Author Archives: Dianne Savastano

Managing the Stages of Cognitive Decline

During a visit to his parents’ home over the holidays, our client Jack noticed that his dad, Bill, seemed a bit more forgetful than previously. Jack observed a slight change in personality and a significant withdrawal from all the family events that his father would normally embrace. Jack wondered if his dad’s medications were being taken appropriately as he noticed some still in the pill box at the end of the week.

Bill lives in Arizona during the winter and in New England during the summer. After his dad’s return this past spring,

Jack contacted me about his concerns and we embarked on a plan.

Step One: Communication

Among the actions that need to be taken when cognitive issues arise, the first is always up front and honest communication. This doesn’t always result in a positive experience, but it is worth trying. I suggested that Jack raise his concerns with his parents, to see if they were at all aware of what he noticed. As it turned out, his dad had noticed that his memory was not as sharp, but did not see that as a problem. He dismissed it as simply the result of normal aging.

Jack’s mom, Linda, however, opened up about a series of additional things she had noticed. Having lived with Jack for over 50 years (!), she was well positioned to observe changes. Linda expressed relief at being able to talk about her concerns.

Step Two: Planning

Bill appreciated how concerned his loved ones were about him and agreed to attend a meeting with his primary care physician (Dr. Jay), Linda and Jack.

Prior to the appointment, Jack set up a time to speak by phone with Dr. Jay. He wanted to share his observations as well as those of his mom before the meeting, and asked that one agenda item of the meeting be to address his concerns.

Physicians appreciate this type of pre-communication. It allows them to develop a strategy, and to be efficient and comprehensive in crafting an agenda for an appointment.

Step Three: Assessment

Dr. Jay addressed several items that day, but a major topic was the observed cognitive change. She conducted a Mini Mental State Examination (MMSE) that allowed an objective and measurable assessment to occur. The scoring revealed some concerns that she carefully and sensitively discussed with all of them.

From there, she outlined a plan that included the following:

  • Blood work — to identify if there were any issues contributing to the problems. Testing included examining thyroid function and possible vitamin deficiencies.
  • A brain MRI — to identify if any changes or major issues were contributing.
  • An Overnight Sleep Study — to identify possible Sleep Apnea contributing to poor quality sleep, resulting in fatigue and cognitive changes.
  • A meeting with a neuropsychologist — to conduct more extensive neuropsychological testing that would provide much more detailed information about the function of different parts of the brain.

As of this writing, Jack and his parents are still in the process of evaluation. But they are approaching the point of having adequate information to work from.

Whatever the final outcome, I am confident that Jack has done all he can to provide the best care for his dad.

First, because he was pro-active rather than waiting for a crisis to respond. Not only did he step in when he noticed changes with Bill, he had taken steps a few years earlier to establish a relationship with Dr. Jay.

Second, because he recognized that within his family and among his siblings, he was the one who needed to take on the responsibility for assisting his parents with their healthcare.

Lastly, he understood that as an accountant, navigating the healthcare system and assisting a family member with the appropriate management of cognitive decline was not something he knew much about. He reached out and was open to receiving professional help.

Summary

If you have older loved ones in your family for whom you may be responsible, I highly recommend paying close attention to subtle changes in the lives and behavior of these adults.

It is always best to be proactive and tenacious in obtaining appropriate medical evaluations before a crisis ensues.

My List of Essential Health Care Resources

First, a bit of background…

When I launched Healthassist in November 2004, there were very few private practices dedicated to the delivery of private “Health Care Advocacy / Advisory” services (my terminology for the work we do).

I had the great fortune of some national press, some of which led me to a fellow advisor in California. She founded her practice a bit after ours and was starting a national association. Her goal was simple: To bring advocates together and to educate the public regarding our new profession.

I became a founding member of the National Association of Healthcare Advocacy and things took off quickly. I presented at the first conference (and all subsequent conferences) and served for five years as Treasurer on the Board of Directors. Along the way, we developed Standards & Best Practices as well as a Code of Ethics to benefit and protect consumers.

Fifteen years later, I remain a member of NAHAC’s advisory board. It’s been a wonderful experience and I value the relationships I’ve developed with fellow advisors.

Here then, are some of the best health care resources I find myself recommending again and again to clients, friends and loved ones.

Resources for Health Care Advocacy

National Association of Healthcare Advocacy

“My dad lives in Chicago, and I live in LA. He was recently hospitalized and has now been in and out of the hospital and rehab three times. My brother is there but is not familiar with the healthcare system and it seems no one is communicating. What can I do? Can you help?”

Sadly, this is a common scenario. When we receive a call like this about someone in New England, our team goes into overdrive, acting quickly to assess the situation, introduce ourselves to the relevant healthcare partners and begin to put an action plan in place. With complicated situations, in particular, “boots on the ground” matter. An advocate who can go to the hospital, rehab centers and physician appointments is required.

When we aren’t able to help, I recommend visiting the NAHAC web site and conducting a zip code search for local professionals. When possible, and because I know so many of my fellow advocates across the country, I make a direct, virtual introduction to a local resource.

Massachusetts Resources for Health Care Advocacy

Sometimes, fellow advocates are better positioned to serve a client’s needs. In those cases, I refer callers to the web site of the first regional group of NAHAC, one that I helped to found, known as Massachusetts Healthcare Advocates (MAHCA). We now have 18 members.

AdvoConnection

AdvoConnection is another national directory web site. In addition, it provides a wealth of information and tools for consumers, to help them make smart, informed decisions in choosing a professional advocate.

Patient Advocate Certification Board

A recent milestone within the profession of Health Care Advocacy was the development of certification to “credential” those who work in the field (I’m proud to have been awarded PACB certification this year).

The certification process is rigorous and knowing that your advocate has received this distinction gives you confidence in their level of competence and professionalism.

Resources for Transition to a New Living Environment

“My mom has been considering moving to a retirement community in her area and we’ve heard about many different models and levels of care. Can you help us find the best place for her?”

When I receive these calls, I first explore what is contributing to the decision to make a change. If it is an unstable health-related issue, I suggest first achieving medical stability before a move occurs. Otherwise, I refer these callers to one of my Aging Life Care Professional colleagues.

These professionals, previously known as Geriatric Care Mangers, are regionally based, know their local communities and resources, and are best suited to conduct an assessment on the environmental, safety and psychosocial needs of an older adult. They are fabulous at matching the older adult’s needs to the most appropriate living environment, taking into consideration financial constraints.

The Aging Life Care Association includes a zip code search capability for finding local professionals. Many are trained as Social Workers, while others are trained nurses or other Allied Health Professionals.

Resources for Legal Issues

“My parents don’t have their affairs in order, and I’m concerned. What can I suggest?”

In these circumstances, I ask if the caller is familiar with attorneys certified as Elder Law Attorneys. It’s a specialty that most people are not aware of, so I describe The National Elder Law Foundation (NELF), the national organization certifying practitioners of elder and special needs law.

The National Academy of Elder Law Attorneys is another, similar resource.

Both resources allow national searches on their sites.

Summary

As much as I would like to assist everyone who calls, it’s not always possible.

I have great confidence in the resources noted above and I’m thrilled to be able to share them with you to help keep you and your loved ones safe and well cared for.


Medication List Template — Follow-up from May newsletter

In last month’s newsletter , we recommended a “project management” approach to managing the healthcare of yourself or a loved one. We also shared a template titled Medical Conditions, Surgeries, Hospitalizations.

We recommend using a similar template for tracking medications. You can see and use it here.

The Medication List has multiple tabs to include the following:

  • Daily Medications
  • Herbal Medications and Nutritional Supplements
  • PRN/Occasional or As Needed Medications
  • Previously Taken Medications

Recommended Reading: Healthcare Costs

In hospital settings, the classification of “Observation Status” is something we frequently encounter. The ramifications for care and cost can be catastrophic.

Learn more, here.


One topic that I am asked about frequently is the lack of transparency regarding healthcare costs, a reality that makes it difficult for consumers to make informed decisions.

This article addresses the topic and provides a few examples of organizations working on the issue.

Take Control of Your Healthcare Experiences

Twice during the past two months, I delivered a presentation titled, “Navigating the changing healthcare system.” Once in the form of a webinar and once in front of a live audience.

Within it, I share several strategies, one of which is to prepare and use a Personal Healthcare File that includes a document titled, “Medical Conditions, Surgeries, Hospitalizations.” This recommendation sparked so many great questions during the presentations that I decided to share more about it with you, today.

Medical Conditions, Surgeries, Hospitalizations

When working with clients, we take a “project management” approach. Simply put, that means collecting, tracking and communicating information about yourself and your medical history to your team members and physicians. This allows all involved to work jointly in the creation of an action/treatment plan.

We tend to use Excel, but truthfully, any tool that allows for easy input and changes is fine. Don’t let technology get in your way — even pen and paper works!

Our tool, “Medical Conditions, Surgeries, Hospitalizations,” contains a few more items than the title implies.

It includes the following:

  • Name and date of birth
  • A list of medical conditions and when they were diagnosed
  • A list of surgeries and when they were performed
  • A list of hospitalizations, for what condition and when they happened
  • A list of procedures that were done along with diagnostic testing, for what condition and when they happened
  • A list of immunizations and when they happened
  • Preferred hospital, including the address
  • Preferred pharmacy, including address and phone number
  • Emergency contact(s) along with associated phone numbers

This tool, along with another one for medications (see below), helps physician appointments flow efficiently. (Click here to download a sample tool that you can modify for your own use.)

The medication spreadsheet includes:

  • Name and date of birth
  • Medication(s) currently prescribed and/or prescribed in the past, as well as any supplements
  • Dosage
  • Frequency
  • What the medication is prescribed for
  • Who prescribed it
  • Allergies to medications and other things, including foods, latex, environmental items, etc.
  • Preferred pharmacy, including address and phone number

I know, it may seem like a lot! But remember, even with physicians with whom we have existing relationships (and certainly with new physicians), their medical records may not be up-to-date. It’s up to us to keep the information current. Having this tool in hand will make that so much more efficient.

Where to Begin

Prior to the advancement of electronic medical records and Patient Portals, this type of compilation was hard to create. When working with clients, we were forced to rely on memory and/or the tedious process of formally requesting medical records from all the healthcare systems from which our clients received care in the past.

Today, it’s much easier, provided you enroll in whatever Patient Portals are available to you. Keep in mind, however, that while these may feel comprehensive, they are not easy to access while sitting down with a provider. In addition, if you seek care from a provider that is not in the same healthcare system as your electronic medical record, you are again forced to rely on memory.

A Real World Example

Recently, I accompanied a client who was seeking specialist care for a particular diagnosis — one that could require treatment that has benefits, but that also has potential side effects. I was so pleased to see my client use the “Medical Conditions, Surgeries, Hospitalizations” tool to relay her incredibly complex medical history, previous procedures/testing, treatments, etc.

At one point, while discussing potential treatments, the client’s knowledge of a condition that developed 10 years ago following a medication that was taken 13 years ago impacted the recommendations of this physician. A suggestion to obtain additional diagnostic testing, based on the readily accessible previous testing, was also recommended.

In the end, not only was my client able to quickly and accurately answer the questions posed by her physician, she even asked her if she wanted a copy (the physician enthusiastically said yes)!

The discussion was comprehensive, detailed and satisfying, all as a direct result of the time my client spent taking responsibility for her own experience.

Summary

In the spirit of Sua Sponte,” I highly recommend getting organized and creating whatever tools work best for you. Do this not only for yourself, but also for those in your life for whom you may be a Care Partner.

Before each physician appointment, get in the habit of reviewing your tools to see if any updates are required. This will get you thinking about your medical history and, hopefully, prompt you to prepare an agenda with an objective and specific questions.

I guarantee that if you take the time and the responsibility, you will have a positive experience!