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How To Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away’

Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most — more than cancer, stroke or heart disease.

The rhetoric surrounding Alzheimer’s reflects this. 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. It finds 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.

They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.

“Do our abilities change? Yes. But inside we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.

Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way: “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”

“I’ve learned something from this,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’

“But I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”

The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.

“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.

Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.

Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:

Focus On Health

One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.

Those discussions emphasized the importance of physical health: 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. Cognitive health was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.

Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.

Foster Social Connections

Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.

But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.

“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.

Adapt Communication

Not knowing how to communicate with someone with dementia is a common problem.

Laura Gitlin, a dementia researcher and director of The Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: 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.

Also, understand that people with dementia perceive things differently.

“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”

Address Unmet Needs

Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.

Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet, 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).

Respect Autonomy And Individuality

Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this “being seen as a whole person, not as my disease.”

At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.

In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.

None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that “improved quality of life should be a primary outcome of all dementia treatments.”

By Judith Graham | California Healthline. This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Make New Friends But Keep the Old

One is silver and the other gold

The old Girl Scout song may be more true than you knew as recent research has shown that a variety of social isolation elements may “pose health risks, including living alone, having a small social network, infrequent participation in social activities, and feelings of loneliness” for adults, particularly older adults.

Luckily, there are some simple solutions that may have immediate health benefits, such as spending time with family and friends as well as making new friends. A New York Times headline event went so far as to claim, “Study Shows The More You Hang Out With Your Mom, The Longer She’ll Live – Make sure you call grandma over for dinner tonight.”

According to the NYT article, University of California, San Francisco researchers discovered that loneliness is a factor in the decline that often associated with old age. Controlling for socioeconomic status and health, the study followed 1,600 adults (with an average age of 71) and found the lonely consistently had higher mortality rates. In fact, “nearly 23 percent of lonely participants died within six years of the study, as opposed to only 14 percent of those that reported adequate companionship.”

The need to have people who know and value us never goes away and as we age, we tend to be more tolerant of our friends’ imperfections and idiosyncrasies. The rashness of a hotheaded youth often mellows as the years go by, bringing awareness of what’s worth fighting (or not) over. That patience and experience may carry over when spending quality time with their grandchildren, though the symbiotic relationship benefits everyone. The parents can take a bit of a break from the daily demands from their kids, the grandparents receive companionship, conversation and a sense of value, while the children can to learn about their family history, hear stories and share secrets while everyone feels the love. If you live close enough to visit your aging parents or relatives regularly, so much the better for everyone.

But, if you don’t live near your parents or if they are no longer able to live independently, there are still options. Encourage your elderly loved ones to reach out to older friends or make new ones. Help them form new relationships within an independent or assisted living facility if that is where they are currently residing. Despite popular beliefs, these types of living arrangements can provide more than physical assistance; they offer new ways to mingle and to connect, combating loneliness and possibly prolonging life.

If the time has come when your aging loved one is no longer able to live independently, please contact the knowledgeable staff at ElderLink. We will help you find elder care services or an assisted living facility within California that is personalized for your family.

Holiday Scams Target Elderly

You answer the phone and an unfamiliar voice with a scary message urges you to take urgent action to prevent something terrible from happening – your grandchild is in trouble, you owe back taxes or your computer has been hacked. But, you can make it all go away if you just purchase an iTunes gift card (or Amazon gift card) via online or in a store and then once the card has been activated, provide the 16-digit code on the back of iTunes cards via phone, email or text message to the caller/con artist. Often multiple gift cards may be “required” by the caller, equaling hundreds, or even thousands, of dollars.

For a holiday twist on the “grandparent scam,” the caller pretends to be their grandchild who is in trouble and needs help (money) to come home for the holidays. The caller will plead for secrecy, claiming to be embarrassed or not wanting to get in further trouble with his/her parents. This seasonal adaptation is in place of request for money so the caller (“grandchild”) can avoid jail, come home from a foreign trip or to get their car repaired.

These types of scams can also occur via email, text or even regular mail and as a loving grandparent and concerned citizen, you want to do the right thing. But in these cases, the right thing is to recognize these types of calls are scams and you should report them to the Federal Trade Commission (FTC).

Phone scams are nothing new, nor are playing on the sympathies of older adults. Creating a sense of urgency and panic are tools of the trade for scammers. What is new is taking advantage of senior citizens’ lack of knowledge about how digital gift cards actually work. For example, it is likely that a grandparent has purchased gift cards, including iTunes and Amazon cards for their grandchildren, but are unlikely to be aware that such gift cards can only be used to purchase items from the issuing merchandiser (such as iTunes or Amazon). Like prepaid debit cards, iTunes and Amazon gift cards are a simple and practically untraceable method for con artists to get money, or for their victims to get those funds back.

According to the FTC, as soon as money has been put on a card and code has been shared, the money’s gone for good. Almost immediately, the card’s value will be drained, traded or sold on the black market. Unfortunately, the victim will not only have lost those funds, they are likely to be become a target for even more frauds.

Being able to convert these types of gift cards to the equivalent of cash as resulted in a recent uptick in popularity in scams and should be a tip-off of fraud. Apple, the parent company of iTunes, issued a warning on their website, “iTunes Gift Cards are solely for the purchase of goods and services on the iTunes Store and App Store. Should you receive a request for payment using iTunes Gift Cards outside of iTunes and the App Store please report it at ftc.gov/complaint.”

Other scammer-preferred payment demands also include reloadable cards, such as MoneyPak, Reloadit or Vanilla; PayPal and wire transfers like Western Union and MoneyGram but according to AARP, the FTC states that, “no government agency nor any but a handful of businesses require any of these payment methods.”

To find out about other scams, particularly those targeting the elderly, as well as discover tips and resources to help spot and avoid identity theft and fraud, consider signing up for AARP Fraud Watch Network. You can also track scams and law enforcement alerts in your area on the AARP Scam-Tracking Map.

Key Takeaways

  • Do not trust any caller who asks for money but insists on secrecy, including a government agency or a non-profit organization. If you do not recognize the voice or are unsure who the caller is, ask for more information so you can verify what you have been told. No one should ever discourage you from seeking support and counsel from family members, friends or trusted advisers, especially before making any financial transaction.
  • No government agency, including the IRS, will require you to use a specific payment method, such as a prepaid debit card, nor will they threaten you with arrest for not paying.

If the time has come when your aging loved one is no longer able to live independently, please contact the knowledgeable staff at ElderLink to help you find elder care services or an assisted living facility within California that is customized for your family.

California Neurologist Develops New Protocol to Fight Alzheimer’s Disease

Cognitive impairment, which is most commonly diagnosed as dementia or Alzheimer’s disease, affects millions of people around the world, with Alzheimer’s currently affecting approximately 5.4 million Americans and 30 million people globally. Reportedly, 75 million Americans have ApoE4, a key genetic risk factor for Alzheimer’s disease. According to UCLA Newsroom, there could be more than 160 million people with Alzheimer’s disease globally by 2050, including 13 million Americans, without effective prevention and treatment. Alzheimer’s is on the rise and recent estimates suggest that it has become the third leading cause of death in the U.S. behind cardiovascular disease and cancer.

Though those statistics are daunting, a California neurologist, Dr. Dale Bredesen, has been developing a new protocol to fight Alzheimer’s disease and it has been receiving international attention for its results so far. A professor at the Buck Institute and professor at the Easton Laboratories for Neurodegenerative Disease Research at UCLA, Dr. Bredesen believes Alzheimer’s is caused by dozens of imbalances in the body and has been working to create a protocol designed to address these imbalances.

Dr. Bredesen told Today  that his protocol only works for patients in the early stages of the disease and is not a cure. Elements of his daily protocol include:

  • A Mediterranean diet high in vegetables and good fats
  • Cardio exercise
  • Fasting for at least 12 hours after dinner
  • Brain training exercises
  • At least 8 hours of sleep
  • A personalized regimen of supplements that address each patient’s deficiencies

The results of Dr. Bredesen’s protocol were published in the June 16, 2016 issue of ScienceDaily, “pre and post testing show reversal of memory loss from Alzheimer’s disease in 10 patients: Small trial succeeds using systems approach to memory disorders.” A joint effort from the Buck Institute for Research on Aging and the UCLA Easton Laboratories for Neurodegenerative Disease Research, ScienceDaily says the study is “the first to objectively show that memory loss in patients can be reversed, and improvement sustained, using a complex, 36-point therapeutic personalized program that involves comprehensive changes in diet, brain stimulation, exercise, optimization of sleep, specific pharmaceuticals and vitamins, and multiple additional steps that affect brain chemistry.”

According to the study’s author, Dr. Bredesen, “all of these patients had either well-defined mild cognitive impairment (MCI), subjective cognitive impairment (SCI) or had been diagnosed with AD before beginning the program. Follow up testing showed some of the patients going from abnormal to normal.”

While improvement demonstrated by the ten patients is unprecedented, Dr. Bredesen acknowledged it was very small study that needs to be replicated in larger numbers at various sites and he has reportedly partnered with the Cleveland Clinic for a larger clinical trial of his program.

For an overview of this groundbreaking research, watch the Today show report below. To learn more about Alzheimer’s disease and caregiving, please visit Alzheimer’s Association  or to find out more about Dr. Bredesen’s program and how you might be eligible to participate, visit MPI Cognition.

If the time has come when your aging loved one is no longer able to live independently, please contact the knowledgeable staff at ElderLink  to help you find elder care services or an assisted living facility within California that is personalized for your family.

 

Seniors Who Live Alone Likeliest To Rate Their Health Highly, Study Says

People over 65 who live alone were more likely to describe their health as excellent or very good than were seniors who live with others, according to a study exploring connections between older Americans’ health status and their living arrangements.

Conversely, older people living with others — whether related or unrelated to them — were significantly less likely to call their health as excellent or very good, researchers reported recently in the Journal of Applied Gerontology.

That may be because when seniors encounter serious health problems and mounting physical difficulties, they often stop living by themselves and choose to live with others for support, they speculated.

But the researchers said they drew no conclusions about whether keeping a solitary household in old age leads to a longer life.

In fact, living alone wasn’t superior in every way for people over 65, according to the study. Those who share a home with a spouse or partner were less likely to report serious psychological distress than were older people without companions, a finding that meshes with prior research.

“Their physical health was better living alone rather than with a spouse or partner, but the mental health from living alone was worse,” said Judith D. Weissman, the study’s lead author. She is an epidemiologist and research manager in the Department of Medicine at the New York University School of Medicine.

Mental health affects physical health and that’s why older adults’ psychological wellbeing deserves more attention, she said.

“From a policy standpoint, it indicates we may have to provide either emotional or mental support for seniors living alone,” Weissman said.

The study was based on data for 41,603 adults 65 and older collected in six years of federal surveys. Researchers studied people living alone, with a spouse or partner, with others related or unrelated, or living only with children.

Researchers also discovered the relationship between living arrangements and health differed for men and women.

For instance, older men living alone were less likely to report having two or more chronic health conditions — such as cancer or diabetes — than counterparts in households with spouses or partners. They were also less likely to report their health as fair or poor.

The opposite was true for women on both counts: Those on their own were more likely to report multiple health conditions than the ones with spouses or partners. Yet, they were also more likely to describe their health as excellent or very good.

“This apparent paradox may be difficult to untangle due to the varied life experiences that lead women to live alone,” researchers said.

For example, they said, older women are more likely to be widowed and after becoming widows, they tend to live alone.

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation. This KHN story can be republished for free (details).