You may have long debated when is the right time to look into hospice care for your senior parent or loved one with dementia. They’re remembering less and less now, and sometimes they’re in danger from situations like trying to leave the house or turn on the stove while you’re sleeping. This is one of the most difficult decisions you’ll ever need to make. When should you call hospice for dementia patients?
If a dementia patient has a short life expectancy of six months or less, it’s time to call hospice. These patients are considered Stage 7 on the FAST Scale and might not be able to eat, dress, or even sit up without help.
It’s never easy for family members to conclude that someone needs hospice care. In this guide, we want to make the decision an easier one for you by providing lots of useful information, so please keep reading.
Is Hospice Good For Dementia Patients?
Since dementia is progressive, the symptoms might start off manageable enough, but there will be a slow decline and worsening cognitive impairment over time.
That brings us to hospice. Hospice, if you need the definition, is end-of-life care for someone who has a terminal illness. Is this really the right option for a dementia patient or are they better off in a nursing home or an assisted living facility?
Hospice programs are absolutely an appropriate choice if your senior has advanced dementia. Through around-the-clock professional medical care by the hospice team, your parent or loved one will recover some quality of life in their last months.
The quality of life for family caregivers will improve as well. There is a lot of emotional stress that goes along with worrying about a loved one all the time.
As we mentioned in the intro, they could be partaking in dangerous activities such as trying to leave the house in the middle of the night or turning on the stove. What’s worse is they don’t even realize what they’re doing.
You’ll still be able to regularly visit your parent or loved one while they’re in hospice, but their care will no longer be a worry or burden for you to bear.
What Qualifies A Dementia Patient For Hospice?
Since hospice is most often used for end of life care, dementia patients who have a prognosis of six months (or less) are the best candidates.
Hospice Dementia FAST Scale
FAST is short for Functional Assessment Staging. Dr. Barry Reisberg created the Global Deterioration Scale (GDS) to determine how advanced a dementia patient’s disease is.
The scale excludes secondary conditions and co-morbid conditions that can often develop in Alzheimer’s patients. These could include conditions such as aspiration pneumonia, chronic obstructive pulmonary disease or COPD, coronary heart disease or CHD, congenital heart disease, and even cancer.
With 16 items on the scale in all, if a patient is in Stage 7 on the FAST Scale, then their care plan should include hospice care. Here are all seven stages of the scale.
Dementia patients in this first stage are seemingly fine. They go about their lives as normal and can care for themselves and others as they have been able to do for most of their lives. They don’t struggle in any part of their everyday lives either.
This is where the symptoms of dementia first manifest. A person in the early stages of the disease will struggle to do subjective work. They might not be able to remember where they left certain things or what they were doing. Their symptoms are not very serious now and might even be dismissed as forgetfulness if there hasn’t been a formal diagnosis of dementia yet..
By the third stage, the patient’s functioning continues to decline. If they still work at this stage, their work performance will have decreased. This will be noticeable to their colleagues and even their boss.
If the patient travels somewhere they haven’t been to before, they might experience confusion and other difficulties that make their travels less enjoyable.
Once the dementia patient is in Stage 4, their lives are becoming decidedly more difficult. Even at home, they’ll find it hard to do the everyday activities they once did such as balancing their checkbooks or cooking a full meal. Other complex tasks might elude them as well.
A patient in Stage 5 of the FAST Scale is now in the later stages of their dementia decline. They cannot pick out clothing appropriate for occasions anymore. You might have to assist them. They should still be able to dress themselves, but the other issues as evidenced in the prior stages have not disappeared either.
Reisberg breaks down Stage 6 into five substages:
- 6a: The dementia patient cannot dress themselves easily.
- 6b: They might be unable to bathe themselves or will avoid doing it due to newly developed anxiety.
- 6c: Going to the bathroom becomes hard. The patient either doesn’t wipe well or will leave the toilet unflushed.
- 6d: This is followed by urinary incontinence, which makes the above bathroom troubles even more pronounced.
- 6e: The last substage of Stage 6 is fecal incontinence.
As you’ll recall, by the time a person is in Stage 7, they are in the final stages of dementia and usually meet the criteria to be admitted for hospice care. Like Stage 6, Stage 7 has several substages:
- 7a: The patient’s speech abilities decrease to a huge degree. They might say a single word all day or five words in total.
- 7b: By Substage 7b, a dementia patient cannot speak intelligibly, which makes communicating with them next to impossible.
- 7c: Patients in this stage are non-ambulatory and cannot walk of their own volition.
- 7d: The patient cannot sit up on their own.
- 7e: The patient has reduced facial movement by this point and cannot physically smile.
- 7f: By substage 7f, the patient can’t keep their head up without support.
Does Medicare Cover Hospice For Dementia?
Although it is a gut-wrenching choice, you’ve decided to admit your senior parent or loved one to hospice for dementia care. One of your chief concerns now is how you’ll pay for it. Can Medicare cover the costs?
According to the Alzheimer’s Association, if both your senior’s physician and the medical director at the hospice center have confirmed that the patient meets the hospice eligibility criteria, then Medicare should cover the costs of hospice.
Should your senior parent or loved one already have Medicare Part A, then they’d be eligible for coverage as well.
Alzheimer’s Association elaborates on the medical and support services a dementia patient can receive while in hospice:
- Prescription medications
- Short-term respite care
- Short-term inpatient care
- Hospice or health aide
- Dietary counseling
- Medical social services
- Speech pathology
- Occupational therapy
- Physical therapy
- Medical supplies and equipment
- Nursing care
- Doctor care
Be aware that if your loved one with dementia needs symptom control or pain-relieving medications, you could be charged a copay for these medications. This would only be up to $5, says the Alzheimer’s Association. Hospice services wouldn’t cost you anything though.
There may be some caregiver support available to you as well. Respite care is a good example. Under respite care, hospice patients who are still in their own homes may be eligible for hospital stays from several days to a month or more.
This allows you to rest, knowing that your loved one is being well taken care of by the hospice care teams. Be sure to ask the social workers assigned to your loved one for more information about potential supportive care for you.
How Long Do Dementia Patients Live On Hospice?
Let’s say the dementia patient in your life was given a doctor’s prognosis of six months. Once they’re in hospice care, is there a possibility they could live longer?
Yes, but more than likely, it won’t happen. That’s only because, as we said before, dementia is progressive.
Although it’s possible that your loved one could have been in the middle stages of dementia for several years, once they reach the third stage of the disease, their body begins shutting down. There’s no coming back from that.
By the time the dementia patient has incontinence and they can’t stand, walk, or keep their head up without help, they’re already within their last two to three months of life.
If they can barely get food or drink down without choking and they’re speaking very infrequently, those are also signs that the disease has advanced quite rapidly.
In the last days and weeks of their lives, a dementia patient will usually experience these symptoms:
- Breathing changes, such as very fast breathing for a few seconds, then slower and shallower breaths, followed by faster ones
- Barely being able to stay awake and even being unconscious instead of asleep
- Cannot swallow
- Cold legs, arms, feet, and hands
It’s worth mentioning that not every dementia patient follows these stages to the letter.
Their symptoms might appear sooner or later than what is common, but many dementia patients generally experience the same symptoms at the end of their life. That’s how the FAST Scale was able to be developed.
Watching your senior parent or loved one go through the throes of dementia is one of the hardest things you’ll experience in your life. Even harder is deciding to send them to hospice care. If your dementia patient has fewer than six months to live and is in Stage 7 of the FAST Scale (end-stage dementia), the comfort care provided by hospice is the right choice for them.