Life After an Alzheimer’s Diagnosis: Palliative Care and Hospice Explained

Karen Francis's picture
Alzheimer's Disease and Palliative Care

Several years ago, I ran my very special group for the Alzheimer's Association that was for the person who had been diagnosed with Alzheimer's disease or another form of dementia AND their spouse, family members and caregivers. My goal throughout the many years that we met, was to educate and prepare everyone so that they could concentrate on making the most of their lives together instead of worrying what tomorrow would bring. No one in the group wanted to hear about hospice.

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I think that for a lot of people, hospice means that someone is dying very soon. No matter how much support I facilitated through this group or how well prepared the members were, talking about hospice signified the end to them. As I watched my group's abilities decline and the caregivers, spouses and family members depleted of their energy and their own health, I felt it would be terribly irresponsible of me to delay bringing someone into the group to talk about palliative and hospice services.

I arranged for a good, compassionate friend of mine named Van that worked for my favorite hospice to present to my group one night. I normally let everyone know what I had planned and who was joining our group for the evening but knowing the response I might get, kept the next meeting topic to myself. When I introduced my friend Van to the group, everyone was smiles until I told them why she was there. My heart broke as I looked into the eyes of one of my friend’s eyes - Pam, whose husband had been diagnosed with early onset Alzheimer's disease. She immediately began tearing up before Van even spoke. Pam whispered to me, "I'm not ready for this talk".

Before Van spoke, I got up to address the group who became very quiet with the smiles gone from their faces, some with tears and said, "Hospice and palliative care is not for dying, it is for living the remainder of your life as happy, safe, calm and pain-free as possible. Hospice and palliative care is for living with the best quality of life possible".

Q. What's the difference between palliative care and hospice care?
A. Palliative care is whole-person care that relieves symptoms of an advanced complex illness or disease, whether it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live. In other words, hospice care is always palliative, but not all palliative care is hospice care.

Q. What is palliative medicine?
A. Palliative medicine is a medical sub-specialty provided by doctors who offer palliative care for people who are seriously ill. Palliative care relieves suffering and improves quality of life for people of any age and at any stage in a serious illness, whether that illness is curable, chronic, or life-threatening and can be provided along with curative treatment.

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Q. What is hospice?
A. Hospice is a philosophy of care. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well. Hospice care is patient-centered because the needs of the patient and family drive the activities of the hospice team.

Q. Is hospice just for the last few days or weeks of life?
A. You are eligible for hospice care if you likely have 6 months or less to live (some insurers or state Medicaid agencies cover hospice for a full year). Unfortunately, most people don't receive hospice care until the final weeks or even days of life, possibly missing out on months of helpful care and quality time.

NOTE: I have personally cared for patients who went on hospice because things were looking grim but instead of passing, they bounced back, largely in part to the extra care they received with hospice care. I had a patient who was 98 and put on hospice after a series of falls and a case of pneumonia. Her condition improved so she went back off hospice. She was admitted to hospice care 5 times before she passed away at the age of 103, peacefully, on hospice.

Q. Does insurance cover palliative care or hospice?
A. Many private insurance companies and health maintenance organizations (HMOs) offer palliative care and hospice benefits. Medicare (mostly for people 65 and older) offers hospice benefits, and the extra Medicare plan (Part B) offers some palliative care benefits. Medicaid coverage of hospice and palliative care for people of limited incomes varies by state.

Q. What kinds of treatment, services and therapies are offered under hospice?
A. Interdisciplinary team members supply a variety of services during routine home care, including offering necessary supplies, such as durable medical equipment, medications related to the hospice diagnosis and incidentals like diapers, bed pads, gloves, and skin protectants. Twenty-four hour on-call services must be available as needed. Typically, this is provided after normal business hours by a registered nurse prepared to address urgent patient concerns. Many Palliative and Hospice programs not only offer what is considered standard treatment but also offer things such as massage therapy, music therapy, clergy.

Palliative care and hospice care are a blessing (especially for someone with a dementia diagnosis) that should be taken advantage of as early as possible. If your loved one has lost the ability to take care of their own activities of daily living (grooming, bathing, eating), have had recent hospitalizations, have had a weight loss, have lost the ability to ambulate (walking, walking with a walker or ability to propel themselves in a wheelchair along with not being able to transferred from a bed to chair, chair to chair, etc.), have problems with swallowing, incontinence - they may qualify. Contact a trusted Hospice or Palliative care group to request and assessment.

I wanted everyone in my support group to be surrounded by love and all the care they needed and deserved in their final days - no matter how many days they have left. Just because someone is on hospice or receiving palliative care doesn't mean death is imminent. No one has an expiration date stamped on their foot.

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