Author Archives: Dianne Savastano

Recommended Reading: Gardening

In our family, the vegetable garden at the “Beach House at Buttonwoods” has a long tradition. It began with my “Pepere” (grandfather), was passed along to my “Memere” (grandmother), and then to my mom. These days, at the age of 90, it is my dad who does the planting. 

As my husband Bob and I assisted him this year, this lovely article about gardening came to mind.


This paper is a systematic review of quantitative studies conducted on the benefits of garden visits and gardening therapy for people with dementia.

Cognitive Decline: Act Sooner, Not Later!

Families with a loved one experiencing cognitive decline are often slow to recognize and respond to the signs. This is understandable… the information is new and they may not yet be ready to accept what is happening. As a result, they make several common mistakes, thereby missing the opportunity to achieve outcomes that are in the best interests of their loved one and the family.

We counsel many families in this situation. Here is what we advise…

#1. Seek an Evaluation Immediately

Once cognitive changes are noticed, it’s important to establish a baseline of functional abilities by means of a professional evaluation. This is the most reliable way to measure progression over time.

An evaluation generally begins with a cognitive assessment in a primary care setting. If issues are identified utilizing objective and measurable in-office testing, additional neuro-psychological testing and specialist care is recommended to reach a more conclusive diagnosis and develop a treatment plan and roadmap.

It’s important to remember that a change in behavior may be the result of a medical issue, such as an underlying infection or vitamin deficiency. In those situations, when appropriate treatment is implemented and cognition improves, we all breathe a sigh of relief.

#2. Don’t Ignore the Problem

One mistake I repeatedly see families making is relegating a change in cognition to “normal aging” and thus not acting soon enough (if at all). However, delayed action may forgo the opportunity for early interventions that can slow the rate of progression, thereby promoting the best quality of life possible given the situation.

Sometimes, families are simply in denial. They may not have the energy or time to devote to the problem, or the relationship with the family member with cognitive decline may already be fraught with tension. In these circumstances, it may take a traumatic fall, a call from a concerned neighbor, or even police involvement before any action is taken.

In other cases, families face strong resistance from their loved one, often resulting in angry conversations. This may be due to a complete lack of awareness on the part of the person with cognitive issues, but more often, it is simply a fear of losing control. 

Each of these situations can be difficult. Still, as the caregiver, you must find a way to overcome these barriers through education, grit, and perseverance.

#3. Talk About the Condition

Even in circumstances that are warm and supportive and in which appropriate actions are taken to achieve a diagnosis, families are often reluctant to talk with one another about the condition. They may be in denial or simply fear upsetting the person experiencing cognitive decline.

One helpful tip is to name the condition. For example, one of our client families calls it “memory issues.” Naming helps to normalize the situation and provide a framework within which the family can plan together.

Now, when the loved one asks questions — Why am I seeing this physician? Why am I taking this medication? Why don’t you want me to drive? Why can’t I stay alone? Etc. — the family can respond simply and consistently: “You have some memory issues that the doctor has identified and we want to keep you safe and healthy.”

Said often enough and matter of fact, the loved one will usually respond by saying something like, “Oh, that’s right, I have some memory issues.”

#4. Don’t Wait Too Long to Initiate Outside Help at Home 

Once a diagnosis is made, families often commit to caring for their loved one at home for the rest of their lives. This is admirable, and a goal we completely support. However, one person doing all the caregiving may not be sustainable. 

As cognition declines and more care is needed, it may be beyond the capacity of the caregiver, especially if there is no opportunity to take regular breaks and conduct the business of life. The caregiver may even inadvertently sabotage their goal of keeping their loved one at home if they themselves become ill or suffer a crisis.

A better approach is to integrate regular schedule in which someone else takes caregiving responsibility for set periods of time during the day or week. Having someone else in the home can become normalized if it is part of a routine — routine is key! Adult day health programsare very helpful in these situations as well.

#5. Don’t Wait Too Long to Identify Alternative Living Communities

Families often fail to realize that at some point, an alternative living community may be the only option. Although it is difficult to say, I often find myself explaining that things are not going to get better. 

By investigating available services and researching communities early on, caregivers can evaluate settings based on defined criteria, some of which may have greater priority than others. 

We suggest a systematic approach in which criteria are outlined and weighted in terms of importance so that settings can be rated and evaluated quantitatively and top choices identified. 

#6. Care for the Caregiver

We worry about the caregiver as much as the loved one experiencing the cognitive change. They may find themselves overburdened, resentful, and even ill. If something happens to them, there may be no one else available to step in, at which point a rushed, unplanned transition to an alternative living community may be the only option. 

Such situations are traumatic for everyone and result in decisions being made quickly, disallowing the opportunity for the due diligence necessary to identify an optimal setting.

Plan Now for the Future 

As the baby boomer population ages, the total number of people with Dementia is expected to rise. If current trends continue, more than 9 million Americans will have dementia by 2030 and nearly 12 million by 2040. 

By looking ahead at the trajectory of a loved one’s decline and taking proactive steps to set goals and manage change, families can reduce suffering, prevent unnecessary crises, and promote the best quality of life possible for those experiencing cognitive decline and their caregivers.

Seeking the “Perfect Patient Experience”

I hear lots of negativity in my discussions with friends, relatives, and clients regarding their respective healthcare experiences. That’s understandable; our healthcare system can be complicated and overwhelming. But it makes me sad, because I know that the individuals who work in healthcare do so in order to help others.

Fortunately, many individuals and organizations are working diligently to make positive changes. For example, last week, I attended an event about “Lean Thinking Principles.” It reminded me of a recent “perfect patient experience” of one my clients — an experience that was the result of a particular hospital’s commitment to this type of improvement process.

Lean Thinking Principles

Lean Thinking Principles encourage the practice of continuous improvement and are based on the fundamental idea of respect for people. 

That’s the opposite of disrespect for people — allowing them to work in broken/dysfunctional processes time and again, yet still expecting outstanding results.

The five principles of Lean Thinking include:

  1. Defining value from the standpoint of the end customer
  2. Mapping the “value stream”
  3. Creating flow that removes barriers from delivering value
  4. Using a “pull system” to remove barriers that get in the way of helping the next customer
  5. Pursuing perfection

The first four steps are focused on removing waste from the system and are all important. But to me, it’s the fifth step — pursuing perfection — that is most vital. This is about imbedding the practice of ongoing improvement into the organization’s culture in a way that is felt by consumers, regardless of who they encounter within the organization.

Continuous Improvement in Practice

Six years ago, I wrote about my dad’s perfect patient experience when he had knee replacement surgery at a local hospital. Recently, I guided a patient through a total hip replacement at the same location. Once again, we could not have been more pleased. 

The fact that there were six years between encounters with this organization and that the second experience was as positive as the first, reinforced the notion that this organization’s culture is one of continuous improvement. Here are just a few things I observed:

Fabulous pre-surgery communication. Where to go, how to prepare, what to expect on the days of surgery and discharge, how to be prepared when back home. (As an aside, the surgeon mentioned that despite multiple other job offers, he chose to work in this setting specifically because of the culture and commitment to improvement.)

Pleasant and informed staff. Every person we encountered, from the pre-op experience through discharge, was agreeable and helpful. For example, as I was leaving the hospital unit late the night of surgery, I must have looked a bit lost. An employee asked if I needed help and, instead of just directing me, escorted me to the exit. He said, “we always help visitors this way.”

Proactive, real-time communication. There was an electronic communication board in the waiting room that allowed me to “follow” where my client was. Additionally, the woman overseeing the waiting room frequently checked in verbally — just to be sure I didn’t need anything.

In-person and private communication with the surgeon to review status. This happened consistently with every waiting family member.

Well-coordinated teamwork. The patient unit team consisted of nurses, aides, physical therapists, dietary personnel, and housekeepers, all of whom were competent and fully engaged. They seemed to really enjoy interacting with us!

Short wait times. We waited just three minutes for the wheelchair transporter to take us downstairs and help us into the car. Such short waits are not the norm! This reflects the quality of the hospital’s internal processes and its respect for patients.

What You Can Do

Of course, not every healthcare institution is as well run as the one described above. And so while I counsel clients to start each healthcare encounter expecting the perfect patient experience, if things do not go as expected, we must participate in the process to improve it.

Some suggestions…

Research

Visit your physician or healthcare setting’s web sites and look for information regarding process improvement efforts. As you prepare your agenda for physician appointments, place this topic on the agenda so you can discuss how quality is measured and improved. Clinical protocols are derived from data, so ask about how that data led to protocol development and how it continues to be measured.

Feedback

Participate in surveys and offer specific comments and examples. Ask for a phone call if something did not go well. I always start by thanking them for soliciting feedback and may respond like this: “I felt _________ encounter could have gone better. Please help me understand what factors may have contributed to a non-perfect experience.” This helps to create a dialogue and facilitates being heard. Be prepared with specific suggestions about how the experience would have had greater value for you.

Participate

If you have the time and inclination, join a Patient Family Advisory Council (PFAC) and participate in formal process improvement events. When I was a member of a Patient Advisory Council for a large physician practice, I represented the patient’s voice by participating in a full-day Kaizen Event that entails assembling a cross-functional team to address specific problems in a short period of time.

Summary

In life, we are often faced with the choice of looking at challenging systems, like the delivery of healthcare, from an optimistic or a pessimistic perspective. I choose the glass-half-full approach and try, however I can, to become part of a culture of improvement rather than one of negativity. 

It is my hope you will join me in this pursuit, so that we may all enjoy more perfect patient experiences!