• Recognize dementia as a terminal illness.
• Understand the difficulty of estimating prognosis in this population.
• Use Medicare hospice guidelines to help identify which dementia patients may be appropriate hospice candidates.
• Better understand basic criteria for certifying and, if necessary, recertifying, dementia patients for hospice.
• Recognize the benefits of hospice services for patients with dementia, and particularly for their families and caregivers.

Angela R. Curtis, PhD
Managing Editor
Assistant Professor, Geriatric Education Manager

Heather Herrington, MD
Assistant Professor

Division of Gerontology, Geriatrics and Palliative Care
University of Alabama at Birmingham
Birmingham, Alabama

The University of Alabama School of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The University of Alabama School of Medicine designates this educational activity for a maximum of 1 AMA PRA Category 1 Credit™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

The boards of nursing in many states, including Alabama, recognize Category 1 continuing medical education courses as acceptable activities for the renewal of license to practice nursing.

Dosages, indications, and methods of use of any drug referred to in this publication may reflect the clinical experience of the authors, clinical literature, or other clinical resources. Therefore, please see the full prescribing information before using any product mentioned. UAB is an equal opportunity/affirmative action institution.

Dementia is present in about 5 percent of individuals over age 65 years and it is estimated that between 35 and 50 percent of persons over age 85 years have dementia. A 2003 study estimated that 4.5 million Americans had Alzheimer’s disease, the most common type of dementia, in 2000; this number is expected to increase to 13 million by 2050. [1]

A majority of physicians, other clinicians and family members of demented patients believe that palliative care (or a comfort-oriented approach) is the appropriate health care for patients with end-stage dementia.[2] However, patients with advanced dementia often receive aggressive care and frequently do not receive appropriate palliative therapy or hospice at the end of life, in part because dementia is not recognized as a terminal illness. A study of people dying with advanced dementia in the nursing home setting found that 71% of patients with advanced dementia died within 6 months of nursing home admission, but only 1% of these patients had a perceived life expectancy of 6 months or less. In addition, demented patients were significantly less likely than terminal cancer patients to have “Do Not Resuscitate” or “Do Not Hospitalize” orders. Demented patients were significantly more likely than cancer patients to have aggressive therapies such as feeding tubes, intravenous fluids or recent laboratory tests. Also, demented patients commonly had pain, dyspnea, pressure ulcers, constipation and depression at the end of life.[3]

Hospice services, with an emphasis on comfort and quality at the end of life, can be particularly helpful in caring for people with dementia. The Medicare Hospice Benefit was enacted by Congress in 1982 to provide compassionate and cost-effective care for Medicare beneficiaries with incurable, advanced illnesses. Hospice is available to any patient after certification by a physician that the patient is expected to live less than 6 months if the illness runs its normal course. The patient then chooses to receive hospice care rather than curative treatments and enrolls in a Medicare-approved hospice.

Hospice provides all needed services:

• physician services and nursing care
• medical appliances and supplies
• drugs for symptom management and pain relief
• short-term inpatient and respite care
• homemaker and home health aid services
• counseling, social work services, volunteers
• spiritual care and bereavement services[5]

E.B. is an 82-year-old woman with Alzheimer’s dementia, which was diagnosed 8 years ago. In addition to her dementia diagnosis, she also has a history of coronary artery disease, hypertension, hypothyroidism, depression and congestive heart failure. Her daughter, who is retired and is E.B.’s primary caregiver, has taken extremely good care of her mother at home, but E.B. has continued to progressively decline. E.B. is incontinent of bowel and bladder intermittently. Despite home physical therapy, she is unable to ambulate without assistance. She is becoming more dependent for all activities of daily living despite intervention by home occupational therapy. E.B. is still able to communicate most of her basic needs to her daughter, though she is unable to comprehend more complex issues. She was admitted to the hospital twice in the past 4 months with urinary tract infections and worsening “confusion”; she was admitted again briefly last week for the same. She comes to see you today for a hospital follow-up visit. E.B.’s daughter reports that the “confusion” has resolved and her mother is now back to her pre-hospitalization baseline. In your office, E.B.’s mood is pleasant and her daughter tells you that she feels E.B. enjoys a fairly good quality of life, spending time with family members, despite her obvious cognitive limitations.

You review E.B.’s current medications, which are:
donepezil 10 po daily
aspirin 81 mg po daily
metoprolol 25 mg po bid
levothyroxine 100mcg po daily
lisinopril 10mg po daily
sertraline 75mg po daily

She has not been started on any new medications since her last visit with you six weeks ago; she does not take any over-the-counter medications. Daughter reports E.B. is tolerating her medications well and she has not noted any side effects.

Brain imaging and laboratory data obtained at the last hospitalization are all within normal limits. Geriatric Depression Scale is performed in your office today and it is not suggestive of depression, though E.B.’s responses are limited. Mini Mental State Examination was performed today and E.B. scored an 11/30. Compared with her previous MMSE about one year ago, on which she scored 14/30, now she is not oriented to time or place (except city and state); she also has difficulty with writing tasks. After a comprehensive physical examination, you can find no acute medical illness or other reversible cause to explain E.B.’s progressive decline. You discuss this with E.B.’s daughter.