Navigating Hospice Care for Loved Ones with Dementia in the End Stages

Dementia is often described as “the long goodbye,” as those with the condition tend to live with it for many years before reaching the advanced stages. This prolonged journey can leave caregivers wondering when they should begin to consider transitioning their loved one to hospice care.

What is hospice?

Hospice care prioritizes delivering the utmost comfort, dignity, and freedom from pain to the patient. While hospice services are commonly administered at home, they are also accessible at various nursing homes, hospitals, and standalone hospice centers. Even if your plan is to care for your loved one at home, explore local care facilities as a contingency plan. The unpredictable progression of dementia may require you to change your plans, so it’s important to be aware of alternate options should your loved one’s needs be greater than you originally thought.

Planning ahead: How early should you be considering hospice?

Proactively planning for end-of-life care is essential to avoid being overwhelmed when the time comes. During the latest stages of dementia, your loved one will likely become entirely reliant on the assistance of others, and will have limited ability to express themselves. If your loved one also has an intellectual or developmental disability (IDD), these challenges may be even more pronounced. If you are trying to manage these increased needs while planning for hospice, you’re likely to wind up even more stressed and burned out than you already are. 

Initiating these discussions during the initial or early middle stages of dementia allows your loved one to contribute to decision-making. Their involvement can alleviate some of the stress that falls upon you, as well as other caregivers or family members, when the time comes. It also gives you time to get everyone in the family on the same page so there are no last-minute disagreements holding you up when you need to be taking action.

Evaluating hospice options: What considerations are there?

When evaluating hospice choices, consider the following factors:

• The size of the hospice team, encompassing case managers, doctors, nurses, social workers, and nurse aids. Additional expertise, such as pharmacists, physical and occupational therapists, a registered dietitian, and spiritual counselors, may also be worthwhile to explore.
• The level of personal care offered by the hospice team. For instance, the frequency of case manager visits or the types of pain management methods employed by the staff.
• The continuity of care provided, ideally ensuring consistent staff members, particularly nurses, throughout the week.
• The qualification of staff to handle other existing conditions such as IDD, mobility issues or Parkinson’s.
• The rationale behind a physician's recommendation for a specific hospice option. Don't hesitate to inquire about the basis of their suggestion and ascertain whether it stems from their experience with the service's quality or if financial incentives influence their decision.

How do I recognize when my loved one has reached the advanced stages of dementia and may be eligible for hospice?

As the disease progresses, your loved one's ability to communicate and manage daily activities will diminish. Indications such as difficulty swallowing, loss of appetite, recurrent pneumonia, or other infections often signal the advanced stage of dementia.

Qualifying for hospice care necessitates your loved one's physician confirming that they are anticipated to live less than six months if the disease follows its natural course. In most cases, Medicare typically covers hospice care when it is provided during the final six months of the illness.

What is the role of hospice care professionals?

Hospice professionals are well-versed in the end-of-life process and can offer valuable insights to families. Their dual purpose encompasses providing comfort care to both patients and their loved ones, while also helping families comprehend the unfolding situation. The demands of end-of-life caregiving can be incredibly taxing and draining for family members. Most hospice services extend respite support, providing relief. Recognizing the emotional difficulty that accompanies end-of-life, the hospice team also extends vital support and counseling to family caregivers.

For a first hand account of what the hospice care experience is like, visit our A Caregiver’s Journey Through Hospice Care blog.