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- Introduction
- What is Palliative Care?
- The Clinical Course of Lewy body dementia
- What is Hospice Care?
- Comparison of the Features of Palliative and Hospice Care
- What to Ask When Choosing a Hospice?
- Additional Resources and Reading
Introduction
Lewy body dementia (LBD) is a progressive neurodegenerative disease with cognitive, motor, sleep, and behavioral symptoms. Because these symptoms are similar to those of Alzheimer’s and Parkinson’s disease, it can take some time to correctly diagnose LBD. Once the diagnosis has been made, families go through a process of adjustment as they come to understand more about LBD symptoms and treatments and as they try to anticipate what the future will hold. Because there is no cure, it is important for families and physicians to focus on helping people with LBD maintain the highest possible quality of life. In addition, families need emotional support and guidance in their roles as caregivers and advocates. Palliative care and hospice programs have an important place in helping families to achieve these goals.
What is Palliative Care?
The goal of palliative medicine is to improve quality of life by relieving the symptoms of disease. Accepting palliative care services does not mean that someone has given up hope of a cure. Instead, it signifies recognition that the quality of one’s life is as important as its duration. Generally speaking, palliative care can benefit people of any age at any stage of illness, whether that illness is curable, chronic, or life-threatening.
Palliative care has an especially important role in LBD because all current treatments focus on ameliorating symptoms rather than achieving a cure. Palliative care providers can coordinate the care provided by multiple physicians and help patients and caregivers express their feelings about which symptoms should be given priority. Another important aspect is developing ongoing dialogue about whether interventions such as feeding tubes should be used as LBD progresses.
The goals of this team are to provide:
- Relief from troubling symptoms
- Assistance in medical decision making
- Emotional and spiritual support
- Care coordination
Many types of health insurance cover the costs of palliative care. Although neither Medicare nor Medicaid recognize the term “palliative care,” these programs do cover some palliative care medications and treatments as they do other medical care.
The Clinical Course of Lewy Body Dementia
The way in which LBD progresses varies from person to person. The average duration of LBD (from the time of diagnosis to death) is 5 to 7 years. In the later stages of the disease, people with LBD are not able to do basic self-care activities such as bathing, dressing, or toileting and often have increasing difficulties with movement that can affect walking, talking, and swallowing. When a person with LBD needs constant care and their quality of life is greatly reduced, it is an appropriate time to consider a hospice program.
What is Hospice Care?
The primary difference is that hospice programs are intended for people who are in the later stages of an incurable illness where providing basic supportive care and comfort take precedence over treatments that attempt to slow disease progression. The goal of hospice care is to offer relief from pain and other symptoms while providing emotional support to patients and their families.
Comparison of the Features of Palliative and Hospice Care
| Feature | Palliative Care | Hospice Care |
|---|---|---|
| Goal | Pain relief, symptom control, and emotional support | Same |
| Curative treatments | Continue as long as individual desires | Curative treatments cease |
| Eligibility | None | Physician certification of < 6 months to live |
| Coverage | Medicare Part B, Medicaid, private insurance | Medicare Part A, Medicaid (most states), private insurance |
Hospice care is covered under the Medicare program. If an individual has Medicare Part A, then he or she is entitled to receive hospice services. This includes nursing care, medical equipment, medications for pain, and dietary counseling.
What to Ask When Choosing a Hospice?
- Is the hospice run as a for-profit or not-for-profit business?
- Does the hospice have experience with LBD patients?
- Does the hospice have experience dealing with patients who have severe delirium or hallucinations?
- Will the hospice cover all current medications, including atypical antipsychotics?
- What types of bereavement services are provided?
