Specialized Information for:
Long-Term Care ConsumersFamily MembersAdvocatesCOVID-19Everyone who enters a nursing home deserves quality, person-centered care that meets their needs. For too many residents, however, particularly those living with dementia, expressions of distress – often exhibited by agitation, aggression, or other forms of “acting out,” are addressed with antipsychotic drugs in order to stop the problem “behavior.” These drugs, however, don’t address the root cause of the problem the resident is experiencing, and instead can have serious, life-threatening side effects for older people. A few stories:
Very often, the symptoms, or behaviors, exhibited by residents are their way of telling caregivers that something is wrong, or that they need help or attention. By anticipating or addressing the cause of the distress – pain, fear, anger, tiredness, for example – the resident gets what they need, and they are less likely to exhibit the challenging behaviors. On this site, one will find information related to this issue, including non-drug interventions.
For the person living with dementia, all behavior is communication. When the person is acting in a way that indicates distress, the cause of the distress is that something is bothering them, which they are having a difficult time communicating.
Below are examples of what may be occurring and some possible underlying causes:
What the nursing home observes |
What might be happening |
Find the reason for her actions, such as: |
---|---|---|
Your mother is “hitting” a staff member |
She may be startled or afraid and feel the need to defend herself. |
A staff member comes into your mother’s room early in the morning while she’s still asleep, pulls the blanket off of her, and begins pulling her clothes off to clean her up and get dressed for the day. Your mother is startled and may push or hit them away in, from her perspective, self-defense. |
Your mother is crying out and disturbing other residents at night. |
She may be in pain or afraid. |
Your mother is crying at night because she is in pain and is unable to ask for pain medicine or gets cold easily and needs another blanket but doesn’t know how to ask for one. |
Your mother is unsettling residents, getting too close to them, and touching them. |
She may be confused, worried, seeking comfort |
Your mother may be looking for her family. She doesn’t understand where you are and touches another resident thinking it may be you. |
Care for all residents should be person-centered based on their individual needs. What works for one person with dementia may not work for another. On this webpage, we use the word “distress” rather than “agitation.” The former implies peril, which should be addressed. The latter implies misbehaving or acting up, which some people might say is best ignored. Do not ignore the behaviors of someone living with dementia; respond to them.
Also, please tell us about other alternatives that you have found to be successful or additional information on the alternatives below so that we can share them on this page.
Personal care tasks—particularly bathing—can be distressing to people living with dementia. They may not understand what is happening to them, or may object to the way care is being provided. For example, getting water in the ears or poured over their head can confuse someone with dementia and make them upset.
Some things to keep in mind when helping a person with dementia during these activities:
If the person becomes very upset during the care activity:
For examples of providing daily care for people with dementia, visit the Alzheimer's Association Daily Care webpage, or the Family Caregiver Alliance Caregiver’s Guide to Understanding Dementia Behaviors.
Every resident deserves an environment where they are comfortable and able to thrive. When a resident seems distressed, consider whether something about their current environment might be bothering them and adjust accordingly:
For examples of providing a person-centered environment, visit Sensory for Dementia's webpage on 10 Sensory Considerations in Dementia Care, or SCIE's webpage on Dementia-Friendly Environments.
Even when a resident is receiving person-centered care, they still may experience distress. There are many ways to work with residents to help them refocus and re-direct. Different methods may work better for some residents than others. It’s important to consider each resident's likes, dislikes, and background.
The best re-direction is one that has the person engaged in something they enjoy. Examples of ways to distract a person, or give them an alternate activity, include:
Note: If the person has become distressed because they are anxious about something that does not appear to be a real issue, treat it as if it were a real issue and reassure them that it’s being taken care of. Don’t argue or correct them. For example, if the person insists that they have to pick their child up from school, tell them that you have arranged for their spouse or another trusted adult to pick up the child.
Talk to the Resident and FamilyPerson-centered care means learning about each individual resident’s likes and dislikes. Talk to the resident and their friends and family members to find out:
Related Resource: The My Personal Directors form that can be used to learn more about a person. |
Older people living with dementia often can remember the past better than something that happened the same day. When a person living with dementia is distressed, reminiscing may help.
Examples of simple questions that can begin the activity:
Some tips:
Caveat: Some memories may sadden or otherwise distress the person, so first talk to their family about the person’s history before engaging in this activity.
The older person living with dementia is an individual who has a unique set of interests based on their life experiences. Activities that are meaningful to the person can reduce the distress that often accompanies dementia—and improve their quality of life.
Examples of purposeful activities:
When re-focusing or comforting residents, remember every resident is different and what works for one person may not work for another. Person-centered care means determining, in advance, which methods will likely help a resident in distress. For example, knowing whether an individual resident likes animals, or dislikes being touched, can inform how you choose to assist a resident. As noted above, this can be determined by talking with residents and their families to learn about their likes and dislikes.
Touch can be soothing for a person living with dementia. Some people are calmed by stroking a piece of soft fabric. Some people relax when holding a caregiver’s hand. Simple massage has also been shown to significantly decrease distress.
Providing comfort can include dolls, stuffed animals, small pillows, lap blankets, robotic animals, or service animals. For example, spending time with a gentle animal—whether it is one that visits or one that lives with the person with dementia—can release relaxing endorphins and lessen feelings of loneliness. If the person’s physical condition allows, an animal can also offer opportunity for movement—e.g., stretching to pet an animal or walking a dog.
Inhaling the scent of lavender and lemon essential oils has been shown to reduce distress in people living with dementia, at least in the short term, and to help with sleep disturbance. Aromatherapy can be provided via bedside diffusers, sachets, and skin creams.
Music can often soothe people. Create a personal playlist (a compilation of songs a person enjoys) for the residents who enjoy listening to music or having music on in the background. There are simple music players and a website that offers guidance (Music and Memory) on creating a personalized playlist. You can also inject music into the day by softly playing music from the radio, or inviting residents, staff, or community members to sing or play an instrument. Music therapy programs have been shown to decrease, in the short term, distress and apathy in people living with dementia. Watch stories of how music can assist residents: Betty (final 3 minutes of a video), Henry (6-minute video), and Marta González (2-minute video).