Elderly and young hands together
by Jessica McFarlin & Joe Rotella

People living with Alzheimer’s disease and other dementias have complex care needs that not only affect the patient but result in high levels of caregiver distress. Like all serious illnesses, it affects the whole family.

Palliative care is specialized medical care that focuses on the stress and symptoms of patients living with serious illness. Palliative care specialists do not replace other trusted health care providers such as primary care physicians or neurologists, but rather act as an extra layer of support for patients and their caregivers. All health care providers have skills in caring for patients with serious illness, but palliative care specialists are trained to evaluate and treat the unmet needs that impact quality of life of a patient and their loved ones. A robust palliative care team includes physicians, advanced practice providers, social workers, nurses, chaplains and pharmacists. This team-based approach helps ensure that physical symptoms are evaluated and also that proper care is given to the patient’s spiritual, emotional and social concerns.

Many families facing the challenges of Alzheimer’s disease don’t know what palliative care is, but once they find out, nearly all of them want it. In fact, we often hear that they wish they had asked for
it sooner.

Anita’s Story

Anita has been living with Alzheimer’s disease for three years. Her husband, Solomon, is her primary caregiver and began missing his own medical appointments because he was having difficulty caring for his wife at home. Their primary physician referred Anita to a community-based palliative care program. The assessment revealed that Anita was still active but had declining memory and needed assistance for most complex activities of daily living. Her most troublesome symptom was sleeplessness, which caused Solomon to stay up all night with her.

The palliative care team was able to explore what was most important to their family as she became more ill. Anita was then able to complete a living will designed for people living with dementia. The physician reviewed Anita’s symptoms and taught Solomon how to help improve Anita’s sleep and hygiene, and avoided using new medications. The social worker connected them to a local day program that Anita attends. Anita enjoys the interactions with others and the live music that is often performed there. The team conducts follow-up appointments with Anita every few months to check on new symptoms and to help support Solomon as her caregiver and prepare them both for what to expect as the disease progresses. Recently, the palliative care team has been able to provide telehealth visits when Anita is having a rough day, which helps relieve some of the caregiver burden that Solomon experiences.

The Need for Better Access

Expanding access to palliative care is crucial, as over 6 million people in the United States are living with Alzheimer’s disease and that number is anticipated to rise sharply over the next few decades. In addition, there are many people living with dementias of other causes, such as hardening of the arteries, Parkinson’s disease and other degenerative conditions, who face similar challenges and would benefit from palliative care.

There are obstacles to overcome, however, to make sure that palliative care is available to everyone who needs it, whether in a facility, a clinic or at home. Palliative care services are not universally offered in all care settings, and the current palliative care workforce is stretched too thin. The root causes are:

  • lack of training for care providers;
  • traditional payment models that do not support the full palliative care team; and
  • misaligned health care policies.

The American Academy of Hospice and Palliative Medicine (AAHPM) is the professional organization for physicians specializing in hospice and palliative care. Members also include nurses, social workers, spiritual care providers and other health care professionals deeply committed to improving quality of life for people living with serious illness. AAHPM’s mission is to advance hospice and palliative medicine through enhancing learning, cultivating knowledge and innovation, strengthening workforce and advocating for public policy.

AAHPM has engaged in a range of sustained initiatives to address the barriers limiting access to palliative care, foremost among them by advocating for the Palliative Care and Hospice Education and Training Act. This bipartisan legislation, which has passed the House twice, would authorize Congress to fund palliative care and hospice education centers and academic and career incentive awards to increase palliative care training for physicians, nurses and other interdisciplinary health care professionals at both the specialist and generalist levels.

To overcome misaligned payment and economic incentives, AAHPM has proposed an alternative payment model that would enable delivery of palliative care in the home setting. Along with coalition partners, AAHPM continues to engage with the Center for Medicare and Medicaid Innovation to urge testing of payment models that support palliative care and hold participating organizations accountable for quality outcomes that matter for people with serious illness. In addition, AAHPM has endorsed bills that would allow for the ongoing use of telehealth to provide specialty palliative care in the patient’s home after the current public health emergency has ended.

Alzheimer’s disease and other related dementias are often not the diagnosis that bring people into palliative care or hospice services. Frequently, patients do not explore these services until they have received an additional diagnosis of a chronic illness. However, patients and their caregivers can benefit from a variety of palliative care services upon their initial diagnosis. Creating environments where patients can flourish and maintain a high quality of life are some of the leading goals of palliative care and hospice professionals, as well as AAHPM.

Dr. Jessica McFarlin is an associate professor of neurology at the University of Kentucky. She is certified by the American Board of Psychiatry and Neurology in neurology and hospice and palliative care. She is also board certified in neuro critical care. She can be reached at jessica.mcfarlin@uky.edu.

Dr. Joe Rotella is the chief medical officer of the American Academy of Hospice and Palliative Medicine. During his previous role at Hosparus, a community-based hospice in Louisville, Kentucky, he helped establish hospice inpatient units, palliative care consultation services and a palliative medicine fellowship. He can be reached at jrotella@aahpm.org.