What the End of Life Looks Like With Dementia0 USER TIPS ADD YOUR TIP
People with dementia can live for many years, say experts. While the average survival time for people diagnosed with dementia is about four and a half years, one study found, those diagnosed earlier, before the age of 70, may live for a decade or longer.
Ultimately, life expectancy depends on when a person is diagnosed, the type of dementia they have, and if they have other medical conditions, says Tara Liberman, DO, associate chief of the Division of Geriatrics and Palliative Medicine at Northwell Health in New Hyde Park, New York.
It can help if family and friends know what to expect as the disease progresses, but especially what happens at the very end of life, she says, noting that it’s not often discussed.
What end stage dementia looks like
Over time, dementia patients will gradually lose their ability to think and remember. Their ability to reason and make decisions will decline as well, and they’ll have more difficulty moving around.
“Vascular dementia patients may have had some kind of neurological event or stroke and may have lost mobility or hand and arm use. They can lose their sense of balance sometimes,” says Liberman.
They may also have more difficulty speaking and swallowing as their condition becomes more advanced. “They may have gone from a soft diet to a very pureed food diet. They may eat less each day and feeding can be an issue,” says Liberman. “It’s hard. Families have a difficult time with this because they can’t do a lot for them. They struggle with it because one of the ways we love people is by feeding them.”
People sleep more, too—more hours of the day than they’re awake. “Severe dementia patients are usually more immobile and bed bound. We encourage people to move their bed bound patients every two hours at minimum. Keep patients dry and clean. The moisture from urine or stool can cause skin breakdowns and that can cause skin ulcers,” she says.
As the disease worsens, some people with dementia may not recognize family members, even spouses and other family members who they’ve known a long time or who have been caring for them every day.
“The forgetfulness of who this person is who is caring for them can be very hard for a caregiver. But I think the patient is just experiencing your love in a different way. They can hear you. Speak to them and tell them how wonderful they were as a person and tell them you love them,” says Liberman.
At this stage, they will need help with every aspect of life—full-time caregiving.
How people with dementia die
A person with dementia can die from infection—pneumonia, urinary tract infections, skin infections—or aspiration from food or liquids going down the wrong pipe. If they have other medical conditions (diabetes and cardiovascular disease, for example) they may have more complications such as kidney disease or heart failure.
“Things can happen suddenly or slowly. Something can dramatically change from one day to the next and that can cause families a lot of anxiety. Families panic,” says Liberman, so it helps to be prepared mentally and to try to keep the person with dementia calm.
If other illnesses are present, their medical needs may be more complicated and they may require hospitalization or nursing home care in a facility that specializes in Alzheimer’s and dementia care.
Many family caregivers—especially those caring for someone full-time at home — may experience fatigue and depression. For support and relief, respite care may be a good option. The ARCH National Respite Locator Service can help people find services in their area. The Well Spouse Association also offers support to the wives, husbands, and partners of chronically ill or disabled people and has a list of local support groups across the country.
Planning for the end of life with dementia
Whenever possible, it’s important for families to have some tough conversations about end-of-life care while the person with dementia is still able to express their own wishes. You can use the Alzheimer’s/Dementia Starter Kit from The Conversation Project as a starting point to help you work through those difficult conversations.
It’s also good to create an advance directive, detailing the kind of care they would and would not want to receive, as well as designating a health care proxy—the person they want to make decisions about their health care when they are no longer able to do so themselves.
It may be helpful to consult an advance directive form specifically developed for people with dementia. End of Life Washington created this form, based on Washington State law, and University of Washington internist Barak Gaster, MD, has created a simpler advance directive for dementia. Although these forms may not be legally binding in your state, they can be helpful for guiding family conversations about end-of-life care with dementia.