Palliative and Hospice Care for Dementia Patients

How to decide when comfort care is appropriate for a loved one

Daughter looking at senior woman
When is it appropriate to seek palliative care or hospice for someone with dementia?. Photo © Westend61/Getty Images

Dementia is a cruel medical condition that robs its victims of their memories, faculties and independence. This article offers an overview of dementia's causes and symptoms, and how to decide if palliative care and/or hospice is appropriate for a dementia patient.

Dementia Causes and Symptoms

Dementia is a general term that refers to the overall deterioration in how the human brain functions due to injury or disease.

According to the Alzheimer's Association, an estimated 60 to 80 percent of dementia cases arise from Alzheimer's disease—the most common and probably most familiar form of dementia. Alzheimer's occurs when abnormal protein deposits in the brain destroy cells in the areas controlling our memory and mental functions.

The second most common form of dementia is vascular dementia, according to the Alzheimer's Association. This can result from a stroke or other injury or condition that reduces or blocks the flow of blood to the brain.

Other diseases that can cause dementia include Parkinson's disease, Huntington's disease and Creutzfeldt-Jakob disease.

Regardless of its cause, individuals with dementia can exhibit various symptoms, such as:

• memory loss, particularly involving their short-term memory initially

• language/communication difficulties, such as naming an object or finding the correct word for something

• changes in behavior or personality, such as controlling their emotions, growing agitated or an inability to solve problems

Depending upon the severity of dementia, some individuals might not be able to think well enough to perform Activities of Daily Living—tasks that need to be accomplished regularly in order to function—such as getting dressed, bathing or eating.

When is Palliative Care Appropriate for Dementia Patients?

Palliative care is appropriate for patients with dementia once the patient and/or the healthcare decision maker(s) for the patient decide they want to focus on the patient's comfort and quality of life.

Since hospice care is the primary resource for palliative care, however, the patient must meet various criteria in order to qualify for Medicare hospice benefits with a diagnosis of dementia. Specifically, two doctors must certify that the patient has a life-limiting illness and a life expectancy of six or fewer months.

The Centers for Medicare and Medicaid Services established the life-expectancy component relative to cancer diagnoses, but unlike cancer, which typically follows a steady decline, dementia is far more difficult to predict. A dementia patient might exhibit a period of steady decline followed by an upswing, during which he or she will improve and do well for a time.

Therefore, to help physicians estimate life expectancy for dementia patients, the National Hospice and Palliative Care Organization established guidelines that hospice agencies use as criteria for admission.

These guidelines use the "Functional Assessment Staging Tool" to quantify the severity of a patient's dementia. To qualify for hospice care, a patient must score at or above "stage seven," which means that the patient:

• cannot dress him or herself

• cannot walk without assistance

• cannot bathe properly without assistance

• is incontinent of urine and stool

• is unable to speak or hold meaningful communication

Medical complications—such as multiple hospitalizations, recurrent infections (e.g., urinary tract infections, blood infections), aspiration pneumonia (resulting from choking on food or fluids), pressure sores on the skin and/or refusing to eat—help support a life expectancy of six or fewer months.

What if a Dementia Patient Doesn't Qualify for Hospice Care?

If you and your family desire comfort care for a loved one suffering from dementia, but he or she doesn't meet hospice eligibility, you should make your wishes known to the patient's physician and other healthcare providers. Discussions regarding the intensity of any treatment(s) can help avoid unnecessary tests and procedures.

In addition, creating an advanced healthcare directive and a Do Not Resuscitate (DNR) order can help safeguard against any unwanted interventions.

Some hospice and home health agencies offer "bridge" programs for individuals who don't meet hospice eligibility requirements, or for those who still desire curative medical care and are not ready to choose comfort care alone. These programs can help patients transition more easily from traditional healthcare models to hospice care once it becomes appropriate. For example, Hospice of the Valley in Santa Clara County, California, offers its Transitions program to provide emotional and practical support to patients and families and to help identify when admission to hospice might be appropriate.

Sources:

Diane Meier, M.D., Elizabeth McCormick, M.D. and Ruth Lagman, M.D. "Hospice: Philosophy of care and appropriate utilization in the United States." http://www.uptodate.com/contents/hospice-philosophy-of-care-and-appropriate-utilization-in-the-united-states

Marie-Florence Shadlen, M.D. and Eric B. Larson, M.D. "Dementia syndromes." www.uptodate.com

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