Hospice has long been known for the ability to provide comfort and dignity throughout the dying process. Sadly, too few people are aware that they or their loved ones do not have to be dying from cancer or be in excruciating pain in order to take advantage of this end-of-life care.
Hospice care can be just as effective for a much wider range of patients suffering from chronic conditions. This can include those affected by heart failure, chronic obstructive pulmonary disease (COPD), amyotrophic lateral sclerosis (ALS), stroke, renal failure, liver failure and even dementia.
Unlike these other serious illnesses, Alzheimer’s disease (AD) and dementia are extremely difficult to categorize into 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 a patient affected by AD and related conditions like vascular dementia, Lewy Body dementia, and frontotemporal dementia. Furthermore, patients in the later stages are usually unable to communicate things like pain or discomfort. This means that family caregivers and even their loved ones’ physicians can have a tough time deciding when to call in hospice.
I have had personal experience with end-of-life care for dementia patients, but there is always more to learn. Meredith Fields Lawler, LCSW, is the Director of Outreach Programs at the Crossroads Hospice Charitable Foundation and agreed to provide the education many of us need in order to fully comprehend what proper care at the end of life can do for our loved ones with dementia.
AgingCare: Meredith, how can dementia complicate a patient's estimated life expectancy for hospice purposes?
Meredith: Estimating how long a person has to live is nearly impossible. It simply cannot be done with absolute accuracy in most cases. Dementia can complicate this process, but taking a person’s personality prior to their diagnosis into consideration can help. I had a patient many years ago who had Lewy Body dementia (LBD). His daughter was his primary caregiver and 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 her dad while she was growing up. We were able to look at some of his current symptoms and link them back 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. We still did not know exactly what the future held for her dad, but we were able to look at him as himself and rather than a group of scary symptoms.
AgingCare: What criteria are used to admit someone with dementia into hospice care under Medicare guidelines?
Meredith: 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 6-month life expectancy. Most programs use the following as a standard in assessing if a dementia patient is appropriate for hospice services:
- The patient has a stage 7 ranking on the Functional Assessment Staging (FAST) scale.
The FAST scale consists of 16 items that rank the progression of dementia symptoms. For example, a ranking at stage 7 means a patient suffers from incontinence and is unable to dress, bathe, walk, or use the restroom without help. They are also unable to speak meaningfully or express their own thoughts.
- Other illnesses presently exist alongside the patient’s dementia.
Also known as “comorbidities,” these 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 the current means of measurement and classification absolutely have room for improvement. However, by patients, families, hospice teams, physicians, and Medicare continuing to all 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.
AgingCare: How do you know when to seek hospice for a dementia patient?
Meredith: Very simply put, ask now! I am a big advocate for early hospice/palliative care intervention. 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. I encourage families to talk to their doctor, other family members and friends who have used a hospice or palliative care program and to begin their own research using sites such as AgingCare. It is never too early to begin gathering information and forming a plan as a family. Hospice is here to support the patient as well as their family members. It is important to know that there are people out there whose passion is helping families navigate these very trying waters.
But, I will get off my soapbox for a moment and give a more detailed answer to your question. Those suffering from dementia decline slowly over time. This can sometimes cause family members to not seek help because their loved one's condition has changed so gradually. While a physician must make the official determination of life expectancy, it is time to request hospice enrollment 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.
AgingCare: Are there providers that specialize in end-of-life dementia care?
Meredith: While all hospices have the ability to provide care for someone with dementia, there are providers that actively specialize in this. 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 challenges it brings to patients, family and caregivers alike.
Regardless of the program’s specialty, family caregivers can ask the following questions of a provider to help ensure their loved one 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?
I also find that you cannot underestimate the importance of well-trained and loving hospice nurses and aides. They are the true backbone and unsung heroes of these end-of-life programs. This is the disciple that will spend the most time with your loved one and help them complete the most intimate tasks like bathing, dressing, toileting, brushing their teeth, etc. 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 aides! 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).
(This full Hospice Checklist will help you find a reputable provider for your loved one.)
AgingCare: What are the benefits of comfort care over hospitalization at the end of life for common issues like urinary tract infections (UTIs) or pneumonia?
Meredith: To answer this question, you need to refer to your loved one's 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.
Hospice is provided wherever the patient is. This can take place in people’s 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.
Many people want to die at home, and by the time they enter a hospice program, they are completely over hospitals. Then there are people that want to stay at home for most situations, but wish to die in a hospital or hospice house. We respect all of these situations and work to make this happen for each patient and family.
The situations that break my heart are when patients are not being cared for by a hospice team and an infection occurs. This is common in those with late stage dementia and infections are often the actual cause of death. This is primarily due to the patient’s inability to clear bacteria from their body and notify others of their symptoms or pain. Urinary and fecal incontinence, difficulty swallowing and breathing, and an overall reduced immune system all contribute to illness.
When these infections persist and the patient resides at home or in a facility without the benefit of hospice care, they are often moved to an acute care hospital for treatment. In these scenarios, hospitals typically go to great lengths to treat the infection, including 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 knowledgeable and involved, and all treatment methods are focused on the patient’s comfort and dignity. Unlike hospitalization, this care is dedicated to the comfort and nurturing of a patient’s whole person—physically, spiritually, mentally and emotionally.
AgingCare: Can a dementia patient stay on hospice for longer than 6 months?
Meredith: Yes. However, if the patient stays on service longer than 6 months, their eligibility must be re-determined by a physician to again qualify for the provision of services and related coverage options, such as Medicare, Medicaid or other health insurance. This is not specific to dementia patients, though. This applies all individuals who have elected hospice.
My heartfelt thanks go out to Meredith Fields Lawler, LCSW, and the Crossroads Hospice Charitable Foundation for helping us understand how valuable this care can be for those with dementia as well as their caregivers.