People 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 focused on the stress and symptoms of patients living with a 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 additional layer of support for patients and their caregivers. All health care providers are skilled in caring for patients with critical illness, but palliative care specialists are trained to assess and address unmet needs that impact a patient’s quality of life. and his relatives. A strong palliative care team includes physicians, advanced practice providers, social workers, nurses, chaplains and pharmacists. This team-based approach helps to ensure that physical symptoms are assessed and appropriate 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 do, almost all of them want it. In fact, we often hear that they wish they had asked
Anita has been living with Alzheimer’s disease for three years. Her husband, Solomon, is her primary carer and began to miss his own medical appointments because he was struggling to care for his wife at home. Their primary care physician referred Anita to a community palliative care program. The assessment revealed that Anita was still active but had a declining memory and needed help with the more complex activities of daily living. Her most troublesome symptom was insomnia, 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 they got sicker. Anita was then able to complete a living will for people with dementia. The doctor 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 with a local day program that Anita attends. Anita loves the interactions with others and the live music that is often played there. The team schedules follow-up appointments with Anita every few months to check for new symptoms and to help support Solomon as a caregiver and prepare them both for what to expect as the disease progresses. Recently, the palliative care team has been able to offer telehealth visits when Anita is having a difficult day, which helps relieve some of the caregiver burden Solomon is experiencing.
The need for better access
Expanding access to palliative care is crucial because more than 6 million people in the United States are living with Alzheimer’s disease and that number is expected to rise sharply over the next few decades. Additionally, many people with dementia from other causes, such as hardening of the arteries, Parkinson’s disease, and other degenerative conditions, face similar challenges and would benefit from palliative care.
However, there are obstacles to overcome in order for palliative care to be accessible to all who need it, whether in institutions, clinics or at home. Palliative care services are not universally available in all care settings, and the current palliative care workforce is too small. The root causes are:
- lack of training for health care providers;
- traditional payment models that do not support the entire palliative care team; and
- misaligned health policies.
The American Academy of Hospice and Palliative Medicine (AAHPM) is the professional organization for physicians who specialize in hospice and palliative care. Members also include nurses, social workers, spiritual care providers and other healthcare professionals who are deeply committed to improving the quality of life for people living with serious illness. AAHPM’s mission is to advance hospice and palliative care by enhancing learning, cultivating knowledge and innovation, strengthening the workforce, and advocating for public policy.
The AAHPM has engaged in a series of sustained initiatives to overcome barriers limiting access to palliative care, primarily through advocacy for the Hospice Palliative Care Education and Training Act. This bipartisan legislation, which has passed the House twice, would authorize Congress to fund hospice and hospice education centers and college and career incentive awards to increase hospice palliative care education. physicians, nurses and other interdisciplinary health professionals at specialist and generalist levels. .
To overcome misaligned payments and economic incentives, AAHPM proposed an alternative payment model that would enable the delivery of palliative care in the home. With coalition partners, AAHPM continues to engage with the Center for Medicare and Medicaid Innovation to inspire testing of payment models that support palliative care and hold participating organizations accountable for quality outcomes that matter to patients. people with serious illness. Additionally, the AAHPM has approved bills that would allow the continued use of telehealth to provide specialized palliative care in the patient’s home after the current public health emergency ends.
Alzheimer’s disease and other related dementias are often not the diagnosis that leads people to palliative care or palliative care services. Patients often do not explore these services until they have received an additional diagnosis of a chronic disease. However, patients and their caregivers can benefit from a variety of palliative care services from their initial diagnosis. Creating environments where patients can thrive and maintain a high quality of life are some of the primary goals of hospice and palliative care professionals, and the AAHPM.
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