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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:
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:
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.
Navigating Hospital Stays and Rehabilitation for Parkinsons Patients. This article is part of The Parkinsons Care Compass: A Caregiving Roadmap Guiding Families Through Every Stage, an educational series presented by At Your Home Caregiving of Texas. We are honored to walk beside families, offering specialized in-home care solutions to support every step of the Parkinsons journey. Hospital stays are a stressful experience for any family, but for individuals living with Parkinsons disease, hospitalization poses unique challenges that can significantly impact recovery and long-term health. When a Parkinsons patient requires surgery, treatment for complications, or recovery after a fall, family caregivers must act as advocates, organizers, and partners in care. Being prepared and informed is the key to ensuring a safe hospital stay and a smooth transition back home.At Your Home Caregiving of Texas understands these complexities and stands ready to help families through every step of the journey, providing expert support for rehabilitation and home-based recovery.Unique Hospitalization Challenges for Parkinsons PatientsParkinsons disease complicates hospital care in several critical ways: Medication Management: Parkinsons medications must be administered on a strict schedule to manage symptoms effectively. Delays or missed doses can lead to severe motor symptoms, confusion, and even hospitalization complications. Mobility and Fall Risks: Hospital environments are unfamiliar, and Parkinsons patients face an increased risk of falls due to balance issues and muscle rigidity. Cognitive Changes: Hospitalization can sometimes trigger or worsen confusion, memory problems, or delirium, especially in older adults with Parkinsons. Communication Difficulties: Some patients experience soft speech (hypophonia) or facial masking, making it difficult to express needs clearly to hospital staff unfamiliar with Parkinsons care. Being aware of these risks allows families to take a proactive role during the hospital stay, minimizing complications and ensuring the best possible outcome.Preparing for a Hospital Stay: Advocacy and PlanningIf hospitalization is scheduled (for surgery or planned treatments), preparation can make a significant difference:1. Create a Hospital Parkinsons PlanPrepare a simple one-page document outlining your loved ones: Current medications and exact times for administration Mobility limitations and fall risk status Communication needs Cognitive changes or dementia symptoms Preferences for therapy, rehabilitation, and home care after discharge Provide this information to the hospital staff immediately upon admission.2. Bring Medications to the HospitalBring a full list and ideally the actual medications in their original containers. In some hospitals, families can administer Parkinsons medications if theres a risk of delays.3. Assign an AdvocateDesignate a family member or professional caregiver to be present as much as possible, especially during medication times, shift changes, and physician rounds. Having a consistent advocate can prevent critical mistakes and advocate for the patients specialized needs.The Importance of Medication TimingOne of the biggest risks for Parkinsons patients in the hospital is missed or mistimed medications. Parkinsons medications like carbidopa-levodopa must be administered exactly as prescribed, sometimes multiple times a day, to prevent a sudden worsening of motor and non-motor symptoms.Tips for ensuring proper medication administration: Clearly document the medication schedule and insist it be incorporated into the hospitals care orders. Politely but firmly remind nursing staff of the critical importance of on-time dosing. Advocate for medication self-administration if allowed by hospital policy. Watch for any substitutions generic or alternate medications can sometimes affect symptom control. Families should feel empowered to respectfully advocate for their loved ones medical needs. Delay in Parkinsons medication can lead to avoidable setbacks in recovery.Understanding Rehabilitation OptionsAfter hospitalization, rehabilitation is essential for helping Parkinsons patients regain strength, balance, and function. Depending on the situation, rehabilitation may occur in: Inpatient Rehabilitation Facilities (IRFs): Specialized centers offering intensive physical, occupational, and speech therapy. Skilled Nursing Facilities (SNFs): Short-term stays focused on medical monitoring and therapy. Home-Based Rehabilitation: Therapy provided at home, which may be the best option for patients with significant mobility challenges or those at high risk of hospital-acquired infections. At Your Home Caregiving of Texas partners with rehabilitation therapists to support continuity of care at home, ensuring that exercises, safety measures, and care plans are followed consistently.Key Rehabilitation Goals for Parkinsons Patients Improving strength and flexibility Reducing fall risk through balance and gait training Enhancing fine motor skills (handwriting, eating, dressing) Improving swallowing and speech if affected Maintaining independence as much as possible Early rehabilitation after hospitalization is crucial for Parkinsons patients. Without it, the risk of decline, injury, and readmission significantly increases.Transitioning Safely Back HomeThe transition from hospital to home is a vulnerable time. Planning ahead is critical to prevent setbacks.Steps for a Successful Transition: Arrange Home Care Services Early: Schedule in-home caregiving services to assist with mobility, medication reminders, and personal care. Conduct a Home Safety Evaluation: Adapt the home environment to minimize fall risks remove tripping hazards, install grab bars, ensure proper lighting, and use assistive devices. Coordinate Medication Management: Update prescriptions, confirm medication supply, and create a clear medication schedule. Schedule Follow-Up Appointments: Ensure post-discharge physician and therapy visits are scheduled before leaving the hospital. Implement a Rehabilitation Plan: Continue physical therapy and exercise routines at home, guided by professional caregivers and therapists. At Your Home Caregiving of Texas specializes in providing comprehensive transitional care for Parkinsons patients. Our caregivers work alongside families and healthcare professionals to ensure that recovery continues safely and effectively at home.How At Your Home Caregiving of Texas Supports RecoveryFamilies managing Parkinsons care dont have to do it alone. Our services are designed to ease the burden of post-hospitalization recovery by providing: Personalized Care Plans: Tailored to the individuals stage of Parkinsons and rehabilitation needs. Medication Reminders and Assistance: Helping maintain the critical medication schedule. Mobility Support: Assisting with walking, transferring, and exercises to rebuild strength and prevent falls. Nutrition and Meal Support: Preparing nutritious meals that support energy and healing. Companionship and Emotional Support: Reducing anxiety, confusion, and isolation during the recovery process. Coordination with Healthcare Providers: Keeping families informed and ensuring therapy recommendations are carried out at home. We work hard to create an environment where patients can heal comfortably, maintain dignity, and reduce the risk of hospital readmission.Final ThoughtsHospital stays are never easy, especially when Parkinsons disease adds another layer of complexity. But with the right preparation, strong advocacy, and a smooth rehabilitation plan, families can help their loved ones achieve the best possible recovery.At Your Home Caregiving of Texas stands beside you every step of the way from hospital bedside to a safe and healing home environment. Our specialized Parkinsons care services ensure that patients get the compassionate, expert support they need to regain strength, confidence, and independence.When its time to transition home after hospitalization, trust At Your Home Caregiving of Texas to be your partner in care and recovery. At Your Home Caregiving of Texas is proud to support families living with Parkinsons disease through compassionate, expert care. For more resources and personalized caregiving solutions, explore the full Parkinsons Care Compass series or contact us today at 469-830-8414. Together, we can create a safer, stronger path to recovery one step at a time. If someone you care about is facing the challenges of Parkinson's, know that you're not alonewe're always here to help.
Navigating the complexities of aging can feel overwhelming. Whether you're a senior making plans for your future or a family caregiver trying to provide the best care for a loved one, knowing where to turn for reliable help is critical. Thats where a Senior Care Advocate steps inyour trusted partner in managing aging-related decisions, healthcare planning, and long-term support.What is a Senior Care Advocate?A Senior Care Advocate is a professional who specializes in supporting older adults and their families as they face the many challenges of aging. Their role is part guide, part liaison, and part problem-solver. Whether it's managing healthcare appointments, understanding confusing medical diagnoses, or finding the right long-term care options, a Senior Care Advocate is there to help every step of the way.These advocates bring years of experience in elder care, healthcare systems, and long-term care planning. They often have backgrounds in social work, nursing, gerontology, or senior services. But more importantly, they understand the emotional weight that comes with caregiving and agingand they offer compassion alongside their professional expertise.Do I Need a Senior Care Advocate?One of the most common questions families ask is: How do I know if I need a Senior Care Advocate? The answer depends on your unique situation, but here are a few telltale signs: Youre overwhelmed with coordinating medical care and doctor appointments. You're unsure about long-term care options like assisted living, memory care, or skilled nursing. Youre facing legal, financial, or insurance questions you dont know how to answer. Youre a long-distance caregiver who cant always be present. Youre worried about the safety or well-being of a loved one who lives alone. In all these situations, a Senior Care Advocate can provide guidance, coordinate services, and even represent you or your loved one at medical appointments or facility meetings.What Services Does a Senior Care Advocate Provide?Senior Care Advocates wear many hats and offer a wide range of services, including:1. In-Home Care CoordinationIf remaining at home is a priority, an advocate can help make it happen safely. They evaluate care needs, hire and supervise caregivers, and provide training for both families and professionals. They ensure that home care is not just availablebut effective, compassionate, and tailored to the individual.2. Medical Support and NavigationUnderstanding the healthcare system can be confusing, especially when dealing with chronic illness or multiple diagnoses. A Senior Care Advocate will: Arrange and attend medical appointments. Help interpret diagnoses and treatment plans. Coordinate testing, therapies, and even emergency room visits. Act as a liaison between seniors, family members, and healthcare providers. Their support can be life-changing, particularly for seniors managing complex conditions or families trying to stay informed.3. Long-Term Care Planning and TransitionsWhen living at home is no longer possible, finding the right long-term care community is essential. A Care Advocate knows the ins and outs of senior living optionsfrom assisted living to memory care and nursing homes. Theyll arrange facility tours, help with admissions paperwork, and even assist with the physical move.After the transition, they continue providing oversight to ensure your loved one is safe, comfortable, and receiving quality care.4. Benefit Application AssistanceUnderstanding what financial and medical benefits you qualify for can be overwhelming. Senior Care Advocates help determine eligibility and assist with applications for: Veterans benefits Social Security and SSDI Medicaid/Medical Assistance Private insurance coverage This process is often time-consuming and complex, but an experienced advocate can streamline it and ensure nothing is missed.What to Look for in a Senior Care AdvocateNot all advocates are the same. When choosing one, ask about their background, training, and areas of specialization. Dont hesitate to request references or testimonials from other families.A qualified Senior Care Advocate should have: Experience in elder care or healthcare systems Knowledge of local resources and support programs A compassionate and proactive communication style Clear professional boundaries and confidentiality standards Real Support for Real FamiliesAt Solutions for Independence, we understand how emotionally and physically demanding caregiving can be. For over 20 years, we've helped hundreds of seniors and their families navigate the aging journey with confidence. Whether its in-home care planning, crisis management, or senior housing transitions, we provide the kind of expert support that brings peace of mind.We believe in providing Care, Advocacy, and Compassion as a Professionbecause every older adult deserves to age with dignity, and every caregiver deserves support.Why Senior Care Advocacy Matters More Than EverTodays aging population is living longer but often with more complex health needs. Family caregivers are often juggling full-time jobs, raising children, and managing their own health. The role of a Senior Care Advocate is no longer a luxuryits becoming a necessity.By working with a trusted advocate, families can: Avoid caregiver burnout. Prevent medical or financial crises. Make informed choices about care options. Save time, money, and emotional energy. Whether youre planning ahead or in the middle of a crisis, a Senior Care Advocate can be your greatest ally. They provide the tools, knowledge, and hands-on support you need to make the best decisions for yourself or your loved one. If youre feeling uncertain or overwhelmed, remember this: You dont have to do it alone. Let an expert advocate help you find clarity, confidence, and comfort in every stage of the aging journey.At Solutions for Independence we have specialized in and provided Care Advocacy and long-term care planning services for over 20 years and have helped hundreds of seniors and families. Give us a call today at 412.999.7892.
GrandFriends Adult Day Program: Compassionate Care for Adults Living with DementiaThe GrandFriends Adult Day Program, located at the Via Health, Fitness, and Enrichment Center, has provided a safe and engaging environment for adults living with dementia for the past 30 years. Our mission is to offer older adults who need supervision and daily care with opportunities to stay mentally and physically healthy. Participation in the program can often delay or prevent the need for placement in a nursing home.Benefits of Adult Day ProgramsAdult day programs play a vital role in maintaining health and independence by providing: Enhanced Independence Encourages self-sufficiency in a supportive environment. Social Engagement Stimulates alertness and activity through meaningful interactions. Structured Activities Creates a sense of routine and anticipation. Physical Exercise Helps reduce anxiety, improve stamina, enhance balance, and promote better sleep. Support for CaregiversCaring for a loved one with dementia while managing work and family responsibilities can be overwhelming. GrandFriends offers caregivers much-needed respite, ensuring their loved ones receive professional and compassionate care in a secure setting.Program Expansion and Grant SupportIn August 2024, Via was one of 21 recipients selected to receive grant funding from the Alzheimers Association Center for Dementia Respite Innovation (CDRI). This funding has allowed us to: Expand Program Space Providing a more comfortable and accommodating environment. Hire Additional Staff Ensuring a 1:4 caregiver-to-client ratio for personalized care. Enhance Technology Introducing smart boards for interactive experiences like movies, museum tours, virtual bird watching, chair yoga, and games. Offer Individualized Programming Tablets with specialized games and activities tailored to each participants needs. Improve Transportation Services Clients within a 15-mile radius can access transportation for $3 per one-way trip. Program Details Hours: MondayFriday, 7:30 AM 5:30 PM (accommodating caregiver work schedules). Cost: $55 per day (one day per week) $50 per day (two or more days per week) To schedule a tour and assessment for your loved one, contact: Christy Harvison, GrandFriends Supervisor 251-470-5228 charvison@viamobile.org "This project is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $6,607,011 with 75 percent funded by ACL/HHS and $1,620,872 with 25 percent funded by non-government source(s). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government."
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.