We humans all have two things in common–we’re all born, and we all die. We don’t have too much to say about being born–our parents get to decide all the details on that. However, we have a few more choices about how and where we die. Unfortunately, a diagnosis of dementia can complicate some of those choices.
When given a choice, most people say they’d like to die peacefully at home, surrounded by loved ones. In the distant past, that was the way it usually happened. Then we moved into a period where people often died in the hospital, surrounded by healthcare workers who were trying to keep them alive no matter what. Thanks to services like hospice, we are moving back toward giving those who are dying more control over where they stay during the death process and what measures they would like to take to make sure their final days are comfortable and peaceful.
Qualifying for Hospice in General
Most insurance companies and other organizations provide services to those who are dying if they meet certain criteria. Those criteria generally include that you or your loved one has a prognosis of less than 6 months to live (certified by a doctor) and that you agree that you will only receive palliative (comfort) care rather than care that will attempt to cure your illness.
These are, usually, pretty clear-cut criteria. However, what happens when dementia enters the picture? This debilitating disease doesn’t always have definite borders between its stages, and often the person with dementia is unable to make decisions. It may be difficult for family members to decide when their loved one with dementia is approaching the end stages of life and needs help from (and qualifies for) hospice services.
What is Dementia?
There are several types of dementia, which simply means a brain condition that gets worse over time and causes problems with memory, thinking, and behavior. Most of the time, when we hear “dementia,” we think of Alzheimer’s disease, but other types include Lewy body dementia, Parkinson’s disease dementia, and Huntington’s disease.
In the early stages of dementia, a person usually starts to forget names or misplace objects and has trouble finding the right words. However, they can usually function independently, though they may have trouble with planning and decision making. In the middle stages, they have more severe memory loss and confusion. They may be confused about where they are and have trouble with day-to-day tasks. This stage usually lasts the longest. In the end stages of dementia, a person will require 24-hour assistance with daily activities. They may forget how to eat or even how to swallow. At this point, family members may need help caring for their loved one, and this is where hospice can help.
Qualifying for Hospice with Dementia
One of the main criteria for hospice care is the requirement that the person have a prognosis of less than 6 months to live. Sometimes, a person with dementia has another disease, such as heart disease, cancer, pneumonia, or COPD that may qualify them for hospice care. However, if the only diagnosis is a type of dementia – something that a person has had for an extended period – how do you know when they are ready and eligible for hospice care?
Though every person is different, here are a few things that signal that a patient with dementia may be ready for hospice care:
- Weight loss and/or dehydration due to problems in eating and drinking
- Choking on food or difficulty swallowing
- Unable to walk at all, even with the assistance of a walker
- Limited speech, such as less than 6 words a day
- Urinary and fecal incontinence
- Unable to sit up (slumps over or slips out of seat)
- Increased hospitalizations and ER visits
- Unable to smile
If your loved one is experiencing some or all of these issues, it may be time to evaluate whether hospice is an option with your loved one’s healthcare provider.
What Services does Hospice Provide?
Hospice services can be quite comprehensive and are usually provided in the home. These services include help for family members as well as the person in hospice care. Its goal is to meet the physical, emotional, and spiritual needs of the entire family. You may need to check with your insurance company to figure out what services are available to you, but usually a hospice team includes doctors, nurses, social workers, bereavement counselors, chaplains (if you choose to use one), home health aides, and even trained volunteers. Some hospice services even offer help with tasks such as cleaning and shopping. Other hospice services can include respite care so that family members can take a break from caring for their loved one, knowing that they are in good hands. For many families, hospice care can provide relief from daily care responsibilities, allowing them to spend time with their loved one while still meeting their own needs and the needs of other family members such as children.
Accepting hospice care means accepting that you or your loved one is in the final stages of life. The goal of hospice care is to help with the suffering that your loved one and the entire family is experiencing. Dementia can complicate the criteria for hospice eligibility at the same time that you need lots of help caring for your loved one. Using the criteria above can help your family make decisions that will ensure that your loved one and your family can receive help and comfort during the last months of life and assist with a peaceful death experience for everyone involved.