The AHCA and Elders on Medicaid

Wahatoya Enshrouded

In this post, I am looking at what’s at stake for elders currently on Medicaid.  The AHCA or American Health Care Act (a/k/a Trumpcare) narrowly passed through the U.S. House, with twenty Republicans voting against it.  It faces more hurdles in gaining Senate approval, but the Senate is now considering the proposed law.

Medicaid is of course a government “welfare” program which came into being (along with Medicare) in 1965  when President Lyndon Johnson signed into law the bill leading to the establishment of both programs.  While many people think of the stereotypical mom and kids when they think of Medicaid – they were a primary source of concern for the original Medicaid program after all – there are many elders who are sick enough and poor enough to qualify for Medicaid.

How is the financial stability and well-being of elders on Medicaid threatened by this proposed law?

Colorado has been one of the many states in which “Medicaid expansion” has boosted enrollment in the insurance rolls of elders, the rural poor and other populations.  In Colorado, Medicaid is known as Health First.  The AHCA proposes, among many other huge changes, to move the funding to a “block grant” system in which each state will be given a grant for their Medicaid recipients.  Here’s a recent Denver Post article which discusses the impact of such a grant on Colorado’s budget.  Leaving the states to shoulder more of the Medicaid funding sounds like a good way to offload federal Medicaid as we know it, but it will change the landscape of health care services available to poor elders, particularly in rural areas, in ways we cannot foresee.  And I do not mean for the better!

How has the payment of health care services changed over the years?

I remember my father telling me about the circumstances under which my oldest brother was born in a hospital in Denver sixty-six years ago: the nuns weren’t happy with him because he couldn’t pay for my mother’s delivery (it was a bit complicated) with cash on the spot.  Yes, those were the “good old days” in many ways, when many Americans paid for lots of routine things (including the hospital stay for the birth of a child) out-of-pocket.  I found this colorful graphic from the California Health Care Foundation, which demonstrates how the source of health care payments have changed since 1960 through 2014.  If you want to look at some more color graphs, check out this collection of instructive slides in Louise Shiner’s pdf entitled Understanding the Slowdown in Heath Care Spending Growth.  In today’s “health care” environment, many of us need assistance for paying premiums, with getting needed prescription drugs and related items we couldn’t otherwise afford.  Long gone are the days when we routinely paid out of pocket for medical care!

So – who will pay for the elder’s medical care if Medicaid as we know it. . .  . disappears?

Based on information from the Medicaid.gov website, Medicaid provides health coverage to more than 4.6 million low income elders, nearly all of whom are also enrolled in Medicare.  Medicare has four basic types of coverage:

Part A: Pays for hospitalization costs

Part B: Pays for physician services, lab and x-ray services, durable medical equipment, and outpatient and other services

Part C: Medicare Advantage Plan (like an HMO or PPO) offered by private companies approved by Medicare

Part D: Assists with the cost of prescription drugs

Medicaid can assist low income elders in paying their insurance premiums and out of pocket medical expenses; it can also pay for additional services beyond those paid for by Medicare – like long term nursing care, prescription drugs, eyeglasses, and hearing aids.  Medicaid can often make a difference in providing the needed care or services by covering the shortfall from the difference in Medicare payment limits and the costs to the patient.

Here is a fact sheet from Justice in Aging which identifies what the “block grant” funding proposal would mean for elders on Medicaid.

Bottom line is that poor elders would receive less medical care or lower quality care as a result of the belt-tightening of the states providing those Medicaid services to their recipients.  People who have a period of ineligibility – like if they inherit a sum of money from a sibling or child – would not be able to re-qualify for future Medicaid services.

I don’t usually like to write these kind of “scary” blog posts, but as an elder law attorney I am deeply troubled by what might happen to some of the most vulnerable persons in our country (disabled adults) if the AHCA is passed.  I’m only mentioning in passing that Medicare premiums will rise – remember those tax cuts in the AHCA have to land somewhere!  Under the block grants, states will be free to retool their own stricter rules and I would imagine that some states will be looking to filial responsibility laws for shifting their burden to requiring the children to pay.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

JeffCo Senior Law Day is June 3, 2017!

The Rialto Bridge at night

May is National Elder Law Month! So – for the last post of this month I wanted to mention this important detail.

The event I’m participating in to observe elder law month, however, is next month . . . the Jefferson County Senior Law Day is coming up on June 3, 2017.  More information about it is here including registration information.

There will be twenty-four separate presentations on more than twenty different topics, beginning at 9:00 a.m. and concluding at 1:45 p.m.   I will be presenting on the topic “Managing the Challenges of Later Life Remarriage.” Last year at this Senior Law Day (there are a few different locations in the front range area, click here for more details on the Colorado Bar Association website) I presented on a similar topic.  Mine is a relatively new topic but is one about which many people have questions.

If you can’t attend this Senior Law Day and are looking for reliable information resources, you can click here to download the 2017 Colorado Senior Law Handbook, published by Continuing Legal Education in Colorado.

© 2017 Barbara Cashman  www.DenverElderLaw.org

What If We Declared a War on Elder Abuse?

Diana in Venice

What will it take to raise the public’s awareness of the prevalence of elder abuse? Here is a recent New York Times article about a woman from Washington state, a granddaughter of a victim of elder financial exploitation, who has made her mission in life to secure further legal protection for vulnerable elders.  I tip my hat to the Elder Law Profs blog for the mention of this article.  For this post, I’m focusing primarily on financial fraud and exploitation of elders.

Colorado statistics over the last several years (since the change in law concerning mandatory reporting of elder abuse and investigation by law enforcement) indicate the numbers continue to rise dramatically.  Read this Denver Post article from last fall with some of the breathtaking numbers in Colorado.  The national numbers are a bit more complicated, due in part to the variances of state laws concerning elder abuse – not all states have made it a crime to financially exploit an elder, as well as how such crimes get reported.  In Colorado, law enforcement and county adult protective services are part of the investigative framework for suspected elder abuse and some district attorneys’ offices have specialized prosecutors for such crimes.  The federal law, the Elder Justice Act – about which I have previously written, could provide an important means for developing a more systematic approach to reporting (among other important things) remains only partly funded.

A 2011 study published by MetLife Mature Market Institute estimates the financial loss by victims of elder financial crimes and exploitation exceeds $2.9 billion dollars annually, but this number remains controversial as other studies have estimated $17 billion or $36 billion.  Read about the variety of those numbers here.

How do we define fraud on elders?  That is a big part of the problem with a lack of any “standardized” way to identify such fraud and abuse so as to generate reportable numbers for particular types of fraud and abuse.  One thing that most are certain of is that the exploitation and fraud are both widely underreported –due to the shame and embarrassment factor, particularly when the perpetrator is a family member, friend or neighbor (occupying a position of trust).

Know the risk factors

Forbes recently ran an article by John Wasik that had a great summary of four of these which consider the elder’s behavior:

  • Poor Physical Health. Those who are physically compromised are unlikely to be focused on financial matters. They are often vulnerable to swindles.
  • Cognitive Impairment. When the ability to do basic things like read a banking statement or balance a checkbook declines, that’s when you have to pay attention. Those with declining math skills will not be asking important questions about new investing “opportunities.”
  • Difficulty in Activities of Daily Living. If a person has trouble feeding themselves, bathing or shopping, that’s a big set of red flags. That also means that they will have trouble managing money.
  • Social Isolation.Are they all alone? Then they won’t have the support of a network of peers, who could warn about scams.

Recognize the signs

The signs are of course numerous and varied, but keep in mind that there are many ways in which the behavior of the perpetrator of the fraud or exploitation of the elder mimics that of a perpetrator of domestic violence.

  • Use and abuse of control of the elder’s finances, such as taking, misusing, or using without the elder’s knowledge or permission their money or property;
  • Forging, forcing, or using deception, coercion or undue influence to get an elder person’s signature on a legal document – this could include signing over title to a home or other asset, or a power of attorney or a will;
  • Forging or otherwise forcing, or using deception or other inappropriate means to misappropriate funds from a pension or other retirement income, to cash an elder’s checks without permission or authorization;
  • Abusing joint signature authority on a bank account or misusing ATMs or credit cards;
  • Exploitation through a fiduciary relationship – such as an agent under a financial power of attorney acting beyond the scope of the agent’s authority, or improperly using the authority provided by a conservatorship, trust, etc.
  • Misleading an elder by providing true but misleading information that influences the elder person’s use or assignment of assets, persuading an impaired elder person to change a will or insurance policy to alter who benefits from the will or policy;
  • Promising long-term or lifelong care in exchange for money or property and not following through on the promise, overcharging for or not delivering caregiving services; and
  • Denying elders access to their money or preventing them from controlling their assets or gaining information about their assets.

Keep in mind that neither of these lists is comprehensive or exhaustive!

Report suspected abuse, exploitation or fraud

If you aren’t sure who to call and the situation doesn’t require a 911 call, use the National Center on Elder Abuse’s resource page to determine who to call.

The only way we will get a better handle on the extent and pervasiveness of elder financial abuse and exploitation is to become more familiar with it so that we know how to ask those whom we seek to protect.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Identifying the Inner Landscape of Elderhood

 

Italian Arch

Last week I went on a “spring break” trip of sorts. . .  to the Jung in Ireland seminar with the Monks of Glenstal Abbey. This year’s topic was shame and pride.  It was my third trip to Ireland for this seminar and this year’s topic resonated with me because I encounter these difficult emotions – particularly shame – in my elder law and probate practice.  Some of the issues I see, which have burgeoned into legal difficulties and which may necessitate legal proceedings – often resulting in extensive involvement by a court, might begin with these difficult emotions and play out badly in the family relationship context.

In my experience, one of the most difficult things for an elder parent to contend with is a squabble over how the elder’s health challenge or cognitive decline or other age-related malady will be managed by the adult children.  This can be a difficult place for a family as the elder parent just wants the kids to stop fighting, while the children often wage a pitched battle over who has the correct approach to helping the parent manage difficulties, as well as difficulties in identifying and upholding what each child perceives (often differently) as the best interests of a parent.  These adult children often cannot understand that each of them may be just as convinced as another sibling with an opposing point of view that they are uniquely equipped to handle the delicate issue of managing finances, helping secure appropriate housing or serving as a health care agent for their parent.

I offer these posts as a kind of alternative to an elder parent doing nothing – hoping not to cause world war III among their children.   Some parents hold to their firmly held belief that they “raised their kids right” and so naïvely want to believe that this thinking will somehow immunize them from conflict or worse, exploitation.  Many elders simply choose to wait, and simply hope for the best in the event a crisis occurs, to see how things might play out on a kind of wait and see basis.  There is an alternative to this denial!

This alternative I describe is about the kairos of elderhood. Kairos being the quality of time, the paying attention to the present and its opportunities to see what is in front of us and that which we have set before ourselves.  In our culture we focus almost exclusively on the quantitative aspect of time – chronos – as we simultaneously obsess over our longevity and puzzle over what to do with it.  In this post, I will identify the inner landscape as a determiner of what we see and perceive as the outside world – and how this might free us from some of our anxieties about aging and its deleterious effect on our human doing-ness.

What is the “inner landscape” to which I refer?  Well, the inner would refer here to the landscape which is inside us, how we see the world. I am reminded of Anais Nin’s keen observation that “we see the world not as it is but as we are.”  How can we remember this important detail in our “always on” world, where the disease of busy-ness is a chronic affliction and the pace of our lives offers few opportunities (much less encouragement) of staking out some reflective and contemplative time in our lives to consider an inner landscape?

In his book Mindsight, the psychiatrist Daniel Siegel offers an insightful description about personal transformation(s) that can lead to an integration of a self otherwise consisting of many disparate aspects.  I quote Mindsight at 238:

This drive for continuity and predictability [of a sense of self] runs head-on into our awareness of transience and uncertainty.  How we resolve the conflict between what is and what we strive for is the essence of temporal integration.

How many of us could remember by heart Blaise Pascal’s injunction “in difficult times carry something beautiful in your heart?”  If we can remember, perhaps that something beautiful is a feature of our inner landscape, made visible to us by an experience when we were outdoors in nature, in an interaction with another person or being, or perhaps by some sense of our identity relative to the “outside” world.  Our sense of permanence is illusory, and draws us again to the distinction between what we see and what we look for – the latter being where the Kairos quality of time resides.

That “something beautiful” is perhaps what Viktor Frankl describes in this quote from Man’s Search for Meaning, in which he describes the challenge of readjusting to life outside for the concentration camp survivors like himself:

What was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those who were being questioned by life—daily and hourly. Our question must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.

I am reminded also of “Against the Pollution of the I,” by another concentration camp survivor (the blind French resistance leader), Jacques Lusseyran, where he describes “seeing” (remember he lost his sight as a child) …

It is often said that seeing brings us closer to things.  Seeing certainly permits orientation, the possibility of finding our way in space.  But with what part of an object dies it acquaint us?  It establishes a relationship with the surface of things.  With the eyes we pass over furniture, trees, people.  This moving along, this gliding, is sufficient for us.  We call it cognition.  And here, I believe, lies a great danger.  The true nature of things is not revealed by their first appearance.

Against the Pollution of the I, at 54 (2006: Morning Light Press).

I will end this post with another question, akin to the kairos-chronos distinction: If we as individuals and as persons in relationship with loved ones valued our time (how we spend it) as much as we do our space (how we fill it with stuff) – could this change our relationships for the better?

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Fast facts about the Colorado End of Life Options Act

Where the Light Comes In

Today I’m presenting on this topic at the biennial Advanced Elder Law Institute, put on by Continuing Legal Education in Colorado.  It’s a two day program and I’m looking forward to it.  One of the best things about being a lawyer is I am always challenged to learn new things, as the law is – just like the rest of us – in a constant state of change and development!

As you may be aware, Colorado voters passed ballot initiative 106 last November and after certification of the election results by our Secretary of State, the law went into effect when Governor Hickenlooper signed it (by proclamation, in accordance with Article V of the Colorado Constitution) on December 16, 2016.  Colorado became the sixth state to have a physician assisted death law.  Other states with such laws include Oregon (the first state to have such a law) and Washington, where voters approved the laws as ballot initiatives; as well as Vermont and California, with their laws being passed by their legislatures in 2013 and 2015, respectively. Technically, Montana is also one of these states (by virtue of a Montana Supreme Court decision) but it doesn’t have any regulatory means of providing physician assisted death.

The title of the Colorado statute is the Colorado End of Life Options Act (EoLOA), but the terminology used for the death-causing prescription is “medical aid in dying” (hereafter MAID).

Unlike most statutes originating as legislation in the Colorado legislature, there was no preparation time for easing into this new law.  What are the implications of this?

Doctors have to get up to speed quickly on this new law.  They hold considerable power in this new law – they make the determination whether a person qualifies under the EoLOA as “terminally ill;” is “mentally capable” to request the MAID, get and fill that prescription.  Emergency rules had to be put in place by the Colorado Department of Public Health & Environment concerning the new law.  You can read the rules and download a couple of the forms on the CDPHE site.

There have been a number of complications with this new law and its immediate enactment.  The EoLOA is designed to cover all physicians and facilities unless there is a written policy notifying both patients and physicians of the facility’s policy to “opt out” of compliance with the law.  One of the challenges with simplifying this complicated issue of MAID in the initiative is that the law makes MAID available but there is no guarantee that an individual will have access to such MAID.  Several religious based systems opted out fairly early and there are other complications that have presented with other facilities.  Here’s a Denver Post article which speaks to some of those challenges.

An individual’s access to MAID may depend on where one lives.  Access may be more difficult in rural areas.  A local rural hospital board explained their “opt out” policy as follows:

The law requires that hospitals opt in or opt out of the practice; participation by hospitals and physicians is voluntary.  In December, YVMC’s Board of Trustees decided to opt out of participation in the End of Life Options Act at this time. This is due largely to the number of standards that must in place to meet both the requirements of the law and the needs of patients. The Board of Trustees, along with YVMC’s Ethics Committee, will continue to review the End of Life Options Act and will keep the possibility open to opt into the End of Life Options Act at a later date.

Because of this decision to opt out, patients are not permitted to self-administer medical aid in dying medication on YVMC’s premises, nor are employed or contracted physicians permitted to write a prescription for medical aid in dying medication for an individual who intends to self-administer medical aid in dying medication on YVMC’s premises.

Colorado is not the only state experiencing these difficulties.  Here’s a recent NY Times article on aid in dying and access difficulties.

I’ll close with three “tips” regarding MAID and minimizing conflict at the end of life:

  • Talk to your doctor and find out what all of your options are
  • Talk to your family and loved ones about what you might decide to do
  • Don’t wait too long! The MAID process takes at least two weeks….

© Barbara E. Cashman 2017   www.DenverElderLaw.org

When and How Should Someone Report Suspected Elder Financial Abuse or Exploitation?

Safety in Numbers

My posts about reporting elder abuse remain my most popular among readers and since it’s been a while since I’ve written on the topic, I thought it was time! I get regular calls from people about this question, often from adult children who are concerned about what is going on with a parent.  Plus, I listened to a webinar put on by the ABA last week about recognizing and preventing these scams.  Today I’m focusing on federal programs and resources.  Here’s a link to the US Department of Justice (DOJ) Elder Justice Initiative to get started.

Among the presenters at the webinar were a representative from the Consumer Financial Protection Bureau (CFPB) and a prosecutor from the US DOJ Civil Division’s Consumer Protection Branch.  I mention these two federal resources because most of us tend to focus only on local or state law enforcement when it comes to reporting suspected financial abuse or exploitation of an elders.  One other recent detail popped up on a listserve recently, reporting a scam concerning what was represented to be an “escrow company” to the victim and who told her they were assisting in the sale of her time share in Mexico.  Apparently tens of thousands of dollars were cumulatively wired to the scammers, for the purported purpose of covering taxes and transaction fees.  I searched online and found several posts about these types of scams that sound like perfectly legitimate businesses.  One of these scammers was using the name of a legitimate Colorado business.  Couple this with a scammer’s ability to “spoof” a phone number on the recipient’s caller ID, and it’s a pretty dangerously convincing mix!

The scammers are as familiar as the rest of us with the adage “if it’s too good to be true it probably is,” but some of these scams persist, coming in many new and different forms.  The more troubling scam scenario however is the much more legitimate sounding scam, which doesn’t purport to be a “sure thing,” but instead rely on a common human tendency toward “in for a penny, in for a pound” behavior, or what economists refer to as sunk cost fallacy and psychologists call commitment bias.

Many of these scenarios involve mail fraud and wire transfers.  Read a recent press release from the DOJ about actions concerning mail schemes targeting by foreign nationals.  Last March, the CFPB issued an advisory and a report with recommendations for best practices for banks and credit unions on “how to prevent, recognize, report, and respond to financial exploitation of older Americans. Financial exploitation, the illegal or improper use of a person’s funds, property or assets, is the most common form of elder abuse and costs seniors billions of dollars per year.”  The Advisory, which contains recommendations concerning the development of internal controls for the protection against and reporting of exploitation, training of staff to prevent , detect and respond to elder financial exploitation and using appropriate technology for the detection and reporting to local, state and federal authorities, is available here.  The executive summary of the CFPB’s report begins with an important message:

Elder financial exploitation has been called the crime of the 21st century and deploying effective interventions has never been more important. Older people are attractive targets because they often have assets and regular income. These consumers may be especially vulnerable due isolation, cognitive decline, physical disability, health problems, or bereavement. Elder financial exploitation robs victims of their resources, dignity and quality of life—and they may never recover from it.

You can read more of the report here.

There are many ways that scammers defraud elders and some of these include Medicare, Medicaid and health insurance fraud (which is akin to a form of identity theft), IRS and tax scams, mail fraud and internet scams involving “sweethearts” and online dating, sweepstakes and lottery “winnings” and tech support scam.  The Justice Department also has a helpful roadmap identifying what type of scam and which federal agency to which it can be reported.

One valuable thing for people to consider in reporting an incident of suspected elder financial abuse and exploitation is this: a single victim may not have suffered a devastatingly huge loss, relative to their life savings perhaps, and it may even have been a relatively small loss, but if it is multiplied among a range of victims nationwide, what the scammers take can amount to millions of dollars.  This is why reporting remains critically important.  We are charting new ground here as many facts and figures about the incidence and forms of elder financial abuse and exploitation remain unknown due to underreporting.

That’s all for now.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

End-of-Life Options: Medical Technique Portrayed as a Right pt. 1

Ketring Lake at Dusk

For the next few posts I promise to vary my topics a bit, so I won’t be writing solely on the new Colorado law and its implications.  But for this post, I wanted to spend a bit of time on the “big picture.”  I had the privilege today of spending the morning listening to Jennifer Ballentine’s thoughtful and informative presentation on the new law and what it means in practice and policy for healthcare providers and facilities.  Many of the folks there were from the hospice and palliative care community, several different residences (skilled nursing facilities, assisted living facilities and continuing care retirement communities) were represented and of note were the attendance of several first responders (EMS or firefighters). Perhaps in a subsequent post I will delve into the dilemmas of EMS providers who may be unaware of a person’s use of life-ending medication under the new law (as they are sometimes unaware of do not resuscitate orders).   Many different people in attendance with lots of challenging questions.   But only some of those questions could be answered by reference to the new Colorado law.

The situation with the new law was an abrupt sea change.  The day before this new law was certified by the governor all of these folks from their diverse communities were continuing to discourage very ill people from thinking and possibly acting upon suicidal thoughts and wanting to end it all.  Once the law was certified, then BAM – all that changed.  No easing into any transitional period as California and Vermont enjoyed (with their “end of life option act” and “patient choice at end of life” statutes respectively) . . .

I will try to steer clear of the pseudonymous quicksand of what these types of medical services provided are called: physician assisted suicide, physician assisted death, (medical) aid in dying, (voluntary active) euthanasia, death with dignity, but it is challenging when there is no clear marker of when living is perhaps coming to a close and dying is well-nigh.    I liked one blogger’s beef with all these euphemisms and her suggestions that we perhaps call it “assisted self-administered lethal ingestion.”  I think this descriptor is best because it is so technical sounding and our new law champions a medical technique, with precious few indicia or garb of a “right” to die.

To wind up, I will turn to a quote from the late poet, novelist and social critic James Baldwin:

Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves in totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations, in order to deny the fact of death, which is the only fact we have.

     James Baldwin, The Fire Next Time

How to identify the boundaries of death versus suicide – where are the distinctions here among all the different labels? Our new law does explain that the actions in accordance with the procedure set forth in the End of Life Options Act do not constitute suicide, assisted suicide, mercy killing, homicide or elder abuse.  Does this move our conversation forward?  Can a law do this?

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

Dementia and Its Disproportionate Impact on Women

Denver Elder Law

Italian Doors

I read with interest Heather Snyder, Ph.D.’s blog post from December 28, 2016, titled “Alzheimer’s Falls More Heavily on Women Than on Men.”  She is Senior Director of Medical and Scientific Operations at the Alzheimer’s Association and suggests that effective approaches to preventing, diagnosing and treating Alzheimer’s and other forms of dementia (I collectively refer to these as AD for convenience) will likely be tailored to a variety of factors which include genetics, hormones and lifestyle – which involve gender.

The National Institute on Aging observes that Alzheimer’s disease is currently ranked as the sixth leading cause of death in the United States, but recent estimates indicate that the disorder may rank third, just behind heart disease and cancer, as a cause of death for older people.

Awareness of this important detail is lagging! According to an Alzheimer’s Association blog post, women in their 60s are about twice as likely to develop AD than are breast cancer.  That 1 in 6 chance for a woman to develop AD at 65 compares with a 1 in 11 chance for men.  A recent study shows that a person with a particular gene variant, ApoE4, which both men and women may carry, poses a markedly higher risk of the disease to women than men.

Observation, as anecdotal evidence, might suggest that because women tend to live a few years longer than men, they are more likely to have dementia, but this doesn’t hold water.  Dementia, and AD in particular, is a disease that tends to last a number of years and the majority of person affected by the disease are older, er. . .  old – meaning 60 “or better.”  The number of people affected by early-onset AD is less than 5% of all persons affected and most of those persons have the familial AD.  But what causes AD in the remainder of the persons with early-onset  AD and the vast majority of older persons diagnosed by the disease remains unknown.

You might have heard the news in late November about a highly touted AD drug, which had looked promising in clinical trials, showed little promise to significantly slow the decline of dementia caused by the buildup of amyloid plaques as indicative AD.  The latest difficulties will certainly move this field forward and trials of another amyloid-targeting medication are due later this year.

Here is a video about a Swedish photographer’s project, Into Oblivion, which shows poignant pictures of French residents (mostly women) living with AD behind locked doors.  Yes, there is French spoken in the video, but the pictures speak for themselves.  In our country of course, most of us don’t refer to this living arrangement as a “protective unit” or “lockdown,” we choose instead to refer to it as “memory care,” as if living in a secure unit implied care for a failing memory!  It raises the ethical issue about whether confinement is care.

I’ll be writing more on those ethical discussions surrounding care of persons with AD.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

November is National Family Caregivers’ Month

Clouds in Water

Clouds in Water

In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population.  November is also National Alzheimer’s Disease Awareness Month.  Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.

As we approach the holiday season, it struck me that it would be a good time to revisit this topic.  The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.

The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes.  Here are some numbers from the Centers for Disease Control:

Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.

Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that

More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.  

Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here.  The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life.  So, that is the bad news. . . so what kind of resources are available to support these caregivers?

There are a range of options to consider of course, as every person or family’s situation is unique.  Perhaps all that is really need is a bit of respite care.  Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver.  Here is a link to the Colorado Respite Coalition, which has a variety of resources available.

The vast majority of caregiving in this country is done by family members free of charge.  For many people however, volunteering these services is simply not a financial option.  Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services.    And here is a link to the eldercare locator, a public service of the U.S. administration of Aging.  The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides.  The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.

Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so.  When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed!  So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.

Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court  – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia.  The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities.  Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Longevity, Dementia and Ventilator Use

Ketring Lake at Dusk

Ketring Lake at Dusk

Longevity and dementia often go together – dementia or episodes of incapacity can be seen in some respects as the side effects of longevity.  A longer life expectancy doesn’t usually mean that it will be the quality of life that a person enjoyed – mobility, autonomy, social engagement, in the early years of retirement age.

In my practice I sometimes meet with a client who is suffering some cognitive decline.  Sometimes the type of brain disease or form of dementia can be narrowed down and other times this is more difficult.  What is vitally important for these persons is to make sure that they have advance medical directives- in the form of a health care power of attorney as well as a living will.

I should warn you that some of this post is based on a cautionary tale.  This evidenced by a recent Reuters article documenting a surge in ventilator use for nursing home residents with dementia.  The study which is the subject of the article documents the number of nursing home residents with advanced dementia – mostly women – who needed to be hospitalized and were placed on mechanical ventilators.  The use of ventilators for such hospital patients, however, did not lead to a better survival rate.  The article is instructive in noting that this is a recent and troubling development:

In 2013, among every 1,000 nursing home residents with dementia who needed to be hospitalized for some reason, 78 were hooked up to mechanical ventilators, compared to just 39 out of 1,000 in 2000, the study found.  Despite this surge, the mortality rate for these patients with mechanical ventilation remained constant at more than 80 percent.

Why is this happening? The study makes several suggestions, but a common sense answer to an important part of the question of how these patients are “ending up” with a hospital stay that includes being hooked up to a ventilator is somewhat obvious to me: these folks have not executed any health care powers of attorney or a living will.  But sadly, what might otherwise be life-prolonging intervention for many patients does not have the same effect for these elder women with advanced dementia.

One explanation of what happens when a patient has not executed a medical POA or a living will has to do with what types of services are available to these patients in the hospital setting.  The article quoted Dr. Gary Winzelberg as observing that “as long as it’s easier to access an intensive care unit bed [in a hospital] than comprehensive hospice and palliative care services in nursing homes, the trend of increasing use of mechanical ventilation for these individuals is likely to continue.”

Our health care system is not exactly “dementia friendly” when it comes to how it copes with the diminished capacity of a patient with advanced dementia who is unable to give informed consent and otherwise meaningfully participate in their health care decisions.  This is one of the reasons it is vitally important for all adults to have “the conversation” with a loved one they trust.   That conversation should ideally lead to the execution of advance medical directives – the kinds of documents that allow a person’s wishes to be upheld.

What seems theoretical and remote to so many people – is vitally important in the event the person with advanced dementia (or some other cognitively incapacitating disease or condition) wants to maintain some self-determination and the person’s family members wish to support the person’s decision to decline medical interventions like artificial nutrition and hydration and intubation (with a respirator) will become much more commonplace in the coming years as the number of people with dementia continues to grow.

So . . .  how do we “work around” these difficult challenges?

– documents relating to decision-making guidance where a person is suffering from either a terminal condition or persistent vegetative state such that they are unable to made or communicate their own decisions.

The bottom line is we must be prepared and willing to help each other through this kind of difficult time in one’s life.  The best way to do that is with just a bit of preparation in the form of a conversation and documented in a health care POA and a living will.  Now is a great time to have the conversation and remember – it should be revisited at least annually!

© 2016 Barbara Cashman  www.DenverElderLaw.org