Coping with Late Stage Alzheimer's
Alzheimer's disease is a progressive disease that is often broken down into three general stages: early (also called mild), middle (moderate), and late (severe). The stages do have some overlap, but each stage brings different symptoms and severity. Each person with the disease is different, and so different people may progress through the stages at different times with different primary symptoms. Late stage Alzheimer's involves severe symptoms and can last anywhere from several weeks to several years.1 Knowing more about various symptoms of this stage and ways to provide care for a person in this stage can help make things a little less difficult.
Late stage Alzheimer's symptoms
As Alzheimer's disease progresses, the person with the disease eventually loses the ability to respond to their surrounding environment, including responding to people.2Memory and cognition continue to worsen, and eventually they are not able to control their own movements or body, needing intensive caregiving assistance. Symptoms that occur during late-stage Alzheimer's disease include:2
- Loss of physical abilities; ie, the ability to move, walk, sit up, feed self, and eventually, swallow
- Increasing trouble communicating with others
- Loss of awareness of recent events and of their surroundings
- Requires continuous, 24/7 assistance with everyday activities and basic tasks and personal care
- Increased susceptibility to infections
This stage can be very taxing for caregivers. If family members are taking care of the person with Alzheimer's disease, they may want to seek additional, professional assistance at this time for moving the person and help with feeding and personal care. This is not only to help the caregiver, but also for the physical safety of the person with Alzheimer's disease. Moving and lifting can be dangerous if one is not trained properly, and feeding someone with swallowing difficulties can be tricky, especially since the person is at risk for aspirating food and pneumonia. Some people may find that now is also the time when a memory care home may be the best option for a loved one with Alzheimer's disease. These places often have a level of care that isn't possible in their homes, with specialized staff, safety measures in place, and a built-in community for the person.
Strategies for living with late stage Alzheimer's
Late-stage Alzheimer's can be very difficult for family members and caregivers, especially if they are untrained in working with Alzheimer's patients. If the person with Alzheimer's disease is unable to move, sit up, or walk, a professional home health aide might be necessary. They can show caregivers how to safely and correctly move the person or change their position.
A home health aide, nurse, or physical therapist can also provide family members and caregivers for strategies for bathing, feeding, and daily tasks.3 Even if the person cannot move independently, it's helpful to move their limbs for range-of-motion and change their position to avoid bedsores, urinary tract infections, lung congestion, muscle atrophy, and blood clots.
Things to keep in mind for providing caregiving to a person with late-stage Alzheimer's disease:3
- Maintain light in the room during the day to help prevent sundowning
- Encourage social interactions
- Change the person’s positioning every two hours
- Serve meals at the same time each day, free of distractions
- Give one food at a time, prepared in a way the person can eat it (small bites, chopped up, pureed, etc)
- Liquid thickening agents to prevent aspiration
- Use soft bedding that is breathable and is moisture absorbent
- Use wedges to help maintain comfortable positions
- Change bedding regularly if wet or soiled
- Encourage movement as much as possible
- Elevate the head of the bed to allow better aeration of lungs
- Prevent constipation
- Ensure the person's dentures fit properly, as poor-fitting dentures can cause feeding problems or pain
- Feed high-calorie food and drink with adequate nutrition, especially if they aren't eating a lot
- Go slowly at mealtimes to avoid choking or overwhelming the person
- Check for pressure sores and bedsores
Especially during late-stage Alzheimer's disease, family members or caregivers should stay in contact and keep lines of communication open with the person's doctor. The doctor can assist with information about safe transfers while caregiving, what to do as mobility decreases, ways to feed the person as their eating and swallowing abilities decrease, and things to look for as the person loses control of their movements and muscles.
If the individual has any other medical conditions, staying in touch with the doctor is especially important, in order to avoid any complications from other health conditions. The doctor can also help with deciding on end-of-life care decisions like hospice, depending on the individual's wishes.
Taking care of someone with late-stage Alzheimer's can be challenging, and caregivers need to take care of themselves, as well. Finding a support group, either online or in-person, that can help navigate this experience and provide a supportive space can be a much-needed relief.