Hospice Care for Advanced Dementia: When Is It Time?

Author

Commonwealth Hospice

For more information about the author, click to view their website: Commonwealth Hospice

Posted on

Oct 04, 2022

Book/Edition

Pennsylvania - Greater Pittsburgh Area

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. 


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. 


What criteria are used to admit someone with dementia into hospice care under Medicare guidelines? 


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. 


How do you know when to seek hospice for a dementia patient? 

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. 


Are there providers that specialize in end-of-life dementia care? 

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: 


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? 


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). 


What are the benefits of comfort care over hospitalization at the end of life for common issues like urinary tract infections (UTIs) or pneumonia? 

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. 


Can a dementia patient stay on hospice for longer than 6 months? 

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. 


This article content has been submitted by Commonwealth Hospice.  Contact us to learn more at 412-489-5893. 

Other Articles You May Like

The Surprising Connection Between Health and Estate Planning

You already know that taking care of your health allows you to prolong your life and enhance your quality of life. But have you given serious thought to how your health directly impacts your future? Your legacy? The ones you love the most? What were talking about here is estate planning, and its every bit as important as your physical health. I know, I know, it could sound weird to equate health with estate planning but hear me out. By the end of the article, the connection will be clear.  The Link Between Your Health and Estate PlanningEstate planning often brings to mind wills, trusts, and other legal paperwork, and in fact, thats maybe what you initially thought when you read the title of this article. However, I want to challenge that assumption with this: the documents are merely the byproduct of estate planning. You may be thinking, how are documents the byproduct of estate planning? Heres what I mean.Estate planning is all about ensuring your wishes are honored if you become incapacitated so you can live and die with dignity. Its also about ensuring that the people you love most will know you loved them, that theyre cared for when youre gone in a way you cared for them while you lived, and that youve removed all the pain, potential conflict and expense they will have to endure if you have no plan in place. Estate planning supports your loved ones to grieve in peace rather than face a long, expensive court process or confusion regarding how to find your assets or understand what to do when you are gone. Estate planning is also about leaving a legacy. Contrary to what you may be thinking - that legacy is not only related to money and reserved for the wealthy and philanthropic - legacy is about the mark you make on those you hold most dear. Its about defining your humanity and what you stood for. Putting your affairs in order now so your loved ones dont have to deal with a mess later is a legacy, too. Making it clear that you loved your family is a legacy. What about health? How does your health connect with estate planning?Your health plays a significant role in shaping your preparations for the future in general, and how you structure your estate plan in particular. I want to first say that while health can refer to mental health, emotional health and spiritual health, and all are important, well focus on physical health here. So lets take a look at the direct link between your physical health and estate planning. Youll come to see that by prioritizing your physical health, you can not only enjoy life with more ease, but also avoid complications in your estate planning. Longevity and Retirement Savings. Your physical health has a direct impact on your lifespan, which in turn affects how long your retirement savings need to last. If you maintain good physical health, youre likely to live longer (yay!) and will need a more extensive plan regarding your assets, for your longer life.Healthcare Decisions. Consider the potential need for long-term care. Alzheimer's or dementia could require long-term care solutions that you may or may not choose. In your estate plan, its crucial to not only make sure youre financially covered for these possibilities, but to also ensure youve made it clear how you want to be cared for, if you cannot make decisions for yourself. There comes a point in time at which its too late for you to make your wishes known and given that you are reading this now is the time to document what you would choose, if you could not choose.This is why you need a healthcare power of attorney, or a living will in your plan. These are documents that designate the person (or people) you choose to make medical decisions on your behalf if youre unable to do so. Your designated healthcare agent (or agents) will not only ensure that your healthcare preferences are respected but will also align your medical treatment with your personal wishes. Without these documents in place, a judge (i.e., a complete stranger) could appoint someone to act on your behalf. Maybe even someone you dont trust or wouldnt want making decisions for you. Or, in a worst-case scenario, a judge could even appoint a professional conservator who could drain your estate financially.Disability and Its Impact. Poor health can sometimes lead to disability, affecting your ability to manage your own affairs. Including a disability clause in your estate plan ensures that your assets are managed according to your wishes, even if youre not able to oversee them personally. A revocable living trust can be particularly useful here, as it allows your chosen person or entity to manage your affairs without the need for court intervention. Again, without a plan in place, a judge will make decisions for you, and those decisions may not be what you want.Having gone through the potential consequences of not prioritizing your physical health and its direct link to your estate planning, lets turn to practical steps you can take now to make sure you and your family dont have to experience any negative consequences. Practical Steps to Integrate Health and Estate PlanningUnless youre already incapacitated and cant make decisions for yourself, know that its not too late to take action. Its not too early, either. Death and incapacity dont discriminate based on age. When you face that fact, and then plan accordingly, you can live life with more ease, more joy, and less stress. Truly.So, if you havent planned for the future, here are some practical steps you can take now:Schedule Regular Check-Ups. It may seem obvious, but regular medical examinations are vital. They not only help in detecting illnesses early but also provide a clear picture of your health, which, as weve discussed above, is crucial for accurate estate planning. If you discover a new health condition, you can plan accordingly when youve caught it in time. If not, it could be too late to get your plan in place.Update Your Estate Plan Regularly: As your health changes, so should your estate plan. Make it a habit to review and update your plan on a regular basis or whenever there is a significant change in your health. As an Estate Planning Attorney, I can not only help you get your initial plan in place, but with a unique process I use called Life & Legacy Planning, I will always include a free review of your plan at least every three years. This ensures your plan works because it will be updated as your health, life and assets change over time. Without updates, your plan will fail, sending your family to court and increasing the probability of conflict. Discuss Your Plans Openly: Talk with your family about your healthcare wishes and how they relate to your estate plan. Taking this courageous, and maybe uncomfortable, step, makes a big difference when it comes to decreasing the likelihood of conflict in your family. Make sure to discuss your preferences for end-of-life care, which can create conflict in your family if you havent clarified your wishes. Consult A Professional Who Has Your Best Interests in Mind: I approach estate planning from a place of heart, always keeping your best interests, and by extension, your loved ones best interests, in mind. I not only help you to get your plan in place, but also help you keep your family out of court and conflict, so your legacy is one of love and care. I can also help you navigate difficult discussions with your family about your wishes, so you can feel confident knowing youve done all you can to preserve the family bonds. How We Support You and Your Loved OnesAs an Estate Planning Law Firm, we recognize the integral connection between your physical health and your estate planning needs. Our commitment goes beyond mere legal documentation; we aim to ensure your life's work and values are preserved with dignity and clarity. By understanding the specific challenges and opportunities that arise from your health, we tailor estate plans that not only protect your assets but also your well-being and your family's future. Contact Entrusted Legacy Law at 412-347-1731 or click here to schedule a complimentary 15-Minute call.

What is Medicare?

What is Medicare?Medicare is a federal health insurance program that gives you access to specific coverage and benefits. Medicare is different from health insurance you may have had before. It offers you a variety of coverage options and it has key enrollment dates and guidelines you need to follow. Were here to help you make sense of it all. How is Medicare Different From Other Health Insurance?You may be surprised at the differences between Medicare and other types of health insurance. If youve had health coverage through your employer, your plan likely included medical and prescription drug coverage, along with other benefits. It also may have covered both you and your spouse.Medicare only covers one person at a time. This means you and your spouse must enroll separately. In addition, Medicare gives you options that can make it possible to receive your benefits in a variety of different ways.You can:       Choose hospital and medical coverage delivered through the federal government.       Add prescription drug coverage delivered through a private company.       Purchase a supplemental insurance policy from a private insurer that can help cover some of the costs.       Choose coverage from a private insurer that combines hospital, medical and often prescription drug coverage into one plan.In short, with Medicare you can choose coverage that fits your needs, budget and lifestyle. We can help you take full advantage of that freedom. Who is Eligible for Medicare?      - Age 65+      - Under age 65 with certain disabilities      - Have End-Stage Renal Disease (ESRD) When and How Do I Apply?If youre like most people, youll enroll in Medicare around the time you turn 65. Your Initial Enrollment Period begins three months before your 65th birthday, includes the month you turn 65 and ends three months after that birthday.Keep in mind that if you dont get Medicare during this Initial Enrollment Period, you may have to pay Medicare Part B or Part D late enrollment penalties. Plus, you could be missing out on coverage and benefits that can help protect your health and finances. Thats why its generally a good idea to enroll as soon you can. How you enroll generally depends on if youre getting benefits from Social Security, the Railroad Retirement Board or the Office of Personnel Management.Contact me today at 724-554-7989 for a FREE consultation.  

Mistakes to Avoid When Looking for an Assisted Living Community

Mistakes to Avoid When Looking for an Assisted Living CommunitySearching for the best assisted living residence is tough, especially when your parents and loved ones are making the change. Fortunately, there are ways to help them learn how to find and choose an assisted living facility. Most of these come down to the following three steps:Determining what they needFinding locations that match their needs and signing up for toursUtilizing multiple resources to find the right locationWell help you focus on finding the right residence to keep your loved one safe, happy, and secure as soon as possible with as little worry as possible. There are a few common mistakes people make when considering an assisted living community.1. Making the decision based on superficial reasonsAssisted living is about more than a pretty building. Often, adult children choose living establishments they think their parents would enjoy without adequately thinking about their health and wellness needs.If your mom or dad is unable make the decision, very carefully weigh all the options available before making it. Most of the time, transportation, safety, and comradery with similarly aged adults are exactly what your parent wants. 2. Being unrealistic about health and memory needsIf your mom or dad has dementia, think about what they need now, rather than what they used to enjoy. Memory issues cause adults to become reclusive, scared, and confused. Aging causes stressors and other worries. Choose a residence that can best protect them, rather than one that is overly fancy.Many residents come to us because they chose places that didnt offer the quality of care or level of services that they need. We always recommend adult children seriously consider their parents health needs and ask doctors about the support seniors need as they age.3. Going it alone in the searchIts usually prudent to get several opinions regarding the best assisted living options. Theres a good chance other family or friends have gone through the same process. You might also consult qualified senior living advisors. Legend Senior Living provides advisors to help navigate the process every time we show people our community. Our senior living advisors are generally very helpful when it comes to the process of choosing the right home, even if Legend may not be the right fit for your particular needs.4. Not knowing what to look forStart your search online, but make sure to talk to people. When doing your research online, make sure the residence offers the following resources:Nutritious prepared mealsCompanion services that provide company, personal assistance, and supportLife enrichment activities to indulge, learn, and growWellness and other activities to keep seniors engaged and activeBut go to the source, too. Make sure to make time to visit the residences youre considering. On your visits, we suggest you talk to the people to see exactly how it operates. Speak privately with staff and residents to get their opinions about the level of care and their overall satisfaction. Cheerful residents are always a good sign to look for in an assisted living home.5.  Choosing the first residence you findYoull find that every residence is unique. We recommend visiting at least three homes before you make a decision. This allows you to compare, do your due diligence, and get a clearer picture of standards and options available. Take note of residence standards, their cultures, and how they treat people. Most of all, consider your peace of mind and the safety of your loved ones.Legend Senior Living Is here to answer your questions and give you a tourGenerally speaking, most questions about assisted living focus on how many members are on staff, how the staff handles maintenance, and activity schedules. Security for aging adults with memory needs is something to consider as well.At Legend Senior Living, we understand whats important to you family, friends, good care, and compassion. We understand the need to live your life and your standards for independence, dignity, and the right to personal choice. 

Local Services By This Author

Commonwealth Hospice

Hospice 4955 Steubenville Pike Ste 125, Pittsburgh, Pennsylvania, 15205

At Commonwealth Hospice, your well-being is our number one priority. We recognize you have many choices available for a hospice provider, and our goal is to provide a team of healthcare professionals that will fill these days with care, compassion, and support. Our experienced team is committed to giving our clients the care they want, while offering guidance through some of life's most challenging circumstances. We strive to make a positive difference in the lives of our patients, families, and the communities we serve.  We invite you to find out more about our hospice program, our staff, and what makes Commonwealth Hospice a preferred provider.Experience matters. The leadership group at Commonwealth has decades of experience. We've seen what works and, more importantly, what could be done better. All of us have personally experienced hospice with a loved one, so we know what you're going through. Quality over quantity. Commonwealth is not a large, profit-driven healthcare network that treats people like numbers. We are smaller, local, and our only goal is to provide unparalleled care for our patients, their families and to support the facilities where many of our patients reside. Commitment to caregiver and family support. Being the primary caregiver to a family member on hospice is difficult. It is natural to experience self-doubt, anxiety and worry, in addition to the tremendous sadness associated with the impending loss of someone dear to you. At Commonwealth, we understand the challenges primary caregivers and other family members face, and have made it our mission to provide the best possible support and education. Our nurses and aides will take the time to sit with you, craft a comprehensive care plan, and make sure you have a full and complete understanding of what to expect. We'll discuss medications, any equipment that may be, or may become, necessary, as well as likely disease progressions so you are as prepared as possible for the road ahead. Should something come up between regular visits, staff are available 24 hours a day. Caregiver, facility and community education. Commonwealth has a dedicated Education Department to support primary caregivers and families, and to provide Pennsylvania Department of Human Services approved in-services for staff in facilities where our patients reside. Trainings cover a variety of topics, including infection control and proper transfer techniques, as well as First Aid/CPR, and medication administration. We also offer 'virtual dementia' training, designed to help us all better understand the struggles and challenges experienced by people suffering from dementia. Our goal is to support and educate our patients' caregivers in every way we can, whether that caregiver is an aide in a facility or a family member in the home.