End of Life: Helping with Comfort and Care
Dementia at the End of Life
While I thought that I was learning how to live, I have been learning how to die.
— Leonardo da Vinci (1452-1519)
As they reach the end of life, people suffering from dementia can present special challenges for caregivers. People can live with diseases such as Alzheimer’s or Parkinson’s dementia for years, so it can be hard to think of these as terminal diseases. But, they do cause death.
Dementia causes the gradual loss of thinking, remembering, and reasoning abilities, making it difficult for those who want to provide supportive care at the end of life to know what is needed. Because people with advanced dementia can no longer communicate clearly, they cannot share their concerns. Is Uncle Bert refusing food because he’s not hungry or because he’s confused? Why does Grandma Sakura seem agitated? Is she in pain and needs medication to relieve it, but can’t tell you?
As these conditions progress, caregivers may find it hard to provide emotional or spiritual comfort. How can you let Grandpa know how much his life has meant to you? How do you make peace with your mother if she no longer knows who you are? Someone who has severe memory loss might not take spiritual comfort from sharing family memories or understand when others express what an important part of their life this person has been. Palliative care or hospice (see Care Options at the End of Life) can be helpful in many ways to families of people with dementia.
Sensory connections—targeting someone’s senses, like hearing, touch, or sight—can bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen their agitation.
When a dementia like Alzheimer’s disease is first diagnosed, if everyone understands that there is no cure, then plans for the end of life can be made before thinking and speaking abilities fail and the person with Alzheimer’s can no longer legally complete documents like advance directives (see Prepare Advance Directives and Other Documents).
End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care he or she would prefer. Someone newly diagnosed with Alzheimer’s disease might not be able to imagine the later stages of the disease.
Alma and Silvia’s Story
Alma had been forgetful for years, but even after her family knew that Alzheimer’s disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Alma’s memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.
This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didn’t know how to best reflect her mother’s wishes. Her decisions had to be based on what she knew about her mom’s values, rather than on what Alma actually said she wanted.
Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild to moderate Alzheimer’s disease.
However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimer’s. They may believe that the person’s quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.
When making care decisions for someone else near the end of life, consider the goals of care and weigh the benefits, risks, and side effects of the treatment. You may have to make a treatment decision based on the person’s comfort at one end of the spectrum and extending life or maintaining abilities for a little longer at the other.
With dementia, a person’s body may continue to be physically healthy while his or her thinking and memory are deteriorating. This means that caregivers and family members may be faced with very difficult decisions about how treatments that maintain physical health, such as installing a pacemaker, fit within the care goals.
Dementia often progresses slowly and unpredictably. Experts suggest that signs of the final stage of Alzheimer’s disease include some of the following:
- Being unable to move around on one’s own
- Being unable to speak or make oneself understood
- Needing help with most, if not all, daily activities, such as eating and self-care
- Eating problems such as difficulty swallowing
Because of their unique experience with what happens at the end of life, hospice and palliative care experts might be able to help identify when someone in the final stage of Alzheimer’s disease is in the last days or weeks of life (see Care Options at the End of Life).
Caring for people with Alzheimer’s or other dementias at home can be demanding and stressful for the family caregiver. Depression is a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.
Many family members taking care of a person with advanced dementia at home feel relief when death happens—for themselves and for the person who died. It is important to realize such feelings are normal. Hospice—whether used at home or in a facility (such as a nursing home)—gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.
You will want to understand how the available medical options presented by the healthcare team fit into your family’s particular needs. You might want to ask questions such as:
- How will the approach the doctor is suggesting affect your relative’s quality of life? Will it make a difference in comfort and well-being?
- If considering home hospice for your relative with dementia, what will be needed to care for him or her? Does the facility have special experience with people with dementia?
- What can I expect as the disease gets worse?
Some resources to help you learn more about dementia and end-of-life care:
U.S. Department of Health and Human Services
Publication Date: July 2016
Page Last Updated: May 2, 2017