What’s Hospice Criteria for a Loved One With Dementia?

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

According to the Alzheimer’s Association, there are over 6 million Americans with dementia, and that number will more than double by 2050. Alzheimer’s disease is the most common form of dementia, but other diseases in the dementia family are vascular dementia, Lewy body dementia, and frontotemporal dementia. One in three seniors dies of Alzheimer’s or some other form of dementia.

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For family members who provide care to a loved one with dementia (unpaid family members provide 70% of that care), stress, strain, and financial burden are immense. Alzheimer’s is a fatal disease, and we know a lot about the trajectory of the disease, but we can’t predict when someone will die.

Considering the burden on family caregivers, hospice care would seem like a valuable resource for support and care for a loved one with dementia. But simply because an older adult has dementia doesn’t mean they automatically qualify for hospice. We will examine the criteria for hospice and help you decide when the time is right to begin hospice for someone who has dementia.

Does Hospice Accept People With Dementia?

Hospice does accept people with dementia, but they must meet other criteria to qualify. Centers for Medicare and Medicaid Services determine the functional deficiencies that qualify someone with dementia to be accepted on hospice. The 6-month prognosis for someone with dementia without a co-morbid terminal condition is very strict. 

Many people with dementia have other medical conditions such as heart failure, kidney failure, cancer, or lung disease that will qualify them for hospice without meeting the dementia-only criteria. The person will be eligible as long as a physician certifies that the medical condition is terminal and likely to result in death in 6 months or less.

Keep in mind that no one knows how long a person has to live. Many people live well beyond six months on hospice and continue to be re-certified because they still meet the terminal illness condition to qualify.

What Qualifies a Person With Dementia for Hospice? 

If your loved one has dementia but no other co-occurring medical conditions, their health and functioning will have to have exceptionally deteriorated. It is not unusual for someone with dementia to still be ambulatory, able to feed themselves, and perform other activities of daily living with assistance. For a person who has dementia to qualify for hospice, they need significant help in the following areas:

Six-month diagnosis

A physician must certify that your loved one has a terminal diagnosis with a life expectancy of six months if the disease runs its course. End-stage dementia can qualify based on the hospice medical directors’ assessment of severe decline and approaching death.

A physician must certify that your loved one has a terminal diagnosis with a life expectancy of six months if the disease runs its course. End-stage dementia can qualify based on the hospice medical directors’ assessment of severe decline and approaching death.

Ambulation

The patient is bed-bound, unable to sit up independently or walk without a walker or wheelchair, and still requires stand-by assistance. If the patient is bed-bound, they may not be able to lift their head or hold it up. Or, they are unable to sit upright and could slip out of a chair without supervision. 

Eating

A person with dementia may lose weight due to loss of appetite or become dehydrated. The patient has difficulty with feeding themselves or drinking without assistance. Choking is a common problem for people with dementia due to difficulty swallowing. Sometimes food is cut up and fed to the person to minimize the risk of choking.

Urinary and bowel incontinence

Urinary and or bowel incontinence typically happens in the later stages of Alzheimer’s disease. Incontinence is believed to be due to the brain not communicating with the body, and the person doesn’t realize they have a full bladder. Loss of bladder and bowel control necessitates a great deal of care to keep someone comfortable, clean, and free from infection.

Communication

Changes in communication can be very upsetting for families to experience. When someone is going through stages of dementia, they eventually lose the ability to speak coherently or understand what is being said to them. They may say fewer than five words a day. Someone with this level of communication impairment needs round-the-clock care.

Comorbidities

Comorbidities can make it easier to qualify someone for hospice who has dementia. Common qualifying comorbidities are pneumonia, pressure ulcers, infection, sepsis, severe weight loss, heart failure, COPD, kidney disease, cancer, and several other conditions. The patient must meet the six-month prognosis requirement.

How Do You Know If a Loved One With Dementia Would Benefit From Hospice Care?

First and foremost, make sure you have completed estate planning for your loved one with dementia. When someone becomes incapacitated, it will be challenging to advocate or manage their financial and healthcare affairs without legal authority. Almost anyone with dementia could benefit from hospice care if they can qualify. There is no downside to hospice and much to be gained from family support, comfort care, and pain control. 

Many families wait too long to get hospice started and wish they had considered it earlier in their loved one’s disease. Dementia is usually a gradual disease, and over time, as your loved one’s condition worsens, you may not be fully aware of how bad things are. If in doubt, call the hospice of your choice and talk with them about whether your loved one qualifies. As the primary caregiver, evaluate your loved one and yourself in light of the following factors:

Treatment for dementia is limited

There is no cure for Alzheimer’s and dementia. Several medications can temporarily stabilize the disease but not cure it. Frequent trips to the doctor or the emergency room have become exhausting and counterproductive. There seems to be little benefit to continuing outpatient treatment. In hospice, the patient must give up treatment for the condition that qualifies them.

You have caregiver burnout

Dementia can last years which means years of constant caregiving. The stress on family caregivers can cause health and relationship problems. Although hospice is not the kind of round-the-clock care you may want, it can provide enough relief to take a break and know your loved one is in good hands. Hospice is not just for the patient. It is for the family too. Hospice can connect you to resources and services and offer you emotional support.

Levels of hospice support

Most people don't know hospice has levels of support that can help you when you need it. You may think it's not worth having hospice when they can't do everything you require. Respite care for your loved one for up to five days per year and sometimes more can give family caregivers a break.

Or, if your loved person has severe symptoms that can't be controlled, they can be sent to an inpatient medical setting for stabilization. In certain circumstances, hospice can provide limited round-the-clock care to get pain or agitation under control.

Agitation is a problem

Dementia and Alzheimer’s disease can cause significant agitation that is challenging to manage. People with dementia can have fear and anxiety about their condition or dying, but they can’t express it. Hospice agencies can treat agitation and co-occurring pain to help the patient feel calmer and more comfortable. Hospice nurses and chaplains have techniques to reassure patients with dementia.

How Do You Know If a Loved One With Dementia Would NOT Benefit From Hospice Care?

How do you know if a loved one with dementia doesn’t qualify if they don’t meet the criteria we have laid out? Even if your loved one has severely impaired memory, they could still be independent in many areas. Some concrete examples where they would not be eligible for hospice care is if your loved one can and wants to:

  • Walk unassisted
  • Communicate their needs
  • Toilet themselves even if they need a little assistance
  • Eat and drink independently 
  • Continue to treat medical conditions with the hope of getting better
  • Does not have a terminal diagnosis with a six-month life expectancy

Alternatives to Hospice for a Loved With Dementia

Most families take care of loved ones with dementia that do not qualify for hospice, so they are left to find resources to lighten the burden and provide the care needed. The reality is that it can be tough to find support without financial help, but not impossible.

Assisted living

Assisted living has changed through the years as the population lives longer. Add-on services have become the norm now and assisted living communities recognize they need to respond to the complex needs of older adults. That care includes end-of-life care that doesn’t completely replace hospice but comes close. 

You can try augmenting with home health, but that will be time-limited. Some communities will do round-the-clock checks, perform bed baths, assist people in the bathroom, administer medications, and serve meals in the apartment. However, if your loved one needs nursing care such as catheter changes or wound care, the staff may not be able to accommodate those requests. The other option is to hire private nursing services to attend to medical needs.

Home care

Home care can’t do everything, but if you need help with bathing, cooking, feeding, medication reminders, companionship, and ambulation, home care can be a valuable support. Unless you have a long-term care policy home, you will pay an hourly rate.

Or, if you qualify for Medicaid, you may have access to home care through state and federal programs. But, most home care workers can’t provide any kind of medical assistance such as injections or catheter care. You could consider home health for a time to supplement home care duties.

Home and community-based services

There is a wide range of home and community-based services to assist families with taking care of a loved one. But these programs require that your loved one qualifies for Medicaid, and there are typically long waiting lists. If and when your loved one qualifies, however, there could be significant support in the way of caregivers and nursing services.

Veterans programs 

For qualified Veterans and their spouses, there is a range of caregiver support programs and other resources for disabled Veterans. Having caregivers come to the home for a loved one with dementia can greatly benefit. Some Veterans programs also have nursing available for those that need it. 

Hospice for a Loved One With Dementia

Dementia is a devastating condition that requires multiple sources of care. Consider hospice as one valuable support service that can bring comfort to your loved one and relief to you.

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