Alzheimer's and The Invisible Siblings

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SATURDAY, DECEMBER 10, 2011

If you’re burdened by a family member who is missing-in-action, what do you do?

By Pamela R. Kelley 

Alzheimer's Reading Room
March, 2011 

Are Alzheimer's Caregivers
the Forgotten?

Buried in the comments to Bob’ s article, In the Bunkhouse, Random Thoughts Edition, and in reference to the growing number of Alzheimer's caregivers (almost 15 million), I noticed this exchange:

Carole: "What I'd really like stats on, are those who have a close relative with Alzheimer's ... and they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible".

Nancy: “ Hear, Hear!!! I totally agree!! If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is another 15 million!!!”

Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned to our mission by those with an equal stake in our loved one’ s care.

Reading the above exchange made me wonder about those invisible siblings and adult children. 

How can they blithely carry on without realizing how important and meaningful a small act in support of the caring mission would be? Then, I began to identify all of the assumptions I made when I formulated the question.

I assumed that they are untroubled by their abdication of support responsibilities. I assumed that they know what to do in support. I assumed that they are capable of empathy, for their afflicted parent as well as for their burdened sibling.

Is it reasonable to assume any of this? 

Why should it matter whether the invisible sibling is troubled by their inaction? Perhaps because we want to believe that eventually their consciences will prod them to action. Perhaps we cling to this hope despite months and years of evidence to the contrary simply because hope is part of the gravitational force that pulls us forward and through every day.

Maybe they don’t know what to do after all. 

The last thing the caregiver needs is another task -- that of educating the absent ones on how to help. No primary caregiver can manufacture compassion and empathy in a person unfamiliar with these states of mind and heart. That Herculean task need not be added to our abundant responsibilities.

Everything we choose signifies something about us. We who have chosen to be the One need only consider the invisible ones to realize that another choice existed,and it’s a choice we rejected.

Spending our emotional capital lamenting the incomprehensible choice made by those who have turned a blind eye or hardened their hearts will only deplete us. We can’t afford that.

When I’m troubled by matters like these, I look for a way to frame an invisible sibling’s behavior that explains it. I’m just looking for some sort of rational context so that I can steel myself against future disappointments.

What can feel punitive usually isn’t intended in that way. Contextualizing it lets me put this burden aside for a while, if I’ m lucky.

If you’re burdened by a family member who is missing-in-action, what do you do? 

How do you keep those feelings from intruding in the positive and caring environment you work so hard at maintaining?

Research Brief: Hippocampal Hyperactivity Tied to Early MCI Atrophy

News Search 

2 December 2011. Dying neurons typically display little activity, but Alzheimer’s disease researchers have puzzled over a strange surge of hippocampal firing in some seniors at the cusp of mental decline. A functional brain imaging study in the November 30 Journal of Neuroscience links this paradoxical hyperactivity with an established marker of neuro-degeneration—atrophy in a network of functionally connected AD brain areas. The correlation showed up not only in older people with mild cognitive impairment, but also in those who seemed cognitively normal. The research, led by Reisa Sperling at Brigham and Women’s Hospital in Boston, suggests that hippocampal hyperactivation in seniors with normal or slightly impaired cognition could be an early sign of AD-related neurodegeneration.

Functional and structural imaging evidence continues to push back the start of Alzheimer’s disease by years, even decades, before memory problems emerge. Just before the steady decline in hippocampal activation that occurs as dementia sets in, this brain region shows a surprising frenzy of activity. With functional magnetic resonance imaging (fMRI), Sperling and others have seen hippocampal hyperactivation in seniors with MCI (Dickerson et al., 2005; Hämäläinen et al., 2007; Kircher et al., 2007;Yassa et al., 2010) or mildly impaired memory (ARF related news story onMiller et al., 2008), people with familial or genetic AD risk (Bondi et al., 2005; Bassett et al., 2006), and even in young adults (ARF related news story on Filippini et al., 2009). Research presented at the recent Society for Neuroscience meeting in Washington, DC, also suggests that brain changes revealed by functional imaging could signal future dementia (seeARF related news story).

Meanwhile, structural MRI studies have identified a network of functionally connected cortical regions that thin out in MCI patients on the wane toward AD dementia (Bakkour et al., 2009; Dickerson et al., 2009), and in some cognitively normal adults (Dickerson et al., 2011). In the current study, first author Deepti Putcha and colleagues wondered if hippocampal hyperactivity correlated with cortical thinning in these AD signature areas.

The researchers used functional and structural MRI to analyze 18 cognitively intact seniors and 16 with “early MCI.” The latter came from a cohort, recruited for the second phase of the Alzheimer’s Disease Neuroimaging Initiative (ADNI), deemed not quite normal but not impaired enough to meet amnestic MCI criteria, Sperling told ARF. Compared to the control group, early MCI participants did worse on the Rey auditory verbal learning task and showed modest deficiencies in Clinical Dementia Rating (CDR) and Mini-Mental State Exam scores. And, consistent with previous work, the early MCI group showed hippocampal hyperactivity relative to controls during the fMRI memory task. The new piece in the present study was the connection to atrophy in AD signature areas shown by structural MRI. “The more the hippocampus showed this paradoxical hyperactivity, the greater the cortical thinning in these functionally connected regions,” Sperling said of the early MCI group. The signature areas included the medial temporal lobe, the angular gyrus, and the inferior temporal gyrus. The association also appeared in the control group, albeit only in a subset of these cortical regions.

“I think this hyperactivity is a harbinger of imminent clinical decline. This study links it to neurodegeneration, not just in the hippocampus but in a distributed network of AD signature regions,” Sperling said. Her findings seem to jibe with recent reports of increased neuronal excitotoxicity (ARF related news story on Palop et al., 2007) and abnormally high calcium influx (ARF related news story) in the hippocampus and associated cortical regions in AD mouse models.

Though she concedes that fMRI is an indirect measure of neuronal activity—“much removed” from the direct recordings done in animal studies—Sperling thinks excitotoxicity could be driving the paradoxical hyperactivity she and others have observed in mildly impaired seniors, and even some who appear normal. “One of the early things that may happen in AD before cells die is that they have this aberrant increase in activity. When they’re firing in an abnormal way, that may be a sign that they are dying,” she said. Longitudinal studies are underway to see if this hypothesis bears out.—Esther Landhuis.

Reference:
Putcha D, Brickhouse M, O’Keefe K, Sullivan C, Rentz D, Marshall G, Dickerson B, Sperling R. Hippocampal Hyperactivation Associated with Cortical Thinning in Alzheimer’s in Non-demented Elderly Adults. J Neurosci. 2011 Nov 30;31(48):17680-17688. Abstract 

The Bupa Health Foundation And Alzheimer’s Australia Have Announce The UK Launch Of A World-First Brain App. The Latest Digital Tool To Help In The Fight Against Dementia.

06 Dec 2011

The Bupa Health Foundation and Alzheimer’s Australia have announced the UK launch of a world-first brain health app, the latest digital tool to help in the fight against dementia.

Based on latest research that links brain health and a reduced risk of dementia, to a healthy heart and cardiovascular system, 'BrainyApp' is the first dementia risk reduction iPhone app designed to help people monitor and improve their brain-heart health.

The new app, which was designed by Alzheimer's Australia and Bupa Health Foundation, has already knocked Facebook off the number one spot in the Australia and New Zealand Top Free Apps list and has clocked up more than 130,000 downloads down under.

Now available to people in the UK, 'BrainyApp' helps users monitor and improve the physical, mental, dietary and social aspects of their lifestyle.

There are currently 750,000 people living with dementia in the UK and this is predicted to rise to over a million by 2021. Delaying the onset of dementia by just five years would reduce deaths directly attributable to dementia by 30,000 a year.

Jeremy Hughes, Chief Executive, Alzheimer's Society, said: "Most people know how to reduce their risk of heart disease, diabetes and stroke but they don't realise that the same healthy lifestyle choices may also lower the risk of developing Alzheimer's diseaseand other kinds of dementia.  The idea is that what is good for the heart is also good for the brain."

'BrainyApp' allows users to take a brain-heart health survey about their diet, exercise patterns and lifestyle. It then provides suggestions and ideas about how to make improvements to each. It also includes all-new brain games, and encourages users to build brain-heart points by staying physically and mentally active, socialising with friends and family, and sharing their progress on Facebook.

One of the brain games - 'Word Tennis' - requires players to unscramble anagrams in order to move a paddle and hit a ball back to their opponent.

Director of dementia care for Bupa Care Services, Dr Graham Stokes, said: "There is evidence to show that keeping the mind exercised can stave off the onset of dementia but 'BrainyApp' highlights that good physical health also has a part to play. Best of all it’s good fun."  

'BrainyApp' is available as a free download for users of iPhone, iPod and iPad devices from the App Store. There are plans to develop an Android version in early 2012.

More information about BrainyApp is available at www.bupa.co.uk/brainy-app.

-ENDS-

About Bupa Group:
Bupa’s purpose is to help people lead longer, healthier, happier lives.

A leading international healthcare group, Bupa offers personal and company health insurance, runs care homes for older people and hospitals, and provides workplace health services, health assessments and chronic disease management services, including health coaching, and home healthcare.

For more information, visit www.bupa.com

About Alzheimer's Society:
One in three people over 65 will die with dementia. Alzheimer’s Society research shows that 750,000 people in the UK have a form of dementia, more than half have Alzheimer's disease. In just ten years a million people will be living with dementia. This will soar to 1.7 million people by 2051. Alzheimer’s Society champions the rights of people living with dementia and the millions of people who care for them.

About Alzheimer's Australia:
Alzheimer's Australia is the charity for people with dementia and their families and their carers. As the peak body, it provides advocacy, support services, education and information.

About the Bupa Health Foundation:
The Bupa Health Foundation helps build a healthier Australian community through its support of important health research, health education and other healthy living programs.

PR Contact
Kevin Mochrie, Bupa Group Press Office, Bupa House, 15-19 Bloomsbury Way, London, WC1A 2BA, +44 (0)207 656 2454, www.bupa.co.uk

It’s Mild Cognitive Impairment. Now What?

November 23, 2011, 12:18 PM

By PAULA SPAN

How would you react to a diagnosis of mild cognitive impairment — memory problems that allow you to continue normal daily activities, but presage an increased likelihood of developing Alzheimer’s disease within a few years?

If a genetics counselor were to sit down with you and a person you’re close to, someone who might become your caregiver when and if you need one, and to explain that within five years roughly half of those given a diagnosis of mild cognitive impairment develop Alzheimer’s — would you sink into depression? Would you change your behavior to try to lower your risk? What if you were told a genetic test for your apolipoprotein E (APOE) status, associated with Alzheimer’s disease, could provide a more specific estimate of your risk?

Mild cognitive impairment is a relatively recent term, first used by a Mayo Clinic team publishing in 1999. It acquired an official diagnostic code, allowing doctors to bill insurers for reimbursement, only a few years ago.

There’s still a lot the experts don’t know. Few studies have followed subjects with M.C.I. beyond five years, for instance. Some never progress to Alzheimer’s, but we don’t know how many. We do know that a lot of people are going to confront this issue in coming years as the population ages. In a recent Mayo Clinic study, 16 percent of almost 2,000 adults ages 70 to 89 in one Minnesota county were found to have mild cognitive impairment.

“We’re trying to understand how people respond to this information,” Scott Roberts, a public health specialist at the University of Michigan, told me in an interview. The university is one of four research sites (along with Harvard University, Howard University and the University of Pennsylvania) that will each follow 45 patients and their partners for a year to measure the effects of health education and genetic testing on those who are told they have M.C.I.

There’s a lot the investigators want to know. “Do people grasp the information we’re trying to give them?” Dr. Roberts asked. Will people at risk start taking vitamin E or doing crossword puzzles, even though there’s no evidence that either will help?

“We’re interested in the psychological adjustment of both the person and the partner,” Dr. Roberts said. “What are the likely benefits and harms of providing this information?”

Benefits? Possibly. “People might want to know in terms of planning for the future,” he suggested. “And in the future, there might be medications for mild cognitive impairment, so APOE could be a marker of whether to treat.”

The researchers may also find plenty of people who don’t want to talk about, hear about or know about where mild cognitive impairment might lead. But this study, called Reveal, is enrolling only patients and caregivers who volunteer — they’re probably already inclined to want more information.

As it happens, a previous study by this research team showed no significant increase in psychological risk when adults whose parents had Alzheimer’s disease received the results of APOE genotyping, compared with a control group of those with similar family history who didn’t learn their results.

“Not to say it’s completely benign, but we didn’t see an elevation in anxiety or depression” in those who learned their test results, Dr. Roberts said. That wasn’t what lots of medical people had expected.

So who knows what other unexpected results Reveal will turn up? Millions of people — patients, families and friends, health care providers — are going to be hearing this diagnosis in coming years. It makes sense to find out.Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

MAKS: Drug-Free Prevention of Dementia Decline

ScienceDaily (Nov. 30, 2011) — There are many different causes of dementia and, although its progression can be fast or slow, it is always degenerative. Symptoms of dementia include confusion, loss of memory, and problems with speech and understanding. It can be upsetting for both the affected person and their relatives and carers. New research published in BioMed Central's open access journal BMC Medicine shows that a regime of behavioral and mental exercises was able to halt the progression of dementia.

Researchers led by Prof. Graessel, from Friedrich-Alexander-Universität Erlangen, included in their study patients with dementia from five nursing homes in Bavaria. After random selection, half the patients were included on the year-long MAKS 'intervention' consisting of two hours of group therapy, six days a week. In addition all patients maintained their normal treatment and regular activities provided by the nursing home.

The MAKS system consists of motor stimulation(M), including games such as bowling, croquet, and balancing exercises; cognitive stimulation (K), in the form of individual and group puzzles; and practicing 'daily living' activities (A), including preparing snacks, gardening and crafts. The therapy session began with a ten minute introduction, which the researchers termed a 'spiritual element' (S), where the participants discussed topics like 'happiness', or sang a song or hymn.

After 12 months of therapy the MAKS group maintained their level on the Alzheimer's Disease Assessment Scale (ADAS) and, even more importantly maintained their ability to carry out activities of daily living, while the control group all showed a decrease in cognitive and functional ability.

Prof. Graessel explained, "While we observed a better result for patients with mild to moderate dementia, the result of MAKS therapy on ADAS (cognitive function) was at least as good as treatment with cholinesterase inhibitors. Additionally we found that the effect on the patients' ability to perform daily living tasks (as measured by the Erlanger Test of Daily Living (E-ADL)) was twice as high as achieved by medication. This means that MAKS therapy is able to extend the quality of, and participation in, life for people with dementia within a nursing home environment. We are currently in the process of extending these preliminary results to see if this prevention of dementia decline can be maintained over a longer time period."

The Alzheimer's Generation: What We've Learned in 30 Years

Posted: 12/ 2/11 08:18 AM ET

In the early 1980s, most people with Alzheimer's disease would have simply been labeled as "senile." Spouses and adult children would take on the responsibility of providing care until it was time for a nursing home, where they received care in an institutional setting.

Since then, there have been remarkable strides forward in the diagnosis, understanding and care for those with Alzheimer's disease and other forms of memory loss. Reflecting on the progress we've made in the last 30 years helps us to prioritize new advances in the decades ahead.

Diagnosis, Treatment and Education

Every 69 seconds, someone develops Alzheimer's disease and one out of every eight seniors over the age of 65 has the disease. Yet 30 years ago, no one knew its name. If you search the New York Times archives from 1850 through 1977 for "Alzheimer's disease," only one story refers to the disease, although it was first diagnosed back in 1907.

The Alzheimer's Association, whose resources are invaluable to so many today, was not even founded until 1980, and it was not until 1982 that Ronald Reagan declared an official "Alzheimer's Awareness" week. Many people regarded the symptoms of confusion and memory loss as just a reality of getting older. The result was that little attention was given to treatment, diagnosis, and more importantly, care and caregivers.

While a definitive cure for Alzheimer's is still elusive, there are five FDA-approved drug treatments that help relieve the symptoms of the disease. These have all been developed in the past few decades and there are numerous new therapies in the research pipeline.

Care Settings

Prior to the 1970s, resources and services for people with memory loss were virtually non-existent, and care was given either at home or in nursing homes. Fortunately, a major shift occurred in the 1980s when the institutionalized medical model of care provided in nursing homes transitioned to the resident-centered social model provided in assisted living communities.

It was during this period in time that assisted living pioneers Paul and Terry Klaassen, founders of Sunrise Senior Living, designed the type of care and services that would always put the resident first, whether or not they have memory loss. This approach not only champions quality of life, but also honors the residents' wishes and promotes identity, independence and dignity.

As the assisted living industry grew, dedicated wings or free-standing buildings were built specially for residents with memory impairment. These homelike neighborhoods provided a secure, non-restricting environment and promoted a sense of community. Architects then began to focus on the design elements which give residents with memory loss a sense of orientation through built-in environmental cues that helped them find their way and reduce feelings of insecurity. Design innovations included automatic sensor lights and contrasting colors in bathrooms, tableware designed to be bright and contrasting -- all of which further promote dignity and independence.

By the early 2000s, a few assisted living companies identified a need for specialized programs and services specifically designed for residents with Mild Cognitive Impairment (MCI) or early stages of Alzheimer's disease. These programs were designed to assist seniors with early signs of memory loss to engage in activities that promote cognitive stimulation, social engagement, mutual support and stress reduction with a goal of delaying memory loss. Not until recently did studies suggest that lifelong learning, mental and physical exercise, continuing social engagement, stress reduction and proper nutrition may be important factors in promoting cognitive vitality.

Care Provision

Thirty years ago, there was little consensus about how best to help those who were disoriented and seemed to live in a different time and place because of Alzheimer's or other forms of memory loss.

That changed in 1982, when internationally renowned social worker Naomi Feil published her seminal work, "Validation: The Feil Method, "which introduced caregivers to an empathetic way of communicating with disoriented seniors. Today, thousands of professional caregivers are trained to use validation techniques, through which they are able to tune into the inner reality of the person with dementia. This method helps build trust and restore the person's dignity.

Activities in memory care have also transitioned away from the large group, one-size-fits-all approach to more intimate small groups that focus on shared interests and promoting a sense of purpose and belonging. Most care also now centers around social engagement with well-designed activities to increase quality of life.

The Future

As progressive as the last 30 years has been to improve care for those with Alzheimer's and other forms of memory loss, the future looks even more promising, especially in the area of technology.

The safety-oriented devices such as motion sensor alerting and GPS shoes will continue to proliferate and enable greater independence. Scientists are also testing brain imaging tools and blood tests that may allow for earlier interventions. Computer-based brain fitness products and remote communication with family members are also promising to flourish and help keep those with memory loss connected socially.

Everyone is hopeful that this generation will be the one where a cure is found. While the search continues, there will be even more emphasis on prevention and controlling contributing risk factors. Until then, one of the most important advances we can make is to continue educating, training and supporting everyone who is touched by Alzheimer's disease and other forms of memory loss.

Follow Rita Altman, R.N. on Twitter: www.twitter.com/sunrisesrliving