problem, might make them more willing to explore the issue. 

“A patient might receive some good news and find that the problem can be reversed,” she said. “Believe it or not, this does happen, and patients leave feeling much better.”

Figuring out who should have the conversation with the person experiencing the memory loss is also important. 

If the person has a trusted primary care physician, they might be more inclined to see a memory specialist if the physician makes the recommendation.  Similarly a best friend, family member, or clergy person might also be most appropriate. Most often someone the patient loves and trusts will be able to get him or her to see a doctor.

Once diagnosed, the life of an Alzheimer’s patient and their caregiver takes on a new course -- one that can be filled with positive and supportive action plans, interventions and care, Greenfield said. 

“Most people eventually experience a sense of relief when they know what’s causing the problems. Knowing allows them to be proactive about their future,” she said. “But again, getting to this place requires that someone starts the conversation.”

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