Finally, a Vision for Care Referrals That Will Improve Outcomes

Picture this: you’re one of millions of Americans who needs care at home either because of aging, dementia, recovery from surgery or other disabilities.  You’ve got a family—and often an unpaid caregiver who helps with your care.  They’re part of an elaborate team of caregivers, physicians, therapists and non-medical assistance.  I’ve lived this first-hand as I’ve cared for my mother, and I’ve spoken to literally hundreds of families in the same situation.

Insurance companies and other employee benefit programs often deliver these care recommendations.  They do the best they can considering maintaining these programs—and the underlying data—is not their primary business.  Unfortunately, they struggle to extend these programs across the whole company so that each member-facing group can leverage the same data to provide the best care referrals to their members. I’ve just assumed it was one of those “not-yet-solvable” situations, as healthcare technology is always a bit slower than other industries.  So we did the best we could and used what was not an ideal support system.

The Future of Care Referral Programs

I think I finally found a vision for the future.

I ran into a white paper from SNAPforSeniors that really caught my eye.  If SNAP can deliver on this vision—and if insurance companies, call centers and other providers have the vision and foresight to adopt it—it will dramatically change the outcomes of care coordination as part of the age in place movement.  More important, it will give families like mine the peace of mind that we are getting referred to the best matched providers for our care.

I know this vision may not concern some of you, but I highly recommend you check it out.  These types of ideas are the ones that are going to make the biggest impact. If you think your family would benefit from your insurer adopting programs like this, you should let them know.

Here’s the link to the paper – http://bit.ly/aPPsWU.

Jan’s Story

Jan's StoryThe following is a guest post from Barry Petersen, Emmy Award-winning CBS News correspondent and author of “Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s”

When does a marriage die even if the love never does?

We are not talking about the kind of rifts that can lead to divorce. We are talking about when someone fades and disappears so far away mentally, that there is no longer a relationship.

A hypothetical question? Not in my life, and very soon…not in the lives of millions of unprepared Americans. As Baby Boomers age, more and more couples will face this…one with a mind diminished and slowly being erased, the other healthy and vibrant. There will be many travelers on this journey.

The reason is Alzheimer’s Disease. I first heard those words in 2005 when my wife, Jan, was diagnosed with Early Onset Alzheimer’s. She was 55. At first, I cared for her by myself. I am a CBS News Correspondent and at that point we were based in both Tokyo and Beijing, traveling between the two cities. Then, as Jan worsened and because of my need to travel for my job, I hired a live-in caregiver, a retired nurse from Tacoma, WA.

Finally, in May, 2008, I made the decision that ended our shared life as we knew it; I placed Jan into an assisted living facility in the United States. I kept living in Asia, continuing to work, and each time I went back to the US and visited her, I could mark the changes as she spiraled downward.

I learned to accept that she no longer knew me when I came to visit. The Barry she remembered is someone deep in her past, not the man in front of her today. There were tears about this, but always in private, never in front of her. She would not have understood, and that would have frightened her.

Yet it ripped at my soul. This woman I had wooed and won, who had shared adventures living in Asia and London and Moscow, who had once been a successful foreign correspondent in her own right, had gone away.

People who know us would use one word to describe us: “BarryandJan,” because we so loved being together. Now, she was adrift somewhere else, and the Alzheimer’s meant she could not tell me where she was, or why, or what it was like there.

And there was guilt. Who cannot weep when the one you love disappears, who cannot feel the rage I felt, asking myself: “Why her. Why not me?” Jan was the better person of us as a couple, the bright star in whose glow I happily lived. She was the good of us. Who had the right to take that away.

And in time there came the hardest question of them all: Is it still a marriage if only one person is mentally present?

In that answer lies the future…to spend the rest of my life alone, even though Jan had gone away? Or – decide that I needed to go on with life.

To move on was to tempt the rage of those who told me I was violating my wedding vows. Their morality was clear – the vows say ‘till death do us part,’ and that is what people have forever promised.

Jan's Story 2Except now, people live longer, and that means Alzheimer’s comes more often because the major risk factor is simply … growing old. One in eight people over 65 have Alzheimer’s. Almost one in two will have it by age 85, according to Alzheimer’s Association. And 85 isn’t that old anymore.

There were others who told me it was time to accept that my relationship, and with it my marriage, had changed and that I was alone. I was surprised at some who said it. A couple I know who have been married, happily, for decades – people I thought would be strongly pro-marriage at all costs and would tell me never to break those vows – were among the first and most adamant to say: find someone to be with, create a new life, do not surrender to loneliness, do not fold up, dry out, and die.

Dying was an option. I thought about it, faced with the sense that I had lost the one reason for getting up and going to work and enduring Shakespeare’s “slings and arrows of outrageous fortune.” My fortune was dark and doomed, or so it seemed.

It was time to make a call. I could not keep going on as I was, finding solitary friendship in ever more late night alcohol.

I reached out, not well at first, after a friend signed me up for an internet dating site. I set one rule – that I was honest about still caring for Jan, yet willing to explain that the marriage, the relationship, were victims of Alzheimer’s. The marriage, as I defined it, was gone. Finished. But if someone could understand and accept that, they also had to understand that Jan was still with us, still alive, and I was still her husband and the man who was watching over her. Jan and my care for here was a part of the package.

There were women who instantly rejected me for this, and I understood. There were others who wanted to move quickly into a relationship, and that I also understood…and rejected. Frankly, they scared me off.

In time, and with time, there was one. Mary Nell is a widow, wise in the ways of grief, who understood the being alone part far better than I, and accepted that this would be an unusual pairing because we would not be two, but three. Our relationship would include Jan.

And so it does. Mary Nell and I go together to visit. Jan can’t remember her name, but remembers that Mary Nell is a friend and throws her hands open for a big hug and hello. Even though we are together, Jan sees no connection between Mary Nell and me. And Mary Nell sees Jan as a friend, someone she now cares and worries about. It is more often Mary Nell who says…we need to bring flowers, we need to get her new shoes, or she’s out of her favorite lipstick.

The moment we leave, Jan forgets that we were ever there. She forgets the flowers we bring, or the songs we sang together as I played the piano for her.

Mary Nell and I call ourselves the “New American Family,” and perhaps we are a Marriage of Three. We surely are the precursor of the tsunami of dementia and Alzheimer’s and difficult decisions to come. We will soon be joined by millions of “New American Families.”

I do not consider that comfort. I do not want anyone else to travel this dreaded path, but it is happening. Each diagnosis, and there is one every 70 seconds in this country, will bring others to this precipice.

I have no answers for others, offering only what I have done and learned and chosen, knowing that it was right…for me.

I wish them luck. Like me, they will need it.

About the Author: Barry Petersen is an Emmy Award-winning CBS News Correspondent who has reported on everything from wars and natural disasters to Paris fashions, Welsh choirs and the return of American Jazz to Shanghai, China. His stories have been datelined from virtually every continent in a career that spans more than three decades. Petersen wrote his first book, Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s published in June, 2010, about the struggle he shared with his wife, Jan Chorlton, who was diagnosed with Early Onset Alzheimer’s Disease at age 55 and is now in an assisted living facility. Jan was also a CBS News journalist, reporting from both Japan and the former Soviet Union for CBS Radio, CBS Sunday Morning and the CBS Weekend News. Petersen is currently based in Denver, CO, where he reports for the CBS Evening News with Katie Couric and CBS Sunday Morning with Charles Osgood. Visit www.barrypetersen.com.

Dementia and Type 2 Diabetes

Dementia and type 2 diabetes are serious concerns for older adults. Both diseases are becoming epidemics in this country. The Alzheimer’s Association has become a household name, and many people know of someone who has participated in a Memory Walk. Type 2 diabetes is a disease that was once called adult onset diabetes, but that term is no longer used because younger and younger people are developing the disease. In fact, the current generation of children is the only cohort in the history of humankind at risk of not out living their parents because of obesity related diseases.

Being overweight is not good at any age, and it begins to affect the brain. “Being fat has a detrimental impact on the brain,” says Kaiser Permanente research scientist Rachel Whitmer. She is the co-author of a nine-year study of 10,276 people in Northern California that found people who are obese in middle age (body mass index of 30 or more) are 74% more likely to develop dementia than people of healthy weights.

Benefits of exercise

Physical and mental exercise can prevent type 2 diabetes and dementia.  Numerous studies have proven that exercise is beneficial when it comes to diabetes.  Now researchers are beginning to see the benefits of exercise when it comes to dementia.  A study from Seattle Washington found people who exercised at least 3 times per week were less likely to develop dementia than those who were less active. The American Academy of Neurology recently published the result of a study of more than 700 older people in Chicago that concluded, “a cognitive active person in old age was 2.6 times less likely to develop dementia and Alzheimer’s disease than a cognitively inactive person in old age.”

Diabetes and the brain

It’s known that there are cells in the brain that sense blood sugar levels (called glucose-sensing neurons). New research shows that in type II diabetics, at least some of the neurons that are supposed to sense rises in blood sugar aren’t doing their job. Many physicians think of type II diabetes as solely a disease of the body, but we may need to start thinking about it as a disease of the brain as well.

The point is maintaining a healthy body is just as important as maintaining a healthy brain. So when you are between crossword puzzles, start jogging!

Photo credit: jeffdiogenes

About the Author: Ryan Malone is the founder of InsideElder Care and author of the ByFamilies, For Families Guide to Assisted Living. He regularly speaks and advises families about how to improve their aging loved one’s quality of life. Ryan is also the president of SmartBug Media, a content marketing agency that helps companies increase leads, customers and influence. You can read more from Ryan on the SmartBug Media blog or follow him on Twitter.

How to Choose a Caregiver

The title of caregiver is not as obvious as it may seem.  Caregivers can aid in eldercare on many different levels and depending on your needs their roles can provide key benefits.

Benefits of caregivers

Your eyes and ears: Whether you live close by or far away, a caregiver can observe and update you on areas of nutrition, hygiene, activity level, services and other daily issues.

A concierge: Scheduling and staying current with weekly and monthly activities such as doctor’s visits, shopping, hair appointments, and therapy requires phone calls and follow up.  Allow the caregiver to take some of this off or your mind and your to-do list.

An influencer: Communication and opinions by close family members are sometimes not seen as being objective or carry as much weight as a professional caregiver.  Therefore it may be easier on everyone if the caregiver steps in at times to advise the patient rather than a family member.

Finding a caregiver

Before you choose a caregiver, you should determine the range of services you want so that you are making a decision that covers your predetermined needs.  Consider the following:

Make a list of daily activities: By reviewing the activities of a typical day of the patient you will be able to determine the specific duties required.  It helps to create a timeline of activities so that you plan for meals, naps and regular appointments.

Assess the degree of specialty: If the patient suffers from any degree of dementia or physical disability make sure you look for a caregiver with appropriate knowledge and experience.

Determine the need for meal preparation: Not only should you make a choice for a caregiver on their ability to prepare meals if necessary, but also their understanding and ability to create diet-specific meal choices.

Once you have your specific needs list refined, go to the following resources to be connected to the appropriate pool of caregivers to begin your interview process.

Additional resources:

www.caregiverlist.com

www.caregiver.com

10 Caregiver Questions

To make the most of your time during the interviewing process, conduct preliminary interviews on the phone rather than starting with in-person appointments.  Describe the job in detail along with the required hours needed and wages available.  If you feel the applicant may be a good match based on their experience and ability to provide references, then schedule the in-person interview.  It is a good idea to have another family member or friend participate in the interview to provide an objective perspective.  Finding that great match may be easier with a second opinion.

In preparation for the interview, create a list of questions pertinent to the job description.  Ask questions relevant to the caregiver’s experience and expertise surrounding the daily activities list you previously created.

  1. Where have you worked before?
  2. What were your duties?
  3. What type of patient medical limitations have you worked with in the past?
  4. What is your experience cooking for other people (including dietary restrictions)?
  5. Is there anything in the job description that you are uncomfortable doing?
  6. Have you had to deal with a patient emergency in the past?
  7. Can you keep track of and administer medications?
  8. Would you be able to transfer someone from a wheelchair into a car or into a bed?
  9. How do you feel about caring for a disabled person? Or a person with memory problems?
  10. Can I contact at least two work-related and one personal reference?

If you need a template for a caregiver interview, download this form as a guide:

http://www.agis.com/Document/38/professional-caregiver-interview-form.aspx

Once you narrow down your field of applicants, make sure you observe the applicant’s interactions with your family member on a casual basis before making a decision.  If your family member is able, he or she should be included in the interview process and in making the final decision.

Consider the person most qualified for the job and with whom you feel most comfortable. Always check the references of at least two final applicants. Good applicants may have more than one opportunity at a time, so don’t wait too long before proceeding with an offer.

How to Background Check Your Home Care Provider

Whether you are a family member trying to choose the right home care company for your loved one, or you are a provider interviewing potential applicants, background checking is critical.

Eldercare abuse comes in many forms: financial, emotional and physical.  Being proactive about the selecting a home care provider can help you avoid worry, heartache and financial and potential legal action.

Example: Check-Cashing Fraud

Within months of hiring an in-home caregiver for her two aging parents, a woman in San Diego was notified by the Sheriff’s Department that the caregiver had opened 30 credit card accounts in the parent’s name and purchased three vehicles worth $50,000 with those credit cards. In addition, the caregiver had also convinced the elderly couple to provide her with power of attorney and then managed to have them sign over ownership of their house, valued at $650,000.  Further investigation of the individual revealed she had prior convictions for check-cashing fraud 10 years ago.  However, the background check only covered the prior 7 years of criminal history.

Knowing your home care provider does background checks is just the beginning. Not all background checks are the same and not all companies exclude potentially dangerous applicants based on the same criteria.

Questions to Ask Your Home Care Provider

  • How many years back in the person’s history does the check cover?
  • Does the check reflect both criminal and civil records?
  • Does the company check licensing status across state jurisdictions?
  • Are credit reports run?
  • Are Department of Motor Vehicles records obtained?
  • Are gaps in employment history verified?
  • Do they make the phone calls to references or are they outsourced?
  • Is evidence of education provided and confirmed?
  • What criteria does the company use to deny employment?  What offenses are tolerated?

Choose the provider with the most stringent background checking protocol.  If the provider cannot answer these questions, find another provider.

New Federal Database of Dangerous Caregivers

More than two decades ago, Congress demanded that a national database be available for hospitals to check for disciplinary actions taken throughout the country against nurses, pharmacists, psychologists and other licensed health professionals.   The database became available as of March 1st but there is some skepticism regarding the thoroughness and accuracy of the records.  When the information on this federal list was compared to the individual state records, they did not match up.  The reason for this inconsistency is due to the fact that some states filed incomplete records.

Although both the state and federal agencies continue to push for strong regulations of home care providers, you need to take an active role in making sure the right questions are being asked and the screening process is up to your standards.

Photo: ivers

Your Senior Health Care Bill: $260,000!

I have always been a big fan of Howard Gleckman, author of Caring for Our Parents.  In fact, he was the very first person I interviewed for my Leaders in Elder Care series.  If you aren’t familiar with Howard’s blog, you’re really missing out on a complete play-by-play of how the health care debate is impacting the cost of senior care.

This morning, he shared some startling statistics about paying for elder care that I have quoted below.  In this article, Howard has links to some fascinating studies about the out-of-pocket costs for seniors, and it is shocking.  It is mind-boggling to me how financing elder care will be solved as we move forward. He wrote:

A typical couple would have to save nearly $200,000 to pay for their out-of-pocket medical costs from the time they are 65 until they die, according to an important new study by the Center for Retirement Research at Boston College. Add in nursing home costs, and they are likely to need $260,000.

But that’s only part of the story. About 5 percent of 65-year-old couples will face catastrophic medical and long-term care costs exceeding $570,000, according to researchers Anthony Webb and Natalia Zhivan.They estimate those expenses would have exhausted the total financial assets of 85 percent of all retirees even at the peak of the stock market in 2007.

As someone who has first-hand experience with out-of-pocket expenses and my Mother’s care, I was still so stunned by these numbers, that I could not write a conclusion to this article.  What do you say?

Obviously, I encourage you to check out Howard’s writing.  In the meantime, what are your thoughts about these big numbers?

Photo: bubble dumpster

Assisted Living Saved My Mom in Oregon

A couple weeks ago I had the pleasure of traveling to Oregon to speak at three assisted living communities across the state.  I posted some pictures of the event on the Inside Elder Care Facebook page at http://www.facebook.com/eldercare.  Brookdale brought me up from California to visit three communities—all from distinct areas within Oregon.  They were:

  • Albany – small towns set in an agricultural area just southeast of Portland
  • McMinnville – right in the center of Oregon wine country
  • Gresham – at the base of Mount Hood (yes, I was cold)

At each community, I gave a talk entitled Assisted Living Saved My Mom—a presentation communities ask me to give that provides an insider’s view about how to determine which assisted living community is best for your family.  Assisted Living Saved My Mom shares many techniques that uncover information you would never get from just speaking to an admissions director.  Brookdale provided a copy of my book to each who attended—something appreciated by the attendees.  Based on the large amount of feedback I received from attending families and people in the industry, the message really hit home and benefited many people.

Despite the obvious differences in the locations of each of these communities, I found a few things in common:

  • Warm and friendly: nearly every person I met—from the staff to the residents—were very welcoming and warm.
  • Pride: there is a strong sense of pride in the residents that carried over to their feeling that it was their responsibility to make new residents comfortable.
  • Camaraderie: I got the feeling that the residents genuinely enjoyed each other’s company. You could tell because they all knew each other’s little quirks and habits—something they found amusing.

One thing that came up repeatedly was the concern over “How do I pay for this stuff?” Many people were surprised there were other payment options beside just selling their house and paying cash.

When I wrote the By Families, For Families Guide to Assisted Living, I interviewed nearly 200 families to ask them about the concerns related to assisted living and elder care.  The issue of paying for elder care came up as a primary concern from almost three-quarters of those families.

The financial issues are the elephant in the room.  Most people don’t know how to solve them or even where to start, because there is no holistic guide for families on how to navigate these issues.  I am a month or two away from releasing my second book that gets into these answers—the feedback from those that have seen it has been really positive.  Stay tuned.