When caring for loved ones with dementia, when is hospice care the right call?

Hospice care has long been sought out for the comfort and dignity it provides during end-of-life care and the dying process. However, many are unaware that a person does not have to be experiencing excruciating pain or debilitating symptoms in order to take advantage of this form of care. In fact, hospice care is effective for patients suffering from other chronic conditions including heart failure, stroke, liver failure, and even dementia. This article will lay out the standard criteria providers use to evaluate dementia, what some important co-morbidities are, what questions families should ask providers, and why getting hospice care early can be of benefit for both patient and family.

What are some common guidelines regarding dementia and hospice care?

Unlike other serious illnesses, Alzheimer’s disease (AD) and related dementias are extremely difficult to categorize into the 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. Furthermore, patients in the latter stages of these conditions are often unable to communicate pain, discomfort, wants and needs. This means that family caregivers and physicians can have a difficult time deciding when to seek out hospice care.

Because dementia can complicate hospice eligibility, familiarity with hospice guidelines for dementia patients is invaluable. For instance, for a patient to be admitted to a program with a diagnosis of dementia, Medicare requirements are more specific than typical hospice requirements, and involve a six-month life expectancy.

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 is unable to dress, bathe, walk, or use the restroom without help. They may also be unable to speak 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, or pneumonia. A present comorbidity is often an enrollment requirement and the patient is required to have received treatment for that comorbidity within the last year.

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, hospice care coordinators recommend 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, such as eating, bathing, or grooming

  • Extreme difficulty or complete inability to walk without assistance

  • The ability to only speak a few intelligible words and phrases

What questions should families ask providers about dementia and hospice?

A great deal of uncertainty and misinformation surrounds hospice care, and many families hesitate to discuss the option with physicians and their loved ones. 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 care exists to support patients as well as their family members throughout this trying time. Regardless of a program’s specialty, family caregivers are recommended to ask the following questions to potential providers in order to ensure their loved ones will receive the highest level of care:

1.     Is your program certified by Medicare?

2.     Is your staff experienced in providing care to patients with dementia-related illnesses?

3.     Do you offer specialized services to improve a dementia patient’s comfort?

4.     What services do you offer to the families, caregivers and friends of patients with dementia?

One of the unique benefits of hospice care in comparison to hospitalization is that the care 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. Each person’s preferences for end-of-life care vary, but hospice providers prioritize flexibility.

While it may be a difficult option to consider for a loved one, hospice can provide dignified care and invaluable support to the entire family during a difficult time.

Jamie Lim