Hospice Care for Dementia Patients- So Many Considerations


There are millions of Americans currently suffering from dementia related diseases, and hospice care can provide a considerable amount of assistance to this vulnerable population.

This particular type of patient tends to have a lot of needs, and requires constant supervision, to ensure that they stay safe. The responsibilities of caring and advocating, for patients with dementia, is often placed on their loved ones.  The National Hospice Palliative Care Organization created a pamphlet that presented some guidelines for hospice providers, specifically related to dementia.  I was a little surprised, there were some significant projections and statistics.  It is estimated that by the year 2030, Alzheimer’s Disease will affect approximately 7.7 million Americans, over the age of 65.  While currently the number of people diagnosed with this sad disease is closer to 5 million, and more than 100,000 patients are admitted to hospice for a dementia related diagnosis annually.

There are approximately 10 million people advocating and caring for someone diagnosed with dementia right now.

What is Dementia?

Dementia is a disorder of the brain that is the result of a disease. Initially dementia related diseases will produce symptoms of memory loss.  The disease process will then cause a slow deterioration of a person’s ability to reason, focus, and eventually speak.  As the illness progresses, dementia patients will continue to decline, by losing their ability to walk, sit up, and eventually swallow.

Alzheimer’s Disease is widely recognized, and accounts for 75% of hospice patients admitted with a diagnosis related to dementia.  Life expectancy is greater for patients with Alzheimer’s Disease, as opposed to the other types, like Vascular Dementia or Lewy Body.  The prognosis for this patient is dependent on when the disease was first detected, age, and other existing medical problems. It is estimated that someone diagnosed with a dementia related disease will live an average of 5-14 years, and the condition is irreversible.  Although, there are several prescription medications available that claim to slow down the progression of the illness.

Criteria for Hospice

Medicare has guidelines for hospice care providers, which help in determining when someone, with dementia, may be appropriate for palliative care.  These patients are typically unable to walk, and are wearing diapers, because of incontinence.  A very important consideration is the patient’s ability to communicate their needs. It is clearly outlined, in a Functional Assessment Scale, that a patient’s ability to speak must be “limited to a single intelligible word in an average day or during the course of an intensive interview”.  It is important to point out, many hospice patients that are suffering from dementia are able to talk.  It is common to observe some patients, stringing random words together that do not make sense, referred to as word salad.  The criteria set by Medicare is more focused on when someone is no longer able to effectively communicate.  Essentially, this when someone is no longer able to tell you if they are hungry or when they might be having pain.  These patients can no longer express their needs, and hospice may be able to help.

Eligibility for the hospice patient with a dementia related diagnosis does require the documentation of other details of a person’s history of care.  If your loved one has a diagnosis of dementia, and some of these things have happened recently, then hospice care may be appropriate.

  • Recent trips to the hospital
  • Sudden changes in functional abilities like: walking, eating, toileting
  • Recent documented weight loss
  • Patient falls with or without injuries
  • The treatment of any types of infections
  • Evidence of a pressure related wound

Considerations for Patients with Dementia

As someone nears the end stages of a brain disease, it can be compared to a very slow wind down.  Typically muscle weakness will become more evident, and these patients will begin to sleep more during the day, and the night.  Often times, there is a decrease in appetite, and difficulty with swallowing. These symptoms may contribute malnutrition and dehydration.

Problems with Swallowing

As a hospice nurse, it is very important to determine how well someone is able to swallow.  There are usually some red flags that tell us when someone may be struggling with this problem.  It is very common for someone’s nose to start running while eating,  or there could be some drooling observed with meals.  As weakness progresses, these patients will become fatigued while eating.  Caregivers will find food tucked up in the patient’s cheek, which is referred to as “pocketing”.  This does present a risk for choking, especially if someone were to fall asleep with food in their mouth.

Liquids can be particularly difficult to manage with difficulty with swallowing.  It is valuable to pay close attention, when drinking fluids forces your loved one to cough.  As the swallow gets weaker, there is a high risk that food or liquids will be inhaled, instead of swallowed.  Many caregivers become distressed when their loved one is no longer able to eat or drink.

Malnutrition and dehydration are a part of the natural process of dying, and caregivers may need some reassurance. There are some instances when a caregiver will opt to have a feeding tube placed, when someone can no longer swallow.  Liquid feedings are injected directly into the stomach to provide nourishment and nutrients.

The placement of a feeding tube, while on hospice care, is not in line with the philosophy of hospice and is considered to be an aggressive intervention. This form of life support has the potential to extend the life of a severely incapacitated person for a few more years.  These patients will spend their last years lying in a bed, extremely vulnerable, and requiring around the clock care.

 Prevention of Choking

If your loved one is having difficulty with swallowing, there are several ways to prevent potential complications like aspirate pneumonia.

  • Try not to force food or liquids.
  • Feeding someone when they are awake and alert is the safest.
  • Always feed someone in an upright position.  It can dangerous to give food or drinks to someone while lying down.
  • Modify the consistency of food to softer or pureed texture.
  • Adding a thickener powder to liquids, can it make it easier for patients to tolerate drinking fluids.
  • Crushing medications and mixing them with a spoonful of pudding or yogurt is preferable.  The hospice nurse will guide you on safely crushing medications, as there are some medications that should not be administered in that way.

Prevention of Bed Sores

When someone is no longer able to reposition them self in bed, a caregiver will want to consider prevention of pressure related injuries.  Areas of the most concern, in a patient with limited mobility, are the buttocks, tailbone, elbows, heels, and ears.  A warning sign of a pressure related problem, would be the presence of redness or bruising to an area of the skin.   This is often the result of a decrease in blood circulation to the area, and tissues are starting to breakdown.  If the pressure is not relieved, an ulcer will form.  This is the same concept of when you get a blister, from wearing a tight shoe.  Wounds are especially tricky at this stage of illness, because nutrition plays a huge role in healing.  The priority for this type of patient with a bed sore, now becomes managing the pain and preventing infection.  When wounds like these occur in a hospice patient,   it is likely that they will not heal.

The following are some suggestions that may help to prevent your loved one from getting any pressure related injuries.

  • For patients that are bedbound, frequent repositioning is recommended.  In the hospital setting, the expectation is to reposition the patient every 2 hours.  I always encourage families to do their best, and try to move the patient as frequently as possible.  It is best if patient’s weight is shifted slightly back for forth, left to right, with each repositioning.  This ensures that someone is not lying directly on their tailbone.
  • Extra pillows are very helpful in cushioning the elbows, and floating the heels off the bed.  Sometimes heel protectors can be useful, and are designed to prevent ulcers.
  • A gel cushion can be placed in a wheelchair, and that will help prevent any wounds that may be caused by periods of sitting.
  • The mattress on a hospital bed can be converted to a specialized mattress.  A low-air-loss mattress is specifically designed to alternate pressure points, while someone is lying in bed.  This can be very helpful in promoting comfort and preventing wounds.  The mattress is completely inflated with air, and will require access to an electrical outlet.

Treatment of Infections

Infections are treated in hospice conservatively with oral antibiotics.  There may be a time when an oral antibiotic is not as effective as they were previously.  Antibiotics given intravenously are considered to be aggressive medicine, and would not be encouraged.  In the instance of antibiotic resistance, these aggressive treatments could potentially only prolong someone’s suffering.

The following information discusses the more common types of infections that may need to be addressed, in a hospice patient with a dementia related diagnosis.

Urinary tract infections are very common, and can be caused by incontinence or a decreased fluid intake.  It is always recommended to let the hospice nurse know if you notice any changes in urination, particularly any foul odor in the urine.

Respiratory infections are common, and the earlier the hospice doctor intervenes, the better the outcome usually.  Notifying your hospice nurse if you observe a productive cough or changes in breathing is always encouraged.

Wounds that show signs and symptoms of infection are often treated topically initially with a wound care regimen. It is important to watch for signs of pain, redness, odor, fever, or drainage because an antibiotic may be helpful.

Fungal and yeast infections are common because of urinary incontinence and diapers.  Your hospice doctor can order a cream from the pharmacy.  This can be applied topically to reduce the symptoms of redness, pain, and itching.

Pain and Muscle Contractions

Patients with end stage dementia are not capable of verbalizing pain, and this symptom is sometimes overlooked and undertreated.  There are observable signs that may indicate discomfort.  If your loved one is moaning, is grimacing, has a furrowed brow, or their arms and legs are tense, pain might be the likely culprit.

Pain can also be associated with the stiffness that occurs in the extremities, as result of immobility.  When muscles are not being used, they begin to shorten in length.  A patient’s knees and elbows can remain in a flexed position, and could be difficult to extend the extremities.   Contractions in the hands occur when someone maintains the a closed hand position.  Overtime it becomes increasingly difficult to get the hand to open position.  Stretching exercises can be helping maintaining the range of motion in the extremities, and slow down the progression.  Medication prescribed by your hospice doctor may also be effective in relaxing the muscles some, and managing the pain.

Anxiety

Changes in a person’s behavior or demeanor can be a symptom of the disease related to dementia.  If your loved one is having episodes of crying, anger, or even physical aggression, your hospice team can help.

 The doctor may prescribe some medication to ease the symptoms, and the nurse will guide you how to use them.

Creating a low stimulus environment with softer lighting, and limiting noisy activities can be helpful.  Approaching someone from the front, and trying to engage in eye contact, can prevent startling.  Providing reassurance and human touch can also help with minimizing anxiety.

A stuffed animal or a soft item can provide a lot of comfort to someone suffering from dementia.  Touch is very important, and this tactile form of therapy can help in reducing anxiety.

Music Therapy  and Massage Therapy are a great addition to the hospice team, can be helpful in all patients that might be suffering from anxiety.

There are so many considerations for the caregiver of a hospice patient, with advanced dementia.  Hospice can provide you and your loved one with a tremendous amount of support.  If you feel that you hospice may be appropriate, I encourage you to discuss palliative care with your loved one’s physician.

I hope that you found this information helpful.  Feel free to leave a comment or ask a question.




8 Comments

  • GBIG May 29, 2017 at 3:15 am

    Thank you for having such a lovely website. I am glad that websites such as yours exist. It’s a place where loved ones can come and get quality, informed decisions regarding hospice and dementia care solutions and what it all means. Dementia and similar issues will become more and more prevalent as society ages and I am glad that I have now found a site to go to for help. Thank you for creating your website.

    Reply
    • Heather Williams RN CHPN May 29, 2017 at 2:01 pm

      Thank you. Yes , I believe dementia is going to become a real social issue in the future. We as a culture are going to have to figure out how to handle the health needs and provide the necessary care.
      Take Care,
      Heather

      Reply
  • MIck May 29, 2017 at 11:19 am

    Heather, you’ve done a fantastic job with this website! You tackle a very difficult topic – that being hospice care. My wife and I went through hospice care with her daughter back in November. We lost Clara to ALS. We could have used reading your website back then. It certainly would have helped. Your section on Morphine and other pain killers was very well done. It gives one a better understanding of what the doctors are prescribing in treating a loved one in their last days. You also provide some great insights into dementia and Alzheimer’s. You’ve done a great job with getting your reader to better understand these terrible illnesses and the treatments involved.

    Reply
    • Heather Williams RN CHPN May 29, 2017 at 2:07 pm

      My sincere condolences to you and your wife for your loss. I can’t even imagine how difficult that must have been, ALS is a dreadful disease. As a hospice nurse, those are the kinds of patients that will really break your heart, and are never forgotten. God Bless. I appreciate your comments and I hope that the information reaches people that are in need, and has a positive impact.
      Take Care,
      Heather

      Reply
  • Malenyalo May 29, 2017 at 12:08 pm

    I have someone in my family who suffers from Bipolar disorder and it’s not easy caring for someone like that. I see your site helps people understand there’s nothing wrong with asking for professional help because as I’ve seen from my family, people often feel guilty when they realise that they can’t cope, they feel they’ll be treated like they don’t care if they ask for outside help. Thanks for helping people see it’s okay to admit it when you can’t cope. It’s okay to ask for help.

    Reply
    • Heather Williams RN CHPN May 29, 2017 at 2:11 pm

      Caregiver burnout is very common, and can take a physical and emotional toll. We has healthcare providers have an obligation to care for family as a whole. This is especially important in hospice because a fractured caregiver can really create an unstable situation very quickly. Thank you for reaching out.
      Many Blessings,
      Heather

      Reply
  • WMP May 29, 2017 at 2:53 pm

    This is a very informative article on hospice care and the important role it plays in the lives of people with dementia. The statistic about Alzheimer’s disease were very eye opening, and it looks like there is a lot of need of support of those caregivers. Thanks for raising awareness about this subject, so how long have you been working in this field?

    Reply
    • Heather Williams RN CHPN May 29, 2017 at 3:01 pm

      Thank you for taking the time, and I agree that the statistics are pretty impressive. I have been practicing as a Registered Nurse for 16 years ago, and have my Bachelors in Nursing from ASU.
      Take Care,
      Heather

      Reply

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