November 24, 2017
Living with dementia can be a lonely experience—not just for the patient, but for the caregiver, too. To help you through your most challenging moments, we’ve enlisted the expertise of Pat Brown, Admiral Nurse for Dementia UK, a charity organization of trained nurses who deal exclusively with dementia, providing one-on-one services to families and individuals. She answered your questions about dealing with aggression, personal care and hygiene of dementia patients and how to make the transition to a care home as smooth as possible.
Q: “How do you deal with an aggressive loved one? How do you calm them?”
A: Behavior that can seem ‘aggressive’ is usually the result of someone with dementia trying to communicate their distress in what can be verbally or physically challenging ways for the caregiver. It’s important to remember that the person is trying to express what they want or need with their behavior, so we need to explore what may have triggered the distressed behavior. Most of us can explain why we’re feeling or doing something, but dementia can make this difficult for the person to say in words. Behavior that challenges the caregiver and others (for example, shouting) can often happen because the dementia is preventing them from being able to explain that they’re frightened, in pain, disorientated, unwell, not feeling “right”(as a result of side effects of medication), sad or distressed.
Unfortunately, there are no quick or stock answers for how to deal with this. The best approach is one that’s individualized to meet the unique needs of the person. A good starting point is to acknowledge the person’s distress and ask them what’s wrong to get a sense of what they’re experiencing. If the person with dementia feels that someone isn’t noticing that something is wrong or ignoring it by talking about something unrelated, their sense of frustration can increase and their behavior may appear to worsen. So, it can be helpful to acknowledge that you have noticed that they appear upset or annoyed before trying to calm, reassure or redirect them. This is called the ‘validation’ approach and can help the person feel listened to and that their experience is validated.
Next, you can explore what may have happened before the behavior (a trigger, for example) to see what might have caused the distress. For example, if the distress was triggered during dressing, it might have been caused by pain from moving, feeling too cold or confusion due to poor communication. All of these are undesired experiences that the person may be trying to communicate. If you can find the cause of the distress, then you can try to make sure it doesn’t happen next time.
If the person is getting very angry and safety is an issue, then you can tell them that you’ve noticed they’re angry, that you respect this, and will leave the room and come back in a few moments (provided they are safe). If there’s a risk to your safety or theirs, you may need to contact emergency services.
Q. “How do I deal with a mom who refuses to wear her disposable underwear (but she throws her regular underwear away) and then goes naked from the waist down? She is into late stage and getting pretty feisty, so she won’t let anyone at the nursing home help her.”
A: First, try to understand her individual experience by talking to her. She may perceive the carers who are suggesting she wears them as treating her like she can’t do this herself. What reasons does she give for throwing out her underwear? Could there be discomfort or chafing? It’s important to explore why this experience may be distressing or upsetting for her and ask yourself how a person without dementia might deal with a similar situation. How might their behavior be communicating this distress?
It may be helpful to arrange different undergarments for her, so that she can exercise some choice in what she wears. Could she wear one garment (e.g. a dress) instead of a top and skirt to preserve her dignity if the underwear is removed? As with aggression, every case will be different and the approach should always be based on the person concerned.
Q. “How do I leave my husband at his nursing home at six in the evening? I’m there all day. He gets sad, wants me to lay on the bed with him, holds my hand and sometimes says take me home.”
A: This is a common situation that carers often contact us about and is upsetting and exhausting to go through. My advice is to talk to the staff at the nursing home to find out what happens after you leave. Find out if your husband continues to be sad or can be distracted and involved with something that helps lift his mood. You may be reassured to hear that he doesn’t continue to be sad and you then can work with the staff to explore ways to reduce your own distress. This may involve reducing the length of time you’re visiting. You could also start a mutually enjoyable activity with your husband, then leave or pop out briefly and a member of staff can continue the activity with them once you’ve gone. It sounds as if you would benefit from some support as well, so try to find support or counselling services if they’re available.
Dementia UK provides specialist dementia support for families through their Admiral Nurse service and helpline. You can find out more about their services here.