Everyone 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:
Avoiding Drugs as Chemical Restraints: Emphasizing Good Care
- Allen Wagner, who has been prescribed antipsychotic drugs for years (4-minute video, credit to Human Rights Watch)
- Lois Benkula, who improved after she stopped taking antipsychotic drugs (3-minute video, credit to Human Rights Watch)
- Bobby Tweed, who died within a year of being given a cocktail of drugs that included multiple antipsychotic drugs (15-minute presentation)
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.
All Behavior Is Communication
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. |
Person-Centered Care Practices
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.
A Person-Centered Daily Care Routine
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:
- Speak in short, simple sentences.
- Keep instructions very simple and repeat them frequently.
- Be gentle in how you approach and provide care.
- Describe what you are doing or going to do.
- Don’t rush the person.
- Avoid negative words like “don’t” and “no.” Say, for example, “try to hold the toothbrush this way” rather than “don’t hold the toothbrush like that.”
- Don’t use elderspeak, which has been shown to make people with dementia even more resistant to care activities (example: “Are we ready for our shower, Sweetie?”).
If the person becomes very upset during the care activity:
- Stop the activity.
- Step away from the person so they have some space.
- Apologize, even though you didn’t mean any harm—an apology may help defuse the situation.
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.
A Person-Centered Environment
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:
- Lighting: Are the lights too bright? Too dim? Are the lights left on when the resident would prefer them to be off? Are the window shades open or drawn when they would prefer the opposed? Make sure to ask and respect their choices.
- Room temperature: Is the room too hot or cold for the resident? If the room temperature can be adjusted to make them comfortable, it should be. If it can’t, consider their clothing. Do they need a sweater or a blanket, or do they want their sweater or blanket removed? What feels warm to one person may be too hot or too cold to another.
- Noise: Is the noise level in the room disturbing the resident? This can be highly individual. Some people may be used to a certain level of noise – they may have listened to the sounds of the street from their window in their last home or they may be used to having the television or radio on in the background. Maybe the room is too quiet for them. Alternatively, some people may prefer quiet – if their door is open the sounds from the hallway may be bothering them or if their television is left on, it might be disturbing them. Consider each resident’s needs and preferences and try to honor them. Resource: On noise
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.
Re-Direction
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:
- Asking them to help you do a task, such as folding washcloths, or sorting papers
- Offering them a snack, which should be a food the person enjoys
- Inviting them to walk with you
- Diverting their attention to a picture or looking out a window
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.
Reminiscing
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:
- “What was high school like?”
- “What was your first car?”
- “What was your favorite treat as a kid?”
Some tips:
- Use a photograph to spark the discussion.
- Sit at eye level with the person.
- To keep the person talking, ask “what happened next” or encourage them to “go on.”
- Don’t rush the person.
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.
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. |
Purposeful Activities
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:
- Someone who fished: If the dementia is mild, give them a tackle box (with plastic contents) to organize. If the dementia is more advanced, provide a fishing magazine or video.
- Someone who likes to create art: If holding a brush is difficult, encourage them to paint with their hands or with sponges. Or provide clay.
- Someone who likes to cook: Have them help on tasks such as stirring batter.
- Someone who had cared for an infant and enjoyed that: Offer a baby doll. (Watch this 4-minute video.)
Ways to Re-focus and Reduce Distress
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
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
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.
Aromatherapy
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
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).
- CaringKind’s booklet Finding Comfort Living with Advanced Dementia in Residential Care
- CaringKind’s booklet Palliative Care for People with Dementia: Why Comfort Matters in Long-Term Care
- The Department of Veterans Affairs’ 20-minute video Agitated Behaviors Among Older Nursing Home Residents (includes examples of how to respond)
- The Hartford Institute for Geriatric Nursing’s Try This reference guide Avoiding Restraints in Hospitalized Older Adults With Dementia
