Hospice has long been known for the ability to provide comfort and dignity throughout the dying process. Sadly, too few people are aware that a person does not have to be dying from cancer or experiencing excruciating pain in order to take advantage of end-of-life care. Hospice care is effective for patients suffering from a wide variety of chronic conditions, including heart failure, chronic obstructive pulmonary disease (COPD), amyotrophic lateral sclerosis (ALS), stroke, renal failure, liver failure and even dementia.
Unlike other serious illnesses, Alzheimer’s disease (AD) and related dementias are extremely difficult to categorize into the neat stages of progression that are typically used to determine whether hospice care is appropriate. Life expectancy is difficult, if not impossible, to pinpoint for patients affected by AD or other forms of cognitive impairment, such as vascular dementia, Lewy Body dementia and frontotemporal dementia. Furthermore, patients in the later stages of these conditions are usually unable to communicate pain, discomfort, wants and needs. This means that family caregivers and even their loved ones’ physicians can have a tough time deciding when to call in hospice.
How Dementia Complicates Hospice Eligibility
Estimating how long a person has to live is nearly impossible. It simply cannot be done with absolute accuracy in most cases, but a general idea is required in order to establish a person’s eligibility for receiving hospice care. To qualify for most programs, an individual must have a terminal health condition and a life expectancy of six months or less. However, not all life-threatening diseases progress predictably. Any dementia caregiver can attest to the fact that a loved one’s condition can improve or worsen on a daily basis. Fortunately, physicians and hospice staff who are knowledgeable about dementia, especially in the later stages, can help families determine when it is time to seek out comfort care.
“Dementia can complicate the ‘eligibility’ process for hospice but taking a person’s personality prior to their diagnosis into consideration can help,” explains Meredith Fields Lawler, LCSW, Director of Outreach Programs at the Crossroads Hospice Charitable Foundation based in Tulsa, Oklahoma.
Fields Lawler recalls a patient many years ago who had Lewy Body dementia (LBD) and whose daughter was experiencing an immense amount of stress over the worsening of his symptoms. “He would often lose track of time, and it had become hard to hold his attention. The daughter and I sat together and through tears she told me about what her dad was like while she was growing up.”
Fields Lawler and this woman were able to compare some of her father’s current symptoms to his earlier self to get a better idea of his disease progression. “Doing this seemed to take some of the fear away for her,” she recalls. “We still did not know exactly what the future held for her dad, but we were able to look at him as himself—rather than a group of scary symptoms—and determine that he was a candidate for hospice care.”
Familiarity with Medicare’s Hospice Guidelines for Dementia Patients Is Invaluable
“For a patient to be admitted to a program using a diagnosis of dementia, Medicare requires that we are more specific than typical hospice requirements involving a six-month life expectancy,” says Fields Lawler. Most programs use the following two criteria to assess if a dementia patient is a candidate for hospice services:
- The patient has a stage 7 ranking on the FAST scale.
The Reisberg Functional Assessment STaging (FAST) scale consists of 16 items that rank the progression of dementia symptoms in seven different stages. Stage 7 indicates severe dementia and means a patient suffers from incontinence and is unable to dress, bathe, walk, or use the restroom without help. They may also be unable to speak meaningfully or express their own thoughts.
- Other illnesses exist alongside the patient’s dementia.
Also known as “comorbidities,” these additional health issues are an important part of hospice eligibility. Dementia comorbidities can include sepsis, severe weight loss, pneumonia, pressure ulcers and fever. A present comorbidity is often an enrollment requirement, and the patient is required to have received treatment for that comorbidity within the last year.
“Determining eligibility can be a very difficult task for clinicians and physicians, and there is absolutely room for improvement in the current means of measurement and classification,” Fields Lawler acknowledges. “However, when patients, families, hospice teams, physicians, Medicare and other health insurance providers continue to work together, we open the doors for many more dementia patients to receive the comfort care they deserve but may not be able to request.”
When to Seek Out Hospice Care for a Senior with Dementia
A great deal of uncertainty and misinformation surrounds hospice care and many families hesitate to discuss the option with physicians and their loved ones. Fields Lawler urges families to learn and talk about this valuable resource even if it isn’t needed at the moment.
“I am a big advocate for early hospice/palliative care intervention,” she explains. “I believe that if a family caregiver is thinking their loved one needs help, has questions, and needs guidance, then that is the time to seek out assistance. It is never too early to begin gathering information and forming a plan as a family. Hospice exists to support patients as well as their family members throughout this trying time.”
Because those with dementia decline so gradually, family members may not seek help until their loved ones are very close to the end. Many do not realize that assistance and specialized care may have been available much earlier. While a physician must make the official determination of life expectancy, Fields Lawler recommends requesting a hospice evaluation if an individual with dementia exhibits the following signs:
- Constant, elevated levels of anxiety and stress;
- Complete dependence on others for assistance with activities of daily living (ADLs), such as eating, bathing, grooming and toileting;
- Extreme difficulty or complete inability to walk without assistance; and
- The ability to only speak a few intelligible words and phrases.
Some Hospice Providers Specialize in Dementia Care
While all hospices have the ability to provide care for someone with dementia, there are providers that actively specialize in this field. These hospices typically have tailored programs that are designed to support everyone involved in the life of a patient affected by this disease and help them cope with the unique challenges it brings.
Regardless of a program’s specialty, Fields Lawler suggests that family caregivers ask the following questions of potential providers to help ensure their loved ones will receive the highest level of care:
- Is your program certified by Medicare?
- Is your staff experienced in providing care to patients with dementia-related illnesses?
- Do you offer specialized services to improve a dementia patient’s comfort?
- What services do you offer to the families, caregivers and friends of patients with dementia?
Fields Lawler also emphasizes the importance of finding a provider that is staffed with well-trained and loving hospice nurses and aides—the unsung heroes of these end-of-life programs. These people will spend the most time with your loved one and help them complete the most intimate tasks like bathing, dressing and toileting. Many individuals with dementia have a fear of water, so having patient aides with a keen understanding of this disease is a must.
“When I was choosing a hospice provider for my own father, I asked the most questions about their staff members!” she admits. “We see them three times a week, and if you ask my dad what he likes most about hospice, he will say Bridgette and Carol (his aides).”
Read: A Checklist for Finding the Right Hospice Program
Weighing Hospitalization Against Hospice at the End of Life
As a loved one’s condition declines due to dementia, the likelihood of developing complications, such as aspiration pneumonia, pressure ulcers and urinary tract infections (UTIs), increases greatly. Family members must decide whether to seek curative treatment at the hospital for conditions like these, which can be mentally and physically taxing on a person who is cognitively impaired. Sadly, even if secondary health issues resolve, it is probable that they will recur. The difficult question is, should families forgo treatment in the hospital and opt for comfort care? If so, when?
The answer lies in your loved one’s personal end-of-life preferences. Hopefully this was a conversation that took place early on while they were still mentally competent and resulted in appropriate planning measures such as a living will, a do not resuscitate (DNR) order, a voluntarily stopped eating and drinking (VSED), POLST form, or advance directive. If our loved ones’ wishes have been documented, then it is up to us as their caregivers to follow them.
Fields Lawler points out that one of the benefits of hospice care is that it can be provided wherever the patient is living—private homes, nursing homes, hospice houses, homeless shelters, and anywhere else a person is comfortable and wishes to remain. “This is something that providers and employees take very seriously. I have visited patients in all of these settings,” she recalls. Each person’s preferences for end-of-life care are different, but hospice providers prioritize flexibility.
Because late-stage dementia prevents patients from effectively clearing bacteria from the body and notifying others of their symptoms or pain, infections can easily take root and are often the cause of death. Urinary and fecal incontinence, difficulty swallowing and breathing, and overall reduced immune system function all contribute to illness.
“The situations that break my heart are when patients are not being cared for by a hospice team and an infection occurs,” Fields Lawler laments. “When these infections persist in the absence of hospice, patients are often moved to an acute care hospital for treatment. Hospitals typically go to great lengths to treat the infection, including tests, treatments and medications that may not be efficient in the long term and result in discomfort, such as feeding tubes. These patients can be hospitalized multiple times for recurring issues, and the stress and discomfort that accompanies constant illness and changes in environment can quickly take a toll on them.”
Hospice ensures that the family is kept informed and involved, Fields Lawler explains, and all treatment methods are focused on the patient’s comfort and dignity. “Unlike hospitalization, this care is dedicated to comforting and nurturing a patient’s whole person physically, spiritually, mentally and emotionally,” she says.
While it may be a difficult option to consider for a loved one, hospice can provide dignified care and invaluable support to the whole family during a difficult time. Services can be stopped at any point, and there is no limit to the length of time a person can continue receiving them as long as they remain eligible.