Hospice Care for Advanced Dementia: When Is It Time?
Commonwealth Hospice
For more information about the author, click to view their website: Commonwealth Hospice
Oct 04, 2022
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
Navigating Parkinsons and Alzheimers Support in Dallas, Texas
As the population of Dallas continues to grow and age, the need for reliable, compassionate support services for individuals living with Parkinsons disease and Alzheimers disease is more critical than ever. These progressive neurological conditions can dramatically affect a person's memory, mobility, and independence creating a ripple effect that impacts entire families. Finding the right Parkinsons / Alzheimers support in Dallas can make a meaningful difference in quality of life for both individuals and their caregivers.In this blog, well explore what support services are available in Dallas, how to choose the right care, and where to find trusted local resources all optimized to help families navigate this journey with confidence. Understanding Parkinsons and Alzheimers Support NeedsBoth Parkinsons disease and Alzheimers disease are progressive, meaning symptoms worsen over time. While the diseases differ in cause and impact, the support needs often overlap.Parkinsons disease is a movement disorder that may also affect mood, memory, and cognition over time.Alzheimers disease is a type of dementia that primarily affects memory, thinking, and behavior.Support services are designed to address both physical and cognitive challenges, offering therapeutic care, emotional support, and educational resources. Local Parkinsons / Alzheimers Support Options in DallasDallas offers a wide range of resources to support individuals at every stage of Parkinsons and Alzheimers. Here are some of the most common types of local support:1. Specialized Support GroupsParticipating in a local support group can be incredibly valuable. These groups allow individuals and caregivers to connect with others who understand what theyre going through. In Dallas, many organizations host regular meetings, both in person and virtually, specifically tailored to Parkinsons or Alzheimers communities.2. In-Home Care ServicesMany families in Dallas turn to non-medical in-home care to assist with daily living activities. This might include help with bathing, dressing, medication reminders, meal prep, and companionship all crucial for individuals living with Parkinsons or Alzheimers.Explore in-home support resources in your area: Senior Resources in Dallas, TX3. Cognitive and Physical TherapyOccupational and physical therapists can help manage the motor symptoms of Parkinsons and cognitive decline in Alzheimers. Dallas is home to many outpatient centers and therapy practices that specialize in neurodegenerative conditions.4. Respite and Adult Day ProgramsCaregivers need care too. Adult day centers and respite services in Dallas allow caregivers to take a break while ensuring their loved one receives safe, professional support and stimulation.5. Education and CounselingUnderstanding the progression of these diseases and learning how to plan for the future is essential. Local nonprofits and advocacy organizations in Dallas frequently offer workshops, webinars, and counseling sessions to help families make informed decisions. Choosing the Right Parkinsons / Alzheimers Support in DallasWhen evaluating support options, consider the following:Stage of the disease Early-stage care will look different than care for individuals in later stages.Specialization Seek out programs that have experience specifically with Parkinsons or Alzheimers, as each condition requires unique care approaches.Flexibility and availability Ensure the services match your schedule and adapt as the disease progresses.Family involvement Some programs in Dallas offer caregiver training or include family members in care plans.For a curated list of Alzheimer's and Parkinsons resources in Dallas, explore: Dallas Parkinsons / Alzheimers Support Services The Importance of Early SupportThe earlier families seek support, the more tools and resources theyll have to manage challenges as they arise. Whether its assistance with memory care planning, mobility training, or navigating health systems, Dallas has a rich network of services that can help families feel more in control and less alone. Final Thoughts Parkinsons and Alzheimers disease may present daunting challenges, but families in Dallas, Texas have access to comprehensive, community-based support services that provide comfort, education, and hope. By knowing where to turn and what resources are available, families can better navigate the evolving needs of their loved ones with confidence and care.
Understanding Hospice Care in Dallas, Texas
Hospice care provides comfort and support to individuals with terminal illnesses, focusing on quality of life rather than curative treatments. For families in Dallas, Texas, choosing the right hospice care is essential in ensuring that their loved ones receive compassionate, dignified, and appropriate care in the final stages of life. This blog will guide you through the importance of hospice care, the services available in Dallas, and how to make an informed decision during a challenging time.What is Hospice Care?Hospice care is a specialized type of care designed for individuals who are no longer seeking curative treatments for their illness. Instead, hospice focuses on making the patient's final days as comfortable as possible, managing symptoms, and providing emotional, spiritual, and practical support for both the patient and their family members.The Role of Hospice Care ProvidersHospice care providers are trained professionals who specialize in providing end-of-life care. They work closely with the patient's family, doctors, and other healthcare professionals to develop a care plan that meets the patient's needs and wishes. In Dallas, hospice providers typically include:Physicians and nurse practitioners to manage medical care and symptomsNurses who visit regularly to monitor the patients condition and provide medical interventions as necessarySocial workers who provide emotional support and assist with planning for the futureChaplains or spiritual counselors who offer spiritual guidance and supportHome health aides who assist with daily personal care tasks such as bathing and groomingVolunteers who provide companionship, respite care for family members, and practical help with errandsBenefits of Choosing Hospice Care in DallasDallas offers a variety of hospice care options, allowing families to choose the best care for their loved ones. Key benefits of hospice care in Dallas include:Compassionate, patient-centered care focused on comfort and dignityAccess to highly trained professionals experienced in end-of-life careFlexible care settings, including in-home hospice, hospital-based hospice, or hospice facilitiesEmotional and spiritual support for both the patient and their family members24/7 availability of support, ensuring patients and families are never without help during a difficult timeHow to Choose the Right Hospice Provider in DallasChoosing the right hospice provider is an important decision, and several factors should be considered, such as the providers reputation, services offered, and the level of support they provide. Here are a few tips to help guide your decision-making process:Research the providers accreditation and licensing status.Read reviews and ask for recommendations from healthcare professionals or others who have used hospice services.Evaluate the range of services provided, including pain and symptom management, spiritual support, and respite care.Consider how much flexibility the provider offers in terms of care options, such as home hospice or facility-based hospice.Ensure the provider offers sufficient emotional and psychological support for both the patient and family members.Resources for Finding Hospice Care in DallasDallas has many resources available for families looking for hospice care. Seniors Blue Book provides a comprehensive directory of home health services, including hospice care providers in the Dallas area. This trusted resource helps you navigate the available options, making it easier to find the best care for your loved one.To explore senior home health care options in Dallas, visit: Senior Home Health in Dallas, TXFor a list of hospice care providers in Dallas, browse this directory: Hospice Care in Dallas, TXConclusion Making the decision to utilize hospice care can be difficult, but it ensures that your loved one receives the comfort and dignity they deserve during their final stages of life. Dallas offers a wide range of hospice care providers with different services to meet your needs. By researching your options and seeking professional guidance, you can make an informed decision that brings peace and comfort during a challenging time.
Understanding Hospice in Denver: A Compassionate Guide for Families and Seniors
Facing the realities of a terminal illness is one of the most emotionally challenging experiences for any family. In these moments, finding compassionate, professional support is essential. Hospice care in Denver offers a vital service that focuses on comfort, dignity, and quality of life for individuals with life-limiting conditions.This guide is designed to help families in the Denver area better understand what hospice is, how it works, and how to access local, high-quality services. Whether you're just beginning to explore options or planning ahead, this resource will help you make informed, compassionate decisions. What Is Hospice?Hospice care is specialized care designed for individuals who are facing the final stages of a serious illness. The goal is not to cure, but to provide comfort, pain management, and emotional and spiritual support to both the patient and their family. Hospice can be provided in various settingsincluding the home, an assisted living facility, or a dedicated hospice center.Key services often include:Symptom and pain managementEmotional and psychological supportSpiritual counselingSupport for family caregiversCoordination of medical supplies and medications Who Is Eligible for Hospice?Hospice is available to patients who have been diagnosed with a terminal illness and have a life expectancy of six months or less, as certified by a physician. Most patients have conditions such as cancer, heart failure, advanced Alzheimers disease, or chronic respiratory illness.Eligibility is not limited by age, and services are typically covered by Medicare, Medicaid, or private insurance plans. Why Hospice MattersHospice is not just about end-of-life careits about living with dignity, being surrounded by support, and ensuring each moment counts. For families, hospice also provides much-needed relief and guidance during an incredibly difficult time.Benefits include:Enhanced comfort for the patient through expert symptom controlReduced hospital visits and medical interventionsEmotional closure and improved family copingAccess to grief support and bereavement services Hospice in Denver: Local ConsiderationsDenver is home to a broad network of hospice providers, each offering a range of services suited to different needs. The citys vibrant healthcare community ensures residents have access to experienced professionals and resources focused on compassionate, end-of-life care.To explore hospice services available in Denver, you can visit the following trusted directories: Denver Home Health Directory Denver Hospice Care Providers What to Look for in a Denver Hospice ProviderChoosing a hospice provider is a personal decision that should reflect your familys values and preferences. While all hospice programs must meet certain federal standards, individual providers may differ in their philosophy, staffing, and additional services.Here are key questions to ask:What types of professionals are on the care team (nurses, social workers, chaplains)?Is support available 24/7?Are bereavement services offered to family members?How is pain and symptom management handled?Can care be provided at home or in a preferred setting?Denvers diverse provider landscape means you can find a hospice service that aligns with your loved ones specific needs and wishes. Hospice vs. Palliative Care: Whats the Difference?While both hospice and palliative care focus on comfort, there are key differences. Palliative care can be provided at any stage of a serious illness and may be given alongside curative treatments. Hospice, on the other hand, begins when curative treatments have stopped and the focus shifts fully to comfort and quality of life.If you're uncertain which type of care is most appropriate, speaking with a healthcare provider or social worker can help guide your decision. Final Thoughts Hospice care in Denver is more than a serviceits a compassionate philosophy of care that respects the individuals journey, values dignity, and provides vital support during lifes final chapter. Choosing hospice is never easy, but it can be a powerful step toward peace and comfort for both the patient and their loved ones.
Local Services By This Author
Commonwealth Hospice
Hospice 4955 Steubenville Pike Ste 125, Pittsburgh, Pennsylvania, 15205At 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.