Why Dementia Caregivers Should Call Hospice Now, Before a Crisis

By Steven Watson, LCSW-C, APHSW-C, Psychosocial Clinical Specialist

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Why Dementia Caregivers Should Call Hospice Now, Before a Crisis

When people imagine losing someone they love, they often picture a sudden event like a heart attack, an accident or a serious illness that unfolds quickly. 

Dementia is different. Instead, families witness small, gradual changes that can take place over many years.

Memory fades. Communication becomes harder. Personality and shared history may slowly disappear. Long before death occurs, loved ones are already experiencing grief.

Meanwhile, the demands on the caregiver increase. Often there is one primary caregiver, usually a spouse or adult child, carrying most of the responsibility.

A Sense Of Duty

Many people assume the hardest part of caring for someone with dementia is the physical work. But in my experience, the biggest challenge is often the constant stress. Caregivers live with a sense of uncertainty: When will something change? When will there be a fall, an infection or a new behavior to manage?

That ongoing pressure can take a toll. Caregivers may struggle with sleep, anxiety or depression. They may begin neglecting their own health. They will miss their own medical appointments, forget to take their own medications or withdraw from their friends and family. 

Many feel a deep sense of duty. They believe this is what they are supposed to do. Because of that, it can be very difficult to admit when they need help, never mind ask for help from a hospice organization.

More Help, More Time

One of the biggest misconceptions about hospice is that it is only for the last few days of life. In reality, hospice is designed to support patients and families for months.

I often describe hospice as providing three things: people, equipment and medications.

The hospice team may include nurses, nursing assistants, social workers, spiritual care providers and physicians who oversee the care plan. Hospice also provides medical equipment, such as hospital beds, walkers or oxygen. The team also manages the patient’s medications. Most of the time, medications are delivered to their home, along with personal supplies such as incontinence briefs, bandages, lotions and more.  

These services are usually covered by Medicare and most insurance plans.

Hospice does not mean stopping medical care. Instead, it shifts the focus from curing disease to prioritizing comfort, quality of life and support for both the patient and the caregiver.

Why Calling Earlier Helps

Families often wait until a medical crisis to call hospice, but earlier support can make a significant difference.

The challenges of caregiving and medical decline are happening whether hospice is involved or not. The question is whether families want additional guidance and support during that time.

Early involvement means caregivers receive help managing symptoms, emotional support and time to develop a plan of care, rather than making rushed decisions during a crisis.

If you are caring for someone with dementia and are unsure whether hospice may be appropriate, know this: reaching out does not mean you are committing to anything.

It is simply a conversation—and sometimes that conversation is the first step toward realizing you do not have to navigate this journey alone.

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Dementia Care and get your free downloadable Dementia Care Resources Guide: https://www.hospicechesapeake.org/hospice-supportive-care/dementia-care/