Hospice for Dementia and Alzheimer’s

Last Updated: November 23, 2020

Written by the Open Caregiving Team. Editorial review by Joyce O. Murphy RN, MSN.

What are the signs of end-stage dementia?

The various forms of dementia, including Alzheimer’s disease, progress differently in each person. For some, there is a decline of several years, yet for others the decline happens more quickly. Regardless, your loved one and those of many others, come to a point where they are determined to be in the final stages of dementia.

The signs that happen about six months before your loved one passes are:

  • A new diagnosis such as cancer or heart disease, among others.
  • More trips to the ER for accidents such as falls; behavioral issues; and other health concerns such as the flu and dehydration.

Signs that your loved one may pass in about three months include:

  • Limited talking with a small vocabulary.
  • Trouble eating and swallowing both food and beverages.
  • No longer being able to walk and needing help with sitting and moving from a wheelchair to bed.
  • Being unable to control the bladder or bowels.

During your loved one’s final weeks and days you’ll notice that:

  • They sleep a lot and fade in and out of various levels of being alert.
  • They have increased trouble with swallowing.
  • Their arms and legs become chilly to the touch.
  • They become anxious and agitated with periods of restlessness.

What is the hospice eligibility criteria for dementia?

Hospice eligibility occurs when your loved one has six months or less to live. This takes into consideration the typical length of time people have end-stage dementia. Even then, there are challenges for families and professionals alike in determining how much longer a person with dementia will live. Here are various requirements that are considered:

Hospice requirements for your loved one with dementia

  • Physician determination that your loved one has six or less months to live. If life extends beyond six months, the physician recertifies that your loved one is still in need of hospice services.
  • Enrollment in Medicare Part A, Medicaid, or other insurance that covers hospice care for those with dementia.

Medicare hospice criteria for dementia

  • Physician determination that your loved one has six or less months to live. Added to this, your loved one with dementia needs to:
    • Have a stage 7 on the FAST scale, meaning there are life functions they cannot do on their own. These include going to the toilet, dressing, and eating. People in this stage have trouble talking and understanding what others are saying.
    • Have other illnesses along with dementia. These can include infections like pneumonia, extreme weight loss, and skin breakdown.
  • Enrollment in Medicare A.

Hospice dementia FAST Scale

  • The FAST Scale (noted above) is used by physicians to determine your loved one’s stage of dementia.
  • This scale measures a person’s ability to communicate and take care of themselves and regular tasks like paying bills and taking care of one’s home.
  • This scale has been tested and is widely used for caring for people like your loved one.

When to call hospice for dementia

One of the challenges with caring for a loved one with dementia is that their condition can change from day to day. One day they think you are someone else. The next they call you by name and can carry on a short, simple conversation. Or, one day they can feed themselves and the next day they cannot. This can make it hard to know when to call hospice. Here are some guidelines to help relieve your concerns.

It is a good idea to get in touch with hospice sooner rather than later.

  • The hospice agencies you’re interested in can guide you with planning.
  • You will be told what signs to look for and what needs to be in place for them to care for your loved one.

Keep track of your loved one’s changes, including increased care needs.

  • Caring for people with end-stage dementia requires 24-hour care. This places physical and emotional demands on all of your loved one’s caregivers.
  • By keeping a simple diary about your loved one’s condition and changes, you help their physician with assessment. Plus, this is information to share with a potential hospice agency.

Your loved one’s care team will let you know when hospice is appropriate for dementia.

  • You can bring up hospice with your loved one’s doctor. You don’t need to wait for them to bring it up.
  • They’ll be able to guide you based on their experience.
    • They have assessed your loved one’s type of dementia and changes in memory and behaviors. Their objectivity can help you with the decisions you need to make.
    • This includes knowing when to call hospice as part of planning ahead.

What can hospice do for a patient with dementia or Alzheimer’s?

As you read here, the signs associated with end-stage dementia are challenging as well as sad. That is because your loved one can no longer communicate, is likely bed-ridden, and can easily become restless or agitated. Hospice provides personalized dementia care and symptom management such as:

  • Medications to manage symptoms that are the result of your loved one’s decline.
  • Information about behaviors that might mean your loved one is in pain or is agitated.
  • Support for caring for your loved one who is confined to bed, such as:
    • Ways to keep them and others safe. This can include special equipment and learning how to move safely.
    • How to monitor their skin and care for it when there are signs of pressure or damage.
    • Helping you choose special equipment, both large and small, that promotes safety and comfort.
    • How to manage their swallowing challenges.
  • Dementia assessment provided by professionals who specialize in the care of people with dementia and Alzheimer’s.
    • They are able to tell the difference between symptoms caused by another disease or illness and those caused by dementia. For example, pneumonia or a urinary tract infection can have symptoms that are somewhat different than those of dementia.
    • Their assessment may result in prescribing different medications to manage symptoms.

What can hospice do for the family of a patient with dementia or Alzheimer’s?

Most families with a loved one in hospice benefit from the support and information provided by a hospice team of caregivers. In the case of dementia, there is special value as the family may have been living with their loved one’s decline for years. And that includes the loss of their loved one as they once knew them, often long before they pass.

Family caregiver education, respite, and support may include:

  • Providing education as needed about the varying stages of dementia, even as changes occur during the last weeks of life.
    • Some family members may need to be updated about your loved one’s current condition.
    • Caregivers guide family members and friends with how to communicate even though your loved one may not respond.
  • Information can include what it is like to live with someone who has dementia.
    • This is also a supportive conversation as family members can benefit from processing what they have experienced.
    • People may express concerns for their own future, especially if they feel their memory is not what it was in the past.
    • It can help people to know that medical science is continuing to learn more about the various forms of dementia. This helps people realize why the disease progresses differently from one person to the next.
  • Respite care helps you to care for yourself while your loved one is in hospice.
    • This, along with counseling and support groups, helps you and other family members cope with the physical and emotional effects of providing end-stage dementia care.

The hospice team guides and supports your family if your loved one’s care cannot be managed in the home setting.

  • They provide assurances that are respectful of all involved.
  • They discuss other hospice options and if there are any particular conditions associated with each.
  • The goal is to assure that your loved one is well cared for and consideration is made for everyone’s well-being.

Do certain hospice providers specialize in dementia care?

There are hospice providers who specialize in memory and dementia care. When you are finding the best hospice provider near your loved one, be sure to ask if they are experienced in caring for dementia patients and what percentage of their past patients have had dementia.

While some hospice providers and professionals specialize in dementia, more physicians, medical professionals and prescribing professionals need additional training to care for the aging population. It is always worthwhile to do your own research and learning to make sure you can ask the right questions and understand changes in your loved one’s condition.

Does Medicare cover hospice for dementia?

Yes, Medicare covers hospice for dementia.

  • The hospice provider needs to be a Medicare-certified organization.
  • The patient needs to meet the eligibility requirements described earlier in this article.

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