Hospice care is a form of medical, emotional, and spiritual care for patients with life-limiting illnesses who have a prognosis of six months or less to live. It can be tremendously helpful in enhancing the quality of life of these patients, and it provides comfort and support to both the patients and their loved ones.
There is a common misconception that hospice care is only for patients with certain types of illnesses, such as those with cancer. In reality, hospice care is available for anyone with a life-limiting illness, including Alzheimer’s disease and other forms of dementia. Hospice care can help patients manage pain and provide greater contentment for both patients and their families.
Despite the tremendous benefits of hospice care for patients with dementia and their families, there are challenges to enrolling patients with dementia in hospice care. Physicians and medical providers may not view dementia as a life-limiting illness in the same manner that they do a heart condition, cancer, or other illness. This may lead to doctors not recommending hospice care for patients with dementia and fewer patients and families taking advantage of hospice services as a result.
What Is Hospice Care?
Hospice care is a service that focuses on the overall well-being of a patient with a life-limiting illness. It offers medical, spiritual, and emotional care for patients who have a prognosis of six months or less to live through an inter-disciplinary team of providers. Physicians, nurses, social workers, chaplains, spiritual guides, and home health aides work together to help patients manage pain and symptoms to maintain a high quality of life. Hospice care is available to those patients who have decided to end curative treatments.
Hospice care is not a place. Instead, hospice care staff will typically come to where a patient is, whether that is a private residence, a skilled nursing home, or other long-term care facility. Hospice staff provides a range of services to help a patient live with dignity and comfort. This may include medical care to ease symptoms and pain associated with the illness, counseling, respite care for caregivers, and grief support for family, friends, and loved ones.
Through hospice care, providers aim to ease a patient’s discomfort and allow him or her to live as full a life as possible in their remaining time. Hospice care is not limited to a specific illness or age; any patient with a prognosis of six months or less to live may be eligible for hospice care. In most cases, hospice care is covered by Medicare, Medicaid, or private insurance. Many hospice care programs also offer reduced fees for patients without insurance that are made possible through community support and grants.
Benefits of Hospice Care for Patients with Dementia
Hospice care providers are knowledgeable about the common symptoms that may occur in patients with Alzheimer’s disease and other forms of dementia. They can help patients manage these symptoms and any pain from associated conditions.
Hospice care providers can provide a range of supportive services and treatments to patients with dementia. This may include providing basic comfort, such as helping patients who have spent an extended period of time bed-ridden to help ease muscle pain and reduce the risk of bedsores.
Studies have shown that patients with dementia receive less pain medication than those who without dementia due to their inability to express that they are in pain. Hospice care staff are keenly aware that a patient with dementia may still be in significant pain even if they cannot say that they are and take measures to help ensure that the patient is as pain-free as possible. Providers will learn to anticipate a patient’s needs, particularly if an individual with advanced dementia is unable to verbally express themselves. They watch for signs and symptoms of physical discomfort so that they can provide aid in an appropriate manner to maximize comfort.
Hospice caregivers can also assist patients with taking medication and providing nourishment, and they can also teach loved ones how to keep patients comfortable. Perhaps most importantly, hospice care staff can help provide a peaceful environment for patients with dementia, giving them safe surroundings to express emotions and allowing them dignity in their final months. Patients are not forced to cooperate, as they may be in a nursing facility; instead, the focus is on maintaining serenity and helping to ease the patient’s agitation.
In addition to the services provided to the patient, hospice care staff can provide invaluable assistance to family and friends of patients with advanced dementia. Caring for someone with dementia can be incredibly taxing, both physically and emotionally. Hospice workers provide respite and reassurance, affirming loved ones that the patient is well cared-for and comfortable. They can assist caregivers in recognizing signs of physical discomfort and show them how to care for the patient in a way that respects their dignity and allows them peace. They can also provide support and counseling for family members who are struggling with this transition, including bereavement services after the patient has passed.
Barriers to Hospice Care for Patients with Dementia
Dementia is a chronic disease that is often poorly understood by physicians and other medical professionals. Too often, the focus is on reacting to acute medical issues — such as infection — rather than long-term planning for the care of a person with dementia. While dementia is the fifth leading cause of death for older Americans, many physicians do not recognize these illnesses as life-limiting. A lack of knowledge about Alzheimer’s disease and other forms of dementia can be a significant obstacle to recommending hospice care for these patients.
In addition, it may be difficult for physicians to provide an accurate prognosis for patients with advanced dementia. In many cases, a person with dementia suffers from another illness, whether it be cancer, heart failure, or a lung condition. A diagnosis of one of these conditions may aid in a recommendation of hospice care, but for patients without a concurrent illness, too many medical providers overlook hospice care as an option for end-of-life care.
Hospice care can be incredibly beneficial for both patients and their loved ones by focusing on providing comfort and support. Rather than insisting that the patient with dementia function in a specific way, hospice care focuses on respecting what remains of a patient’s ability to function. By providing pain relief and a peaceful environment, hospice care can be an invaluable asset for patients with Alzheimer’s disease and other forms of dementia.
How To Begin Care
Hospice care can begin through a self-referral process or after a medical provider refers a patient for services. Hospice care services often begin after a physician recommends services to a patient or his family. However, because of the barriers discussed above, many medical providers do not refer patients with dementia for hospice care services. This often puts the burden on the patient and his or her loved ones to advocate for hospice care.
Hospice care is available to anyone with a life expectancy of six months or fewer. A physician must certify a patient’s prognosis in order to qualify for hospice care. Because many doctors will not affirmatively suggest hospice care to patients with advanced dementia, it may be up to the patients and their loved ones to request a certification for hospice care for the patient.
Many patients with Alzheimer’s disease and other forms of dementia are unable to advocate for themselves, particularly if their dementia is advanced. In these situations, it is up to the family to make a case for hospice care on behalf of the patient. Request an appointment to discuss this option with the patient’s primary care physician, and ask for a referral and certification so that a loved one is able to enroll in hospice care.
Hospice services are generally available for as long as they are needed. While a prognosis of six months or fewer is required to begin services, hospice care can continue beyond six months as long as a physician re-certifies that a patient has a life-limiting illness and meets the requirements for hospice care.
Before hospice care begins, the hospice care team will meet with the patient’s physical and his or her family to create an individualized care plan for the patient. Once care begins, the staff will provide regular care and support for the patient and family, which often includes 24 hour access to hospice staff as necessary. Hospice care can occur wherever the patient is located, including in a private residence or a long-term care facility.
Choosing Hospice Care for a Patient with Dementia
Hospice care can be an incredibly life-affirming choice for patients with dementia and other life-limiting illnesses. This type of care can help give patients with dementia peace and comfort in their final days and will provide much-needed respite and support for caregivers. At Harbor Light Hospice, we have a philosophy of care that emphasizes dignity and quality of life for our patients. Contact us today to learn more about how our hospice care services may benefit you or your loved one.