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Palliative Care for Dementia

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Updated May 20, 2014

Palliative Care for Dementia
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Dementia is a cruel disease. It robs its victims of their memories and, eventually, their facilities. It also robs the victims loved ones of the person they know and love.

Dementia is a term for a group of symptoms arising from diseases that affect the brain. People with dementia may not be able to think well enough to do Activities of Daily Living (ADL), such as getting dressed, bathing or eating. They may lose their ability to solve problems or control their emotions, and they may become agitated or see things that are not there (hallucinate). Their personalities often change.

A common symptom of dementia is memory loss, but that alone doesn’t qualify for a diagnosis of dementia. A person with dementia also has serious problems with language.

Dementia can be caused by several diseases: Alzheimer’s is the most common and probably most well-known form of dementia. Alzheimer’s occurs when abnormal proteins deposit in the brain and cells are destroyed in the areas that control memory and mental functions. Other causes of dementia include stroke or vascular disease, lewy body dementia, Parkinson’s disease, Huntington’s disease and Creutzfeldt-Jakob disease.

When is Palliative Care Appropriate?

Palliative care is appropriate for patients with dementia once the patient and/or the health care decision maker(s) for the patient decide they want to focus on comfort and quality of life. Since hospice care is the primary resource for palliative care; however, specific criteria have to be met for a patient to qualify for hospice benefits with a diagnosis of dementia.

For any patient to qualify for hospice care, two doctors have to certify that the patient has a life-limiting illness and a life expectancy of six months or less. The life expectancy component was established by the Centers for Medicare and Medicaid Services in relation to cancer diagnoses. Unlike cancer, which typically follows a path of steady decline, dementia is much more difficult to predict. Patients with dementia may have periods of steady decline followed by an upswing, where they improve and do well for a time.

To help physicians predict life expectancy for patients with dementia, the National Hospice and Palliative Care Organization (NHPCO) has established guidelines that hospice agencies use as criteria for admission. These guidelines use the Functional Assessment Staging Tool (FAST) to score the severity of a patient’s dementia. To qualify for hospice care, a patient must score at or above a stage seven, which means that the patient:

  • cannot dress themselves
  • cannot walk without assistance
  • cannot bathe properly without assistance
  • is incontinent of urine and stool
  • is unable to speak or have meaningful communication.

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

What if They Don’t Qualify for Hospice Care?

Often a family desires comfort care for their loved one, who is suffering from dementia, but they don’t meet hospice eligibility. In these circumstances, making your wishes known to the physician and other health care providers, regarding intensity of treatments, can help avoid unnecessary tests and procedures. Having advanced directives and a Do Not Resuscitate (DNR) order can help safeguard against any unwanted interventions.

Some hospice and home health agencies offer “bridge” programs for patients who don’t meet hospice eligibility or aren’t ready to choose comfort care only. These programs provide patients an easy transition from traditional care models to hospice care, once it’s appropriate. Hospice of the Valley, a nonprofit hospice agency in Santa Clara County, Calif., offers a Transitions program that is staffed by volunteers. The volunteers provide emotional and practical support to the patient and family and can help identify when admission to the hospice may be appropriate.

Sources:

Ruth Lagman, MD Hospice: Philosophy of care and appropriate utilization for Uptodate.com.

Marie-Florence Shadlen, M.D. and Eric B Larson, MD, MPH. Dementia syndromes for Uptodate.com

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