When is it time to look into hospice care for a loved one with Alzheimer’s?

Different from other terminal diseases, Alzheimer’s disease is defined by uncertainty. It should be no surprise, then, that figuring out when and how to seek additional help for a loved one with Alzheimer’s is a difficult task.

Many people don’t realize that hospice is an option for the care and comfort of individuals with Alzheimer’s – and many more don’t realize it’s an option until their loved one’s disease progresses to late stages. Hospice care may be more closely associated with diseases such as cancer and heart or lung disease in our culture, but it’s appropriate for anyone with a terminal diagnosis. And make no mistake: Alzheimer’s is a terminal disease, even if it’s extremely tough for medical professionals to gauge how long a person who has it might live.

That raises a question, though: If a loved one has Alzheimer’s or dementia, when is it time to look into hospice?

Reading the Signs & Symptoms

One of the measurement systems often used by hospice services is the Reisberg Functional Assessment Staging (FAST) scale, which tracks the progression of dementia through 16 items across seven stages. Among the symptoms that appear on the scale are:

• Inability to walk, dress, bathe or use the bathroom without assistance
• Incontinence
• Difficulty speaking more than a few intelligible words

Associated Conditions

Hospice programs also keep track of patient comorbidities to determine eligibility. Some of the comorbidities most often associated with Alzheimer’s disease are:

• Aspiration pneumonia
• Pyelonephritis (kidney infection)
• Urinary tract infection
• Sepsis (blood poisoning, sometimes called septicemia)
• Bedsores (sometimes referred to as pressure ulcers or decubitus ulcers)
• Fever after use of antibiotics
• Inability to maintain fluids or caloric intake to sustain life

Additional Difficulties Faced by Patients

Other possible signs of Alzheimer’s – or worsening of Alzheimer’s – include eating challenges. These may include:

• Difficulty swallowing
• Difficulty coughing up fluid from the lungs
• Refusal to eat or drink, or forgetting to eat or drink
• Malnutrition

Beyond that, it can be helpful to compare the person’s behavior to their behavior earlier in life. You may notice frequently elevated levels of stress and anxiety, difficulty sleeping or disruptive behavior. Possible indicators of worsening condition include falls, uncontrolled pain, psychosocial issues and hypotension.

Getting the Process Started

Hospice care is generally defined as comfort-focused treatment for terminally ill patients with less than six months to live. But life expectancy for patients with Alzheimer’s – as well as similar dementing conditions, including frontotemporal dementia, Lewy Body dementia and vascular dementia – is very difficult to pinpoint. Making Alzheimer’s hospice criteria even more complicated, the disease impairs the patient’s ability to express themself, so they may not be able to adequately communicate regarding pain, discomfort and needs.

With anything regarding Alzheimer’s, the earlier a matter can be addressed, the better. It’s unfortunately common for people to not intervene in a loved one’s cognitive decline until very late, but it’s never too early to start formulating a plan.

Hospice Consults

Scheduling a hospice consult – in conjunction, if possible, with their primary care doctor – can help provide a clearer idea of what care a loved one may need and when it might make sense to begin hospice services. Beyond that, it’s a good idea to talk about your loved one’s wishes while they can more easily express them, including which medical treatments they do and don’t want, and also fill out legal documents while they can better answer questions.

If your loved one uses Medicare, make sure any hospice program you’re exploring is Medicare-certified.

Why Choose Hospice Care for Alzheimer’s Disease?

There may be no known cure for Alzheimer’s, but hospice care can make the life of the patient decidedly more comfortably – in fact, Alzheimer’s patients who are in hospice care often live longer than patients who aren’t. A quality hospice program for Alzheimer’s will include medical care, end-of-life counseling, respite care for caregivers and grief support, among other things.

A person with Alzheimer’s disease is also likely to spend less time in the hospital while receiving hospice care – a definite positive, as frequent hospitalization can lead to delirium for Alzheimer’s patients. Dehydration, UTIs and aspiration pneumonia are more common in individuals with Alzheimer’s and are more likely to lead to hospitalization.

Hospitalization may be able to resolve individual issues, but the patient’s not going to get any better, and if those issues can be resolved at home or in a hospice care facility, so much the better. As an added benefit, hospice care makes it easier for family members to keep apprised of their loved one’s condition, and easier for medical professionals to spot and deal with infections.

Find Out More About Hospice Care

If you have a loved one with Alzheimer’s disease and are wondering if hospice care is a good option, reach out to us today at ViaQuest. Our expansive hospice program tailors care to each patient, including those with Alzheimer’s or dementia. Take our hospice quiz or contact us today to learn more about eligibility.