(LifeWire) - Alzheimer's disease has edged out diabetes as the sixth leading cause of death in the United States, and the number of families caring for someone with this progressive brain disorder is only expected to grow as the population ages.
As a result, hospice care, once associated almost exclusively with cancer, is increasingly viewed as an end-of-life option for Alzheimer's individuals. But because this disease progresses slowly -- and the late stage isn't easy to define -- people with Alzheimer's can face difficulties meeting hospice eligibility requirements.
Benefits for the Patient
Some aspects of hospice care may seem unlikely to help people with severe dementia. The counseling usually offered to dying patients may be of little use for those who've lost the ability to communicate with language, for example.
But other hospice services could have a positive impact. Pet therapy (the holding and stroking of small, gentle animals), for example, can provide comfort and reassurance. Music therapy has shown even greater promise.
In Musicophilia: Tales of Music and the Brain (2007), Dr. Oliver Sacks writes that for those with severe dementia, music -- particularly familiar music - can sometimes elicit "emotions and associations that had been long forgotten, giving the patient access once again to moods and memories, thoughts and worlds that had seemingly been completely lost."
People with severe dementia may also derive benefit from reassuring, friendly voices or being read to, even if they can't understand what's being said.
Certainly, they benefit from palliative care -- efforts aimed at alleviating pain and discomfort without extending life. In conventional settings, researchers have found that Alzheimer's individuals endure more pain than necessary because they can't express themselves with words, and their agitation is often misunderstood.
Support for Caregivers
Caring for someone with severe dementia is physically and emotionally draining. In regard to prognosis, those with Alzheimer's can live anywhere from 8 to 20 years after diagnosis.
The demands often go beyond what family members alone can provide. But hospice helps make it easier for those with dementia to remain in the familiar surroundings of their own homes. While family members continue providing much of the day-to-day care, their efforts are augmented hospice nurses, social workers and trained community volunteers.
Some hospice programs also arrange respite care to give family caregivers a break.
Sometimes the burdens of late-stage dementia force the family to seek full-time residential placement for a loved one. There may be hospice options in this case, as well, including residential hospices and hospice care provided through a nursing home.
Last but not least, hospice offers family grief or bereavement counseling.
If a loved one has Alzheimer's disease, you should discuss end-of-life care preferences as soon as possible. He or she may have strong feelings on these matters.
Advanced directives are legal instruments that help ensure that such preferences are honored. They include:
However, such steps should be undertaken while the person is still legally competent.
In choosing a hospice program, it's important to find out what services are available and whether the program is Medicare-approved. A convenient location certainly matters, too. In addition to conducting your own research, speak with people who've had family experience with a given hospice program. Doing so can help you get a more personal perspective.
Eligibility and Financing
Because Medicare covers more than 80% of their patients, hospice programs generally apply Medicare regulations across the board. The biggest hurdle for a person with dementia is the stipulation that she or he has no longer than six months to live. Physicians make their assessments using Medicare eligibility guidelines, which focus mainly on physical deterioration. To be eligible for hospice care, a patient must be:
- unable to walk unassisted
- unable to dress him- or herself
- unable to bathe or see to grooming needs without help
- unable to control bowel and bladder
- unable to converse effectively (though some language may remain)
In addition, the individual must have had at least one serious health issue, such as a severe lung or kidney infection, evidence of profound nutritional problems, or severe open bedsores.
A 2007 study in the Journal of Pain and Symptom Management found that hospice patients with dementia often exceed the six-month limit. It's important to know that, should this happen, a patient can be recertified for successive 30-day periods and in order to continue receiving Medicare coverage.
On the other hand, the study suggests that the six-month rule "has hindered access" to hospice care for those with dementia. Currently, people with Alzheimer's disease (and other forms of dementia) account for just 10% of all hospice patients.
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