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People with Dementia Still Retain Sense of Self and Have a Positive Quality of Life, Research Reveals

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What is the one illness Americans are 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 discovered last year on the website of Kaiser Health News provided a much different perspective on this feared disease and offered extremely valuable insight into how some relatively simple steps can dramatically improve the quality of life for a loved one with dementia. We wanted to revisit insightful article, which was written by Kaiser contributing columnist Judith Graham, because the topic is so relevant today.

A Fundamental Misunderstanding

In Graham’s words, the language we use to describe Alzheimer’s reflects our deep fears and fundamental misunderstanding. She wrote, “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,” Graham said. “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.

Five Ways to Make a Difference

The Kaiser article acknowledged 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, about 80 percent of those with dementia are in the mild to moderate stages of the illness, and there is much that a caregiver can do for someone in those stages of dementia to improve the patient’s quality of life significantly.  The Kaiser article listed five specific areas in which creative, empathetic care can make a major difference for someone you love, so let’s review them here.

First, focus on health. Don’t assume that someone with dementia is unaware of their physical health and well-being. In the words of the Kaiser article, 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 note that up to 40 percent of people with Alzheimer’s disease suffer from significant depression, so if someone you love appears chronically 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, said Kaiser’s Graham. She quoted 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 said, “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.

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, and almost two-thirds were shown to have other 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.”

Number One Advocate

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 truer than when dealing with the effects of dementia.

Of course, the most important thing all of us need to remember as we age is that we need a solid plan for the future if we’re going to have the type of retirement we’ve always hoped for. Like most people, we’re certain you want to protect your assets in retirement. You don’t want to be forced into institutional care against your will, and you don’t want to become a burden to those you love. Is there a way to plan ahead so that your wishes will be fulfilled? Fortunately, the answer is a confident “yes.” We call our unique concept for retirement planning “LifePlanning.” LifePlanning is uniquely comprehensive because it takes into account all the critical aspects of your retirement future – your financial security, your legal affairs, your housing choices, your medical needs and your family support. A LifePlan is your blueprint to help you build the retirement of your dreams.

It’s easy to learn more, so we invite you to invest just a few hours and attend one of our free LifePlanning Seminars. You’ll find a list of current seminar dates and locations here. Once you’ve made your choice of locations, you can register online or contact us for further details and assistance. It will be our pleasure to meet you and to help guide you into a more secure and fruitful future.

(originally reported at

Photo source: flickr. This photo is licensed under the Creative Commons Attribution 2.0 Generic license.

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