Hospital visits: Supporting a person living with dementia

As the old saying goes, “It’s not a matter of if, but when.” Unfortunately, for older adults and people living with dementia, a hospitalization is more often a matter of when. Do you have an emergency hospital plan in place? Being prepared can make the experience less overwhelming.

Being in the hospital is stressful for most but especially for people living with dementia, who may exhibit anxiety, agitation, aggression and resistance to care. Medical tests, procedures and treatments can be overwhelming and frightening. A person with dementia may be unable to communicate concerns or feelings of pain. COVID-19 has made caring for your loved one in a hospital setting especially challenging when visits or staying by their bedside is limited or prohibited. All of these scenarios can increase a person’s stress level and confusion, making it very difficult to function as usual.

Planning ahead and having a thoughtful care plan prepared in case of a hospital stay can provide the best outcome for a person with a chronic condition or a person with dementia. Following are some helpful suggestions to assist you in being prepared for a hospitalization.

Prepare instructions for staff. Provide a list of the person’s current health care providers with phone numbers and current medical conditions. Also, provide a complete medication list which includes over-the-counter vitamins and supplements. A list of emergency contacts with relationship and phone numbers is important information to provide. Be sure to list if your loved one wears glasses, dentures, hearing aids, or uses a CPAP machine.

Favorite things and comfort items. What does a typical day look like for your loved one? Include their daily schedule, sleep patterns and favorite activities. Be prepared to bring some familiar objects for your person to hold or look at. Include items that bring comfort or a diversion such as a favorite snack, a small photo album, music player with earphones, or deck of cards. It will be helpful if you can complete the menu requests, and let the staff know about food and fluid likes or dislikes.

Strategies for communication. Be aware that hospital staff want to provide the best possible care; however, many do not have the specialized training needed to care for people living with dementia. Share the best way to approach your person and give them tips on how to communicate effectively. For example, they should always approach the person from the front, getting within the person’s visual range, identify themselves, and call the person by name. Encourage them to connect by smiling and extending their hand to connect in a positive way. Ask staff to limit quizzing the person or asking, “Do you remember?”, which can trigger agitation and confusion. Encourage staff to speak slowly, especially when giving directions and allow extra time for the person to respond.

Be an advocate. You will need to advocate for your partner; they cannot do it for themselves. Hospital staff may not recognize if your loved one is in pain, especially if your partner has difficulty communicating verbally. You’ll need to advocate for their care when it comes to making sure his or her pain is evaluated and addressed. Some expressions of pain can be confused with anxiety or agitation such as pacing, wandering, clenching teeth or fists, or hitting. Other signs to report can include moaning, grimacing or more labored breathing.

In addition, immediately notify the nurse if your care partner has a sudden change in thinking or ability. Medical problems such as fever, infection, medication side effects, pain and dehydration can cause delirium on top of their dementia, which is an extreme state of confusion and can cause serious complications.

Finally, be sure all the hospital staff know that your loved one has dementia and offer different techniques to keep them calm if they become agitated, such as using soothing music or practicing redirection.

Hospitalizations during COVID

If your loved one has advanced dementia and needs to be hospitalized, the Centers for Disease Control and Prevention recommends that hospital staff know that your in-person assistance may be required to communicate important health information and emergency support. Be prepared to use personal protective measures if you are in the same room with your loved one. Check with the hospital on their visitation risk level system. These risk levels are based on COVID activity in the community and can change daily.

We don’t know when a hospitalization may happen, but thinking ahead and making a plan will help ease the way for you and your loved one when it does happen. We all want the best possible hospital experience and outcome for the person living with dementia -- and for you too.

Linda Shepard is a registered nurse and an Education Specialist with Alzheimer’s Resource of Alaska. Learn more about Alzheimer’s disease and related dementia by visiting or call 800-478-1080.