Alzheimer's disease and Care at the End-of-Life
As an Alzheimer's caregiver, you have been asked to live the “long good-bye” – watching your loved one slowly being lost as their mind moves through its relentless decline. Once the disease progresses towards the “severe” or “late” stage, physical decline begins to take over and further reduce your loved one’s abilities. Your role at this time has never been more important, as you need to ensure that your loved one’s death is free of pain and excess suffering.
In many respects this role is what it has been for some time: keeping your loved one safe and comfortable. At a certain point in the natural course of the illness many caregivers feel it becomes best to focus their efforts on maintaining their loved one’s quality of life, rather than living a longer life.
Comfort Always
*Included below is a discussion of how Alzheimer’s disease leads to death in its most severe stage. It may be distressing to read.
As Alzheimer's enters the severe stage (FAST Stage 7) your loved one may soon become eligible for Hospice Care, which focuses on relieving any pain or distress. Hospice is a benefit from Medicare reserved for individuals felt to have a life expectancy of six months or less. The care provided focuses on managing any distressing symptoms that your loved one may experience.
For an individual with Alzheimer’s disease in its latest stage there is often a slow progressive decline in physical strength. An individual becomes so weak they cannot maintain proper nutrition via food and drink, and their body’s systems begin to shut down. When the kidneys are impacted, there is a slow decline into a coma and death comes soon after. The Hospice care team will focus on ensuring there are no distressing symptoms for your loved one during this process.
Hospice care can be provided anywhere, including at a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.
Criteria for Hospice Eligibility
Medicare hospice benefit guidelines for determining prognosis in dementia:
To be eligible for hospice, patients must meet both of the following criteria:
Functional Assessment Staging (FAST): Patient must be at or beyond stage 7; unable to walk, dress, and bathe without assistance; urinary and fecal incontinence (intermittent or constant); no consistently meaningful verbal communication (stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words)
Medical conditions: Patients must have had at least one of these listed medical conditions over the prior year
Aspiration pneumonia
Pyelonephritis
Septicemia
Decubitus ulcer, multiple, stage 3 to 4
Recurrent fever after treatment with antibiotics
Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous six months or serum albumin <2.5 g/dL
If your loved one’s illness has not progressed to the hospice-eligible stage, it could be that they are a good candidate for “Palliative care” instead. In a palliative care plan, the focus is also on improving the quality of life for your loved one. Importantly, Palliative Care is available at any time during a serious or life-threatening illness. Often palliative care is used alongside other more traditional medical treatment, but keeps the focus on reducing any distressing symptoms, relieving pain, addressing spiritual and psychological concerns, and maintaining dignity and comfort.
A Good Death
You have come to know that helping someone who has Alzheimer's through the illness is a difficult journey on many levels. Among the most profound are decisions that ensure respect, dignity, and physical comfort until the end of life. Having to be the decision-maker as well as suffering the losses along the way is a cruel reality for family caregivers. Please let the NAN staff know if we can be of any help to you as you make these decisions.
Please talk with your own/loved one’s healthcare provider before using any of this information.
