mental health explainer

What is Lewy Body Dementia, the disease that killed Robin Williams?

Lewy bodies were found in Williams’ brain only during his autopsy, his wife has revealed.

“Terrorist inside my husband’s brain.” That is how Susan Schneider Williams, wife of the late actor Robin Williams, described Lewy Body Dementia, which she says devastated her husband’s life in his final days. Like many people suffering from the disease, Williams’ was wrongly diagnosed. Only the postmortem after his suicide in 2014 revealed diffuse Lewy Body Dementia in almost his entire brain and brain stem.

Lewy Body Dementia is the second most common form of dementia, and accounts for about 20% of dementia cases around the world. In India, an estimated 3.7 million people suffer from dementia, of which approximately 5% or 185,000 people have Lewy Body Dementia, according to a report by the Alzheimer’s and Related Disorders Society of India.

Lewy bodies are deposits of the protein called alpha-synuclein inside brain cells. Alpha-synuclein is normally abundantly present in the brain, especially at the ends of neurons, in a soluble form. When the protein aggregates as insoluble fibrils in brain cells it gives rise to pathological conditions like Lewy Body Dementia and Parkinson’s. Lewy bodies are named after Dr Frierich Lewy, a German scientist, who first identified the protein deposits in the brain in 1912.

Psychiatric presentation

Not unlike Alzheimer’s disease, people with Lewy body disease experience problems with memory and judgement. People with Lewy’s disease could also have symptoms associated with Parkinson’s such as muscle stiffness and problems walking.

But, it is “decades behind Alzheimers or Parkinson’s disease as far as the scientific advances and understanding of the disease,” Angela Taylor told Time Magazine. Taylor is director of programs at the Lewy Body Dementia Association in the United States, a non-profit that works on creating awareness about the disease.

A few months before his death, Williams’ was diagnosed with Parkinson’s disease. Williams too, had a tremor in his left hand.

Like Alzheimer’s disease and Parkinson’s disease, Lewy Body Dementia is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There is no known cure to the illness, or to stem the progression of the disease.

What differentiates Lewy Body Dementia from the two other forms of dementia are the psychiatric presentations in the patients who experience extreme swings between alertness and confusion or drowsiness, which may happen unexpectedly and change from hour to hour or day to day.

What is more debilitating, are the hallucinations – seeing or hearing things that are not real.

Williams’ had a panic attack, when he was in the middle of filming Night at the Museum 3. He was recommended an antipsychotic medication, which makes symptoms worse for people with Lewy Body Dementia.

Williams’ case, his wife wrote, was extreme. “Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”

Diagnosis tough

If doctors missed Lewy Body Dementia in a highly paid and much loved Hollywood actors, it is an indication of how hard the disease is to diagnose. Like for most other diseases the challenge of diagnosis holds doubly true in India.

“Diagnosing dementia itself is a tough,” said Dr Sirish Hastak, a consultant neurologist from Kokilaben Dhirubai Ambani Hospital in Mumbai. “We see far fewer cases of Lewy Body Disease as compared to Parkinson’s disease.”

Dementia patients are often referred to psychiatrists who are not equipped to handle a pathological problem like Lewy Body Disease, said Dr Hastak. Once diagnosed, the treatments for the disease, which normally consists of medication with chemical inhibitors, are considered more effective as compared to Alzheimers’ and Parkinson’s disease.

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What hospitals can do to drive entrepreneurship and enhance patient experience

Hospitals can perform better by partnering with entrepreneurs and encouraging a culture of intrapreneurship focused on customer centricity.

At the Emory University Hospital in Atlanta, visitors don’t have to worry about navigating their way across the complex hospital premises. All they need to do is download wayfinding tools from the installed digital signage onto their smartphone and get step by step directions. Other hospitals have digital signage in surgical waiting rooms that share surgery updates with the anxious families waiting outside, or offer general information to visitors in waiting rooms. Many others use digital registration tools to reduce check-in time or have Smart TVs in patient rooms that serve educational and anxiety alleviating content.

Most of these tech enabled solutions have emerged as hospitals look for better ways to enhance patient experience – one of the top criteria in evaluating hospital performance. Patient experience accounts for 25% of a hospital’s Value-Based Purchasing (VBP) score as per the US government’s Centres for Medicare and Mediaid Services (CMS) programme. As a Mckinsey report says, hospitals need to break down a patient’s journey into various aspects, clinical and non-clinical, and seek ways of improving every touch point in the journey. As hospitals also need to focus on delivering quality healthcare, they are increasingly collaborating with entrepreneurs who offer such patient centric solutions or encouraging innovative intrapreneurship within the organization.

At the Hospital Leadership Summit hosted by Abbott, some of the speakers from diverse industry backgrounds brought up the role of entrepreneurship in order to deliver on patient experience.

Getting the best from collaborations

Speakers such as Dr Naresh Trehan, Chairman and Managing Director - Medanta Hospitals, and Meena Ganesh, CEO and MD - Portea Medical, who spoke at the panel discussion on “Are we fit for the world of new consumers?”, highlighted the importance of collaborating with entrepreneurs to fill the gaps in the patient experience eco system. As Dr Trehan says, “As healthcare service providers we are too steeped in our own work. So even though we may realize there are gaps in customer experience delivery, we don’t want to get distracted from our core job, which is healthcare delivery. We would rather leave the job of filling those gaps to an outsider who can do it well.”

Meena Ganesh shares a similar view when she says that entrepreneurs offer an outsider’s fresh perspective on the existing gaps in healthcare. They are therefore better equipped to offer disruptive technology solutions that put the customer right at the center. Her own venture, Portea Medical, was born out of a need in the hitherto unaddressed area of patient experience – quality home care.

There are enough examples of hospitals that have gained significantly by partnering with or investing in such ventures. For example, the Children’s Medical Centre in Dallas actively invests in tech startups to offer better care to its patients. One such startup produces sensors smaller than a grain of sand, that can be embedded in pills to alert caregivers if a medication has been taken or not. Another app delivers care givers at customers’ door step for check-ups. Providence St Joseph’s Health, that has medical centres across the U.S., has invested in a range of startups that address different patient needs – from patient feedback and wearable monitoring devices to remote video interpretation and surgical blood loss monitoring. UNC Hospital in North Carolina uses a change management platform developed by a startup in order to improve patient experience at its Emergency and Dermatology departments. The platform essentially comes with a friendly and non-intrusive way to gather patient feedback.

When intrapreneurship can lead to patient centric innovation

Hospitals can also encourage a culture of intrapreneurship within the organization. According to Meena Ganesh, this would mean building a ‘listening organization’ because as she says, listening and being open to new ideas leads to innovation. Santosh Desai, MD& CEO - Future Brands Ltd, who was also part of the panel discussion, feels that most innovations are a result of looking at “large cultural shifts, outside the frame of narrow business”. So hospitals will need to encourage enterprising professionals in the organization to observe behavior trends as part of the ideation process. Also, as Dr Ram Narain, Executive Director, Kokilaben Dhirubhai Ambani Hospital, points out, they will need to tell the employees who have the potential to drive innovative initiatives, “Do not fail, but if you fail, we still back you.” Innovative companies such as Google actively follow this practice, allowing employees to pick projects they are passionate about and work on them to deliver fresh solutions.

Realizing the need to encourage new ideas among employees to enhance patient experience, many healthcare enterprises are instituting innovative strategies. Henry Ford System, for example, began a system of rewarding great employee ideas. One internal contest was around clinical applications for wearable technology. The incentive was particularly attractive – a cash prize of $ 10,000 to the winners. Not surprisingly, the employees came up with some very innovative ideas that included: a system to record mobility of acute care patients through wearable trackers, health reminder system for elderly patients and mobile game interface with activity trackers to encourage children towards exercising. The employees admitted later that the exercise was so interesting that they would have participated in it even without a cash prize incentive.

Another example is Penn Medicine in Philadelphia which launched an ‘innovation tournament’ across the organization as part of its efforts to improve patient care. Participants worked with professors from Wharton Business School to prepare for the ideas challenge. More than 1,750 ideas were submitted by 1,400 participants, out of which 10 were selected. The focus was on getting ideas around the front end and some of the submitted ideas included:

  • Check-out management: Exclusive waiting rooms with TV, Internet and other facilities for patients waiting to be discharged so as to reduce space congestion and make their waiting time more comfortable.
  • Space for emotional privacy: An exclusive and friendly space for individuals and families to mourn the loss of dear ones in private.
  • Online patient organizer: A web based app that helps first time patients prepare better for their appointment by providing check lists for documents, medicines, etc to be carried and giving information regarding the hospital navigation, the consulting doctor etc.
  • Help for non-English speakers: Iconography cards to help non-English speaking patients express themselves and seek help in case of emergencies or other situations.

As Arlen Meyers, MD, President and CEO of the Society of Physician Entrepreneurs, says in a report, although many good ideas come from the front line, physicians must also be encouraged to think innovatively about patient experience. An academic study also builds a strong case to encourage intrapreneurship among nurses. Given they comprise a large part of the front-line staff for healthcare delivery, nurses should also be given the freedom to create and design innovative systems for improving patient experience.

According to a Harvard Business Review article quoted in a university study, employees who have the potential to be intrapreneurs, show some marked characteristics. These include a sense of ownership, perseverance, emotional intelligence and the ability to look at the big picture along with the desire, and ideas, to improve it. But trust and support of the management is essential to bringing out and taking the ideas forward.

Creating an environment conducive to innovation is the first step to bringing about innovation-driven outcomes. These were just some of the insights on healthcare management gleaned from the Hospital Leadership Summit hosted by Abbott. In over 150 countries, Abbott, which is among the top 100 global innovator companies, is working with hospitals and healthcare professionals to improve the quality of health services.

To read more content on best practices for hospital leaders, visit Abbott’s Bringing Health to Life portal here.

This article was produced on behalf of Abbott by the Scroll.in marketing team and not by the Scroll.in editorial staff.