Thursday, February 4, 2010

Hospice Care for Alzheimer's and Dementia Patients

Did you know that your elder with Alzheimer's or other specific end-stage dementia could qualify for hospice care? Medicare has established hospice guidelines for end-of-life care for patients who have entered a terminal phase of dementia or any other terminal disease.

In the last and most challenging stages of dementia, caregivers can get support through hospice. It is paid through Medicare, as well as most private health insurances for those under 65 who qualify. Intermittent visits from nurses, hospice physicians, health aides, medical social workers, spiritual counselors and trained volunteers can help to reduce the burden of care giving. However, hospice is not meant to be a caregiver substitute.

If your elder has shown a decline in health status such as 10% weight loss in the last six months, is now dependent in at least 2-3 ADLs (the more the better), cannot converse effectively (speaks less than 6 words), is incontinent of urine and stool, and in the last 6 mos. has had a severe health issue such as an infection (urinary sepsis, aspiration pneumonia), stage III or IV bedsores, has lost greater than 10% of their normal body weight, or has had an exacerbation of a co-morbid illness, or recent hospitalization for Urinary Sepsis or Pneumonia, they may qualify for hospice care. Note that Alzheimer's can take 10 years to reach the terminal stage and hospice care is designed solely for the end stage.

The primary care physician has to certify that they have 6 months or less to live. (They can live past six months and as long as they don't show improvement, but rather continue to decline at a slow and steady rate, they will most likely qualify to continue hospice care until they pass away. Please note that some patients will improve substantially under hospice care and be discharged until they once again have a true terminal trajectory.)

Hospice care can help to palliatively control and help prevent issues such as hallucinations and behavior problems like "sundowners," calling out, or yelling at night, and infections from such sources such as the bladder, skin breakdown, incontinence, and aspiration. Any pain and respiratory distress can also be controlled to make for an improved quality of life and  peaceful passing. The earlier the hospice can get involved during the end stages, the better the chances for controlling these issues.

Although end-stage dementia patients will most likely not benefit from most of the emotional and spiritual support that hospice can provide, the caregivers and family members should be able to enjoy this benefit at the time when they can be in the most need of this support.

The hospice agency can assess and help determine if your loved one is eligible for hospice care. An order for a hospice evaluation is needed from the primary care physician. If your loved one is not quite yet eligible for hospice care, the hospice may be able refer to home health or to palliative care until they do meet criteria.

If your loved one is on a managed Medicare aka Medicare Advantage program, they will revert to regular Medicare for the hospice care. If they need medical care for a non-hospice related issue, the managed care remains in effect for this treatment. The hospice agency can explain this.

Don't overlook this valuable resource option. Talk to the physician and arrange for a hospice evaluation. Find an accredited hospice through the National Association for Home Care and Hospice (NAHC) or the National Hospice and Palliative Care Organization (NHPCO).

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  1. Thank you so much for all the information you provide! It's really helped me- I'm researching how to become a caregiver for my elderly parents.

    I found this website,, which has offered a lot of helpful suggestions and information.

    I just wanted to pass it along to anyone who might be interested.

    ShareWIK stands for Share What I Know, and the site offers information from doctors and other experts as well as stories and advice from people who've had to go through the pain of 'parenting your parent.' (This links to a really interesting video featuring several individuals who share their experiences) (This links to a blog post by a woman who shares her experiences transitioning her mother from independent to assisted living. Very insightful.)

    Hopefully you find these links as helpful as I did!

  2. My Mom qualified for hospice due to dementia this past July. My Mom passed away on August 24. It was shocking, scary and not at all a natural passing. I cared for her during that time and saw her fast demise. Basically once Hospice admits you to the hospital unit for "symptoms management" you automatically get a fentanyl patch stuck on you, lots of atavan, morphine. My Mom had no pain and those 3 meds are all about pain. Be careful k?


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