How Hospice Helps People Living with End-Stage Dementia

Whether you or a loved one are facing a new dementia diagnosis or have been living with dementia for some time, it is common to have questions about what to expect as dementia progresses. Dementia is often described in stages, with the last stage being the final or end stage progressing to the end of life.

It’s never too early to understand how hospice can help people living with end-stage dementia so that you can be best prepared to provide comfort and support quality of life during this stage of a dementia diagnosis.

What is End-Stage Dementia?

In the early stages of dementia, individuals diagnosed with the illness may have only mild symptoms. As dementia progresses, however, these symptoms eventually worsen. In end-stage dementia, symptoms are severe. This includes late-stage Alzheimer’s disease as well as other dementias.

During this time, a person living with dementia may sleep more, decrease their food intake, and interact less and less with their environment and those around them. Eventually, these symptoms will overlap with symptoms of the dying process. Because hospice care can help support families and people living with the progression of end-stage dementia, it can be useful to involve hospice when symptoms of this stage begin.

What Are the Symptoms of End-Stage Dementia?

End-stage dementia can develop over time, or caregivers and loved ones may notice a more rapid increase in symptoms as the final stages begin. This often causes confusion and uncertainty for families who are unsure how to manage their loved one’s symptoms and quality of life.

If your loved one is living with end-stage dementia, there are some key symptoms you may notice: ¹

• Difficulty communicating, including expressing pain
• Decrease in physical abilities, including movement, eating and swallowing
• Increased risk of infections
• Reduced awareness of surroundings
• Decreased memory of recent events
• Need for 24/7 assistance with activities of daily living
  

How Long Does End-Stage Dementia Last?

On average, end-stage dementia lasts between one and two years.² However, when these symptoms begin, it is a good time to think about goals for end-of-life care. By working together with your healthcare provider and beginning a conversation about hospice, you can be prepared to support your loved one during this stage of the illness.

What Are Signs Death May Be Near for Someone Living with End-Stage Dementia?

As mentioned above, some common signs that death is likely near are also a part of end-stage dementia. This can include symptoms like increased confusion, reduced interaction and communication and difficulty with self-care activities. As end-stage dementia worsens and a patient begins experiencing symptoms of the dying process, other symptoms may include:

• Increased disorientation, restlessness or unresponsiveness
• Increased sleeping/change in sleep patterns
• No longer eating or drinking (or only very small amounts)
• Shallow, irregular breathing
• Chest congestion
• Fluids accumulate in throat causing “death rattle”
• Drop in body temperature and blood pressure
• Cold feet and/or hands that are darker in appearance

How Can Hospice Help Someone with End-Stage Dementia?

There is often a misconception that hospice is only for the final days or weeks of a person’s life. In fact, hospice is for anyone with a life expectancy of six months or less, as certified by a physician.³ Patients with end-stage dementia who meet these criteria can benefit from the support hospice provides.

The symptoms of end-stage dementia can lead to difficulty with quality of life, such as increased pain, risk of pressure ulcers due to lack of mobility, infections and problems with activities of daily living.⁴

Hospice care offers several benefits for those living with end-stage dementia:

• Advance care planning from a social worker, including helping families understand what to expect as the illness progresses
• Pain management, even if the person cannot communicate pain levels
• Spiritual support
• Bereavement support for loved ones
• Caregiver support including help with activities of daily living and respite care
• Nursing care, including education, symptom management and wound management if appropriate
• Help finding community resources for your unique needs

Does a Dementia Diagnosis Qualify Someone for Hospice?

While a dementia diagnosis alone does not automatically qualify someone for hospice care, end-stage dementia does lead to a decline in health that can qualify a person for hospice based on a doctor’s determination that the person has a life expectancy of six months or less if the disease follows its expected course.

Hospice providers evaluate the overall clinical picture rather than the diagnosis alone to determine whether hospice services are appropriate. Other hospice eligibility criteria for end-stage dementia include:

• The patient and family choose comfort-focused care rather than curative treatment for the terminal condition.
• The patient enrolls with a Medicare-certified hospice provider (for Medicare hospice benefits)

To help evaluate whether the person has signs of progressing dementia and declining functional status, one tool providers use is the FAST Scale (Functional Assessment Staging Tool). This tool measures progression of Alzheimer's disease from normal cognition to severe/end-stage dementia.

Medicare guidelines commonly look for FAST Stage 7 or beyond as a starting point for hospice consideration. Stage 7 includes severe functional decline such as:

• Unable to perform toileting, bathing and dressing independently
• Incontinence
• Limited speech
• Loss of ability to walk independently
• Inability to sit up without assistance
• Inability to smile or hold up the head in the most advanced stages

Who Will Be Part of My Hospice Team for End-Stage Dementia?

When you choose hospice for end-stage dementia care, you can expect a comprehensive interdisciplinary team of healthcare professionals to join you and your loved one in supporting this stage of a dementia diagnosis. This will include:

• The patient’s primary care physician and nurse practitioners
• Hospice physician (medical director)
• Hospice nurses
• Hospice aides
• Volunteers
• Bereavement counselors
• Social workers
• Chaplains

When is it Time for Hospice Care?

There are some signs that it may be time for hospice that can help guide your decision. However, some of these early signs may be the same as end-stage dementia symptoms, adding to the confusion. A physician will determine if the patient has reached the terminal point in their illness, which will make the patient eligible for hospice services.

If you’re concerned that your loved one is experiencing symptoms of end-stage dementia, but uncertain whether it’s the right time for hospice care, a hospice coordinator can help walk you through your options.

If it’s not time for hospice care, patients with end-stage dementia may benefit from palliative care services. Palliative care address quality of life, symptom management and advance care planning during complex and advanced illnesses like dementia. A palliative care team can also help you recognize when it’s appropriate to transition to hospice services as dementia progresses.

Making the Decision to Call Hospice for End Stage Dementia Care

If you’re still unsure whether hospice care is right for your loved one’s end stage dementia, you can discuss symptoms you’ve noticed with your physician and ask if they think hospice may help with your current needs for dementia care.

No matter what you decide, you can change your mind at any time. You can opt out of care or decide to enroll based on your needs. To help you decide, take our hospice quiz for a personalized report on whether hospice might be right for your situation.

Deb Gallaher, MBA, MSN, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.