It’s the Illness We Fear the Most – and in Many Ways Understand the Least
What is the one illness we tend to be most afraid of – the one we fear more than cancer, stroke or heart disease? The answer probably does not come as a surprise: it’s Alzheimer’s disease. But this fascinating article we recently discovered on the website of Kaiser Health News sheds new light on this feared disease and provides extremely valuable insight into how some relatively simple steps can dramatically improve the quality of life for a loved one with dementia. We highly recommend this insightful article, which was written by Kaiser contributing columnist Judith Graham.
In Graham’s words, all the language we use to describe Alzheimer’s reflects our deep fears and fundamental misunderstanding. She writes, “People ‘fade away’and are tragically ‘robbed of their identities’ as this incurable condition progresses, we’re told time and again. Yet, a sizable body of research suggests this Alzheimer’s narrative is mistaken.” The surprising truth is that “people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages.” This has profound implications for how we interact with and care for loved ones who have dementia.
Far from being isolated inside a cocoon of mental incapacity, those with Alzheimer’s still retain a significant part of their personalities, at least until the disease reaches later stages. “They appreciate relationships,” writes Graham. “They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.” The clear lesson is that it’s possible for loved ones and professional caregivers to actively promote engagement and well-being among those with dementia even in the face of memory loss, cognitive impairment, and other symptoms of these complex diseases.
The Kaiser article acknowledges that late-stage dementia is enormously difficult for everyone concerned. For caregivers, the challenges are compounded by the fact that they typically receive little support, financially or otherwise, and often have to deal with a loved one’s decline virtually by themselves. Nevertheless, as bad as late-stage Alzheimer’s disease can be, Kaiser’s Graham says that about 80 percent of those with dementia are in mild to moderate stages of the illness, and there is much that a caregiver can do for someone with less severe degrees of dementia to improve the patient’s quality of life significantly. The Kaiser article lists five specific areas in which creative, empathetic care can make a major difference for someone you love. Let’s take a brief look at each one.
First, focus on health. Don’t assume that someone with dementia is unaware of their physical health and well-being. The Kaiser article says this means “being free from pain, well-fed, physically active and well-groomed, having continence needs met, being equipped with glasses and hearing aids and not being overmedicated.” Those with mild to moderate dementia also said they wanted some form of cognitive rehabilitation to help them compensate for their memory loss. Caregivers should also note that up to 40 percent of people with Alzheimer’s disease suffer from significant depression, so if someone appears sad and apathetic, treatment of their depression is probably called for.
Next, foster social connections. One of the tragic side effects of dementia is that it can destroy social relationships because of fear, discomfort and misunderstanding, says Kaiser’s Graham. She quotes one Alzheimer’s expert who says, “The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them.” This is a basic social need that just about any one of us has the power to help meet.
Third, you may need to change your communication style. This can go hand in hand with the need to socialize, because, as Graham says, “Not knowing how to communicate with someone with dementia is a common problem.” Experts at Johns Hopkins School of Nursing suggest that caregivers should “speak slowly, simply and calmly, make one or two points at a time, allow someone sufficient time to respond, avoid the use of negative words, don’t argue, eliminate noise and distraction, make eye contact but don’t stare, and express affection by smiling, holding hands or giving a hug.” Sounds like great advice to us!
Fourth, address some of your loved one’s unmet needs. These needs include some very real physical and environmental dangers and other pitfalls that often get overlooked for dementia patients. For examples, researchers report that a large majority of people with dementia are at risk of falling. Almost two-thirds were shown to have unmet health concerns. About half of dementia patients studied needed greater involvement in meaningful activities, and a significant number were living in unsafe surroundings not well suited to someone with reduced mental capacity. We need to pay closer attention to the conditions in which our loved ones with dementia are living and look beyond the surface.
Finally, respect your loved one’s autonomy and individuality. Your loved one is not simply his or her disease, experts emphasize – he or she is a whole person. In various Alzheimer’s focus groups, people with the illness said they longed to be “listened to, valued and given choices that allowed them to express themselves” and also “to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.” Many research studies have corroborated this desire on the part of those with dementia “to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.”
None of this is easy, as you know all too well if you are a caregiver for someone with dementia. Remember, you are likely to be their number one advocate and most significant source of strength, and your top priority may be to help your loved one see that he or she is not going through this journey alone. As we say at AgingOptions, aging is a family affair, and nowhere is that more true than when dealing with the effects of dementia.
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(originally reported at www.khn.org)