Before getting to how holidays can be highly stressful for both Alzheimer’s patients and their caregivers, I’d like to report that I recently came across a reference to a new procedure that allows physicians to examine patients for signs of development of the clots of growth in the brain that herald the early stages of the disease. Heretofore, the only way to decide for certain if one had Alzheimer’s was to wait for death to perform an autopsy. With the new procedure, physicians can advise patients of the growing problem and allow them to make decisions about the future before the disease makes such thinking difficult. As soon as I find out more about all this I’ll update readers. Holidays can be stressful to patients and caretakers alike, as such times can trigger memories of past times, or sometimes distress patients due to their inability to recognize family members, typically at Thanksgiving and Christmas when families tend to regroup to celebrate the past. All involved need to be sensitive to the patient’s needs at such gatherings. In the meantime, I’ll add some advice for caretakers I picked up at an Retired Senior Volunteer Program where Dori Ward of the Northern Nevada Alzheimer’s Association spoke to a gathering of RSVP volunteers. Ward reviewed the definition of dementia, which is not a specific disease but rather an umbrella term including such as Alzheimer’s, Parkinson’s (where hands or legs twitch abnormally), vascular dementia, Lewy body diseases and frontal-temporal dementia. As usual, she pointed out that “70 percent of dementia sufferers are Alzheimer’s victims.” Dementia, she said, is a syndrome that described “a group of symptoms which can be reversible or progressive. It is not part of the normal aging process.” Irreversible forms include Alzheimer’s, Lewy, Frontal, Vascular and alcohol-related. Potentially reversible symptoms include depression, metabolic problems, adverse medical reactions, infections, brain tumors, sensory loss and nutritional needs. Caretakers for those suffering from Alzheimer’s need to recognize that it is a progressive, degenerative neurological disease with changing symptoms. The victim will go through phases of decline and require caretakers to be flexible. Changes include memory loss, language and communication problems, decision functions, visual-spatial perception hang-up and behavior changes, such as seeking to wander off. It’s important for caretakers to understand how it feels to suffer from Alzheimer’s disease. “Confusion is common,” explained Ward. “It is the central problem in dementia and creates emotional or behavioral problems. Ability to think clearly to keep confusion at bay dwindles and evokes feelings and needs that the patient cannot meet.” The patient suffers terror of being out of control; it’s powerfully scary and the patient becomes protective; confusion strikes without warning. “Effective communication between patient and caregiver becomes important in prevention and reduction of the illness’s symptoms,” Ward said, adding some aspects of effective communication include an understanding by caregivers of what is and what isn’t possible to change; an awareness by caregivers of how their thoughts and actions impact the behavior of the patient; and the importance of remaining connected with patients.Common challenges of communication include finding the right words or misuse of familiar words, word repetition, comprehension difficulties and the patient’s limited attention span and losing the chair of thought. Time difference is also a problem. The time differential between patient and caregiver can make five hours feel like five minutes. Problems with communication can lead to frustration for both parties, anger, embarrassment, withdrawal by the patient and simple silence. Ward says caretakers need to be active listeners, to “stop talking and listen,” to express interest in what the patient is saying, maintaining eye contact to show that they care, be careful not to interrupt, and to “focus on feelings, not the facts, and to always be cheerful and reassuring.” It’s important to establish eye contact before speaking, “to approach from the front, identifying yourself and address the patient by name. To speak slowly and clearly using short, simple questions and be ready to repeat as necessary,” she said. Ward also offered these simple bits of advice: Avoid overly bright or dark settings to ensure that the patient can see you easily; think ahead about what you are going to say; ask one question at a time and be prepared to repeat it; and keep facial expressions positive and friendly. There’s still more on dealing with a loved one as a caretaker or when just offering respite care under RSVP direction. More next time. * Sam Bauman writes about senior affairs, among other things, for the Nevada Appeal.
