Alzheimer's Disease and Hospice Care

Caring for a loved one with Alzheimer's Disease is among the most demanding challenges that any caregiver can face. Providing support, love, and direct care for someone with an extended illness is difficult in and of itself, and when coupled with the emotional overlay that Alzheimer's Disease presents, the burden is often overwhelming.

As the loved one declines, the family finds dealing with their loved one's impending death agonizing. The public's anger that modern advances cannot halt the inevitable makes the situation especially difficult. However, caring, appropriate treatment during a patient's terminal stage can make a wonderful difference to his/her life and death.

Hospice care for a loved one with Alzheimer's Disease can not only ensure the comfort and well-being of the patient but also provides psychosocial support to the caregivers at a crucial time in their caregiving journey.

What is Hospice?
Hospice is "an institution that provides a centralized program of palliative and supportive services to dying persons and their families, in the form of physical, psychological, social, and spiritual care. Such services are provided by an interdisciplinary team of professional and volunteers who are available at home and inpatient settings."

The hospice interdisciplinary team includes nurses, social workers, physicians, volunteers, mental health counselors, volunteer coordinators, pastoral care directors, educators, and others necessary to the provision of comprehensive care.

Hospice considers the patient and their family/caregivers as the unit of care. Family members and caregivers are taught, encouraged, and supported by the team. Bereavement care is absolutely essential to the hospice philosophy and is provided to family and loved ones following the death of a hospice patient for at least one year following the death.

What are the goals of Hospice Care?

• To provide dignified palliative (comfort) care for terminally ill persons; (by controlling symptoms)
• Tto support the patient and family emotionally and spiritually
• To ensure the long-term physical/emotional well being of loved ones after the patient's death
  

How does a person become eligible to receive Hospice under Medicare?

Medicare covers hospice care if:

• The patient has Medicare Part A;
• The attending physician and a hospice medical director certifies that the patient is terminally ill, that is, with a life expectancy of 6 months or less, if the illness runs its normal course; and,
• The patient chooses or elects to receive hospice care and gives up (waives) the right for Medicare to pay for treatment of the terminal illness.
  

Medicare will continue to pay for the patient's medical services not related to the terminal illness.

Private insurance plans will often approve a hospice benefit when appropriate. These situations are usually negotiated on an individual basis.

Are there guidelines to determine if someone with Alzheimer's disease is terminally ill?

The National Hospice and Palliative Care Organization in conjunction with Medicare has published guidelines to help identify which dementia patients are likely to have a prognosis of six months or less, if the disease runs its normal course.

It is important to remember that Alzheimer's Disease is extremely variable in its course and that these are only guidelines to assist doctors in determining whether a patient may be appropriate for hospice care.

The current guidelines are:
End-Stage Dementia; Alzheimer's / Multi-infarct

• Exhibits all the following:
  1. unable to ambulate, dress, or bathe without assistance;
  2. unable to converse meaningfully with others;
  3. incontinent of urine and stool
• Cannot sit upright in geri-chair or wheelchair without support.
• Difficulty swallowing food, liquids, or medications.
• No longer smiling or interacting with caregivers.
• History of frequent urinary tract infections, overwhelming urinary sepsis, pneumonia, septicemia
• Multiple decubiti (skin breakdowns)
• Weight loss
  

What is covered by the Hospice benefit?

• intermittent in-home nursing care,
• physical/occupational/speech therapy when indicated,
• social services,
• home health aides/homemakers,
• physician services,
• counseling services (bereavement, dietary, pastoral, etc.),
• short term inpatient care
• continuous home care as necessary
• medical appliances and supplies
• outpatient drugs.

What is not covered by the Hospice benefit?
The Medicare hospice benefit does not pay for treatment for the terminal illness or related condition that is not for symptom management or pain control.

Is there a choice of hospices when a patient is referred for hospice care?
Usually. In rural areas there may be only one hospice for a given area. In metropolitan areas there are usually several from which to choose.

How long can a patient receive hospice services?
The patient may elect to receive benefits for two periods of 90 days each, and an unlimited number of periods of 60 days each. The hospice is required to assure that the patient continues to meet recertification criteria.

If at any time the patient changes his/her mind, they can decide to stop receiving hospice care and immediately begin to receive regular Medicare benefits. There is no limit to how many times a patient may elect and then revoke hospice.