A diagnosis of dementia can be overwhelming. Patients and their families want to understand the impact of the cognitive, physical, and psychological changes associated with dementia, and how to cope with them. Caregivers searching for long term care for dementia patients may wonder if care can take place in the home, or how to deal with emergencies when they arise.
Samaritan’s comprehensive dementia care program provides South Jersey families with extraordinary compassionate care and professional clinical expertise through every stage of the disease, including primary care, palliative care, and hospice care. Samaritan helps patients and caregivers navigate the difficult and often unpredictable course of dementia, which can last for a decade or longer.
“We can help along the way at any step of dementia,” says Sara Pagliaro, DO, Vice President of Medical Affairs at Samaritan. “Care coordination is very important, especially with dementia. Often, we are focusing so much on symptoms and what a patient cannot do, as opposed to thinking about what they still can do and what they might enjoy.
“Through Samaritan’s dementia care program, patients benefit from goal-oriented patient services: care coordination of their medical team, discussion of advance care planning, even communicating what to expect with a patient’ symptoms and functional status.”
Samaritan is offering this guide in partnership with The National Partnership for Healthcare and Hospice Innovation (NPHI), along with the Center to Advance Palliative Care (CAPC) and Aliviado Health. Fill out the form below to get your guide!
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Dementia is not a specific disease, but rather an umbrella term for a neurodegenerative condition. A person with a diagnosis of dementia will experience progressive cognitive decline, impaired reasoning and intellectual thinking, persistent memory loss, and behavioral changes. The most common form of dementia, Alzheimer’s disease, affects 190,000 people age 65 and older in New Jersey alone, but other forms of dementia include Lewy Body, vascular dementia, and frontotemporal (FTD). Dementia is not a normal part of aging, and although science has made great strides in dementia research and treatment, there is currently no cure.
Dementia affects each person differently. Some people experience emotional outbursts and changes in their personality. Others may become apathetic and withdraw from family and friends. At any stage of dementia, even early on, patients may face “sundowning” – agitation, confusion, or restlessness that starts in the late afternoon and lasts into evening and night.
At the end stages of dementia, a person will sleep much of the time and lose control of bodily functions, needing help with every aspect of life: eating, toileting, washing, even turning over in bed.
Dementia is often called a family disease because maintaining a patient’s quality of life can take an enormous toll on caregivers and family in addition to the patient. Care coordination, medical management of symptoms, preparing one’s home, and understanding the trajectory of the disease are critical for patient and caregivers. A person’s symptoms may remain stable for months and even years, before suddenly worsening; alarming new symptoms may also emerge quickly.
Planning for the progression of dementia is important, and Samaritan can help patients and their families at each stage of the progression with its dementia disease management program, says Stephen Goldfine, MD, DABFP, CAQGM, DABHP, Chief Medical Officer. “Early advance care planning allows us to identify the goals of care and get the patient’s voice heard within those goals,” he says.
Patients in the early stages of dementia are well-served by our primary dementia care at home. The program includes Samaritan HomeVisit Physicians – primary care doctors who make house calls throughout South Jersey. They are experts in coordinating complex care for patients in the comfort and familiarity of home. The program also includes:
The primary care team may facilitate patient care with other specialists – such as a Neurologist- as needed to create a treatment plan that manages a patient’s symptoms in the best possible way. The physician will also start to facilitate conversations with the patient, family, and caregivers to develop a care plan based on how symptoms unfold – conversations that will continue throughout Samaritan’s continuum of care.
In addition, having a care plan for dementia patients at home is much more convenient than frequently traveling to a doctor’s office, which is stressful for patients and caregivers. Samaritan HomeVisit Physicians aim to significantly improve the overall health care experience – for a patient, family, and especially caregivers, who often bear an enormous burden.
“Caregivers really do have a very difficult burden ahead of them with planning for the care needs of dementia patients,” says Dr. Pagliaro. “Sometimes it seems as if there is not enough time in the day for a caregiver.” Samaritan’s continuum of care can be a source of support for caregivers as dementia progresses for their loved one.
The dementia care program also includes palliative care. Palliative care for dementia provides an extra layer of support for relieving the cognitive, physical, functional, and psychological symptoms of dementia, which can include pain, discomfort, difficulty swallowing, anxiety, and depression. This symptom management may be difficult for caregivers to tackle on their own, which is why palliative care is a great option for improving both the patient’s quality of life and easing the caregiver’s burden.
Samaritan’s palliative care clinicians will also continue to facilitate conversations between patients, families, and their clinical care team to develop an advanced care plan to sustain the quality of life and quality of care a patient is seeking.
“Continuity of care and care coordination is important through all stages of dementia, because as it is a progressive disease, having those difficult discussions earlier on can help a family be prepared, instead of blindsided, should a patient need tube feeding or a long-term care facility,” says Dr. Pagliaro. “And Samaritan will guide you through these decisions with compassion, answering your questions and providing continuum of care that can make the journey of dementia more bearable.”
Hospice care for dementia is also part of Samaritan’s long-term care approach for dementia patients. While each person’s journey with dementia can be different, there are some signs that may signify the end-stage of the disease, including:
“Providing compassionate care for the whole person, not just the disease, is important for patients and families dealing with end-stage dementia,” says Dr. Goldfine. Samaritan’s hospice dementia care program focuses on quality of life and comfort, while still working to meet the patient’s goals of care. We create hospice care plans for dementia patients at home or any chosen environment surrounded by loved ones.
The Samaritan hospice care team includes:
The care team works together to help manage pain with medication, assist with bathing and hygiene, and help families cope with anxiety and grief. At the later stages of dementia, Samaritan hospice care can help the patient and family address the complex end-of-life needs including spiritual, social, and emotional support and understanding.
As patients, caregivers, and families travel the long road of dementia, Samaritan aims to alleviate the fears and provide a supportive care team. “In dementia, there are unknowns for the patient and their caregivers, and unknowns can create fears,” says Dr. Goldfine. “With Samaritan coordinating care and making appropriate referrals, hopefully we can ease those fears, answer those questions, and better educate patients and caregivers.”