Living with Dementia: How Hospice Care Can Help

What is dementia? And perhaps just as importantly, what isn’t it? In the coming months, I’ll be writing a series of articles on dementia to address the concerns of caregivers and family members who have a loved one living with dementia. Many people think of hospice care as being for the dying, and therefore not appropriate for someone who has “only” been diagnosed with dementia. However, hospice care can help greatly in the day-to-day living of a person with dementia.

Dementia refers to a decline in the mental abilities of a person. It is not a diagnosis in itself. And it is not synonymous with mental illness. When we say a person has dementia, we are referring to symptoms that include memory loss, absentmindedness, confusion, the inability to think rationally, a decline in social skills, and inappropriate emotional reactions. There are many types of dementia. Alzheimer’s is the most common form and accounts for approximately 75% of all dementias.1

Alzheimer’s is a degenerative disease that will ultimately become fatal; the mortality rate due to this disease is increasing faster than any other leading fatal condition. In 2004, it was the fifth leading cause of death among Americans older than 65 years of age2. There are hospice eligibility guidelines for people with different types of dementias, but few of these patients ever receive hospice services. New research published in the Journal of Pain and Symptom Management sheds new light on the benefits of hospice care for late-stage Alzheimer’s disease, and addresses the barriers to receiving that care, which I have summarized below.

Hospice is palliative care provided at the end of life. Patients with a terminal diagnosis and a prognosis of six months or less are eligible under benefit guidelines. Sometimes, however, patients live longer than this six-month period, especially those whose decline is slower. A patient in the final stages of Alzheimer’s is the perfect example. Because pain management and symptom control is difficult with this dementia, many patients are cared for in nursing home settings. They need help with feeding, dressing, toileting and behavior control. Since the final stage of this disease can last from months to years, they could need care for a long time. These patients remain eligible for hospice services if their decline is measurable (from month to month) and their prognosis can be recertified by their primary care physician.

The National Hospice and Palliative Care Organization contributed to the foregoing study by sending satisfaction questionnaires to surviving family members to help clarify this figure. The results indicated an overall satisfaction rating of 76.4% for all terminal diagnoses, and 73.3% for dementia decedents. Families stated their loved ones received: (1) better pain control, (2) fewer invasive treatments and (3) fewer terminal hospitalizations while on hospice services.

Some common obstacles that impede or delay hospice enrollment include:

  • Nursing homes may not suggest hospice services when appropriate
  • Families/physicians not recognizing dementia as a terminal illness
  • Doctors may be reticent to certify that a patient has 6 months (or less) to live, because some patients may actually live longer
  • Lack of physician education regarding disease process
  • Identifying and controlling pain/symptoms in the cognitively impaired

Most hospices establish contacts with their local nursing homes to facilitate accessibility. However, if a family wishes to place a dementia patient in a nursing home that does not have a contract with a particular hospice, that hospice can initiate one. Further, the nursing home can also contact a hospice on the family’s behalf. When the patient receives hospice services, the facility gains an entire team of professionals who help with the care and management of the unique symptoms of the dementia patient. The hospice nurse recognizes the need for facility staff training, care coordination and open communication to address the needs of the patient. It’s a win-win-win proposition for facility, patient and family.

Physician education is a large part of community outreach for most hospices. The physicians need to understand that dementia can be a terminal illness and the Medicare/Medicaid regulations surrounding hospice care. It is the responsibility of each hospice to educate their community physicians regarding the six-month prognostication, and recertification process. Families need to have the physician initiate the conversation about changing needs of care, and how hospice can benefit the dementia patient. Because the hospice philosophy states all terminally ill patients deserve the best possible palliative care to address the physical, social, psychological and spiritual self, it is the natural progression for a life closure with dignity and respect in the final stages.

For families dealing with dementia—regardless of specific diagnosis—hospice care can help with the day-to-day challenges. Whether the care is provided in the home or in a facility, there is never a charge for services provided by a nonprofit hospice. For-profit hospices may charge a nominal co-pay for certain items such as medications. Hospice specialists can manage the specific problems of end-stage dementia and help ensure that these patients receive the quality care they deserve while being treated with dignity and respect.

Celebrating Life!

Audrey Wuerl

1Alzheimer’s Association. (2007.) Alzheimer’s Disease Facts and Figures: 2007. Accessed November 21, 2007.

2 Connor, S.R., Kiely, D.K., Miller, S.C., Mitchell, S.L., Spence, C. and Teno J.M. (2007, July 1.) Hospice Care for Patients with Dementia. Journal of Pain and Symptom Management, 34:7–16.