For those patients who have been diagnosed with dementia, life may never be the same. This might also apply to family members who are involved in the process of helping the affected patient. There are numerous components for effective dementia care, but unfortunately, the patient’s condition may deteriorate and ultimately lead family members to consider hospice care.
Many physicians and caretakers may be involved in the process of developing a treatment plan for a patient with dementia. Over time, it is expected that the person’s condition will worsen. After an initial diagnosis is an important opportunity to consider how hospice care can be used in conjunction with dementia care to give the patient and family members additional support.
Deciding to make use of hospice too late can add unnecessary additional pressure for family members. The good news is that much of the amplified stress associated with a worsening dementia condition can be avoided by engaging with hospice care sooner rather than later. Hospice is designed to be utilized when other methods of treating the underlying condition are no longer effective and when a patient has received a life-limiting diagnosis of six months or less. Hospice care is a crucial component of helping a patient who may want to focus on getting relief from symptoms and pain while not having the additional stress of undergoing treatments designed to cure the ailment.
The Costs of Not Getting Hospice
Failing to get hospice care soon enough can make things more difficult for the patient and for the family caretakers, too. New research studies show that an alarming number of dementia patients are only receiving hospice care in the last several days of their life, which simply adds stress and means that the patient may be going without critical support in the weeks and months beforehand. Knowing when hospice is appropriate is a difficult decision to make, but it is also an important one for loved ones to consider so that an impacted dementia patient gets the care and support they need when they need it most.
What Makes Hospice Different?
It is very difficult to learn that a loved one has recently been diagnosed with dementia or that a loved one’s dementia has deteriorated to the point where it is time to consider end-of-life care options such as hospice. Hospice may eventually need to be used with a dementia patient who is not showing signs of improvement or who otherwise has received a life-limiting diagnosis from a doctor.
Caregivers who provide assistance in terms of a dementia diagnosis may not be aware of how hospice is different. Hospice care is not just for the patient, as those involved in a hospice treatment plan also support family members.
Hospice care for Alzheimer’s and other dementia-related problems can help to give peace of mind to the family members involved in the situation. Hospice care focuses on dignity and comfort at the end of a person’s life, and it can be extremely beneficial to all people who are in the final stages of Alzheimer’s disease and the family members trying to support a loved one. Hospice care is a particular way of caring for individuals who are terminally ill, and it provides an additional support structure to the family members involved.
Main Goals of Hospice
The primary goal of hospice care is to manage symptoms like pain during the last six months of a person’s life. The treatments focus primarily on comfort rather than the goal of eradicating the underlying disease. This is primarily because the disease may be so advanced that it can no longer be effectively treated. Family members and the loved one may have decided that hospice care is more appropriate to provide pain relief and comfort during this time.
Types of Hospice Support
Some of the most common types of hospice support include:
- Grief support for the family
- Counselling regarding the spiritual and emotional impact of an end of life situation
- Medical care to alleviate pain and symptoms
- Respite care that gives family caregivers relief and support
The majority of hospice care in the United States today occurs in a nursing facility or at home. However, there are also hospice units and freestanding hospice facilities in certain areas of the country as well.
To initiate hospice care, an individual must have a life expectancy of six months or less, and typically, a physician’s referral is needed. In the event that a family member qualifies for hospice, talk through the situation with other family members and the physician as well. Of course, if the loved one is able to discuss the situation, a conversation with him or her is also important.
Dementia Care and Hospice Care
Many individuals who are dementia caregivers do not take the appropriate time to plan well in advance for utilizing hospice. A study recently published in the Journal of the American Medical Association indicates that more individuals are dying with hospice care than 10 years ago. However, many are doing so in increasingly fewer days after being in intensive care. The study involved 840,000 individuals aged 66 or older. The purpose of the study was to identify where seniors died, the medical services that were provided during the last 90 days of life for those patients, and how long the patients received them. The study seems to indicate that, for many individuals who may ultimately need hospice care, end-of-life hospice care occurs only as an afterthought.
Hospice care may also be added on in addition to a very aggressive pattern of care during the last few days of an individual’s life. Many patients may not want this, however.
Over the course of a 10-year period, hospital based palliative care and hospice teams have made significant advances in the American healthcare system, particularly as they become more and more mainstream and popularly used. However, a deeper analysis of the individual patient histories identified that the system fell short in measuring the psychological support and comfort that arguably should be provided to dying seniors. As an example, although the proportion of dying seniors increased by nearly double between 2000 and 2009, the number of individuals who were in intensive care over the last month of their life also surged to nearly 30% in 2009 from just over 24% in 2000.
More than a quarter of hospice care used in 2009 was for less than three days, and 40% of those referrals came after an intensive care stay in the hospital. Poor communication may be at the root of this unwanted care that puts individuals in line with the hospice team when it is far too late. The percentage of individuals who were referred to hospice for three days or less doubled over the course of a decade from 4.6% to 9.8%.
Dying patients receive symptom control far too late and are unable to benefit from the psychological supports available. If they were there a longer period of time, then they could receive hospice benefits. This also puts family members at a greater disadvantage for being able to reap the benefits associated with hospice care. According to the study, seniors who passed away in 2009 were 11% more likely to die within their own homes and 24% less likely to die in a hospital than those individuals who passed away in 2000. These trends reflect more late transitions, more repeat hospitalizations, and more time spent in the ICU.
There are several different issues also involved with patient care as it regards physician culture, including ineffective and untimely communication about the needs of patients and the family members.
Availability of Hospice Care
Hospice services are typically available for as long as they are needed, despite the fact that the data indicates that a growing number of patients receive them for three days or less. If a person lives beyond this typical six-month period associated with hospice, services are still usually provided by Medicaid, Medicare, and other private insurers so long as a physician is able to re-certify that the person needs hospice care. Hospice is usually covered under many private insurance plans, Medicaid, and Medicare.
Medicare will cover hospice if the person receiving hospice has Medicare part A, and meets several conditions. First, the person must elect to receive hospice care and waive the right for Medicare to pay for any other services associated with treating the illness. Second, the hospice Medical Director and the person’s physician must both certify that the individual is indeed suffering from a terminal diagnosis.
Hospice care should never be viewed as an afterthought as it is an important component of giving a patient support, both physically and psychologically at the end of their life. It also gives additional support systems to family members who may be struggling with the impending loss of a loved one.