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Senior woman drinking water with shaking hands

Parkinson’s Awareness

By: Dr. Laura Mantine

Parkinson’s disease (PD) is caused by the loss of dopamine-producing nerve cells within the brain. The loss of dopamine causes symptoms like stiffness, slow movements, balance problems, and depression. There are certain specific motor symptoms that accompany Parkinson’s disease. A resting tremor happens when a body part, usually a hand or foot, shakes slightly when a person is not using it. Bradykinesia is whenmovements are extremely slow, and patients may have freezing episodes which are temporary, involuntary periods where a person is unable to move. A PD patient may also experience changes in speech, smaller handwriting due to difficulties performing repetitive motions, and a “masked” face due to a loss of facial expression. Patients are also at an increased risk of falls from a combination of poor balance and severe stiffness. A PD patient may develop difficulty swallowing which can lead to weight loss, malnutrition, dehydration, and pneumonia.

There are also non-motor symptoms that are present in Parkinson’s disease. Parkinson’s dementia is a significant, permanent decline in attention, memory, and problem-solving that impairs daily life. A patient may develop hallucinations or delusions throughout their disease course which can lead to increased caregiver stress. Patients may also suffer from severe constipation, urinary problems, and sleep disorders that affect their quality of life.

A Progressive Disease

As a progressive disease, Parkinson’s disease symptoms will slowly worsen over time. While PD affects people in unique ways, there are typical patterns of progression, defined by five stages. In stage 1 and stage 2 of Parkinson’s, patients may experience mild shaking and stiffness. As the disease advances into stages 3 and 4, loss of balance and slowness of movement begin to impair daily functioning. Stage 5 is the final, most debilitating stage of PD. In this stage, patients are wheelchair- or bedbound and require 24-hour nursing care. Patients are said to have end-stage Parkinson’s disease at stages 4 and 5 of the disease. In end-stage Parkinson’s disease, symptoms are so severe that medication stops working well, and patients require full-time caregiver assistance. Eventually, end-stage PD patients become candidates for hospice care, a service that focuses on easing symptoms and improving comfort at the end of life.

Hospice Eligibility

There are no formal PD eligibility guidelines for determining when a hospice referral should be made, and there is no definite timeline when it comes to the final stages of Parkinson’s disease. However, hospice care is available to patients who are expected to live six months or less. Doctors and hospice agencies will consider factors relevant to PD like a patient’s history of falls, hospitalizations, withdrawal from activities, inability to perform self-care, and lack of benefit from medication. There are very general hospice guidelines intended to cover a broad-spectrum of neurological disorders. The guidelines for neurological illnesses state that patients must meet one of the following to be eligible for hospice: critically impaired breathing or rapid disease progression in the past year.

Critically impaired breathing is unlikely to be applicable in Parkinson’s disease. Primary respiratory problems are not typical in advanced PD. The second criterion, evidence of rapid disease progression in the prior year, tends to be more useful for patients with end-stage PD. A rapid disease progression means that patients are bedridden, have unintelligible speech, require a modified diet, and need major assistance with activities of daily living. Nutritional impairmentis common in end-stage PD. Patients are unable to maintain sufficient oral intake and experience weight loss and dehydration. Life-threatening complicationsthat may occur in end-stage PD include recurrent aspiration pneumonia and pressure ulcers of the skin.

Hospice for Parkinson’s Patients

Hospice care is an extra layer of support to help care for loved ones with end-stage Parkinson’s disease. The goal of hospice care is to optimize comfort and ease physical, emotional, and mental suffering during the dying process. Members of a hospice care team include a doctor, nurse, social worker, and home health aide. Most patients with PD die from the same diseases such as heart disease, stroke, and cancer, that others do. As such, hospice care may be considered even before a patient with PD reaches the end stages of their disease. Deciding when it is time to enter hospice care can be a difficult decision for a person and their loved ones. However, being admitted to hospice can ensure a person and their caregivers have access to a variety of services that are needed.

References:

“Eligibility for End-Stage Parkinson’s Disease Hospice Care.” By Colleen Doherty, MD. Published on October 24, 2021. Medically reviewed by Isaac O. Opole, MD, PhD. https://www.verywellhealth.com.

“The Role of Hospice in Parkinson’s.” Parkinson’s Foundation. 2018. https://www.parkinson.org.

April Is Bereaved Spouses Awareness Month

By Jacquelyn Buffo, MS, LPC, CAADC

Losing a loved one to a terminal illness is one of the most painful experiences you can go through. The loss of a spouse or partner is traumatic for many people, and the grief journey can feel overwhelming, confusing, and painful. However, each person grieves and works through the grieving process at their own pace and in their own way. If you are grieving the loss of a partner or spouse, you are not alone. The month of April is Bereaved Spouses Awareness Month, observed since 2008. Bereaved Spouses Awareness Month provides support and resources for bereaved spouses.

The difficulty of losing a spouse is followed by a grieving process that can be challenging for many people. Grief is a process and includes many different types of symptoms, some more severe than others. Feelings such as shock, sadness, numbness, and even guilt can occur after losing a spouse. Your experiences of grief may be different than others, and it is dependent upon factors specific to you. Grief can present as intense emotions and can also present in behaviors.

For example, bereaved spouses may experience:

How Hospice Care Can Help 

There is no right or wrong way to grieve, and support and help are available to you. An available resource along your journey of bereavement is hospice care. Hospice can help spouses prepare for the impending loss of a loved one. The hospice’s bereavement team can also help spouses after a patient passes. The mission of hospice care is to deliver compassionate, quality care to individuals with terminal illnesses and support the families through the caregiving phase and bereavement process.

Many spouses spend a significant amount of time and energy caring for and tending to their ill partners. But unfortunately, they may overlook their own needs and feelings during this time. Utilizing the hospice team as a source of support can help spouses tend to their emotions and needs when it is difficult.

If you are struggling with the loss of a loved one, it is vital to get the help and support you need. First, talk to a trusted family member or friend about what you’re going through. Loved ones can be strong sources of validation, support, and compassion. You can also talk to your doctor if you notice a change in behavior and mood or if you are having difficulty performing the normal activities of daily living, such as showering regularly and eating. Your doctor may be able to provide you with medication and can also provide you with referrals to a grief counselor or support group near you.

Sources:

  1. Mourning the Death of a Spouse | National Institute on Aging (nih.gov)
  2. Missed Opportunity: Hospice Care and the Family – PMC (nih.gov)
Quote about love with flowers and company logo

February is Full of Heart

By: Dr. Laura Mantine

Love is all around this month, especially on Valentine’s Day, when we take time to turn to those closest to us and say those three magical words. However, if you have a loved one who suffers from advanced cardiac disease, one of the best ways to show how much you care may not come in a sentimental card or a box filled with chocolates. Instead, it may come from calling hospice. Oftentimes, people don’t realize that hospice care is an option for people who suffer from advanced cardiac disease. Instead, these patients often spend their final days and months in and out of the hospital, receiving treatments that do little to improve the course of the disease. Hospice offers a supportive program of holistic care designed to help patients manage symptoms, forego emergency room visits and receive convenient, compassionate care right in their places of residence.

Heart Disease

The estimated annual cost of heart disease is about $200 billion each year. Heart disease is the leading cause of death in the United States across all demographics. Heart disease accounts for 17.8% of hospice deaths, second only to cancer (30.1%). During hospice care, cardiac patients are monitored by a team of physicians and nurses, who administer medications and treatments to keep them as comfortable as possible. Social workers can access valuable community resources. Chaplains and counselors provide emotional and spiritual care for the patient and family. Volunteers can sit with patients, read to them or help them with light household chores, and allow caregivers to get some much-needed respite.

Hospice Eligibility for Heart Disease Patients

End-stage heart failure is often marked by an abrupt, dramatic decline, followed by recurring recovery and stability until sudden death. Patients are ideal candidates for goals-of-care conversations when they have severe refractory heart failure or extensive symptoms of cardiac insufficiency, have tried or cannot tolerate maximum medical management and are not candidates for curative therapies or surgical interventions. Hospice care addresses a wide range of symptoms, including shortness of breath, chest pain, weakness and functional decline. Eligibility for hospice may require documentation of progressive loss of functional capacity over years, progressive failure to respond to therapies and a desire to discontinue curative treatment. Patients should check with their physician to see whether they are eligible for hospice based on their history of congestive heart failure, arrhythmias or heart attacks. The physician may also consider any coexisting diseases like HIV, diabetes, respiratory illness or kidney disease when transitioning a patient to hospice care.

How Hospice Can Help Heart Disease Patients

In addition to increasing a cardiac patient’s quality of life, hospice often increases the cardiac patient’s quantity of life as well. In a study reported in the March 2007 Journal of Pain and Symptom Management, congestive heart failure patients who chose hospice survived 81 days longer than those who did not. Even when modern-day technology or surgery can no longer offer hope, patients with late-stage cardiac disease need to know that help is always available. Hospice allows these patients to experience as much joy as possible in their remaining days while minimizing their discomfort and pain.

References:

Centers for Disease Control and Prevention, National Center for Health Statistics. (2016). Multiple Cause of Death 1999-2015 on CDC WONDER Online Database. Data are from the Multiple Cause of Death Files, 1999-2015, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. 

Benjamin EJ, Blaha MJ, Chiuve SE, Cushman M, Das SR, Deo R, et al. Heart Disease and Stroke Statistics—2017 Update: A Report From the American Heart Association. Circulation. 2017;135:e1–e458. DOI: 10.1161/CIR.0000000000000485.

National Hospice and Palliative Care Organization. (2018). NHPCO Facts and Figures 2018 edition. 

Ziaeian, B., & Fonarow, G. C. (2016). The Prevention of Hospital Readmissions in Heart Failure. Progress in cardiovascular diseases, 58(4), 379–385. doi:10.1016/j.pcad.2015.09.004

Close up of woman’s hands folded on her lap with a doctor holding a clipboard with medical chart

Cervical Cancer Awareness Month

By: Dr. Laura Mantine

The cervix is the organ that provides an opening between the vagina and the uterus. Normally, old or damaged cells in a woman’s cervix will stop dividing and are replaced by healthy, young cells. Cervical dysplasia occurs when these old or damaged cells continue to divide in the superficial layer of the cervix. When cervical dysplasia is not treated, it can grow and spread into the deeper tissues of the cervix, developing into cervical cancer. Cervical cancer is a common malignant tumor of the female reproductive system. In the world, cervical cancer is the third most common type of cancer. However, the use of Pap smear screening has made it far less common in the United States.

Detection

Regular Pap smear screening tests can detect cervical dysplasia long before it develops into cancer. Cervical dysplasia is 100% treatable when identified early. Once cervical cancer has developed, the prognosis varies depending on the cancer’s stage of advancement as well as a woman’s age, general health status and comorbid conditions. It generally does not produce any symptoms in its earliest stages. When symptoms do occur, they may indicate that the cancer has progressed to more advanced stages. Symptoms may include abnormal vaginal bleeding or discharge, low back or pelvic pain, pain during intercourse and periods that are longer and heavier than usual.

Treatment

Treatment of cervical cancer begins with seeking regular medical care throughout a woman’s life. Regular medical care allows a health care professional to best evaluate risks of developing cervical cancer, perform Pap smear screening, and promptly order further diagnostic testing as needed. The goal of cervical cancer treatment is to permanently cure the cancer resulting in complete remission of the disease. Cervical cancer treatment plans are multifaceted and individualized to the type and stage of the cancer with consideration of a patient’s coexisting diseases or conditions. Treatment of cervical cancer or cervical dysplasia may include a combination of surgery, chemotherapy or radiation.

Potential Complications

Cervical cancer can lead to life-threatening complications especially if they go undetected and untreated. Complications are caused by an abnormal rapid growth of old or damaged cells in the cervix that can spread to other organs, such as the lungs, bladder, liver and intestines. Over time, the spread of cancer interferes with organ function and vital body processes. Serious complications can include recurring cervical cancer after treatment and infertility due to treatment.

Hospice Care

In cases in which cervical cancer has progressed to an advanced stage and has become unresponsive to treatment, the goal shifts away from curing the disease and focuses on symptom management. Hospice care is available to help people in their last phases of an incurable illness live as fully and comfortably as possible. Hospice care for a patient with advanced cancer focuses on quality of life and is designed to address a wide range of symptoms including pain, poor appetite, shortness of breath, nausea and vomiting. Hospice patients with advanced cancer experience fewer hospitalizations, emergency calls and invasive procedures. Hospice patients have lower costs of care and greater likelihood of dying in their preferred setting, compared to patients not referred to hospice. Hospice will provide medications and supplies and provide inpatient care when a patient’s symptoms cannot be managed at home. Hospice can also provide around-the-clock care in the home to manage acute symptoms if needed. Also, a hospice clinician is accessible any time of day or night to ensure symptoms are managed as soon as possible. Lastly, hospice care also provides emotional support that benefits advanced cancer patients and their families. Timely and appropriate identification of hospice eligible patients increases the likelihood that patients and their families will benefit from compassionate, end-of-life care.

References:

National Hospice and Palliative Care Organization, NHPCO Facts and Figures, 2018 Edition. Retrieved from:

American Cancer Society, Cancer Facts & Figures 2019 Retrieved from: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html

What are Palliative Care and Hospice Care? 2019. National Institute on Aging. Retrieved from: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

Teno, et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA, 7;291(1):88-93

Close up of human body diagram, highlighting the pancreas

Pancreatic Cancer Awareness for Hospice  

By: Dr. Margarita David Ph.D., RN

Pancreatic cancer affects over 60,000 people in the United States. Continue reading to learn more about pancreatic cancer in honor of Pancreatic Cancer Awareness Month.

What is pancreatic cancer?

Pancreatic cancer is a cancer that develops in the pancreas. The pancreas helps regulate the metabolism of sugar and aids in the digestion of foods.

What causes pancreatic cancer?

Although the exact cause of pancreatic cancer is still unknown, some risk factors that may contribute to the development of pancreatic cancer include:

Physical symptoms of pancreatic cancer

Many of the symptoms of pancreatic cancer are also common with other types of cancers. These may include:

How is pancreatic cancer diagnosed?

There are several ways that pancreatic cancer is diagnosed:

Blood tests

Three blood tests can help diagnose and treat pancreatic cancer:

  1. Liver function test. Measures the amount of bilirubin in the blood. If high this may indicate a tumor is blocking the bile duct.
  2. Carcinoembryonic antigen. Elevated levels in the blood are found in patients with cancers of the GI (gastrointestinal) tract.
  3. CA 19-9. Individuals with pancreatic cancer often have an elevation of this protein in their blood.

Biopsy

If blood work and imaging indicate the possibility of having pancreatic cancer, a biopsy (a tissue sample from the pancreas) is taken to confirm the diagnosis. A biopsy is the gold standard for a definitive pancreatic cancer diagnosis.

How does hospice help pancreatic cancer patients

Pancreatic cancer can be extremely painful, making your quality of life more difficult toward the end of life. Hospice care allows people to live their final stages in peace by providing:

Comfort for end of life

The end of life can be a very stressful, uncomfortable, and anxiety-provoking time. A hospice team can help provide the comfort the patient needs physically, emotionally, and spiritually.

Spiritual guidance

Hospice care takes care of you physically and emotionally during the end of life. The team consists of a social worker and chaplain who will work with you and your family to ensure your spiritual needs are met. Hospice provides compassionate care that is supportive of both the patient and their families through the end of life and throughout the grieving process.

Helps with family and loved ones

Caring for sick loved ones can be an exhausting endeavor, which is why hospice care takes over your care so that your family gets a much-needed break. Your hospice team can also coordinate respite periods for your caregiver.

If you’d like to learn more about hospice care for pancreatic patients, please contact us.

Elderly man giving himself a breathing treatment using a mask

COPD Awareness Month: Hospice Referral Guidelines

By: Laura Mantine, MD

Chronic lung disease is the 4th most common cause of death among older adults in the United States. More than 3 million people worldwide died of COPD in 2015, representing 6% of all deaths that year. People dying from COPD frequently experience difficult and uncomfortable symptoms that lead to distress and panic. They commonly have disabling respiratory symptoms including severe breathlessness, limited tolerance for activity, and intractable coughing. They are also usually oxygen dependent, often experience anorexia with weight loss, cachexia, and ultimately become dependent on others for their activities of daily living.    

COPD and Hospice Care

Despite the symptomatic needs of individuals dying from end-stage COPD, only 30% of individuals receive hospice care before death. It is not clear why the rate of hospice use for patients with COPD is so low, but several explanations have been offered. The most important may be that few patients with severe COPD have discussed end-of-life planning with their clinician. Furthermore, many patients and clinicians do not view COPD as a terminal illness and feel it is more chronic in nature. Also, there may be a lack of awareness that patients enrolled in hospice can continue to receive treatments for COPD. Due to the fluctuating course of COPD, it is often difficult to accurately estimate a patient’s life expectancy which may contribute to low hospice utilization rates.

Hospice Eligibility Guidelines for COPD

While end-of-life-care is an appropriate topic to discuss with all patients, several factors have been suggested that should prompt a discussion with patients who have severe COPD. One factor is simply that a clinician would not be surprised if a patient with COPD were to die within the next 6-12 months. A clinician should consider hospice referral in a patient with COPD if they are dyspneic at rest or with minimal exertion, have progressed to the point where they spend most of their days at home, have experienced repeated ED visits (one or more each quarter) due to infection or episodes of respiratory failure, have endured repeated hospitalizations (one or more each quarter) and no longer wish to be admitted and the patient no longer wishes to be intubated.

The major hospice eligibility guidelines for COPD are:

There are other important clinical factors that also may support a patient’s hospice eligibility. These are:

Abnormal laboratory findings may also trigger a hospice referral such as:

While these laboratory studies may be helpful to the clinician when considering patient appropriateness for hospice services, they are not required for patient admission.

How Hospice Can Help COPD Patients

COPD is a significant health issue around the world. It is ultimately a fatal disease and patients are under-referred to hospice care. Hospice, with its strong interdisciplinary approach, has been shown to improve quality of life for patients with end-stage respiratory disorders like COPD.

Please contact us if you have any questions about how our team can help COPD patients.

References:

Hospice Eligibility for Patients with COPD. Serena J. Scott, MD, Barry D. Weiss, MD, Ellyn Lee, MD, College of Medicine, University of Arizona.  https://uofazcenteronaging.com. June 2017.

When to refer patients with advanced COPD to palliative care services. Rebecca Strutt. Breathe (Sheff). 2020 Sep; 16(3): 200061.

Referral to palliative care in COPD and other chronic diseases: A population-based study. Kim Beernaert; Joachim Cohen; Luc Deliens; Dirk Devroey; Katrien Vanthomme; Koen Pardon; Lieve Van den Block. Respiratory Medicine. Volume 107. Issue 11, P1731-1739. November 1, 2013.

Elderly African American patient with a walker being assisted by young, female nurse in front of a black and white chalk drawing of a house, fence, and car

Hospice: Care Wherever You Call Home

By: Laura Mantine, MD

It is a fact that only 25% of deaths occur at home while nearly 80% of Americans would prefer to die at home. Unfortunately, many individuals will die in hospitals, while receiving care that is not consistent with their wishes. It’s important for older adults to plan and let their caregivers, doctors, or family members know their end-of-life preferences. In honor of National Hospice and Palliative Care Month, we want to highlight the fact that hospice is not a place- it is an approach to care.

Increasingly, people are choosing hospice care at the end of life in order to remain at the place they call home. Hospice provides comprehensive comfort care as well as support for the family. In hospice, attempts to cure the person’s illness are stopped. However, this does not mean discontinuing all treatment. A good example is an older person with cancer. If the doctor determines that the cancer is not responding to chemotherapy and the patient chooses to enter hospice care, then the chemotherapy will stop. However, other medical care may continue if it is helpful.

Hospice is Not a Place

Hospice is an approach to care, so it is not tied to a specific place. It can be offered in many types of settings including home, hospitals, nursing homes, assisted living facilities, and dedicated hospice facilities. Most care is provided at home with a family member typically serving as the primary caregiver, but it can also occur in a nursing home or any other place the patient calls home. Hospice staff will make regular visits to the patient’s residence and are on call 24 hours a day, seven days a week. Although hospice provides a lot of support, the day-to-day care of a hospice patient is provided by family and friends. The hospice team coaches family members on how to care for the patient and even provides respite care when caregivers need a break. Respite care can be for as short as a few hours or for as long as several weeks.

Hospice is an Approach to Care

Hospice care brings together a team of people with special skills among them nurses, doctors, social workers, spiritual advisors, and trained volunteers. Everyone works together with the patient, the caregiver, and/or the family to provide the medical, emotional, and spiritual support. The hospice team will manage the patient’s symptoms, teach the family how to provide care, and provide bereavement counseling.

Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course. Although there is a six-month time designation, hospice can be provided for as long as the person’s doctor and hospice care team certify that the condition remains life-limiting. Many people who receive hospice care have cancer, while others have heart disease, dementia, kidney failure, or chronic obstructive pulmonary disease. Enrolling in hospice care early helps a person live better and longer, decreases the burden on family, and prepares family members for their loved one’s passing. Families of people who received care through a hospice program were more satisfied with their loved one’s end-of-life care. Also, hospice recipients were more likely to have their pain controlled and less likely to undergo tests or be given medicines they did not need.

Remember, hospice stresses care over cure. The goal is to provide comfort during the final months and days of life while providing ongoing support to the patient and family for whatever time remains.

If you would like more information on hospice care and the services Abode Hospice provides, please contact us.

References:

Picture of night sky with illuminated head and brain outline with a missing puzzle piece. Silhouette holding up the missing puzzle piece

Alzheimer’s Disease Awareness Month

By: Dr. Margarita David Ph.D., RN

What is Alzheimer’s Disease

November is National Alzheimer’s Disease Awareness Month. Alzheimer’s is a progressive brain disorder that cannot be reversed. This disease declines the person’s ability to think, remember, and carry out familiar tasks.

Neurons and connection pathways

The progressive decline in patients with Alzheimer’s is due to the loss of communication between neurons. The neurons are responsible for sending messages from the brain to all parts of your body.

Frontal lobe

The frontal lobe is responsible for your social and emotional skills, motor functions, language, and cognitive functions. When the frontal lobe is damaged, you may experience:

Parietal Lobe

The parietal lobe is located at the back of the skull. It is responsible for your senses such as touch, taste, sight, smell, and temperature. Damage to the parietal lobe can affect any of these functions.

Temporal Lobe

The temporal lobe’s primary function is to keep your memories. Damage to this lobe will make it hard to retain new information.

Who does Alzheimer’s affect?

Commonly, individuals that develop Alzheimer’s are usually over the age of 65, but people under this age may develop it as well, which is considered early-onset.

Early signs of Alzheimer’s disease

The early signs of Alzheimer’s may begin with memory problems and difficulty learning new things or information due to damage in the brain’s hippocampus.

Other forms of neurological diseases

Other degenerative brain diseases include:  

Vascular Dementia

Vascular dementia is caused when you have had multiple strokes, which can cause brain damage which leads to the loss of memory in older adults.

Parkinson’s Disease Dementia

Parkinson’s is a disorder that affects the central nervous system, which affects your movement and will often include tremors in certain parts of your body.

Frontotemporal Dementia

Frontotemporal dementia affects both the frontal and temporal lobes. As this type of dementia progresses, the nerve cells in these lobes are lost causing them to shrink, ultimately affecting behavior, movement, and ability to communicate.

Huntington’s Disease

A rare genetic disease that causes damage to nerve cells in the brain and eventually breaks them down progressively.

Stages of Alzheimer’s disease

Early-stage Alzheimer’s

During the early stage, you may still function independently and continue your normal activities of daily living, such as driving, working, and participating in social events. However, you may experience lapses in your memory, such as forgetting words that are familiar to you.

Middle-stage Alzheimer’s

The middle stage of Alzheimer’s is also known as the longest stage as it can last for years. During this stage, you may experience more pronounced Alzheimer’s symptoms, including confusing words in a conversation, refusing to do self-care such as bathing, and mood changes.

Late-stage Alzheimer’s

In the late stage of Alzheimer’s disease, the symptoms become more severe as you lose the ability to hold a conversation or control your movements. Worsening memory and significant changes to your personality also occur.

Hospice care for Alzheimer’s disease

What to expect

As Alzheimer’s symptoms progress and get worse, hospice care includes symptom management and providing emotional and spiritual support to you and your family.

If you have a loved one living with Alzheimer’s disease and would like to discuss hospice care, please contact us.

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