Some advice for families

At some point, people with dementia will be unable to care for themselves. They may not take medicine. They may not feed themselves. They may not eat or drink at all. They may become inactive. Some people with dementia want to live as long as possible, even if they are bed bound and can’t think. Others may wish to stop treatment when they cannot function on their own. Everyone has the right to decide what treatment is right for them.

Stopping Treatment May Include:

• Stopping medications for dementia. This means that people with dementia won’t need to take any medicines to control their disease.
• Stopping medications for other health problems. This means that not only are they stopping the dementia medicine, but people with dementia may no longer need to take other medicines to treat pain or other symptoms.
• Deciding not to treat infections with antibiotics.
• Not forcing food or water. This means that people with dementia don’t have to eat healthy foods as they did during treatment. Instead, they can eat whatever they want.
• Not calling 911, and not going to the emergency room or hospital when sick.

Even if those treatments are stopped, treatment to relieve pain and assure comfort should always continue.

Advance Planning for Stopping Treatment

As people living with dementia become less able to make their own decisions, they must rely on others. It is very helpful if they have signed papers that name someone to make decisions for them. They should also discuss their end-of-life wishes with that person and with their families. That will make it easier for others to know if, and when, to stop treatment.

Some people don’t plan in advance and it often creates problems because families might not know for sure what the person wants. In fact, different members of the family might think different things should happen. This can cause arguments between family members, which can make a difficult situation harder for everyone.

Deciding to stop treatment is always a hard decision. It helps if families discuss this option with the person’s healthcare provider. Seeking advice from a clergy member, social worker, or someone from the Alzheimer’s Association may help. When families don’t agree on what to do, a family meeting with someone outside of the family can help.

But remember that it’s best to find people who know a lot about dementia or who really understand if people with dementia at this point can stop treatment. Don’t look to anyone else to keep you from making big mistakes.

Advice for paid care partners

Paid care partners often help provide care for people with dementia. They often become close to the patient and the family. They may have strong feelings about stopping treatment, and may or may not agree with the family’s decision. This can be stressful. But, it is not the paid care partner’s role to pressure the family or to discuss their decision. It is important that they support the family, not give their opinions. A smile, sitting together quietly, or a hand on the back may provide the best support.

Here are some helpful things that care partners can say:

•  “This is very difficult. I know you will make the best decisions possible.”
•  “It might help to discuss this with your doctor or nurse.”
•  “The Alzheimer’s Association, a clergy member, or social worker might be able to help decide what to do.”

It is very important that paid care partners don’t give advice or opinions to the family or the patient.

Remember that these issues should be kept private. You can discuss concerns with your supervisor. You can write out your feelings. You can discuss your feelings with a friend or counselor without naming names or specifics.

Here are some tips for the family and care partners of people with dementia. “When may it be time to stop treatment for dementia?” will not have a clear and exact answer. We’ve already talked about everything we can do to help people with dementia.

See more: How to Give Medication to Someone with Dementia