Monday, May 12, 2014

Free Webinar May 21: Risks of Hearing Loss in Our Aging Population.”

Risks of Hearing Loss in Our Aging Population
MGS and MAGEC Free Webinar
Wednesday, May 21, 2014
Noon to 1 PM CDT

Research out of Johns Hopkins Medical Center is showing a correlation between hearing loss, falls, and dementia in people over the age of 50.  People in this age group who have a hearing loss, are at higher risk for falls and for dementia.  And not only is the risk higher for the onset of dementia, but also for a faster decline in functioning.

This information has implications for quality of life, demand for assisted living and/or skilled nursing care, and for healthcare costs.  Given these implications, are there actions that can be taken to counteract these risks?

The Minnesota Gerontological Association and the Minnesot Association for Guardiansip and Conservatorship are offering a free Webinar on” Risks of Hearing Loss in Our Aging Population.”  This session will explore the research in this area and discuss some potential solutions.
 
Speaker: 

Marty Barnum CSC, MA, currently works as a consultant and an interpreter.  She recently spent a year with the Office of Ombudsman for Long-Term Care under a special contract to look at the needs of nursing home residents with hearing loss.

Ms. Barnum previously coordinated interpreter services for the state of Minnesota, taught at St. Catherine University, and provided advocacy services for Deaf, hard-of-hearing and deafblind people in medical and legal situations.
 
Note: MGS has upgraded to the "Go to Webinar" platform for this webinar. You can now listen and watch through your computer, IPad, tablet or smart phone.
 
Register for this free webinar
 
Download the flyer

MGS and MAGEC Free Webinar
Wednesday, May 21, 2014
Noon to 1 PM CDT

May 12, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Programs/CLEs, Webinars | Permalink | TrackBack (0)

Thursday, May 8, 2014

Alzheimer's Accountability Act

Via the Alzheimer's Association:

Congress unanimously passed the bipartisan National Alzheimer’s Project Act (P.L. 111-375) in 2010. The law instructs the Department of Health and Human Services (HHS) to develop a strategic plan to address the rapidly escalating Alzheimer’s disease crisis. The annually updated National Alzheimer’s Plan must be transmitted to Congress each year and is to include outcome-driven objectives, recommendations for priority actions and coordination of all federally funded programs in Alzheimer’s disease research, care and services. The plan also includes the goal of effectively treating and preventing Alzheimer’s by 2025.

 

The one missing piece in this plan is a projection of the level of funding necessary to reach the critical goal of effectively treating and preventing Alzheimer’s by 2025. The Alzheimer’s Accountability Act represents a bipartisan effort to ensure that Congress is equipped with the best possible information to set funding priorities and reach the goal of the National Plan to Address Alzheimer’s Disease - effectively preventing and treating Alzheimer’s by 2025.

To express your support for the Alzheimer's Accountability Act, go here.

May 8, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Federal Statutes/Regulations | Permalink | TrackBack (0)

Wednesday, May 7, 2014

British government calls for dementia friendly workplaces

Via the BBC:

Businesses must become more dementia-friendly and support employees who care for loved ones with dementia, the British government says. With dementia affecting nearly 700,000 people in England alone, thousands of working friends and relatives end up taking on the role of carer. In 2014, 50,000 carers will have quit their job and 66,000 more will have to make adjustments at work, says Public Health England. It is launching an awareness campaign. The Dementia Friends initiative aims to show it will take a whole-society response to enable people with the condition to live well. To become a friend, individuals watch a short online film, which explains what dementia is, how it affects individuals and what people can do to help those living with the disease.

The average person diagnosed with dementia has been in their current job for at least nine years. Inevitably, many individuals affected while still working will have to take early retirement at some point. However, with support from employers, they may be able to keep working for longer, says the Alzheimer's Society.

Read more here.

May 7, 2014 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | TrackBack (0)

Wednesday, April 30, 2014

Another Book Recommendation: "The Banana Lady & Other Stories...."

Another book recommendation, courtesy of my Penn State colleague, neuropsychologist Claire Flaherty.  The book is "The Banana Lady and Other Stories of Curious Behavior and Speech," by Andrew Kurtisz  and first published in 2006.  Professor Flaherty accompanied this recommendation with the note that the book presents "truth is stranger than fiction" tales of changes in personality, behaviors and relationships, including the gradual loss of language that can occur even in one's "middle" ages. 

The author's bio is also interesting:

Dr. Andrew Kertesz is professor of Neurology in the Department of Clinical Neurological Sciences at the University of Western Ontario. He is Director of Cognitive Neurology and Alzheimer's Research Centre at St. Joseph's Health Care London and former Chief of the Department of Neurology. He graduated from Queen's University in Kingston, Ontario, studied neurology in Toronto, and behavioral neurology in Boston. His publications deal with the classification, localization and recovery in aphasia, as well as alexia, apraxia, visual agnosia and dementia. His books include Aphasia and Associated Disorders by Grune and Stratton (1979), Localization and Neuroimaging in Neuropsychology by Academic press (1994), and his most recent book, co-authored by Dr. David Munoz, is entitled, Pick's Disease and Pick Complex by Wiley-Liss Inc. (1998). Recent research projects are the experimental treatment of Alzheimer's disease, mild cognitive impairment, vascular dementia, primary progressive aphasia, and frontotemoral dementia. He has standardized a Frontal Behavioral Inventory for the diagnosis of Frontotemporal dementia and is active in clinical trials.

Thanks, Claire, for helping to keep our summer reading lists well filled. 

April 30, 2014 in Books, Cognitive Impairment, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Friday, April 25, 2014

Prof. Alexander Boni-Saenz on "Personal Delegations"

Chicago-Kent Law Professor Alexander A. Boni-Saenz shared a copy of his law review article, "Personal Delegations," published recently in the Brooklyn Law Review.  Here is an intriguing excerpt from the introduction, minus the footnotes:

"Donald and Gloria Luster married on October 5, 1963 and had four children. Donald retired in 2005, and it was about this time when Jeannine Childree, his youngest daughter and a registered nurse, noticed that he was exhibiting signs of dementia. After a number of consultations with doctors, Donald was officially diagnosed with Alzheimer's disease in 2009 due to his memory loss, disorientation, and other cognitive impairments. Based on these medical evaluations, a Connecticut probate court declared Donald incapable of handling his personal or financial affairs and appointed Jeannine and his other daughter, Jennifer Dearborn, as his guardians. Shortly thereafter, Gloria filed for a legal separation from Donald, and in response, the daughters counterclaimed for divorce, suspecting their mother of financial and emotional abuse. Should the guardian-daughters have the authority to sue for divorce on behalf of their father?"

The author then offers a second fact pattern, involving a man serving as agent for his incapacitated brother under a power of attorney, asking whether the agent should have "authority to execute a will on his brother's behalf," where only a small percentage would be left to the brother's biological child. 

Professor Boni-Saenz suggests that the numbers of people lacking "decisional capacitiy" are in the millions and "will only increase with an aging population."  This likelihood "presents many difficult questions" while also creating "an opportunity to rethink and reevaluate how the law treats people with cognitive impairments."  He then introduces his "personal delegation" thesis, in support of giving greater deference to agents in certain circumstances, permitting them to make binding decisions that might otherwise be questioned under what he outlines as a bias or presumption in current law:

 "The central claim of this article is that in the case of decisional incapacity, decisions that implicate fundamental human capabilities should generally be delegable. Thus, it rejects the rationale employed by courts to justify nondelegation--that these types of decisions are too personal to be made by another. This line of reasoning confuses nondelegation for nondecision, and it only serves to privilege a status quo outcome over the expression of fundamental human capabilities by individuals with cognitive impairments."

The full article is easily available on SSRN and on Professor Boni-Saenz' faculty web page, linked above.

April 25, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, State Cases, State Statutes/Regulations | Permalink | Comments (0) | TrackBack (0)

Thursday, April 24, 2014

"What If It's Not Alzheimer's?"

My Penn State colleague from Hershey Medical Center, Dr. Claire Flaherty, has shared with me a another fascinating resource, "What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia," by Gary Radin and Lisa Radin. 

The first chapter provides "The ABCs of Neurodegenerative Dementias," including frontotemporal dementia (FTD), Lewy Body Dementia, vascular dementia, as well as Alzheimer's Disease.  Key chapters including "finding the A Team" of specialists, and a guide to therapeutic interventions. 

The book reminds us that with some forms of dementia, particularly early onset dementias such as FTD, changes in personality or executive function may be the first signs, and easily misunderstood.  For example, the individual may manifest:

  • hypersexuality, including promiscuous sexual encounters with strangers; or
  • apathy or indifference to grooming and hygiene; or  
  • "hyperorality" with disinhibited consumption of large amounts of food; or
  • poor judgment with a lack of sense of consequences, sometimes coupled with poor impulse control

One chapter is unique, emphasizing the potential importance, after death, of an autopsy of the brain, and thus providing families with a way to contribute to biomedical research and the hope for better answers in the future.

April 24, 2014 in Books, Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Wednesday, April 23, 2014

Dementia Diagnosis and the Law

On April 24, I have the good fortune to be working with a neuropsychologist from the neurology department at Penn State Hershey Medical Center in presenting a program on "Dementia Diagnosis and the Law," for a meeting of the Estate Planning Council in York, Pennsylvania.  Professor Claire Flaherty and I have "traded" presentations in the past, with her speaking at the law school and me speaking at the medical school, but this will be our first time presenting together.  We're excited. 

One of the important lessons that I've learned in working with Claire is the clear potential for cognitive impairment to exist without the "usual" symptoms associated with "Alzheimer's."  For example, much of Claire's work is with patients and families coping with early onset dementias.  Because Frontotemporal Dementia or FTD (sometimes also referred to as Frontotemporal Lobar Degeneration or FTLD) can begin to manifest in persons aged 45 to 64 years, the onset may be overlooked or misunderstood. Plus, as Claire reminds me, "FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer's Disease is loss of memory."

For legal professionals, including those asked to prepare deed transfers, wills or estate planning documents, the potential for subtle presentations of cognitive impairment can be especially significant.  Making sure the client is oriented as to "time, place and person" may not be enough to address the potential for loss of judgment, thus opening the door for unusual gifts, risky financial decisions or even of adamant rejection of once trusted family members. 

A good place to turn for information about early onset forms of dementia, including FTD, is the Association for Frontotemporal Degeneration or AFTD -- or join us for the York Estate Planning Council meeting this week.  

April 23, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues, Legal Practice/Practice Management | Permalink | Comments (0) | TrackBack (0)

ACL Webinar on Elder Abuse and Neglect of Persons with Dementia- What We Know and Where We Are Going

When:  Thursday, May 8, 2014 from 3:00 p.m. to 4:15 p.m. Eastern

This webinar is the next session of the ACL Alzheimer’s Disease Supportive Services Program Technical Assistance Webinar Series.  The purpose of the webinar series is to provide helpful, current, and applicable information for professionals who work with people with dementia and/or their caregivers.

This particular webinar will focus on elder abuse and neglect as it relates to people with dementia.  Participants will learn about: 

  • The incidence and prevalence of elder abuse, especially abuse of those with dementia
  • Tips for screening and assessing for elder abuse in the population of people with dementia
  • Programs that are addressing elder abuse among the population of people with dementia

Registration is required.  After registering, you will receive a confirmation email that includes the link you will need to enter the webinar on May 8th.

For instructions on how to connect to the webinar by telephone, contact Sari Shuman by email at sshuman@alz.org or by telephone at 312-335-5823.

April 23, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Webinars | Permalink | TrackBack (0)

Monday, April 14, 2014

New Report Finds That Spouses Who Are Caregivers Are More Likely Than Other Caregivers to Perform Demanding Medical/Nursing Tasks

The United Hospital Fund and AARP Public Policy Institute has issued a report today showing that spouses who are caregivers not only perform many of the tasks that health care professionals do—a range of medical/nursing tasks including medication management, wound care, using meters and monitors, and more—but they are significantly more likely to do so than other family caregivers, who are mostly adult children. Nearly two-thirds of spouses who are family caregivers performed such tasks (65 percent), compared to 42 percent of nonspousal caregivers.

Despite these demanding responsibilities, spouses were less likely than nonspousal caregivers to receive in-home support from health care professionals; 84 percent of spousal care recipients received no professional health care on site, compared to 65 percent of nonspousal care recipients. Compounding the challenge, spouses were also less likely to receive help from family or friends or home care aides: 58 percent of the spouses reported no additional help from others, compared to 20 percent of nonspouses. This lack of support elicited special concern from the authors: “‘Taking care of one another’ in an era of complicated medication regimens, wound care, and tasks associated with complex chronic care is a challenge that no one should have to face alone,” they state in the report.
In addition, spouses who are caregivers were on average a decade older than nonspousal caregivers (median age 64 versus 54). They were also poorer, less likely to be employed, and less educated than nonspousal caregivers.
Family Caregivers Providing Complex Chronic Care to Their Spouses, a publication in the “Insight on the Issues” series, summarizes the new findings drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 20 percent of whom were spouses or partners. Earlier findings were published in the groundbreaking PPI/UHF report Home Alone: Family Caregivers Providing Complex Chronic Care and in an earlier publication in the “Insight on the Issues” series, Employed Family Caregivers Providing Complex Chronic Care.

April 14, 2014 in Dementia/Alzheimer’s, Health Care/Long Term Care, Statistics | Permalink | TrackBack (0)

Wednesday, April 2, 2014

Women Are Hit Especially Hard By Alzheimer's

Via the Alzheimer's Association:

We have known that women are the epicenter of Alzheimer's disease - making up the majority of both people living with the disease and caregivers. Not only are 3.2 million women living with Alzheimer's, women are also at the epicenter of caregiving for someone with the disease. The Alzheimer's Association's new 2014 Alzheimer's Disease Facts and Figures report shows women have a 1 in 6 chance of developing Alzheimer's, while men have a 1 in 11 chance. As real a concern as breast cancer is to women's health, women in their 60s are about twice as likely to develop Alzheimer's over the rest of their lives as they are to develop breast cancer.

A new Alzheimer's Association women's initiative has launched in conjunction with the Facts and Figures report. Realizing the impact Alzheimer's has on women - and the impact women can have when they work together - we ask women to share why their brain matters and how they can use it to end Alzheimer's at alz.org/mybrain.

2014 Facts and Figures Report

April 2, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Statistics | Permalink | TrackBack (0)

Sunday, March 30, 2014

MOOC on Understanding Dementia to Begin March 31

Last fall, our Elder Law Prof Blog reported on the available of a MOOC (Massive Open On-Line Course) offered by John Hopkins School of Nursing on "Care of Elders with Alzheimer's Disease and other Major Neurogonitive Disorders."  Did any of our readers participate?  We welcome reports on your reactions to the experience.

Now there's a another MOOC opportunity, this time from the University of Tazmania on "Understanding Dementia."  The 9-week course is described as "building on the latest in international research on dementia." And, true to the spirit of MOOCs, it is free and open to anyone to register, here.  The course begins Monday, March 31 -- so hurry to register.

March 30, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Science, Web/Tech | Permalink | Comments (1) | TrackBack (0)

Thursday, March 27, 2014

Good News or Bad News? A Blood Test with Potential to Predict Future Cognitive Impairment

Occasionally on this Blog we post to studies suggesting cutting edge scientific developments connected to Alzheimer's.  For example, last October, our colleague Professor Dayton, provided a link to a study in England described as a possible "breakthrough" in Alzheimer's research related to misfolded proteins in the brain.   John O'Connor, the executive director for McKnight's Long-Term Care News, recently offered his own reaction to such news, following release of a different study:

"Here we go again: This week saw the release of yet another breathless study claiming the cure for Alzheimer's disease is getting closer — maybe.

 

The latest incantation is a report in Nature Genetics. This entry touts an international study of the disease that may help us unlock a cure. Unless, of course, it doesn't.

 

It seems like we get treated to at least one or two of these “important breakthrough” studies every month, sometimes more. And the plot seldom varies: Earnest investigators working countless hours have issued a report that may bring us closer to a cure. Then, tucked somewhere in the back is a mention that, ahem, more research is needed."

As with Mr. O'Connor, I suspect many of us have experienced "breakthrough fatigue" in the area of Alzheimer's research.  Nonetheless, I am going to point to another study, this time suggesting a blood test targeting biomarkers that "may be sensitive to early neurodegeneration of preclinical Alzheimer's disease," and thus predictive of "either amnestic mild cognitive impairment or Alzheimer's disease within a 2-3 year time frame."  The report on "Plasma Phospholipids Identify Antecedent Memory Impairment in Older Adults" is in the March 2014 issue of the journal Nature Medicine and despite the somewhat intimidating title, it makes for interesting reading. 

But my real question is not about the value of the study, or as John O'Connor's essay suggests, concerns about the potential for hype to generate false hope, but whether many would actually be horrified by a predictor of future cognitive impairment within 2 to 3 years, even (especially?) one with "over 90% accuracy."  I can think of several people I've known who worried about their "failing memory," sometimes for years, but who expressly rejected seeing a specialist for testing.  Without a solution, such tests might be the ultimate example of the unfunny joke: Do you want to hear the good news or the bad news first?  We know what's going to happen to you -- but you aren't going to like it. 

 

March 27, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Science | Permalink | Comments (0) | TrackBack (0)

Tuesday, March 25, 2014

Surrogate Decision-Making to Preserve Sexual Autonomy for Residents in Nursing Homes

William and Mary Law School student Elizabeth Hill takes on the challenge of discussing sex and seniors in her Student Note, "We'll Always Have Shady Pines: Surrogate Decision-Making Tools for Preserving Sexual Autonomy in Elderly Nursing Home Residents" for the Winter 2014 issue of the William and Mary Journal of Women and the Law.  She concludes:

"With changes to state law to expand the tool of power of attorney, residents who want to retain autonomy in decisions about their bodies and relationships could employ surrogate decision-making tools like durable powers of attorney and advance healthcare directives to ensure that they are able to participate in and enjoy sexual activity even after the have lost the capacity to consent and even if their families disapprove of the activity. Perhaps the most difficult aspect of adopting such a mechanism would be putting aside our personal and preconceived notions about sexual conduct in order to allow others to experience a little happiness in an otherwise gloomy setting."

The title for the article, alluding to Humphrey Bogart's famous line in Casablanca, is a clever introduction to a sensitive topic. 

March 25, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues | Permalink | Comments (0) | TrackBack (0)

Wednesday, March 19, 2014

Hot Book: 100 Simple Things You Can Do to Prevent Alzheimer's

I spent most of our recent spring break in Arizona with my parents and sister (and trying to thaw my frozen bones).  I had time to visit friends, some I haven't seen in decades, and often I was  tempted to give a rueful chuckle.  We're all in the same age range -- and several of us are searching for ways to help aging parents.  With friends who have a parent with dementia, as soon as they find out that much of my work now focuses on "elder law," I would get what I've come to think of as "the question."

What's the question?  "Is it inevitable that I too will develop dementia?"  Of course, I'm a  law professor, not a doctor.  My friends are asking the wrong person.

But, then I noticed that several of my friends were reading the same book.  The book is "100 Simple Things You Can Do to Prevent Alzheimer's and Age-Related Memory Loss," by  Jean Carper, a well-respected medical journalist.  One friend loaned me a copy.  It was first published in 2010.  I asked friends what they liked about the book, and more than one mentioned the "single idea" format for chapters, short enough to keep the reader on task, while sufficiently detailed to convince the reader why that "tip" just might make sense.

Some of the 100 "things" are, I hope, mostly an affirmation of common sense, such as Chapter 17's "Count Calories" and Chapter 20's "Control Bad Cholesterol."  Occasionally a chapter strikes me as a bit trendy, such as the admonition in Chapter 22 to "Go Crazy For Cinnamon."  But quite a few topics and explanations were either surprising, intriguing, or both, including Chapter 3's recommendation to "Check Out Your Ankle."  The author explains how low blood flow in your foot, measurable by an ankle-brachial index (ABI) test, can point to looming troubles for the brain.  

Happy reading and good luck adapting the tips to your life.  Remember, with 100 recommendations to read, evaluate, and, as appropriate,  embrace, it doesn't hurt to start "young." 

March 19, 2014 in Books, Cognitive Impairment, Dementia/Alzheimer’s, Science | Permalink | Comments (0) | TrackBack (0)

Monday, March 17, 2014

St. Patrick's Day Update: Irish Research on Ageing

IMG_1978On St. Patrick's Day it seems appropriate to check on what is happening with research on aging -- or ageing as they spell it -- in Ireland. 

The Centre for Ageing Research and Development in Ireland (CARDI) is a great resource for comparative research, capturing a wide range of articles and projects in Europe, as well as the latest research grants in the north and south of Ireland. 

In one of the recent reports linked by CARDI, "A National Survey of Memory Clinics in the Republic of Ireland," researchers are critical of the lack of clear standards for diagnosis, treatment and collection of data on dementia, and point to potential weaknesses observed in a national system of Memory Clinics (MCs) in the Republic of Ireland (ROI), noting the potential for such problems to exist on a broader basis: 

"Although this is an Irish-based study, our findings raise several important questions pertinent to many countries around the world currently developing and expanding diagnostic and postdiagnostic services to address the challenge of dementia.  First, what type of specialist services do MCs offer and what are their core aims and objectives? Are MCs concerned with offering a more correct diagnosis than what might otherwise be available through generalist services? Are they committed to providing earlier diagnoses and interventions in more unusual cases (including memory problems that are reversible) and if this is the case, is a waiting time of up to four months acceptable? In the ROI, GPs [general practitioners] are permitted to initiate cholinesterase inhibitors for patients diagnosed with dementia, but would it be preferable if the prescription of such drugs was confined to MCs or other specialists involved in dementia diagnosis? What role do MCs play with respect to the education and training of primary care and other allied health professionals? Should this role be confined to only the larger longer established clinics that become Centers of Excellence and review only few and very rare cases?"

Do we have any systemic approach to diagnosis, treatment and data collection on dementia in the United States?

March 17, 2014 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Wednesday, March 5, 2014

"Choosing Wisely" -- Recommendations for Medications & Treatments in Senior Care

The American Geriatrics Society and the American Board of Internal Medicine Foundation have joined in a venture called "Choosing Wisely," and recently issued "Five Things Physicians and Patients Should Question." 

The items are intended to stimulate more thoughtful decision making, especially in dementia care, and address diet, restraints, and use of screening tests.  Two items that hit home include:

  • Don't prescribe cholinesterase inhibitors for dementia without periodic assessment for perceived cognitive benefits and adverse gastrointestinal effects.
  • Don't prescribe any medication without conducting a drug regimen review.

This "Five Things" list was actually the second set of "Choosing Wisely" recommendations.  Here's a link to the important first list, which includes the concern about off-label prescriptions of antipsychotic medications to treat symptoms in dementia, a topic that has also been the subject of major whistleblower cases and settlements involving the pharmaceutical industry. 

March 5, 2014 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (1) | TrackBack (0)

Thursday, February 27, 2014

Hilarity for Charity: Actor Seth Rogen Testifies on a Serious Subject

Hat tip to Penn State Law Student Kevin Schock for sending this news!

Actor Seth Rogen, organizer of Hilarity for Charity, uses humor to call attention to the need for better funding to fight Alzheimer's, and on Wednesday brought his humor to the U.S. Senate.  Here he is in testimony before the Senate Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, describing the struggle of his own wife's family with early onset dementia. 

 

February 27, 2014 in Current Affairs, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Wednesday, February 26, 2014

AARP launches state legislative campaign for caregivers

Via AARP:

AARP recently launched a new multi-state caregiving advocacy campaign, with nearly every AARP State Office involved.  Working with governors, state legislators, other policymakers and community partners, we’re determined to advance policy options that will help family caregivers.  Two significant components of the campaign are:

The Caregiver Advise, Record, Enable (CARE) Act.

10 AARP State Offices are working to pass CARE Act  through state legislation and/or regulation this year, with Oklahoma and Hawaii leading the way.

  • In Oklahoma SB 1536 – the Oklahoma version of the CARE Act – just passed the Senate and will be heard in the House soon.    Meanwhile, Governor Mary Fallin declared this month as “February Caregiver Month” to   honor the state’s 600,000 family caregivers.
  • AARP Hawaii, is urging the Senate Judiciary Committee to pass Senate Bill 2264, the Hawaii equivalent of the CARE Act.  AARP members in Hawaii are now contacting members of the committee asking them to support the 169,000 family caregivers in the state by passing Senate Bill 2264.

By passing the CARE Act these states will ensure that:

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The facility must provide an explanation and live instruction of the medical tasks – such as medication management, injections, wound care, and transfers – that the family caregiver will perform at home.

For more on AARP’s advocacy: AARP Announces 2014 Advocacy Agenda: Across the States.

February 26, 2014 in Dementia/Alzheimer’s, Health Care/Long Term Care, State Statutes/Regulations | Permalink | TrackBack (0)

Tuesday, February 25, 2014

The Very Well-Intentioned, but Dangerous, Promise?

One of my frequent travel routes is to drive between Carlisle and Baltimore, in order to take direct flights from BWI to Phoenix, where my parents live. Usually these drives are in the middle of the night, as I try to avoid traffic by scheduling very early or late flights. One positive aspect of this travel is the time to discover interesting radio programs; there is something about listening to radio in the dark that allows one to hear more clearly.  Last week, I lingered in the car after reaching the long-term airport parking, to listen to the end of an especially effective interview.

On Point with Tom Ashbrook, was hosting Kimberly Williams-Paisley who spoke movingly about her family as they coped with her mother's early onset of a form of dementia, diagnosed at age 61.  For those of you who enjoy either movies or music, you might recognize Kimberly as an actress from Father of the Bride (she was the daughter driving Steve Martin to wit's end) and Nashville, or as the wife of country music star Brad Paisley.  Also featured on the program was a clinical social worker, Darby Morhardt, who is an associate professor at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.

The program was very thoughtful and emotional, but for me the most compelling words came from Kimberly's father, Gurney Williams. 

This is a man deeply in love with his wife and also deeply affected by her condition.  At first he tried to hide her diagnosis, but over time, this became more and more difficult.  Mr. Williams describes how he finally came to terms with the need for help -- and the need for more than family help -- when his children staged a bit of an intervention.  They asked him to recognize that his wife's condition, which in her case included confusion, mood swings, anger and -- at times -- violence, was more than they could cope with in the home.  They were worried about their mother, but even more devastated by "losing" their father as he struggled to care for her.  With the family's help, he finally made the difficult decision to place his wife in a formal care setting. 

And it was during his description of the journey, that I heard the words I've also heard many times from friends, family, students and clients.  "I promised my loved one I would never put her in one of those places." I have come to recognize this promise as completely well-intentioned, but also potentially dangerous for all involved.

Listening to Mr. Williams and Kimberly, you could tell formal care was the right decision and they were able to find the right kind of care facility for their loved one.  And it was a decision that allowed all of them to find a new way to express their love and devotion to her, while also providing her with a supportive, safe environment. Kimberly talks about how she stopped talking about her mother in the past tense, rediscovered her and how they created a new, valuable relationship.  Their story has a happy evolution, which, of course, is different than a happy ending.

One of the reasons I was so affected by listening to Mr. William's words, was that I was on my way to the airport to visit my father -- to see him for the first time --  after his transfer to a dementia-care community.  All of my fears and hopes were bound up in my listening.  On arriving in the airport I went directly to a shop and bought a copy of the March issue of Redbook Magazine, which carried the story by Kimberly Williams-Paisley that led to the invitation for her and her father to be guests on the On Point program. I read and re-read "How I Faced My Mother's Dementia" on the plane -- and shared her words with my mother when I arrived. 

I suspect I might write more about my own evolution with my father. Right now it is easier for me to recommend the article, and to say the podcast of the On Point show is even better than the article.  

February 25, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing | Permalink | Comments (1) | TrackBack (0)

Thursday, February 6, 2014

Dancing to ward off Alzheimer's

Via NBC News:

Every Saturday at Casa Maravilla, a housing development for seniors in Chicago, dozens of older Latinos gather to dance and, they hope, help preserve their memory.  At twice-weekly practices, they step in sync in promenade-like moves to danzón, the slow and elegant musical genre that’s popular in Mexico. Or, they swish their hips and twist through each others’ arms to more energetic salsa.  The dancers are part of the Latino Alzheimer’s & Memory Disorders Alliance, or LAMDA, which started “Bailando por la Salud” (Dancing for Health) to inspire Latinos who are uncomfortable with other forms of exercise to get fit and healthier -- which in turn may help stave off Alzheimer’s and other memory loss conditions.

Read more at NBC News.

February 6, 2014 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | TrackBack (0)