Wednesday, May 27, 2009

He's Your Dad, Too

There is a very interesting commercial produced by Liberty Mutual as part of their It shows a man and a woman driving through empty city streets in the pouring rain. They stop in front of a diner and see an elderly man dancing in the rain---no umbrella. The woman, obviously distressed, comments that Dad can’t live on his own anymore. The man turns to her and says, “What are you going to do.” She responds with some asperity that this is his Dad too. “You’re part of this family.”

What struck me right off? The woman is driving and looks very worried. The man is sitting on the passenger side---kind of slumped down---almost sullen. Right away you get that the woman has two problems: the parent who has dementia and a sibling who is signaling in multiple ways that this is no concern of his.

The day I saw this commercial, I had done a consult with a family whose mother has Alzheimer’s disease. Now in her early eighties, she is in an assisted living facility. She has enough money to cover the costs for the next 2+ years. Her children blithely assured me that once she had spent down her assets, government aid would pay for her nursing home care (Medicare and Medicaid).

My questions to them were: How can you be so sure? What’s plan B?

If they’re reading the same newspapers I am, it is conceivable that the increasing needs of the aging population and the economic recession are producing a perfect storm. Will federal and state budget deficits allow government to continue to be in the nursing home business? If not, what happens to people like my client’s mother?

If there is a chance that this family will have to share the cost of private pay for their mother’s care in a couple of years, it might be a good idea to confront that possibility now.

Saturday, May 23, 2009

Caregiving Decisions: What is the right thing to do?

Right for whom? Right for now? What about later?

Caregiving often requires hard choices about priorities---how to allocate scarce resources like time and money. How do we make these decisions in a way that works for us as individuals? How do we make these decisions in tandem with others who are also part of the equation?

Suzy Welch, in her book 10-10-10, 10 Minutes, 10 Months, 10 Years, A Life-Transforming Idea, offers a deceptively simple technique for evaluating priorities and making choices. Basically one asks oneself what will be the consequences of a particular choice in 10 minutes, in the next 10 months, and in the next 10 years. Of course no one has a crystal ball with which to accurately predict the future, but we can use our intellects to gather facts and our imaginations to describe probable outcomes.

Then comes the real challenge: making a choice. Even if the decision is not to make a choice at this time---one has examined the probable consequences of not making a choice.

Sound too existential? Think about this. The commitment to care for a parent or spouse or whomever is a commitment to dedicate resources. This often means transferring resources from one use or one person to another. Paying for nursing home care for a parent might mean less college tuition for a grandchild. Staying home to take care of someone might mean one less paycheck.

Thousands of families are already facing these hard choices; making these decisions. Many wonder if they are doing the right thing. Many feel torn between responsibilities to their parents and to their children. Using techniques like 10-10-10 can help us articulate the decision-making process and identify the values that underpin our choices. This can provide a place of peace when worry and doubt threaten to overwhelm us.

Wednesday, May 20, 2009

Mini Nursing Homes

Another set of statistics in Maria Shriver’s e-mail to The Huffington Post ( provided backup to one of my major themes---more and more homes are becoming mini-nursing homes. She tells us:

“Seventy percent of people with Alzheimer's live at home, cared for by family and friends. There are nearly 10 million Americans providing 8.4 billion hours of unpaid care to people with Alzheimer's disease or other dementias - valued at $89 billion. And believe it or not, there are getting to be almost as many kids actually "babysitting" a grandparent with Alzheimer's at home as kids babysitting children. That's where we are.”

Let’s see, that’s somewhere in the neighborhood of how many million mini-nursing homes? Maybe we could call these nursing homelets.

These nursing homelets are unsupervised, unregulated. Families and friends are often dealing with complex challenges. Completing simple activities of daily living (toileting, bathing, dressing, eating) can become ordeals. Behavior problems like uncontrolled anger and anxiety, rummaging, and wandering can be major challenges even to someone who is trained in this work.

What about the person who isn’t trained? Who might not be there by choice? Is it any wonder that tempers flare? That it becomes easier to forgo the bath or the meal or the medication?

What can we do? One idea is that health care organizations providing medical care to someone with a neuro-degenerative disease also provide oversight of these mini-nursing homes and ongoing training and support for those caregivers. There could be an initial home visit at the time of diagnosis with additional elective visits either at the request of the caregiver and/or the client or mandatory visits if medical professionals perceive problems with care, i.e. weight loss, poor hygiene, bruising, etc.

Another is to set up an on-demand cable channel showing programs that deal with just these issues. Programs already exist at many health care institutions: how to lift a person; strategies for bathing a resisting adult; short courses on specific diseases and treatments---but you have to go there for access. Caregivers often have little free time. I can tell you from experience that when I get time away from a client I am not going to a library to read up on their situation. I want to get as far away from the reality as possible. But at 9 in the morning, faced with a dementia sufferer who doesn’t want to eat or take a bath---it would be so helpful to be able to see a program that shows strategies for accomplishing these activities.

Friday, May 15, 2009

Maria Shriver describes Alzheimer’s disease: A Baby Boomer Epidemic

Maria Shriver, First Lady of California, wrote in a blog on

“I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."

It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.”

What a contrast with the 24-hour news cycle about the current flu which to date has affected a few thousand and caused (thankfully) relatively few deaths. It is also worth noting that an individual sufferer deals with flu for a matter of weeks. Decline and death from Alzheimer’s is often measured in years if not decades.
How do we make the invisible visible?

The HBO special on Alzheimer’s is a great start. Taking a cue from the current flu crisis I went to The website has a wonderful map. Visitors to the site can click on each state to see the number of flu cases reported including any deaths.

What about a site Where we could click on each city to learn how many individuals with Alzheimer’s disease reside there? Of course it would be great to have this kind of visual presentation available for every disease.

As of now, most media attention about illnesses related to the aging process come from the pharmaceutical industry, i.e. advertising their drugs to treat Alzheimer’s, selling power chairs, or the like. Naturally their messages are geared toward the products they are selling. These commercials usually suggest that the viewer speak with his/her doctor about this or that condition.

Is the doctor’s office the only place for discussions? Are these subjects that only affect the individual?

No and No.

Wednesday, May 13, 2009

Alzheimer’s Disease---A Different Kind of Pandemic

Yesterday I watched "The Alzheimer's Project," a four-part HBO documentary which looks at the faces behind the disease and the hope for a cure. Anyone can watch these programs for free online at the website for the National Alzheimer’s Association.

The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.

The numbers are mind-boggling:

• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.

The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.

What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?

How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?

I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.

All illness is local. All aging is local. All politics is local.

Monday, May 11, 2009

The Five People You Meet in a Pandemic…

I am a member of The Hastings Center---an independent, nonpartisan, and nonprofit bioethics research institute founded in 1969. To quote from their home page: The Center's mission is to address fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies.

During the recent flu flurry I checked to see if the Center had published anything on the flu pandemic. I found this treasure written by Nancy Berlinger and Jacob Moses: The Five People You Meet in a Pandemic—And What They Need from You Today. (November 2007)

The five people (truck driver, gatekeeper, triage officer, janitor, and public health official) each represent a group of first responders. Each has needs and complex responsibilities to the community. The authors ask important questions about health care during a pandemic, for example: incentives, public education, collaboration, fairness, end-of-life care, training for triage, and rationing supplies. They urge public and private sector leaders to recognize the duty to plan, the duty to develop rules and tools for first responders, and the duty to be accountable to one another. The also urge that ethics be given a seat at the planning table. The report ends with these words:

“All of these decisions are hard decisions. To say these decisions are too hard to make today is to shirk our duty to plan, and to make the duties of first responders even more difficult.

And to say Americans won’t plan, or won’t ration, or won’t care about others---and will no longer trust the public sector to be on their side---is to allow cynicism to triumph over civic responsibility and the public interest. In considering these five people, pandemic planners must show the rest of us how we will care for one another, as communities and as a society, in perilous times.”

My question is---how do we apply this commitment to planning, to confronting hard choices to less sexy illnesses that afflict millions already---like alzheimer’s disease? The chronic, debilitating illnesses of old age?

Do only contagious diseases merit a community response? Qualify for public and private sector planning?

These questions are vital. I think we make an artificial dichotomy between contagious disease and non-contagious disease. We see the former as a community issue requiring planning/preparation and the latter as a private tragedy/responsibility confined within the home. Yet anyone who has had an illness or cared for someone through an illness process has met the truck driver and the gatekeeper; has confronted the ethical challenges of collaboration, fairness, end-of-life care, triage, and rationing supplies.

All illness is a community issue. All illness mandates planning by both the public and private sector.