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7 Things To Know When Considering Hospice Care for a Loved One with Dementia

Updated: Nov 13, 2020

When is it time to seek hospice care for a loved one that is suffering from dementia?

Dementia is a big umbrella category and covers many types of memory problems. Patients with Alzheimer's may live as long as 30 years from the time of diagnosis. Because of this, Medicare has strict guidelines for admitting patients with Alzheimer's and related dementias to hospice.

According to these guidelines from LCDs, a patient is eligible for hospice services if he/she meets these three criteria:

1) has a Palliative Performance Scale of less than 70%

2) is dependent on at least two daily activities of living

3) and meets the disease specific guidelines

Alzheimer’s and Related Disorders: Patients will be considered to be in the terminal stage of dementia (life expectancy of six months or less) if they meet the following criteria.

1. Patients with dementia should show all the following characteristics:

a. Stage seven or beyond according to the Functional Assessment Staging Scale; b. Unable to ambulate without assistance; c. Unable to dress without assistance; d. Unable to bathe without assistance; e. Urinary and fecal incontinence, intermittent or constant; f. No consistently meaningful verbal communication: stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words.

2. Patients should have had one of the following within the past 12 months:

a. Aspiration pneumonia; b. Pyelonephritis; c. Septicemia; d. Decubitus ulcers, multiple, stage 3-4; e. Fever, recurrent after antibiotics; f. Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous six months or serum albumin <2.5 gm/dl.

Note: This section is specific for Alzheimer’s disease and Related Disorders, and is not appropriate for other types of dementia.

In other words, only those with very advanced Alzheimer's and a life expectancy of less than 6 months or less are qualified for hospice under Medicare A.

What should families know about caring for a loved one with Dementia?

Dementia can be an emotionally draining disease to handle for caregivers. Sadly, a loved one's memory and personality slowly fades away and they become more and more dependent on others. Behavioral changes, such as wandering, may also arise and be difficult to manage. Caregiver stress is typically very high and extra support on multiple levels is often needed.

What are some issues that are unique to dementia that most people wouldn’t know?

To help avoid problems later on, advance directives and a durable power of attorney should be put in place as soon as possible in the course of the disease. Having the affected person's input is so important, but many families often put these tasks off.

Another unique issue is that the grieving process has almost always begun very early into the disease since caregivers are losing their loved ones slowly, bit by bit.

Are there signs to look for that indicate a new medical problem exists for dementia patients?

Probably the most common sign of a new medical problem is increased confusion or agitation. Other concerning signs are a sudden decrease in appetite or increased drowsiness. Since dementia patients cannot express themselves, these signs often warrant checking for an acute problem such as a urinary tract infection or pneumonia, constipation or pain.

How should hospice nurses train caregivers to care for their loved ones with dementia?

Mainly, caregivers often need a little coaching about safety or hygiene issues; and then need a lot of encouragement for all they are already doing.

What types of things do caregivers not realize are important when dealing with a loved one suffering from dementia?

Caregivers need to allow adequate rest and recreation for themselves or they risk burnout, causing them to inadequately care for their loved one.

Support groups and community resources are very important as well.

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