Dementia is a progressive, neurological illness affecting memory, thought, and behavior. Families struggle with care decisions as the illness progresses, particularly when the condition becomes severe. Perhaps one of the hardest care decisions families struggle with is whether to place a loved one into hospice for dementia patients. Having a clue about the optimal time to take this step may provide the patient with the most comfort and dignity in the patient’s remaining days.
Learning Hospice Care for Dementia
Hospice care emphasizes comfort and quality of life over curative interventions. It is intended for patients with a six-month or less prognosis to live, as certified by a physician. For dementia patients, this time frame can be more difficult to ascertain due to the progressive nature of the disease. Hospice care involves extensive medical, emotional, and spiritual care specific to the special needs of late-stage dementia.
Besides pain control and emotional support, hospice also provides family caregiving services that enable caregivers to manage the physical and emotional pressure of caring for a loved one in decline. Education on what to expect is received by the family, in addition to materials for making good choices about care for their loved one.
Most Important Indicators That It’s Time for Hospice
Determining when hospice care is appropriate involves recognizing specific physical, cognitive, and emotional changes. Here are 10 signs death is near dementia patients that indicate it may be time to consider hospice care:
1. Severe Cognitive Decline
Late-stage dementia patients have severe cognitive impairments, including:
- Loss of recognition of family and friends
- No awareness of environment
- Severe agitation and confusion
- Persistent delusions or hallucinations
2. Inability to Communicate
A patient with dementia who is at the end of life will usually lose the ability to communicate verbally. They can only utter a few words or nothing at all. The loss of the ability to communicate pain or discomfort necessitates palliative care. Facial expressions and body language become the main signs of distress.
3. Loss of Mobility
In the late stages, patients are bedridden or need much assistance to get around. They can no longer sit up by themselves, so daily activities become impossible. This immobility puts them at risk for pressure sores, infection, and muscle contractures.
4. Difficulty Swallowing and Weight Loss
Difficulty swallowing (dysphagia) results in choking risks and aspiration pneumonia. Consequently, patients tend to lose weight quickly, have difficulty with dehydration, and need other means of feeding. These issues tend to cause families to make tough choices about feeding tubes and artificial hydration.
5. Frequent Infections
As the immune system declines, frequent infections like pneumonia, urinary tract infections (UTIs), and sepsis become habitual. Such infections usually signify the body is shutting down, so repeated hospital stays become less effective and more stressful for the patient.
6. Increased Sleeping and Fatigue
Patients will sleep for extended periods and have little appetite for eating, drinking, or activity. Greater fatigue is another indication of the slowing of the body. Energy diminishes considerably, with patients remaining mostly in bed.
7. Complete Dependence on Caregivers
Final-stage dementia patients entirely rely on caregivers for the following activities:
- Eating
- Dressing
- Bathing
- Toileting
- Turning and repositioning to avoid bedsores
8. Excessive Pain and Discomfort
Chronic pain is common in many dementia patients, which often goes undetected since they are unable to express their discomfort. Hospice caregivers are experts at pain relief and enhancing comfort. Pain can be indicated by grimacing, restlessness, and unusual agitation.
9. Hospitalization in Excess
If a patient with dementia has a history of recurrent hospitalizations due to infections, falls, or declining health, hospice could be a preferable option to recurrent medical interventions. Reducing the number of unnecessary hospitalizations prevents distress and optimizes comfort care.
10. Withdrawal and Non-Responsiveness
A prevalent indicator that death is imminent in dementia patients is withdrawal from environments. Patients cease to react to touch, voice, or recognizable faces. They become distant, unresponsive, or detached from their surroundings, which is an indication of the body’s inherent shutting-down mechanism.
How Hospice Care Supports Dementia Patients and Families
Hospice offers a holistic care approach that addresses physical, emotional, and spiritual care for patients and families. Services comprise:
- Pain and Symptom Control: Medications and treatments to diminish distress and pain.
- 24/7 Care: On-call nursing staff and aides to provide relief for emergencies.
- Emotional and Spiritual Support: Chaplains, counselors, and social workers offer family guidance.
- Respite Care for the Family: Periodic relief for family members who have been responsible caregivers.
- Hospice Advance Care Planning: Counseling on funeral planning, legal documents, and memorial services.
Selecting the Right Time for Hospice Service
It is hard to decide when to switch to hospice, but early engagement enables families to get the most out of palliative care. Meeting with a hospice provider can assist in establishing whether a patient qualifies. Families need to consider hospice care when the patient’s condition is worsening despite treatment, so their loved one gets loving and respectful care during their last few months.
Final Thoughts
Knowing the 10 warning signs death is imminent for dementia will prepare families for decisions around end-of-life care. Hospice delivers compassionate and dignified care so the patient spends his or her last time peacefully and comfortably. Addressing quality of life, rather than treating it medically, enables families to assure their loved one dies in a peaceful and dignified manner.
