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.

Supporting a loved one with dementia?

A therapist can help.

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 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 one and begin the grieving process. Many hospices offer grief support for several months after a patient passes. 

Hospice support teams

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, 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. 

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

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

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. 

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. 

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 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

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. 

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 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 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. 

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.