Rita Ghatak leaned toward Beverlee White. "Do you have any special needs or concerns?" she asked. White, 85, appeared in excellent health. Sitting comfortably in her Cupertino townhome, she was immaculately groomed and dressed and quick to articulate her frustrations. She described a fall she'd taken in her bathroom, the car accident she'd had that led her to give up her driver's license, the trouble she has with numbers.
"My memory is not perfect," White said.
From a few feet away, White's daughter, M.J., watched with a worried face. She and her siblings had long suspected their mother's sharp mind had lost its steady edge. Recently, Stanford Hospital neurologists told her that White has a mild but progressive cognitive deficit. That diagnosis is a warning bell that dementia, a functional deterioration that is more than the slowness of old age, had begun to erode White's ability to live the independent life she'd treasured for many decades. Ghatak, a PhD in psychology and elder care expert who heads Stanford Hospital's Aging Adult Services, was there to offer the help of the Stanford Dementia Support Program, a nationally-recognized care protocol unique in its breadth and depth.
The first step was this home visit and an extended conversation with White. "We are here to listen," Ghatak told White. "We want to know what you want." White gave her a very straightforward answer. "I've never been old before," she said, "so most of the time I don't know what to expect."
Each week, Ghatak makes several visits like this one, gathering information essential to help families like White's. About three years ago, she noticed that more and more of the people who came to her Aging Adult Services office at Stanford Hospital & Clinics were there because of a dementia diagnosis. Or, that she was being called to the emergency room, where a family had brought in someone with dementia, in crisis. "People were exhausted and in despair," Ghatak said. "They needed support and direction and an understanding of dementia symptoms and behavior changes." Support for those families has been the great unspoken need, Ghatak said.
Ghatak was well-practiced at handling short-term issues like follow-up care for people just discharged from the hospital after a major surgery or help to manage a chronic condition like arthritis. The disease of dementia, she said, requires something more. "It must have a constant continuum of care and a more family-centered approach."
The scope and magnitude of the need was clear. When Ghatak looked at the numbers first, in 2008, nearly 30 million people worldwide had some form of dementia; more than 10 million people were caring for them. Few of those caregivers had any medical training. Few hospitals had organized programs to offer the kind of support Ghatak envisioned for families after a dementia diagnosis.
With full support from Stanford Hospital administrators, Ghatak designed a multi-layered, cross-disciplinary dementia support program. More than 330 families have since found help there, with the program as their guide and partner. The Stanford Hospital Dementia Support program's innovative package of education, consultations, home visits, family meetings, care coordination and on-going status updates to physicians is unusual in its comprehensive view. Ghatak now speaks nationally and internationally about its structure and success.
The program's hallmark is its recognition that the impact of a dementia diagnosis spreads beyond each patient. "Dementia is an incredibly devastating disease on a personal level for the patient, but it has a remarkable amount of spillover to the immediate family and extended neighbors," said Michael Greicius, MD, Medical Director of the Stanford Center for Memory Disorders. "Every day and every week caregivers face dozens of obstacles and concerns. It's everything from insurance to how long to keep patients at home – and the inevitable guilt that comes from not being able to care for a person at home any more. There is really heavy emotional fallout, so having a person like Dr. Ghatak and a program like ours is particularly important."
A program like Stanford's "makes a difference for the patient and the family if people know what to do and they’re helped in doing it," said Penelope Zeifert, PhD, a Stanford neuropsychology expert. "There can be so much sadness and grief. If people know what to do and they are helped to do it, they can make peace with it earlier."
The dilemma White's family faced was how to respect their mother, a woman whose disability was not yet extreme but which had already affected her ability to be safe in her home. Understanding that kind of nuance, Ghatak said, is part of what the support program does best. The mission of the Stanford Dementia Support program, Ghatak said, is "to use a creative and sensitive approach to give people certain resources to make their journey better, to give them a strategy for care. There's always something out there to do that. And the better we understand each patient and each family, the more we can help them."
"Dr. Ghatak and her team are effective because they have good ways of communicating with families about concrete help," said Geoffrey Kerchner, MD, PhD, a behavioral neurologist at Stanford Hospital. "They have a massive resource of practical options."
The support program concentrates first on education. "Putting a name to the behavior a family has seen is one thing," Ghatak said. "Understanding the depth of the disease and its ongoing process is another. The first step is for the family to accept the disease in its totality, and different dementias show themselves in different ways."
Ghatak and her staff begin by learning the details of a patient's daily life. "That will define what the disease has already done," she said. "How much help is that person needing? A lot of people with dementia are able to live very good lives given proper structure. We can preserve a lot of normalcy provided there is support."
The home visit Ghatak makes will tell her just what kind of support and structure is needed. Then, she and her staff pull together resources for that support and structure – special adaptive equipment, for instance. Other families might need the help of a professional caregiver or an adult day health program that accepts patients with dementia.
Often what Ghatak suggests are environmental changes: People with dementia are often bothered by loud noises or changes in routine, so stick to routine and keep conversations in low tones. Agitation can be reduced if, instead of correcting statements, the response is to agree or to redirect the conversation. Sometimes, Ghatak will recognize the negative impact of medication.
Bay Area resident Jill Freidenrich called Ghatak when her 94-year-old mother, recovering from a surgery, received post-treatment care that included new medication. Suddenly, her mother's mild dementia became something very frightening. "Before our eyes, she began to slip away," said Freidenrich.
Ghatak recognized the connection between that new medication and the drastic change in behavior. She recommended the family talk to clinicians at Stanford's Neurology and Geriatric clinics for medication management suggestions. Medication changes did improve Freidenrich's mother's condition. Her family also continues to follow Ghatak's environmental care suggestions, Freidenrich said. "We never could have traveled this unknown road without the program's guidance. The program was critically important for us."
Ghatak would like to see Stanford's design for dementia support become more common. "Most hospitals don't have enough social workers assigned for this kind of ongoing family support," she said. "At Stanford, through this program, we have care coordinators who pull together resources for all aspects – psychosocial, physical, everything – and we can send feedback to physicians so everyone understands and works together for the best outcome."