By Marie Clouqueur, Brent P. Forester, and Ipsit V. Vahia
Alongside the COVID-19 epidemic in the U.S., the country faces another public health epidemic: dementia, and particularly Alzheimer’s disease.
Currently one in nine older adults in the U.S. — 6.2 million — have Alzheimer’s disease. The number of adults with Alzheimer’s in the U.S. will increase rapidly as the Baby Boomers age — it is expected to double by 2050.
The COVID-19 pandemic has exacerbated the situation. Acute, surging demand for dementia care services will turn into a persistent problem if we do not increase our capacity for services and better support our frontline workers. We have a chance now to reflect and take action to prepare for what is coming.
The pandemic’s effects may accelerate future projections
The social isolation required by the pandemic safety guidelines has led to increased rates of a number of negative symptoms among those with dementia, including worsening of function, agitation, and anxiety. Emerging research reflects what we are seeing: for some, the pandemic has meant a more rapid decline in the dementia itself. These factors have driven up the numbers and acuity of the patients we have seen.
And we already see the next wave coming. There are concerns that COVID-19 may lead to an increased risk for dementia downstream.
In addition to its devastating degenerative effects, dementia exacts an the enormous emotional and financial toll on caregivers, and strains the health care system. The health care system needs more capacity to treat people living with dementia, and we need support for those providing care on the front lines.
Call to expand capacity for treating dementia
The increased volume and needs of dementia patients during the pandemic show us where we need to grow with respect to inpatient and outpatient care, as well as care management services.
In our outpatient clinic, appointments increased during the pandemic due to an uptick in the number of referrals, as well as the change in care delivery. With the expansion into telehealth, a completely new delivery method for us, the typical barriers of our population to attending appointments — bad weather, physical ailments, transportation – all but disappeared, and the number of canceled or missed appointments plummeted. Additionally, telehealth allowed us to treat patients outside our usual geographic radius who lacked clinicians in their area. The number of appointments conducted by our clinic in the past 12 months increased by over 20%. During that time, because of risks and apprehensions associated with going into the hospital, we frequently provided an elevated level of outpatient care to people who may have otherwise been treated inpatient.
On the one hand, it has been a privilege for us to do our part to help in managing the effects of the pandemic, and our team has risen to meet the challenge. On the other hand, given the overwhelming demand, there are questions around whether this model will be sustainable in the face of rapidly increasing demand when availability of specialty care was already low. Simply put, we need more clinicians — doctors, nurses, psychologists, and social workers — to join us in geriatric psychiatry.
In the inpatient setting, we had to decrease the bed capacity for infection control, and even closed the unit for a period. At one point, our system had extensive waitlists of people with dementia in the emergency department waiting for inpatient beds. For those in the hospital, the lack of outpatient providers and service available in the community delayed discharges until a reasonably safe plan was in place. With the number of persons with dementia growing, unless systemic action is taken to increase inpatient capacity with specialized care, we risk this situation becoming the norm.
The same increase in behavioral symptoms that caused faster progression of disease and increased need for inpatient and outpatient services also called for us as providers to attend to increased stress in family caregivers, of whom there are 11 million in the US. Caregivers have dealt not only with disease progression, but also with significantly reduced sources of respite, for a range of reasons, including hesitancy to utilize natural supports of family and friends, or hired in-home care, and the closure of senior centers and adult day health programs. They needed emotional support, coaching about effective interventions, and information about what services were available in order to prevent burnout and threats to their own health, which would compromise their ability to care for their loved one with dementia. Care managers provide these expert services that sustain caregivers, but currently this service is not reimbursed by insurance. Philanthropy-supported or out-of-pocket paid services may fill this gap to a partial extent, but present major issues of sustainability and equity to access. Coverage of care management would help fill a major gap in the wrap-around services that are necessary for caring for dementia patients. It also holds the potential to reduce the indirect costs of dementia care, while improving care outcomes
Call to recognize and support the front line
As clinicians, we do important work to ease the emotional and behavioral symptoms of dementia patients to try to optimize the person’s quality of life in the midst of this degenerative disease. But we don’t shoulder the hardest, unrelenting work of feeding, bathing, dressing, and continuously monitoring people with dementia, so we must recognize and support those who do — this includes both aides who work in people’s homes, long term care facilities, and hospitals, as well as unpaid family caregivers.
Aides are truly the front line in dementia health care. Aides often encounter challenging behaviors among persons with advanced dementia, including aggression, hostility, resistance to care, and even assault. This often creates demanding work environments for aides. The health care system, as currently constructed, does not always recognize the role of health aides in dementia care and ongoing management. Supports, protections, and sustainable wages are important factors in attracting the most motivated workforce for these positions.
There is also an opportunity to consider which elements of dementia care can be met in the future by technologies. This could range from apps that help deliver standardized assessments and guide interventions, to telecare services to support caregivers, to robots that may serve a variety of roles.
As we emerge from the pandemic surge, this is an opportune moment to process the lessons from the pandemic, study the needs and resources needed for the future, and begin the process of addressing disparities now, so that we are better placed to deal with future crises — both acute, such as the COVID pandemic, and also chronic, such as growing demand that the existing supply of care cannot possibly meet without systemic intervention.
Marie Clouqueur, LCSW is a Geriatric Case Manager at McLean Hospital.
Brent P. Forester, MD, MSc, is the chief of the Center of Excellence in Geriatric Psychiatry at McLean Hospital and medical director for Medical Director, Behavioral Health Integration, Quality and Patient Experience at Mass General Brigham.
Ipsit Vahia, MD, is medical director of the Geriatric Psychiatry Outpatient Services at McLean Hospital and the McLean Institute for Technology in Psychiatry. He is also director of the Technology and Aging Laboratory.