Sign of the times: social media’s use in increasing interaction among patients with dementia. A researcher, part of a team, is busy at work on a web-based app based upon Facebook for utilization among cognitively impaired elders. She states:

“We have already carried out some practical testing of other web-based communications systems. Among other things, we have tested a “digital diary” and a “scrapbook” containing personal photos, newspaper cuttings and information found online.”

What is both curious and puzzling at the same time regarding this research is that it is being conducted in Norway, of all places. Why not here in the good ol’ U.S. of A? Innovation of this type began and germinated here. Social media’s global function of “keeping one in the loop”, including the elderly, can not be understated in its potential in non-pharmacologic dementia research. Here’s to hoping it gains ground on these shores.

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Alzheimer dementia continues to be among the most heavily researched and funded chronic diseases in medical science today. The increased awareness, brought into the spotlight and “modernized” more than 20 years ago following the high profile revelations of celebrites and politicians afflicted with the disorder, has led to increased patient education, public policy initiatives, and, of course, greater research monies in the effort to not only treat symptoms, but also to find a cure.

An international advocacy group is now asking municipalities to take awareness a notch higher with the commitment to even greater awareness of the disorder — addressing what it calls a “treatment gap”, hampering any gains on detection of the disorder at its earlier stages. Here in the U.S., the Obama admin is apparently hard at work in developing the country’s first-ever national anti-Alzheimer strategy aimed at sharply cutting the enormous healthcare costs associated with ancillary treatment .

The National Alzheimer’s Project: From Act to Action is an effort to support a committed and effective implementation of the National Alzheimer’s Project Act (NAPA). Information collected from individuals living with the disease, caregivers, providers and other stakeholders will be shared with the U.S. Department of Health and Human Services, which is responsible for creating a national strategy to address the crisis and coordinate across government agencies. This project is facilitated and supported by the Alzheimer’s Association.

Consider this effort an amalgam of citizen awareness and discussion (townhalls) and legislation (congressional passage of the National Alzheimer Project Act) garnering bipartisan^[1] support to fight a scourge that can leave heavy financial tolls on caregivers, families, and the healthcare delivery system itself.^[2] A daunting task, to be sure — but one that is sorely needed. Here’s looking forward to December — the date when the president makes his plans for these initiatives very public. | LINK

1. Just how bipartisan? In 2007, Newt Gingrich co-authored an article in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association, making the case for the creation of a federal Alzheimer strategy.
2. Alzheimer’s Association advocates sent more than 15,000 email messages to the White House asking the President to sign the National Alzheimer’s Project Act into law; on 1/4/11, he did — making this action the most significant legislative action with respect to Alzheimer funding intiatives up to this point.

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Many physicians, including myself, who see a majority of elderly patients are always interested in ways we can educate patients and concerned family members of the wide spectrum of clinical presentations of cognitive decline. For many Boomers who are now just turning 65 (as the first and oldest cohort does this very year) the specter of that “senior moment” possibly belying something more ominous and progressive is a little more than just an afterthought that can be dismissed. When the moment came for a discussion with the patient and the family over the concern of cognitive impairment, it was always a delicate balance with respect to validating patient concerns with the real world possibility of subclinical disease.

New diagnostic indicators and guidelines for primary care providers and their patients as recommended and formulated by the National Institute on Aging are out to demystify the process, while making research more goal focused, tangible, and accessible with respect to discovering therapies that can actually reverse progressive dementia.

While laudable in these efforts, the three-stage set of guidelines for diagnosis and treatment insertion offered by the NIA and Alzheimer Association is just the beginning. It certainly complements what we geriatricians have been doing quite adeptly for a couple of decades now — informing and educating patients and their families while squelching myths that could delay or, worse, prevent treatment from ever occurring. Of course, the ability for researchers to recruit the most appropriate patients for targeted clinical trials doesn’t hurt, either.

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Remember the “death panels” the GOP and other right-wing pundits used to describe special provisions in the healthcare reform bill (before it became law) that would allow Medicare to cover counseling services as part of end-of-life cares for patients?^[1] After conservative and Tea Party outrage sent Obama and his handlers into PR regrouping on the issue, it appears to be more than a drawing-board idea at this point.

It was widely reported yesterday that these end-of-life services will be covered under Medicare as part of reform. Under the rule, Medicare will cover visits with doctors to discuss how to prepare an advance directive, stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves. This runs counter to concerns on the right that the provision would give government the power to decide whether seniors and the disabled were worthy of care at all at the end of life.

It’s about time the crafters of the reform include such a provision in the care of beneficiaries. Discussion of advance directives is not only a necessary component of care planning for the elderly, but for all patients ant any stage of life, regardless of health status. The ability for a patient to have his or her wishes prior to an event is of paramount importance. Advance care planning allows a person to make his or her wishes and care preferences known before being faced with a medical crisis.

The rule goes into effect on 1/1/11, as physicians will begin advising patients voluntarily about their preferences for end-of-life care treatment during their annual Medicare well visit. | LINK

1. The claim began on former Alaska Gov. Sarah Palin’s Facebook page, but it was quickly picked up by other GOP luminaries.

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Nobody said that it would be cheap. The Alzheimer Disease International (ADI) report projects worldwide costs of over $600 for 2010. It’s no coincidence that this news comes out today — on World Alzheimer’s Day. The ADI report combines the most recent global data on disease prevalence and research. ADI predicts that as populations age, dementia cases will almost double every 20 years to around 66 million in 2030 and 115 million in 2050 — much of the rise from disease incidence in poorer nations.

On these shores, it is known only too well that the costs of treating the symptoms, developing drugs to reverse the disease process itself, covering ancillary costs associated with caregiving, and the constant research in the race for a cure will add to the burden President Obama’s healthcare initiatives must overcome in the next 10 years. The main advocacy organization in the U.S. isn’t waiting; it has already begun pushing for the funding and implementation of a national “dementia plan”. | LINK [PDF]

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Pharma company Eli Lilly recently scrapped further development of an anti-Alzheimer drug designed to fight the disease from the plaque mechanism; its compound would inhibit the enzyme responsible for catalyzing the process in forming the amyloid plaques pathognomonic for the disorder.

Their reasoning? That the enzyme also works on the formation of other proteins in the brain that have no consequence in the natural histopathological history of the disease. Scientists working on the R&D for this drug have also gone as far as to question this hypothesis as a valid point of research into anti-Alzheimer development. The implications of these second thoughts have yet to be fully realized, but there could be an immediate effect on other Pharma companies researching similar treatments for degenerative dementia should they decide to follow like concerns. | LINK

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As Doctor Pundit has always reported in this space, the driver of current Alzheimer disease research has been via biomarkers — the naturally occurring by-products (in this case, abnormal proteins found as the disorder shows initial symptoms and develops) of the body’s normal physiological processes in any organ system. In this case, the system studied is the body’s omniscient powerhouse, the central nervous system. The latest game-changing news is what can be gleaned via the cerebrospinal fluid obtained from within the spinal cord.

Researchers report that a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease. [...] A lot of work lies ahead, researchers say — making sure the tests are reliable if they are used in doctors’ offices, making sure the research findings hold up in real-life situations, getting doctors and patients comfortable with the notion of spinal taps, the method used to get spinal fluid.

The invasive nature of the spinal tap is a barrier, but the overarching point here is that biomarker research is gaining ground and setting the stage for extremely targeted therapies. All of this talk — even in the past 2 to 3 years — has largely been conjecture. At least until now. Exciting news. | LINK

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Research into better treatments and possible cures of Alzheimer dementia is one of the bright spots in the potential for better healthcare delivery in the decade of the 2010s. There are many signs that bode well for the approach to this disorder at the dawn of the second decade of the 21st century.

New research into alternate pathways of disease development is starting to generate excitement among primary care physicians and geriatricians (such as myself) as potential arenas for new classes of drugs to combat Alzheimer’s. Better care delivery models in long term care of the elderly as part of new initiatives in the Affordable Care Act are already starting to impact chronic disease care management strategies.

Perhaps most important, there is new evidence to suggest that earlier detection of this cognitive disorder can enhance those developments, and more. At an annual meeting of top dementia researchers, guidelines were proposed to expand on the research from the ’00s to diagnose the disorder earlier — a strategy that benefits more than just those potentially afflicted with Alzheimer’s.

If the guidelines are adopted in the fall, as expected, some experts predict a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease.

Heavier use of newly discovered biomarkers for earlier detection of the pathology behind Alzheimer dementia will be a closely watched process by both physicians and health policy analysts alike. | LINK

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Although the prevalence rate of dementia is higher overall in women over 65; this is due to a variety of factors — overall elderly age demographic prevalence, hormonal declines (circulating estrogens), and the presence of certain vascular related disorders, just to name a few. But what about the incidence of dementia in a male spouse as an association for the incidence of dementia in females — both of whom had no signs of the disorder initially?

A trial published in the latest Journal of the American Geriatrics Society shows that over 1000 patients (married couples in a single Utah county) were followed for a period of at least 12 years^[1]. Initially without the diagnosis of Alzheimer dementia, those caregiving wives developed dementia along with their husbands in 30 cases. Although the study did not specifically examine wives as caregivers using explicit criteria, most lived in the same space as the male spouse at the time of diagnosis. An interesting result that should spur more study in the gerontological (social scientific) realm of dementia treatment and incidence in the community. | LINK

1. All married couples were dementia-free at baseline in 1995 and were followed-up for an average of 12.6 years (median follow-up, 3.3 years) to monitor for incident dementia in husbands, wives, or both, according toDiagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised, diagnostic criteria.

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Perhaps the most salient aspect to the hubbub surrounding the reform bill (politics aside) is the tremendous amount of myth surrounding its individual provisions. Of course, no single lobby or advocacy group (mainstream media included) has the desire to read the entire thing — only the portions that benefit their needs, for whatever reason.^[1] However, groups under the radar, such as those which lobby for the needs of the Alzheimer patient population, stand to benefit from the recently passed legislation. According to the VP of the Alzheimer’s Association’s Public Policy and Advocacy Division, Obama’s reform legislation would

[Establish] a Medicare pilot program to provide transitional care to seniors at a high risk, including those with cognitive impairment, of re-entering a hospital. Cognitive impairment due to Alzheimer’s and other causes increases the complexity of care transitions and post-acute care, resulting in increased risk for medication errors and hospital readmissions. Alzheimer families need assistance with planning and managing discharge and post-acute care, including arranging and monitoring in-home medical treatment and supportive services.

It is easy to see the mixture of hope, advocacy, and idealism in this organization’s comments on the possibilities inherent in the reform bill. It’s also apparent how difficult it will be to apply them in the face of other lobbies desirous of the same possibilities and resources Obama’s reform will bring. | LINK

1. The AMA and AARP are perhaps the most well-known examples of lobbies taking public postures on reform.

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