What’s Different About Hospice For Dementia Patients?
Hospice care can significantly alleviate pain and discomfort during the last stage of a person’s life. In some cases, it is relatively easy to determine that someone is unlikely to recover from a progressive condition and that end-of-life care is warranted. In other cases, deciding whether to pursue hospice services can be a complex and nuanced process. In most situations, medical providers have to estimate how long a person has to live, how rapidly their health will decline, and what support they may need as they approach their end of life. This article will examine one of those complex yet common situations: providing hospice support to those living with dementia.
Hospice philosophy and practice
Hospice practices are surrounded by misconceptions and misunderstandings. One of the most prevalent misconceptions is that hospice is associated with imminent death. Many people perceive hospice as “giving up” or sacrificing what little control a person may have left, which is typically inaccurate. Hospice may restore control to many patients, giving them opportunities for autonomy, decreased distress, and improved quality of life.
How hospice works
Hospice is typically offered to terminally ill patients or those who have a disease or condition from which they are unlikely to recover. Patients are generally referred to hospice providers when their anticipated life expectancy is six months or less. Hospice typically focuses on improving the quality of life of the person nearing the end of their life, as well as their loved ones and caregivers. Hospice care does not hasten the death process but seeks to diminish discomfort and suffering as the patient navigates the last stage of their life.
While dedicated hospice facilities exist, most hospice patients receive services at home. The hospice philosophy tends to be holistic in nature, supporting the body, mind, and spirit. In addition to managing pain and other medical complications, hospices seek to provide patients with an environment that is comforting to them, offer emotional and spiritual assistance, and support family members as they say goodbye to their loved ones and begin the grieving process. Many hospices offer grief support for several months after a patient passes.
Hospice support teams: Doctors, home health aides, and more
In many cases of in-home hospice, day-to-day care is provided by the patient’s inner circle, consisting mainly of family and friends. Hospice support services are typically provided by a multidisciplinary hospice team that commonly includes nurses, physicians, social workers, therapists, home health aides, clergy, and trained hospice volunteers. The hospice team typically supports both the patient and their loved ones, often providing guidance and emotional support to family caregivers.
Common services given by doctors, nurses, home health aides, and other hospice team members
Many hospice teams do everything they can to support the patient as their health declines. Common services include:
- Managing the patient’s pain and symptoms
- Overseeing medical equipment and ensuring adequate medical supplies are provided
- Coaching caregivers on how to care for their loved one
- Providing emotional and spiritual support to the patient and their loved ones
- Arranging special services like speech and physical therapy
- Providing respite care to give caregivers a break when needed
Hospice vs. palliative support
Palliative care for people with Alzheimer's disease, cancer, and other serious ailments
There are two commonly confused terms in health care: hospice and palliative care. Palliative services are offered to those living with a serious illness, such as cancer or heart failure. Like hospice, these services are meant to enhance a person’s quality of life, manage pain, and provide support to both the patient and their caregivers. Unlike hospice, palliative support is often provided alongside treatment intended to cure or substantially diminish the impact of the patient’s serious illness. Palliative care may be provided for individuals with a variety of conditions, including:
- Cancer
- Heart disease
- Parkinson’s disease
- Stroke
- Alzheimer’s disease
Hospice care
Hospice, on the other hand, typically focuses on end-of-life care, not on curing underlying illnesses.
Who is eligible for hospice?
In the United States, adults with a terminal illness and a lifetime prognosis of six months or less are typically eligible for hospice care. Patients who experience debilitating effects due to an illness but whose predicted time to live is greater than six months may be candidates for palliative services.
The diagnosis of the patient can affect the hospice treatment plan
A specific diagnosis may not be required for hospice. However, a patient’s diagnosis may significantly impact their hospice treatment plan, the type of support they receive, and the guidance offered to family members and caregivers. Because of this, one diagnosis, dementia, comes with specific challenges and considerations for hospice support providers.
The complicated relationship between hospice and dementia
Many terminal illnesses progress swiftly, often over months, making the decision to provide hospice support fairly straightforward in comparison to the decision process for other conditions. While predicting how a person’s health will decline is not precise, dementias like Alzheimer’s disease tend to progress relatively slowly compared to other conditions that might bring a person to hospice.
Hospice for dementia patients: Challenges of providing services to dementia patients
The basic requirement for hospice care is an expectation that the patient has six months or less to live. However, a dementia patient may live much longer, often beyond when they can care for themselves. Because the criteria for hospice eligibility are typically based on a patient’s expected longevity, not their subjective quality of life, people with dementia are disproportionately discharged from hospice, typically because their condition has stabilized or because the hospice services are worried they will not receive reimbursement from insurers or Medicare if they cannot provide evidence of the patient’s cognitive decline.
The challenge of caring for a person with dementia as the disease progresses
The issue is further complicated by the relative difficulty of caring for those with dementia at home. Home hospice is often considered the gold standard for end-of-life care, offering hospice patients the opportunity to spend their final days in a familiar, comforting environment. Day-to-day care is typically managed by the patient’s family and friends, supported by a dedicated team of hospice professionals. However, as dementia progresses, it can become increasingly difficult for caregivers to manage the substantial concerns the person living with dementia is experiencing.
The difference between traditional hospice and hospice for those with dementia
Because of dementia’s prolonged course, many patients require inpatient care long before the end of their lives. To address the challenges associated with hospice for dementia patients, many memory care facilities are integrating hospice support into their regularly provided services. Memory care facilities are similar to assisted living facilities and other types of residential care facilities.
Patients are given as much independence as their dementia symptoms allow and are typically supported by a multidisciplinary team of professionals. Memory care facilities typically employ people with advanced training in dementia management, have enhanced security to prevent patients from wandering and plan specific activities known to benefit those with memory impairment.
Advanced memory care can substantially increase a dementia patient’s quality of life. Combined with hospice support, it can continue to support a patient’s quality of life as their physical health declines. While the combination of memory care and hospice can substantially improve a patient’s well-being, there can be some noteworthy drawbacks.
Hospice for dementia patients within a secure facility
Most notably, the patient must receive hospice support within a secure facility rather than at home, which goes against best practices for those receiving hospice support. Despite this, evidence suggests that dementia patients who receive hospice support within memory care facilities have a substantially higher quality of life than patients who receive support at home or in traditional inpatient settings.
Seeking support for yourself if you have a loved one with dementia requiring hospice care
If you are a caregiver or loved one of someone who may require hospice support or who has a diagnosis of dementia, you might already be aware of the unique stressors and concerns that come with the prospect of caring for someone whose health is in decline. It may be worthwhile to seek additional support for yourself as a caregiver of a loved one with a difficult illness. One option for support may be online therapy, an increasingly popular way to obtain emotional support services.
Online therapy
Online therapists have the same training and credentials as traditional therapists but deliver their services remotely. With online therapy, you can attend sessions from any location via audio, video, or live chat. Online therapy is also frequently more affordable than in-person therapy without insurance.
Effectiveness of online therapy
Research suggests that online therapy is effective, including for managing grief and bereavement. Online therapists typically use the same evidence-based techniques used in traditional therapy, and the rise in popularity of online therapy has spurred a wave of research examining its effectiveness. That research continues, but published results indicate that, in most cases, online therapy is just as effective as in-person therapy.
Takeaway
Hospice typically provides substantial relief and improved quality of life to many individuals as they near the end of their lives. While hospice care for some patients is straightforward, it can be complex and nuanced in other cases. For those with dementia, hospice best practices can be difficult to follow, and there may be barriers to what a dementia patient’s family and loved ones can do to provide care. To address this, many memory care facilities, which specialize in supporting those with dementia and memory impairment, are integrating hospice support into their facilities. The combination of hospice and memory care, although it has some drawbacks, has the potential to substantially increase the quality of life of those with dementia as they reach the end of their life.
Dementia can also present unique challenges for family members as they watch their loved one experience problems with memory and cognitive decline. In these cases, it may help for family members to speak with a licensed counselor, whether in person or online. Take the first step toward connecting with a compassionate therapist and reach out to BetterHelp.
Frequently Asked Questions
Is there palliative care for patients with Alzheimer’s disease?
Yes, there is palliative care for people diagnosed with Alzheimer’s disease. This specialized medical care provides additional support and improves the patient’s quality of life by managing the symptoms and helping the family plan what’s important for the patient as the illness progresses.
When should a dementia patient go on hospice?
Multiple factors can contribute to when a dementia patient should enter hospice care. Generally, the patient must have a life expectancy of less than six months. They will need a referral from their doctor, and the hospice team will meet with that doctor to put together an individualized care plan.
Hospice services are usually available for as long as they are needed. If someone requires hospice care for more than six months, the cost is usually still covered by Medicaid, Medicare Part A, and some insurance companies if the physician recertifies that the patient’s condition is terminal and they still meet the hospice requirements.
That said, hospice care for people with a dementia diagnosis can be a little complicated. While it is considered a terminal illness and people with dementia are often unable to care for themselves, this disease typically progresses slowly. For example, some types of late-stage dementia can last for years. People with dementia are disproportionately discharged from hospice care, generally because hospice services are concerned that they may not receive reimbursement from personal insurers or Medicare.
When dementia patients should go into hospice, then, can depend on many factors. Some families may have the resources to care for their family members with Alzheimer's or other forms of dementia at home or with the assistance and support of in-home hospice or palliative care. That said, as dementia progresses, it can be increasingly difficult for in-home caregivers and families to manage.
For those who can no longer care for a family member at home, many residential memory care facilities integrate hospice support into their services. In an assisted living community or nursing home focused on memory care, patients can have as much independence as their symptoms allow while receiving hands-on care from people who have advanced training in dementia care.
Which stage of dementia is supportive of hospice eligibility?
Generally, people in the final stages of dementia may be eligible for hospice care. That said, end-stage dementia can last from one to two years. While people in the advanced stages of dementia may meet hospice care requirements, it can help with advance care planning if families understand that the end-of-life process can take longer than six months for dementia and Alzheimer's patients.
Some patients can receive hospice care in their own home or that of a loved one with a hospice nurse and other hospice staff caregivers to assist families, offer respite care, provide hygiene and skin care assistance, and ensure the person eats appropriately and takes their medications. At some point, a long-term care facility may be necessary to help alleviate symptoms and ensure the patient’s comfort.
How do you know when an elderly person is ready for hospice?
When an older adult is ready for hospice care can depend on their physical and mental health symptoms. The only way to be certain that hospice care is appropriate is to talk to a physician, but there are some signs that can be concerning. If your loved one is experiencing difficulty swallowing (a risk factor for aspiration pneumonia), unexplained weight loss or a loss of appetite, uncontrolled or increased pain, or frequent infections, it may be time to consider hospice care.
At what point do dementia patients need 24 hour care?
Some signs that someone with dementia may need 24-hour care include unexplained weight loss, falls, and increasing aggression. Other concerning signs may be neglecting hygiene or having difficulty with self-care, like feeding, eating, or taking medication. If safety is a concern, 24-hour care may be warranted.
When is hospice recommended?
Hospice is generally recommended for people who have a life expectancy of less than six months. There are some signs to look out for to determine if hospice might be an option, like if treatments are no longer working, if they are nearly always in pain, or if they are having frequent hospitalizations. Other symptoms that may be more applicable to patients living with Alzheimer’s and other dementias include being unable to care for themselves, forgetting to take medications, and losing significant amounts of weight.
What is the FAST scale for hospice dementia?
The FAST Scale or Functional Assessment Staging Test is a well-studied tool to measure the normal course of Alzheimer’s disease. Medicare identifies the threshold for supporting a six-month prognosis as people who are identified as stage 7, which may qualify them for hospice care. The diagnostic criteria for stage 7 is divided into multiple substages, but general symptoms include loss of speech, locomotion, and consciousness. Specifically, people in this stage may have a limited ability to speak or lose all intelligible vocabulary and be unable to walk, sit up, smile, or hold their head up independently.
How long are dementia patients in hospice?
Every case is different. Some people with dementia can be in the end stages for months or years. Many factors can contribute to the length of hospice care, including underlying medical conditions and whether the person’s dementia symptoms plateau.
What are 5 criteria for patients to be referred for hospice care?
There isn’t clearly defined criteria for when someone is referred to hospice care. Generally, some factors that may contribute to a referral to hospice include a rapid decline in health despite aggressive medical treatment, frequent hospitalizations, signs of worsening illness (like increased pain, shortness of breath, or frequent infections), signs of mental decline (like withdrawal, decreasing alertness, or confusion), and the family and in-home help being unable to manage the patients needs.
What are the three Cs of hospice care?
The three Cs of hospice care are often said to be commitment, compassion, and conviction.
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