For the massive number of victims of Hurricane Sandy, life has changed. If you think of how difficult it is for healthy people to endure nature's wrath, just imagine how individuals with Alzheimer's disease or a related dementia might be feeling. Vulnerable populations become even more vulnerable in the wake of natural disasters or other emergencies.
In situations like this, misconceptions about Alzheimer's disease often come to light -- and the need for education becomes glaringly apparent. This is when caregivers may see their loved ones exhibit various symptoms of the disease for the first time or see them magnified. Reality sets in that Alzheimer's disease is not just memory loss, it is a host of intellectual, or cognitive, symptoms as well as behavioral symptoms. And, with no cure or treatment to stop, reverse or prevent it, it is the sixth leading cause of death in the United States.
The enormity of Alzheimer's disease symptoms might come as a shock to many. Despite the rising incidence of Alzheimer's disease, a disparity remains between the scope of this chronic disease and the public's knowledge about it.
Multiple surveys back this up, including a Harris Interactive survey released earlier this year by the Alzheimer's Foundation of America (AFA). It found that two-thirds of caregivers of people with Alzheimer's disease mistakenly interpreted various behaviors as part and parcel of aging, rather than as symptoms of Alzheimer's disease or another dementia.
This lack of awareness is concerning on multiple levels, beginning at the very beginning -- 67 percent said these misconceptions delayed obtaining a diagnosis. This finding underscores the need for steps that can lead to a proper diagnosis of memory problems: memory screenings (free ones are available on National Memory Screening Day on Nov.13), taking advantage of detection of cognitive impairment as part of the new annual wellness physical for Medicare beneficiaries, and openly discussing concerns with a health care professional. Only with a proper, and ideally early, diagnosis of dementia can individuals and their families obtain available medications and interventions to help slow or manage symptoms, undertake long-term care planning, and obtain support services -- and know what to expect.
This epic storm is a case in point. Misconceptions about Alzheimer's disease can not only be a barrier to proper preparedness, they can also make a chaotic situation even more chaotic once families are in the thick of it and afterward. So becoming educated about both cognitive and behavioral symptoms is a key to managing them during a disaster or at any time during progression of the disease. If, as the AFA survey found, caregivers believe their loved one's behaviors are triggered most often by frustration (67 percent), unfamiliar surroundings (43 percent) and a desire to go "home" (37 percent), it's easy to see how these problems can be exacerbated after the person, say, witnesses a storm, is left without power, has daily routines disrupted or, even worse, has to relocate.
So what are common symptoms of Alzheimer's disease? Cognitive symptoms typically include loss of memory, confusion, disorientation, lack of judgment and loss of verbal skills. The most frequent behaviors, exhibited daily to about once a week, are irritability, sundowning or late-day confusion, anxiety and sleeplessness, according to survey respondents. Other behavior symptoms include anger, inappropriate sexual behavior, aggression, personality changes and paranoia and/or suspiciousness.
And how can family caregivers help head them off? In disasters, it's critical to avoid overexposure to the disturbing situation. Try to limit the person from viewing any damage, listening to media reports or overhearing conversations. Also vital, in non-emergencies as well, is ensuring the person has multiple forms of identification, such as an ID bracelet and locator device in case the person becomes lost. Wandering and becoming lost occurs in about 60 percent of cases of dementia and can worsen when someone with dementia is in unfamiliar surroundings.
In the recent survey, caregivers confirmed that one intervention particularly effective in managing behavioral symptoms, and widely suggested to them by health care professionals, is sticking to routines; 53 percent said it has helped "a lot" and 91 percent said it has helped "at least a little." Keeping to the same habits with showering, eating and other activities of daily living can help reduce confusion.
In addition, 81 percent of respondents note other rules of thumb that have helped at least a little in managing symptoms are: speaking slowly and simply, distracting/redirecting the person to positive activities, and providing positive reinforcement/reassurance.
Not only can these methods improve quality of life for diagnosed individuals, family caregivers themselves stand to gain from getting educated about symptoms and their management. Earlier diagnosis, when someone with the disease is still capable of communicating and making wishes known, can relieve some of a family member's overwhelming responsibilities to make decisions for a loved one. Knowing how to manage all types of symptoms may relieve the fatigue, sleeplessness, headaches and other ailments that beset caregivers.
With caregivers having enough to do day in and day out, the last thing they should do is leave themselves open to lamenting, "If I only knew then what I know now."
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